Author: Katrina Villareal

Julie’s High-Risk Multiple Myeloma Story

Post author By Katrina Villareal
Post date April 24, 2023
No Comments on Julie’s High-Risk Multiple Myeloma Story

Julie’s High-Risk Multiple Myeloma Story

Julie’s initial symptoms were somewhat atypical for high-risk multiple myeloma.

She started getting food aversions, queasiness, and fatigue. She then visited her gastroenterologist who, after ruling everything out on his end, did some blood work, which showed that she was anemic.

After being sent to a hematologist, she got a bone biopsy and was eventually diagnosed with high-risk multiple myeloma.

She voices how she processed her diagnosis, how her disease progressed after different treatments and how she decided to be part of two clinical trials.

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Name: Julie C.
Initial Symptoms:
- Queasiness
- Food aversions
- Lack of appetite
- Fatigue
Treatment:
- Stem cell transplant with KRD induction therapy (Kyprolis, Revlimid, dexamethasone)
- Chemotherapy: D+PD (Darzalex Faspro, Pomalyst, dexamethasone)
- Talquetamab (clinical trial)
- Cevostamab (clinical trial)

It’s so important to take charge and have control where you can. You can’t control this disease, but you can control how you respond. You could become knowledgeable and make decisions.

Table of Contents

Introduction
Pre-diagnosis
- Initial symptoms
High-risk multiple myeloma diagnosis
First-line treatment
Second-line treatment
- Mental & emotional state
Third-line treatment
Fourth-line treatment
Final treatment & follow-up protocol
Words of advice

Introduction

I have two adult children: a 30-year-old daughter and a 32-year-old son and a wonderful husband. We’re going on 34 years together.

We are hoping to spend several months in Florida, which I haven’t been able to do before because of my treatment. It’s a real pleasure.

I love to golf, walk, work out, and travel. Although I didn’t do too much of that recently, I hope to get back to doing that.

Pre-diagnosis

Initial symptoms

Early July 2020, I was feeling queasy. I had a lot of food aversions and fatigue. I thought it was my stomach so I went to see my gastroenterologist. He did an endoscopy and had me get an MRI. He ruled everything out on his end, but he did do some blood work. He was concerned about those results and sent me to a hematologist. That’s when everything started moving along toward getting me diagnosed.

They weren’t the typical symptoms, as most myeloma patients have bone pain and other things so I guess that’s a little odd. Something was off in my body. I felt like I had morning sickness, but I knew that wasn’t possible!

I really am so grateful that he ordered the blood work; the hematologist took it from there. He had me come back for a couple of visits for more labs and then he said I needed to have a bone marrow biopsy. At that point, I knew something was really wrong. I felt it.

High-risk multiple myeloma diagnosis

We went in for the results. My husband came with me. The hematologist told me I had multiple myeloma. I didn’t know what that was. I figured it’s a blood cancer, but I’d never heard of it.

My initial feeling was, “Okay, tell me what I need to do to get through it and get cured. I’ll do whatever I have to do.” Little did I know what was ahead of me.

He generally described what it was. I had lambda free light chain and I had 80% plasma cells. He didn’t get into too many of the specifics, but he referred me to a top myeloma specialist who happened to be about 30 minutes away from me.

My myeloma doctor went into great detail about my disease. He was writing on a chalkboard. The most important thing is t(14;16), translocation (14;16), and beta 2 microglobulin of 6.2. I’m saying, “What?” He says, “You have a high-risk disease,” which he got into a little bit.

He explained that people who have certain cytogenetics with the disease may progress quicker from their remissions, have a shorter duration of response, and the disease could be a little more aggressive. He explained all of that as it related to how he was going to treat me.

Reaction to the diagnosis

Of course, I did what you’re not supposed to do: Google everything. What is high-risk multiple myeloma? What does it all mean?

All of the terminologies you read on Google are not good because they talk about progression-free survival. What is that? “Wow, am I not going to make it? Am I going to have only three years? What does this all mean?”

I was fearful. I was fearful of what was to come. I needed to understand it.

I did a lot of research after that appointment. I went online — The Multiple Myeloma Research Foundation, the International Myeloma Foundation, The Lymphoma & Leukemia Society — trying to get as much information and learn as much as I could, which was helpful to me.

I wanted to have some control in a situation where you don’t have control.

Breaking the news to the family

My kids were actually living with us at the time because of COVID. I explained it to them. I said, “This is treatable.” I didn’t tell them it’s not curable.

My family’s been incredibly supportive. My husband, especially during the induction period, was with me at every appointment. He was understanding. He was totally, totally supportive. I’m very grateful for that.

First-line treatment

Discussing the treatment plan

My myeloma specialist explained the induction therapy. He recommended KRd: Kyprolis, Revlimid, and dexamethasone. Then I would go for a stem cell transplant.

Because I was high-risk, he was planning on a tandem transplant, which would happen three to six months after my initial transplant.

I trusted him. My sense was when you’re first diagnosed, there’s a standard regimen to have induction therapy. My impression was there were a couple of drugs you could change up. He said that regimen would be best for high risk and I trusted that.

Getting a second (and third and fourth) opinion

Incidentally, I did get a lot of opinions early on before I decided on going to Hackensack University Medical Center in New Jersey. I had a consultation from one of the big hospitals in New York. They agreed that was a good treatment plan as well.

I know myself. I need to get all of the information. I need to feel comfortable. It is just my personality, really wanting that reinforcement to know I’m making the right decisions.

During that first year after I was diagnosed, I probably had four or five myeloma specialists, very well-renowned people, where I had second, third, and fourth opinions. Whenever I had to change a drug regimen and make decisions, I wanted to get input.

There are a lot of options for myeloma. Everybody’s myeloma is different and it can be treated in lots of different ways.

Induction therapy

I started my treatment in October 2020. My last treatment for induction finished in December.

I started preparing for the stem cell transplant at the end of December.

Side effects from the induction therapy

I actually only had two cycles of induction. One of the reasons was that I was getting fevers. Whenever I had the treatments, I would always have a fever the next day.

The first one was like 102°F. I would take Tylenol and it would go down. Subsequent ones weren’t as high, but the doctor was concerned about that.

They weren’t sure what caused it. They think it may have been the Kyprolis but they weren’t sure.

I had night sweats with the induction. I just changed my pajamas often!

Preparing for stem cell transplant

There’s a special stem cell transplant doctor who handles the transplants. It’s a whole process where they need to collect the cells.

In order to stimulate the growth of the stem cells, I was taking Zarxio probably eight or ten days in a row, giving myself injections. After, I had to get chemo.

They told me I would lose some hair in that process. I chose to get a short haircut at that time in order to ease that feeling of losing my hair.

They collected the stem cells. A week or two after, I was admitted to the hospital and they put in a central line.

I received melphalan, the high-dose chemo, the next day. I was admitted for about 12 days in the hospital.

Post-stem cell transplant

I ended up not having the tandem. I did not sustain remission after my stem cell transplant. My doctor said it happens to only about 10% of patients.

Three months after my stem cell transplant, I had progression of disease. I don’t know the medical reasons.

They weren’t going to proceed with a tandem stem cell transplant since I didn’t sustain the first one.

Reaction to the stem cell transplant not working

The first year after my diagnosis was really difficult. I didn’t sustain remissions and I understood that that was not like most people.

I was worried. Will I find something that’s going to work?

I was meditating. I was trying to become more spiritual. This was all during COVID so I was home. It was challenging emotionally.

Conversations with the family

Everybody was really supportive. My kids were fabulous. My siblings and mother live in different cities. They were always calling me to see how things were going.

I gradually started telling more people in my circle of friends about my disease. I would have Zoom calls with friends who I hadn’t talked to in months. There were a lot of positive things with that.

I established a relationship with a nurse navigator at the MMRF who was a godsend to me. She was always there for me to talk to if I needed to get another opinion or her thoughts about medications and whatnot.

I also have a myeloma coach who’s fabulous, who I initially spoke to quite a bit during COVID asking, “What could I do to pass the time?”

Second-line treatment

My myeloma team recommended a standard-of-care regimen, which was daratumumab, Pomalyst, and dexamethasone. At that point, I received a lot of opinions from other myeloma experts to really see if this should be the route. That was the route I took.

We started on that regimen. I was going to the hospital every week at that point.

They gave me Revlimid the first week because I had to get the insurance company’s approval for Pomalyst. For one week, I had Revlimid then they switched over to Pomalyst in that three-drug combination.

I had two or three cycles and then I started progressing again. Another decision point.

Mental & emotional state

I did respond initially but then the disease started progressing after that. Emotionally, I was scared. Will we find something that’s going to work?

I went for a consultation in New York City. I’m very fortunate to live in the New York City tri-state area with some top hospitals that are accessible to me. I know a lot of people in the country don’t have that. I was very lucky to be able to get in-person appointments with some of these specialists.

I went to Memorial Sloan-Kettering. The doctor there concurred with my doctor at Hackensack, agreeing on what the next thing should be. We talked about adding selinexor to the mix or going on a clinical trial. The decision point was shall I go on selinexor or go on a clinical trial.

They talked to me about the side effects of selinexor. I asked for their recommendation. The majority thought a clinical trial would be the best thing for me.

Third-line treatment

Exploring a bispecific clinical trial

It was the hot new area. A lot of developments and a lot of buzz. I didn’t know a lot about it. I didn’t understand immunotherapy or bispecifics but later it was explained to me.

I trusted my doctors. They thought the clinical trial was the best route. I did put trust in them.

I can’t say there was one thing that they said that made that decision for me other than feeling like they all felt it was the best thing for me to get on to a clinical trial.

At that point, Hackensack was trying to find me a clinical trial there, but they didn’t have anything available for me. One of the doctors on the team told me to talk to one of the top people at Mount Sinai, who’s still my doctor, about clinical trials.

I had a Zoom call with him and he said, “We have a clinical trial for you that you’re eligible for and it’s called talquetamab.” He discussed it with me, explained what the bispecifics were, and I ended up getting into that trial at Mount Sinai.

Joining the talquetamab clinical trial

You go through a screening process. You meet with the research nurses and the doctor. They let you know about the side effects. I was well aware of what those would be.

The screening was a couple of hours. They go through a lot of specifics with you about the trial and what’s involved. A lot of information. Then you sign a 35-page consent form.

My husband and I talked about it but not with the rest of my family.

I did have an idea about clinical trials from some myeloma support people. I figured five years from now, maybe I’d need one. I didn’t realize my disease would be that aggressive and moving so quickly.

I had spoken to other patients that my coach had put me in touch with who had the same cytogenetics as me. I wanted to reach out to people who had similar myeloma.

I did speak to a couple that had been on clinical trials and had myeloma for 20 years. Some of them were on the Revlimid trial and they talked to me about what that felt like.

I felt very comfortable participating in that way, that it could help other people and, hopefully, help me.

I started the testing at the end of August then I was admitted. You have to go into the hospital for the first couple of weeks for step-up doses so that was in September.

I was on it for two cycles and then my disease started progressing again.

For this particular trial, you stay in the hospital for 10 days. You’re admitted to the hospital because one of the side effects is cytokine release syndrome or CRS, which happens with these bispecific antibodies. Your body has to adjust to the drug and they have to treat you for the CRS in the hospital.

Experiencing cytokine release syndrome (CRS)

I had grade 1. It wasn’t horrible.

It happened the day after I received the first treatment. I had a fever and feeling like I have some sort of virus. They gave me tocilizumab. Immediately, the fever went away. It was a miracle drug.

Side effects of talquetamab

They told me that some of the side effects would be related to the skin, the hair, and the sense of taste. I experienced all of those side effects.

They had many patients on that trial in Mount Sinai. I had loss of taste and dry mouth. My fingernails split and fell off. The top layer of skin on my hands and feet came off.

It was difficult with those side effects. But I knew what the risks were. I knew I could possibly get them.

It seemed pretty quick. Within the month, the first thing I noticed was my hands got very opaque and then the skin started peeling.

The dry mouth came later. The loss of taste a little bit later. There was a little bit of a delay in the nails. They got worse gradually.

Nothing resolves them. They don’t go away.

Managing the side effects

The nurses were very good about giving me some over-the-counter things that worked.

There was a patient who was also on the talquetamab study, a woman about my age. She was willing to talk to other patients. We bonded.

She told me about creams, lotions, and things she used that helped. One was a prescription, Biotène for my dry mouth. There were some lozenges.

There was support there. The research nurses are all fabulous about giving you that information.

Bispecific antibodies for multiple myeloma

Talquetamab was twice a month. There would be a pre-treatment of Benadryl and Tylenol. I would get the medicine through IV, which would last a few hours. I stayed afterward for observation then went home. That was every couple of weeks.

It was a full day because when you start the day, first they take your labs and you have to wait an hour for the results. If your blood counts are good, they proceed. The pre-meds are an hour before you get the infusion so you’re waiting for that.

Basically, I looked at it as time to just hang out and watch the latest movies on Netflix. It was kind of a relaxing day.

Discovering plasmacytomas

When I was diagnosed in October, they found a couple of plasmacytomas from the MRI I had. I had a plasmacytoma in my pancreas as well as in my manubrium.

At the time, they weren’t sure it was a plasmacytoma on my pancreas. They weren’t going to do a biopsy; that was too invasive.

After my induction therapy, the tumors shrunk. They realized they were plasmacytomas most likely from the myeloma.

When I was inpatient for talquetamab, one of the side effects was very intense pain in my abdomen. The doctor explained that the medicine was targeting the pancreas because that was where I had this plasmacytoma, which I thought was fascinating.

Fourth-line treatment

As soon as I started seeing my numbers going up a little bit, I was alarmed. I wasn’t waiting till they got to the level they said is progression of disease. It was close.

I talked to my doctor. He recommended another trial, another bispecific called cevostamab. I asked for another opinion from another myeloma specialist and was actually considering going on a different bispecific antibody trial.

Each bispecific antibody has a different target. There’s BCMA, which probably many patients have heard about with CAR Ts. Talquetamab has a different target and cevostamab has yet a different target.

I was contemplating: should I go on a BCMA bispecific? Is that something I should consider?

My doctor at Mount Sinai said, “Look, there are only five slots for cevostamab at Mount Sinai. There’s one slot that opened up and you could have this slot.” He thought I should take it so I took it.

At that point, I was so uncertain about what would work so I went on the cevostamab trial.

Joining the cevostamab clinical trial

I don’t think I had to do all of the pre-tests because some of them were still good from the last study. They did require a brain MRI so I had that.

I was anxious to see if I was going to respond to this medicine. The only thing I was focused on was: am I going to respond? I was very anxious to see if it was going to work.

It was in December 2021. I was inpatient, but it was a different protocol from talquetamab. You’re inpatient three weeks in a row for only four days each time and then you’re discharged. They do step-up doses each of those three weeks, but you’re not there the entire time.

Side effects of cevostamab

I had CRS again. They treated that; it was fine.

I went home and I was on the schedule. This particular trial has an endpoint after 17 cycles. Each cycle is 21 days.

I was able to have three weeks in between treatments, which was wonderful. It was just great. The first time I had that kind of time span between treatments. We were able to go to Florida back and forth a little bit during that time and enjoy life a little bit so that was great.

COVID added some complications to that because I was fearful of traveling with my immune system the way it was. It was a wonderful feeling just being let out, being able to live my life.

Every three weeks, I went in for an infusion. There’s an endpoint to this trial. I think it’s the only trial where there’s actually an endpoint.

After 17 cycles, which actually equates to a year, you’re done with the treatment. That’s the protocol of this particular trial.

It was a pleasure not having to be at the hospital every week or every other week. Going once every three weeks, I knew that I had a full day there. I became friendly with the research nurses and all of the people there. It was my routine, but I was able to live my life in between that.

I also didn’t experience the kind of side effects I had with talquetamab. With cevostamab, I didn’t have any side effects where I felt badly. I felt fine.

My neutrophil count would come down and I had some neutropenia. I would have to have the Zarxio periodically throughout the treatment. I wasn’t tired. I didn’t realize it, but they were keeping on top of that.

During one of the cycles, they actually withheld treatment because of my white blood count. My neutrophils were low but that was it. Other than that, I felt fine through this process.

I was very grateful because I responded immediately to this drug.

Feeling hopeful

One thing I felt quite good about is the doctors said to me that these bispecifics act differently than other drugs. People are sustaining remissions. They’re long, durable responses. I felt that gave me some hope.

I actually connected with a woman who was on the cevostamab trial, one of the very early, early trials. She was off of the drug already, maybe a year and a half, and she was still in remission. I was hopeful hearing that.

Reassurance from another myeloma patient

It was wonderful. I found this woman from an article she wrote on one of the myeloma support websites and they were able to give me her contact information. She wrote about being on the cevostamab study and we had a phone conversation.

It was just reassuring. It’d be nice if people could reach out to each other on these trials, but I know there’s a lot of confidentiality there.

Final treatment & follow-up protocol

My final treatment with cevostamab was on December 1st, 2022. I’m in stringent, complete response, MRD negative, which I’ve been in since early spring. So knock on wood, I’m really hopeful and grateful.

I’m able to be in Florida. I just have to submit my labs once a month to Mount Sinai, go back for an in-person visit once every three months, and get a PET-CT. I’m very grateful right now.

Managing anxiety

I’m happy. I want them to be on top of it. I did ask my doctor recently, “Will I have to get the PET scans every three months indefinitely?” He wants to keep them going.

I have extramedullary disease and they want to make sure nothing is happening on that end that would show progression of disease. I hope to get to a point where I don’t need to go every three months for that, but I understand.

I accept the fact that it’s a chronic illness. I realize on an intellectual level that there could be remission. There could be periods where I fall out of remission. I have relapses.

Right now, emotionally, it’s hard to go there and I don’t want to think about that. I feel good now. I guess when that happens — if it happens — I’ll deal with it. I’ve accepted that intellectually. Hopefully, emotionally, I’ll be okay with that as well.

Importance of clinical trials

I am such a proponent of clinical trials right now. It’s a wonderful option for people that have an aggressive disease like me, who are not able to sustain remissions. I trusted my doctors that these were the best decisions for me.

Some trials are newer than others so they have less data. Cevostamab did not have as much data. I would ask questions about certain side effects and they just don’t know everything yet. I was told, cevostamab will be hopefully FDA-approved in 2025 so there’s still a way to go. One bispecific is already FDA approved.

There are so many options for patients. Early on in my diagnosis, I just didn’t really know if anything was going to work. I was worried that nothing would work for me and I am so grateful that I was on the trials. Unfortunately, one didn’t work, but I’m still happy that I participated.

You also get a lot more attention when you’re on a clinical trial. At Mount Sinai, you get your own private room.

It’s always an important conversation to have with your doctor. The clinical trials could mean the difference in your disease and getting better.

Words of advice

Everybody should feel comfortable getting second, third, or however many opinions they feel they need. If the doctor that they are seeing does not support that, I think that’s a problem.

I did tell my doctor I was getting these opinions as I was doing it and he was fine with that. I think everybody has to feel comfortable, whatever they’re comfortable with.

I always took half a Xanax before a bone marrow biopsy. It was quick. The good news is it doesn’t take long so it’s uncomfortable for a couple of minutes and then it’s over.

I personally like the doctor telling me what they’re doing so I’m prepared. It’s important. Then breathe.

I made a point to walk the halls almost every day when I was inpatient. In Hackensack, they have a completely isolated ward for the stem cell transplants where nobody was allowed in and maybe that was because of COVID. I was able to get out of my room and walk the hallways.

In the hospital, the days just went by. I had some Zoom calls with my family. I can’t even remember everything I was doing. I didn’t feel like doing a whole lot. Watching Netflix shows and so on.

I actually took a course on Coursera on how to analyze research studies, figuring that could come in handy for me with my diagnosis. It got very technical, but I did that.

It’s so important to take charge and have control where you can. You can’t control this disease, but you can control how you respond. You could become knowledgeable and make decisions.

I don’t think there’s anything wrong with getting second, third, and fourth opinions if that’s what you feel comfortable with. Doctors are happy to do that. They really are. Every doctor I spoke with gave me different insights.

Seek out all the information through all of the wonderful resources and nonprofits that we have for myeloma. There are a lot of people out there who want to help so I’m grateful.

I want to help people with my experience and I’m hoping that people can gain some knowledge from my experience.

Thank you for sharing your story, Julie!

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Gastrointestinal Medical Experts Medical Update Article

Lynch Syndrome: What Patients Need to Know

Post author By Katrina Villareal
Post date April 14, 2023
No Comments on Lynch Syndrome: What Patients Need to Know

Lynch Syndrome: What Patients Need to Know

A Q&A with Lynch syndrome specialist, Michael Hall, MD, MS

When Jackie was diagnosed with 3B/4 adenocarcinoma, her GI doctor suggested she may also have Lynch syndrome, a condition that increases the risk of developing numerous cancers. Families with Lynch syndrome typically have more family members who are diagnosed with various cancer, according to the Mayo Clinic.

After a genetic test, the condition was identified in Jackie’s results and she became the first person in her family to identify Lynch syndrome in her family’s DNA.

To better understand Lynch syndrome and how to test for it early, The Patient Story spoke with Dr. Michael Hall, a medical oncologist at Fox Chase Cancer Center.

He is the chairman of the Department of Clinical Genetics and co-leader of the Cancer Prevention and Control Program, one of the cancer center programs at Fox Chase composed of various researchers.

In this conversation, he discusses Lynch syndrome, what cancers patients would be more at risk for, and who should get tested.

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Table of Contents

Introduction
What is Lynch syndrome?
Conclusion

Lynch syndrome is common enough that I think any young patient or any patient who has colorectal cancer, if not now but in the near future, really should be tested for this syndrome.
Dr. Michael Hall

Introduction

How did you get into medicine?

My mother was a nurse and I just found the stories of medicine interesting and compelling. I took a couple of years off after undergrad and realized that it was definitely what I wanted to do.

I went to medical school at Columbia. Spent some time in Boston for my residency, [in] Chicago to do some training for fellowship, and then, ultimately, matured into an oncologist.

Since I became a full-fledged oncologist, I’ve worked at a couple of places. I was at Columbia in New York for a few years, got some great mentorship from the cancer epidemiology team, and got my first grant.

Then I became interested in Fox Chase. There were a number of people who were working in this area of hereditary genetics, cancer, and Lynch syndrome. At that point, I recognized a great opportunity.

I was also a little tired of living in New York so it ultimately all worked out. I moved and I’ve been at Fox Chase since 2008.

How did you get into Lynch syndrome?

My interest in genetics and Lynch syndrome started during my fellowship training at Chicago. I was mentored by a giant in the field, Funmi Olopade. She was a major force in BRCA1 & BRCA2 research.

I was interested in being a GI (gastrointestinal) oncologist. She said to me, “If you’re going to be interested in GI oncology, you need to get interested in the GI syndromes then.”

I started out being interested in pancreatic cancer. Then that evolved over time to GI syndromes, like Lynch syndrome and FAP (familial adenomatous polyposis).

What’s been amazing about Lynch syndrome research is when I first started in this field, everyone looked at Lynch syndrome as incredibly rare. It’s good to have one person at the center who knows a little bit about it, but you’re probably never going to see it. No one knew anything about MSI (Microsatellite Instability) testing, IHC (immunohistochemistry), or any of those things.

In just a few short years, we’ve seen Lynch syndrome with the emergence of immunotherapy, with some great research coming out of the Australian group and an Ohio State group. This disease is actually incredibly common in the population.

The total turnaround has been really an eye-opener to me about how much science can change over a short period of time. It also has opened up a big opportunity for us to identify a large swath of the population who have this very common risk that we can actually do something about. That’s been really inspiring as well.

Whenever you’re in a research area, it brings you together with other folks who are interested in that same area and that’s led to a wonderful peer group that I’ve developed over the years. Everyone [is] focused on this same goal of addressing Lynch syndrome, hopefully making the lives of our patients better.

What is Lynch syndrome?

Lynch syndrome is a risk. It’s like driving your car without a seatbelt. You can, you could drive all over town without a seatbelt on and never have something happen to you. But Lynch syndrome is if you did have an accident, something could happen.

This is an inherited risk in one of four genes that we know are related to editing and repairing small mistakes that get made in an individual’s DNA. When that DNA is being replicated or gets damaged, usually it’s because when our cells replicate, that has to happen very quickly. We have billions and billions of cells so those enzymes, that are in place to replicate our DNA and form two new cells, have to work really fast.

They make mistakes along the way. Human beings have a lot of amazing backup pathways. If those mistakes get made, there are groups of genes and enzymes that come in to repair those mistakes.

Lynch syndrome is one of those families of genes called the mismatch repair pathway. There are very specific times when our cells and our bodies need that pathway to work. Individuals with Lynch syndrome have a risk that that pathway can get disabled.

If that pathway gets disabled, there can be an accumulation of small mutations that happen throughout important genes. That accumulation of mutations and the dysfunction of those genes ultimately can lead to cancer.

At the same time, what’s been discovered in recent years is that [the] pathogenic process of mutations accumulating is actually very, very distinct to people with Lynch syndrome. We’ve been able to harness that distinctness and the ability of our immune systems to recognize the tumor, the process of tumors forming in Lynch syndrome, to use immunotherapies to help our own immune systems basically turn on a Lynch syndrome cancer.

We’ve seen [this] in medical literature. I’ve had a number of patients in my practice. Examples now are all over the place of people who have metastatic cancer with Lynch syndrome [and] can be cured with immunotherapies. This, unfortunately, doesn’t happen for everyone, but the chances are actually pretty good.

This is how this syndrome works. It is basically a risk of accumulating these mutations. Again, if one is lucky, that risk may never play out in the formation of cancer. However, we know that risk is elevated compared to average-risk individuals in the population.

That accumulation of mutations and the dysfunction of those genes ultimately can lead to cancer.

What cancers would Lynch syndrome patients be more at risk for?

The classic group of cancers, especially colon cancer, is always going to be near or at the top of the list. There are these four, some people say five, genes that contribute to Lynch syndrome. Two or three of the genes are actually [at] higher risk to develop colon cancer. The other two genes are perhaps a little lower risk or later onset cancers.

Endometrial cancer is also at the top of the list, particularly for women who have uteruses. There are some families where endometrial cancer is actually the dominant cancer.

Then there are others, ovarian cancer [and] gastric cancer. We do sometimes see small bowel and pancreatic cancers. We can see cancers of the ureters and then there are some Lynch syndrome families who can get skin manifestations as well. They’re not cancers; they are growths that you want to get rid of if you get them.

How does age play into this?

There have been some studies looking at this. What appears to be a shifting of the age of earlier onset colorectal cancer, I can say with reasonable confidence, is probably only slightly explained by the syndromes we know about like Lynch syndrome, FAP (familial adenomatous polyposis), and others. The prevalence of those syndromes is pretty constant in the population so we wouldn’t really expect those to be causing a shift in the age of cancer diagnosis.

What I think is more likely is other genes plus environmental factors. Genes that we perhaps don’t know about right now or how they’re involved in this plus environmental factors like [the] food we eat, how we exercise, or how well fed we are. Actually, our nutritional status as human beings is a lot better now than it used to be many, many years ago.

All of these things probably play into changes in the rates of cancer that we see in the population and the ages at which those develop. I think it’s important to always, in these young cases that we’re seeing, think about Lynch syndrome. Test these individuals. But I don’t think this explains the shift.

Everyone with a diagnosis of cancer should have access to hereditary genetic testing if they want it…The tougher question is: how do we test everyone else? If you’re testing patients with cancer, you’re behind the eight ball.

Who should get tested for Lynch syndrome?

Lynch syndrome is common enough that I think any young patient or any patient who has colorectal cancer, if not now but in the near future, really should be tested for this syndrome.

The Ohio State group and others show that if you test patients with colorectal cancer under the age of 50, you’re going to find that about 8% or 9% of those colon cancers have Lynch syndrome. If you test over 50, it’s going to be a smaller chunk, but it’s still going to be a pretty significant percentage of people.

If you look overall at all colon cancers, Lynch syndrome comes in roughly about 2.8% to 3% of all colon cancers and that’s common. Especially because we have great ways to screen these folks, we have other things we can do. There are emerging new prevention approaches. With a disease that is common, we should really be testing everyone.

Testing has become much more accessible [and] much cheaper. What we’re seeing is national guidelines shifting direction — full disclosure: I’m part of some of them — recommending this testing for all colon patients. I think it will not be too many years before that is fully endorsed by the whole medical community.

There have been some great data from Jewel Samadder’s group from Mayo Clinic showing that if you take all comers with any kind of cancer and you test them with a large gene panel, you’re going to have roughly a 10% chance that you’re going to find some relevant gene that relates to people’s risk of cancer that’s actionable and meaningful.

That tells me that everyone with a diagnosis of cancer should have access to hereditary genetic testing if they want it. Not everyone wants it. I think the tougher question is: how do we test everyone else? If you’re testing patients with cancer, you’re behind the eight ball.

What we want to do is test people who are in their 20s and 30s, who have their lives ahead of them, can plan ahead, can think about, “Am I going to smoke or not? Am I going to drink or not? Am I going to exercise or not?” Because that’s where we can really make an impact on preventing cancer in the population. Identifying those folks for whom we should focus resources like frequent colonoscopies and other things versus individuals who don’t have to worry about that.

Clues like mom had ovarian cancer: huge red flag. You need to get testing. We can use information from population genetics to help individuals understand what risks they may be facing.

A nice study out of the UK showed that if you tested lots of folks for Lynch syndrome, not based on family history, you’re going to find meaningful mutations in many folks who never have a family history of cancer. But those folks can still go on to get cancer themselves. Family history helps you, but it’s far from perfect.

When you think of a world where this is a common disease and testing is relatively cheap, I can tell you being in this business, it’s much nicer to know you have a risk and prevent [it].

We do a lot of survey groups in my research team looking at patients’ preferences for different kinds of ways of preventing disease. We asked them, “Would you want to start taking immunotherapy or start using aspirin or exercise three times a week?”

The kind of prevention people are actually most interested in are actually nutritional interventions. People want information that guides them, that helps them eat better foods and foods that will help them prevent disease, much more so than they’re interested in things that are more invasive or they may perceive as being riskier. Helping them understand those risks early in ways that they might be able to address them is really important.

What we want to do is test people who are in their 20s and 30s, who have their lives ahead of them, can plan ahead… Because that’s where we can really make an impact on preventing cancer in the population.

How does genetic testing help with the treatment plan?

It does [help], especially the immunotherapy part. Immunotherapy really put Lynch syndrome on the map a few years ago. There was an “Aha!” moment in science that was huge. It doesn’t matter whether it’s colon cancer, endometrial cancer, or whatever.

In this process of DNA mistakes that happen in the tumor, there are proteins produced that are non-native to our body. There are these little fragments of proteins that our cells wouldn’t normally make. A patient’s immune system recognizes those and realizes that [they] shouldn’t be there. The tumors very quickly hide away from the immune system. When I describe it to my patients, it’s like they put up little umbrellas to hide under.

This therapy that was developed and came on the market a few years ago, what we call immune checkpoint blockade or anti-PD-1/PD-L1 therapy, basically is able to take down those umbrellas [and] allow the immune system to swoop in. In a large number, although not 100% of cases, [it] can sometimes allow an immune system to completely control a tumor if not cure it.

It is incredibly important these days for patients to be tested early on, especially [with] colon, endometrial, and several other tumors, to find out whether their tumor is MSI high or looks more like Lynch syndrome versus not.

Of course, there are some MSI high tumors that are not Lynch syndrome. But again, that’s a really important question that needs to be asked early on in the treatment of almost every cancer these days.

Is there a vaccine coming out for Lynch syndrome?

As is often the story of medicine, there’s been lots of great research over the years, particularly by a group in Germany, but they’re not alone.

A very smart scientist Matthias Kloor and the team that he works with in Germany [is] looking at these peptide fragments that these tumors make that the immune system recognizes, analyzing them, purifying those, and developing vaccines that would be able to stimulate the immune system to recognize those and hopefully enhance the immune response.

They also identified peptides that were common across lots of different Lynch syndrome tumors, like endometrial cancer [and] ovarian cancer. There are ones that are commonly produced by all tumors.

There are some trials now going on. There [are] at least two. One that’s ongoing in the US that I’m part of, based out of an MD Anderson consortium. This small trial is basically looking at whether the vaccine will stimulate the T cells in patients. This is a small early study. If that goes well, the next step would be a larger study to look at some specific cancer or some intermediate outcome.

There’s also another study that’s going to be opening, which will also be looking at another vaccine, but [with a] similar idea. We’ll initially look at the stimulation of the immune system but also at some biologic endpoint.

There may also be others along the way. I think it’s [a] really, really exciting time.

We’ve had our first two patients participate here. All has gone smoothly, I have to say. It’s probably the most exciting thing that I’ve been part of because this is something I’ve been reading about for 10-plus years. To finally see it come about and be able to offer patients a treatment like this is incredibly exciting.

The main thing I would caution patients [about] if they went through their primary care provider is that genetic counseling is really an integral part of this.

What is the process of getting tested for Lynch syndrome?

There are multiple ways these days and I think that’s ultimately a good thing.

It used to be that you had to come to a center like Fox Chase. You had to go through what we call the clinic-based, high-risk program. Sometimes those programs would have a long wait to get in. That’s still an option for patients and I think that’s a good option.

I firmly believe that patients who are having this kind of testing need to have genetic counseling. What’s nice in 2023 is there are more ways to go about that.

Patients can get testing through their primary care providers. Providers may have some access to genetic counseling remotely or sometimes the genetic testing companies they’re using may have their own counselors.

The main thing I would caution patients [about] if they went through their primary care provider is that genetic counseling is really an integral part of this.

The other way is what we call direct-to-consumer where patients can go online. There is a company where the company has its own online doctor. There’s online counseling and they can send patients a kit. It’s not my preference for patients, especially patients who may have concerns or may have lower health literacy [and] need more help with the decision-making process.

But, again, I do think that option has a place for patients who may be otherwise reluctant to come through a big cancer center or may have concerns. It allows patients to do the testing outside of their health insurance. There are, again, pluses and minuses to it, but I think it has a place. All of those exist for patients as ways to get tested.

Is there a risk in panel-based testing?

There are many different companies that offer different variations on the same theme, which is generally panel-based testing where you can get tested for a bunch of different genes all at once, including the Lynch syndrome genes, to identify any risks that may be in the family.

There are some panels that are over 100 genes but that’s not actually the right answer for every patient. When you do a large panel, you have a high chance that you may find uncertain results in the Lynch genes or other genes that you don’t really know the answers to.

You may also find what we call incidental findings. You may be thinking, “My brother had colon cancer at 40 so he has a pretty high chance that there’s Lynch syndrome. I want to get tested for that.” What if you, lo and behold, find a BRCA mutation? That can be pretty unsettling for some people and, again, why counseling is so important.

There needs to be a bit of a “buyer beware.” You need to know the pros and cons of that approach. It’s not infrequent that when we’re discussing our cases weekly with my counseling team, there will be patients who come along who just want to keep their testing simple.

They don’t want the 50- or the 100-gene panel. They just want to focus on either 12 breast cancer or colon cancer genes because they don’t want all of that risk of distracting information. It’s important for people to understand that they do have those choices before they jump into this.

This is something that has been amazing for me in medicine [since] when I started. We would counsel basically one gene at a time. We had women with breast cancer who we might counsel for an hour and a half to just BRCA1 and 2.

Now, only 15 years later, we’re doing this much broader pre-counseling for patients. But we really then focus on the results counseling afterward, especially when patients are getting panels of 80-plus genes, you couldn’t possibly counsel for every gene individually so it’s really fascinating how it’s changed.

When you do a large panel, you have a high chance that you may find uncertain results in the Lynch genes or other genes that you don’t really know the answers to.

What is ICD-10?

ICD-10 is the new coding system. It does separate out Lynch syndrome a little bit more so now there’s a code for MLH1 & MSH2, so each of the genes. I use them, but there is also a general Lynch syndrome code as well.

When I’m having an interaction with a patient, doing some counseling, or bringing someone in to review testing results, I will include that code.

Unfortunately, some of the ICD-10 codes that will help docs get reimbursed for high-risk syndromes are not high-capture codes like a colon cancer diagnostic code. They are lower capture V codes that, for the doc, may mean minimal to no reimbursement.

This is one of the challenges in the field. Again, our health system is very much structured around spending a lot of money on treating complex diagnoses and not spending much money at all on preventing disease.

Hopefully, one day, we’ll see that the amount that a provider gets for spending time with someone to test them for Lynch syndrome, to counsel them correctly, to help them understand what they can do about that risk should be reimbursed as well as treating cancer down the line or at least some parity in those two.

Conclusion

One of the hardest things about genetics for patients is these intrinsic fears that they’re discriminated against. Understanding it all can be hard. Sometimes their doctors don’t even understand it all that well.

It really has been pretty amazing to be part of it all. Part of the joy of being in research medicine is some of the amazing colleagues you meet along the way. Being part of this mission to understand this disease better, help the patients, see them at meetings, and learn about this is really, really pretty amazing stuff.

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Tags Lynch syndrome

Chemotherapy Non-Hodgkin Lymphoma Patient Stories Primary Mediastinal B-Cell Lymphoma (PMBCL) R-EPOCH

Stephanie’s Stage 4 Primary Mediastinal Large B-cell Lymphoma (PMBCL) Story

Post author By Katrina Villareal
Post date April 12, 2023
No Comments on Stephanie’s Stage 4 Primary Mediastinal Large B-cell Lymphoma (PMBCL) Story

Stephanie’s Stage 4 Primary Mediastinal Large B-cell Lymphoma (PMBCL) Story

After her father’s Hodgkin lymphoma diagnosis, Stephanie still never thought her persistent cough was anything more than allergies or asthma. But after her cough progressed and she couldn’t do or say anything without coughing, she finally decided to go to urgent care.

As doctors cleared fluid from her lungs, they found a mass in her chest. She was then diagnosed with stage 4 non-Hodgkin’s lymphoma only two years after her dad’s diagnosis.

She voices how she processed her diagnosis, how she advocated for her health, and how her father’s diagnosis impacted her cancer journey.

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Name: Stephanie V.
Diagnosis:
- Primary mediastinal large B-cell lymphoma (PMBCL)
Staging: 4
Initial Symptoms:
- Allergic reaction
- Lungs felt itchy
- Shortness of breath
- Asthma/allergy-like symptoms
- Persistent coughing
Treatment:
- Pigtail catheter for pleural drainage
- Video-assisted thoracoscopic surgery (VATS)
- Chemotherapy: R-EPOCH

Table of Contents

Introduction

I work in private wealth management. I manage a team that oversees investing high net worth accounts. I enjoy developing my team members and associates that report to me; that’s always been something I’ve been interested in since I started with the company. I’ve been with them for almost eight years so it’s been quite an endeavor in that sense.

In my spare time, I like remaining active. I’ve danced since I was 2.5 years old. My passion was always ballet, but I also did tap, jazz, [and] contemporary.

I studied dance in college with a focus on economics. I did dance on the side knowing that it wasn’t going to be my end goal or career, but something that I kept up with. Now I’ve translated that into exercising on a regular basis and trying to keep active. Remaining active has always been something important to me.

In the winter, we go skiing and spend time with family. It’s always been very important to me.

My father’s Hodgkin’s lymphoma diagnosis & journey

We’re very healthy individuals, my dad specifically. He works in construction so [he has] an active job. He’s very tall, very lean, [and] very healthy.

We started to notice [that] he had this cough in late 2017-early 2018. He works in dirt so we thought, Oh, he’s inhaling too much dust. He’s just coughing it out. It did become very persistent and we said, “Maybe he should go to the doctor [to] get this checked out.”

He hadn’t been to a doctor in 20 years; didn’t really need to go because he’s a healthy person.

His tumor was so dense [that it was] difficult to get a good sampling. He had many biopsies because every time, the results came back inconclusive.

The doctors knew that he pretty much had Hodgkin’s lymphoma. He had every symptom in the book: night sweats, weight loss, coughing, and itching. We knew he was sick, but we couldn’t get that confirmed diagnosis.

After about three or four months of going back and forth and finally getting that confirmed diagnosis, he was able to start treatment. I forget what treatment he did, but I consider it an old-school treatment. It wasn’t the ideal treatment that they wanted to do for him, but they did that one I think because of insurance purposes.

He went through his treatment cycles and had a clean scan, but within three or four months, he had the cough, itching, [and] night sweats again. It came back.

The next plan was to do a stem cell transplant where he was his own donor. Now, this is [the] summer of 2019. He was in full isolation. We were wearing masks and gloves to visit him. We could have visitors at that time as it was pre-pandemic. He started to do immunotherapy as [a] maintenance treatment after the stem cell transplant.

He’s been good ever since, thankfully. He has his regular checkups with our lymphoma team at the cancer center. He’s now doing one-year scans but has a checkup every six months. He was pretty much confirmed clean before the pandemic started.

Initial symptoms

I didn’t really have any symptoms other than a persistent cough. I pinpoint this back to a day in February [when] I might have had a food allergy mixed in with some dust contact shortly after. I guess my immune system might have been down and couldn’t fight whatever was coming into my body at that point.

I did a teledoc appointment that weekend. My face was very swollen and I was prescribed some prednisone. A few weeks later, I still didn’t feel very well. I still had itchy lungs.

I went to the doctor in person. They prescribed allergy medication. It was winter in New Jersey. I already have food allergies [and] eczema and so I said, “Okay, add it to the list.”

I noticed shortness of breath in April 2021. I was actually supposed to get married [that month]. My husband, then fiancé, [and I] were in Newport, Rhode Island, for our would-be wedding date and we were walking around. Our hotel was over a little bridge that had an incline.

I noticed that I was getting out of breath and we were just walking around, not even having anything to drink. It was just a nice day and I was very out of breath. I had to stay in the hotel room more than we’d liked.

May 2021 was when my symptom progressed. I started to have a cough and more asthma allergy-like symptoms where I definitely was more short of breath. I went to the doctor and they said, “It’s probably asthma. I’m going to give you two inhalers.” One was albuterol and something called Qvar, which was a little bit more intense. I said, “Okay, this was probably coming.”

Coughing progressed

By June 2021, my coughing had progressed a lot more where I really couldn’t do anything or say anything longer than a sentence without coughing nonstop. It was impacting my work.

I speak a lot. I do training for my team and I couldn’t get through a presentation or even a sentence without coughing so that was becoming a lot more noticeable. Definitely, not a time when you want to have a persistent cough. It was confirmed many times [that I] didn’t have COVID.

After not feeling well to the degree that I was that morning, I finally decided to go to urgent care. I was going to go that week, but I realized that morning I had to go. I did get sick from coughing so much. I think my body was probably doing it out of habit at some point, too, just because I couldn’t go more than two minutes without coughing.

I was convinced it was pneumonia at that point just because [of] the way I was coughing. I just couldn’t breathe.

Pre-diagnosis

Going to urgent care

First, I went to urgent care where I demanded an X-ray. They said, “You might have COVID.” I knew I didn’t. I asked for a chest X-ray.

Before I even put my clothes back on, they said, “You have something that’s called a pleural effusion or an empyema and you need to go to the emergency room right away.”

This was a different medical group than where I ended up getting all my treatments. They said, “Go to this hospital. We’ll call you in.”

I said, “If this [has] anything to do with my lungs, my dad already has a pulmonologist that’s at a different hospital network. We know people there. I’m going to this emergency room instead.”

They called the hospital that I wanted to go to. You need to advocate for where you want to go [and] what you want to do because it is all about you at that point.

Going to the emergency room

I did get to the emergency room. This is the middle of the day on a Monday [so there were] a lot of people in the emergency room, probably about 50 people waiting. I [was] waiting my turn and the second I said my name, they said, “We’ve been waiting for you.”

They pulled me into another room, threw a gown on me, [and] started to do all these tests. I’ve never been to the hospital other than when I was born. I go to the doctor [for] my yearly visits. All these tests, all these patches on me, [I was] getting a little nervous.

Then they said, “Okay, we have your blood.” At urgent care, I did not have a fever. The second I got to the emergency room, I was 101°F or 102°F. I think my body was just saying, “Okay, this is time. We’re going to show every symptom we have now.”

They put me on a gurney and rolled me into my other room. I did start to cry a little bit because I was very overwhelmed. I was with my sister and at first, [we] were very lighthearted. We make a joke out of everything so I was said, “Oh, I guess it pays off going to urgent care first before going to the ER because they can give a heads-up.”

Everyone else is either walking to an exam room or in a wheelchair, but I get a gurney and I said, “Okay, no one’s really telling me what’s going on. They’re just all acting a little fast.” That’s when I got a little bit nervous.

They told me I had about a liter of fluid in my right lung that needed to be taken out. They couldn’t do it that day, but they would be able to do it the next day. Not only was this my first trip to the hospital, [but I’m also] now automatically staying [the] night.

I was admitted on a Monday. They didn’t know it was cancer until Friday. There’s so much fluid in my lung that they first thought pneumonia or pleural effusion and they need to get that out. Once they cleared out the lung, that’s when they did the CT scan and saw the mass in my chest.

They didn’t tell me until Friday. They were just concerned about what was happening in the lung and how to treat it. I don’t know if they didn’t care to look at it. I don’t want to make it sound like the doctors were being careless, reckless, or anything like that, but I think they were just addressing that issue first.

Rolling into the OR, they said, “Oh, by the way, can you sign here? Because we’re also going to biopsy this mass in your chest.” All I remember thinking was, Interesting. My dad had a mass in his chest, but at that point, I still didn’t think it could ever be lymphoma. I said, “Oh, that’s interesting,” and the next thing I know, [I’m] getting a mask on me and going to sleep.

There’s so much fluid in my lung… Once they cleared out the lung, that’s when they did the CT scan and saw the mass in my chest.

Requesting a chest X-ray

That is a lesson learned from my dad’s experience. He is considered young by most standards so I’m considered extra young.

When he had the cough, I think he had gone to the doctor maybe two times, one for a physical because he hadn’t gone in so long.

At that point, I think anyone over 50 should be getting a chest X-ray from what I understand. But that first doctor did not do a chest X-ray so he could have seen something earlier.

When I was coughing so much, my mom said to me, “When you do go, get a chest X-ray because that’s where we’re going to start every time,” not thinking that this was going to turn into stage 4 cancer.

We said, “Okay, it’s what? $12 for a chest X-ray with insurance or something like that. It’s very harmless and we’ll just cross that out.”

Getting back from the OR

I wake up. They cleared out my lung, but there was still a lot of infection in there. While they were in there, they took [a] biopsy of the chest and the lung as well.

I get rolled into the surgical ICU for recovery. This is pandemic time so we only had two visitors at a time. A couple of minutes later, my mom, dad, and fiancé came in. I thought, “Interesting. We have three guests. How did we do this? This is very nice.” If my sister was there, that would have been the goal but, obviously, we can’t push it.

I had my important people there and I was asking my fiancé because he was sitting right next to me. I asked, “ Did they say anything? They mentioned a mass [in] my chest. Did they mention anything about it? I don’t know what that is.” He just shook his head and said,, “I don’t know about that.”

I have a popsicle in my mouth because I had a sore throat from the anesthesia. I’m licking away and I said, “Okay, well, this is it, guys. I’m going to be here for a couple of days, go home, and we’ll all laugh about this later.”

She immediately called the cancer center and said, ‘My husband’s a patient and I believe my daughter’s about to be a patient. What can I do?’

Diagnosis

Getting the official diagnosis

The doctors come in. I thought they were just going to go through the surgery and say what I have to do to fix myself. It was actually a team of surgeons. They can’t say it without having [the] biopsy results, but the doctor was very confident that I had lymphoma in my chest.

I looked at my fiancé and my parents and asked, “Are you sure you didn’t pull my dad’s files? We’re in the same hospital unit and he had [a] mass in his chest. Dad has lymphoma, not me.”

They left. My mom’s face, I knew she already knew the information. What I came to learn was the doctor called her, telling her that I was out of surgery. He said, “I was able to look at the actual mass and at the cells and I believe it’s lymphoma.”

She said, “Please do not tell my daughter until I get to the hospital with her father [and] her fiancé. She cannot hear this news alone.” That’s how they got three visitors in the hospital.

The second she got that phone call, she went into her mode. This is Friday afternoon. She immediately called the cancer center and said, “My husband’s a patient and I believe my daughter’s about to be a patient. What can I do?”

We didn’t have the biopsy results but she wanted to get our names on the board immediately.

She did say she paused because again, I’m in this transition of getting married and my spouse might be the one who wants to make some decisions, too. She had to pause and turn to my fiancé and say, “Are you okay if I start running with this?” He said, “Please. Go right ahead,” because she knew the road to take and we just had to get right in there.

Stephanie V. coloring book and sleep mask

Reaction to the cancer diagnosis

I still think it’s absolutely bizarre. We’ll never understand. I’m not sure when I’m going to say, “I just had stage 4 cancer and my dad had it, too, all within five years.”

I was very calm. I don’t think it actually hit me until someone mentioned family planning. That was hard to understand, especially as I’m trying to get married and I have someone who is looking to me to start a whole life together. I thought,“Well, this might get cut short.” But otherwise, I was calm.

I like to deal with things as they come. I accept it and say, “Okay, what are we going to do about this?” I do that in my work. I’m learning in my life, too. That’s not to say I don’t have anxieties or stresses about it, but I do think I remain calm under these pressures.

You never want to see that look on both my parent’s faces. You never want to be the cause of their worries. I think that that happens naturally when you become a parent, I’m sure. But to this degree, I don’t think you ever want that.

My mom’s got her way of reacting [to] things. But I know with her, I was in good hands. We knew what we were going to do. It was going to get done.

With my dad, [it] was hard to look at him, and over the course of the next couple of months, too, because he knew what I was about to go through more or less. You don’t want that for anybody.

He said, “If I could trade places with you, I would ten times over,” and you just don’t want to hear that. I don’t want him to go through it again, too.

I think it’s more stressful for me to see everyone else worry about everything… You don’t want to be the cause of people’s worries and restless nights.

We’re [a] family who jokes and tries to make light of things when we can. Looking at my fiancé at the time, I said, “You can get out now. It’s going to get ugly.” My mom said, “Yeah, James, we’re going to give you three tries and after three, you’re in. So here’s your first try. You can go.” Of course, we’re joking and, obviously, he wouldn’t leave.

You don’t sign up for those things. No one does. But we didn’t even say “I do” yet and this is the “in sickness and in health.”

I think it’s more stressful for me to see everyone else worry about everything. That was the heaviest weight to carry. Not my health or what I had to go through but seeing other people go through it. Seeing it with my dad, I knew as a loved one how that felt. You don’t want to be the cause of people’s worries and restless nights.

Having a support system when you get your cancer diagnosis

I wouldn’t have expected it any other way. There’s no scenario where they wouldn’t have been there. I think that’s the part that she gets done every time, like having those three people in the room knowing that this is life-changing news. If she could get my sister in there, too, she would. I think that’s just the way she does things.

You can’t just hear about it by yourself with a SpongeBob popsicle stick. You need those people around you. That’s when day one starts.

You’re never alone in this process. But to hear that news, you cannot be alone. For her to do that, that’s the person that she is, knowing that she’s done it before.

Treatment

Starting treatment after cancer diagnosis

It was about a month afterward. I got the confirmed diagnosis a few days after I was released from the hospital. I got [a] phone call from the surgeon.

I called my mom right away and said, “Okay, it is lymphoma.” There was a case where it could have been some lung disorder or disease that would still be treated with chemo, but it wasn’t cancer, so that was also a blessing in disguise. We said, “Well, we know lymphoma so we’ll take it.”

My mom immediately called the cancer center and said, “We officially have the diagnosis.” The surgeon was about to call the cancer center as well.

The cancer center called me back and said, “Our oncologist has an appointment open [in] 45 minutes. Can you go?” My mom’s at work, I’m at my house, and the cancer center was about 25 minutes away. I said, “I don’t know if we can get there. Let me call you back.”

I called my mom. I said, “She’s available in 45 minutes, but you’re at work, Mom.” My mom said, “No, we’re going. I’m dropping everything.” She had an amazing boss at the time who was so understanding and knew everything about my dad’s history. Anytime anything happened, she would just say, “I have to go,” and he said, “Okay.” That’s it, no questions asked.

She picked me up. We sped down to the cancer center and got our appointment with the oncologist. She’s a rock star.

These are people who’ve known my mom now for a little over two years. They know my dad. They’re the younger couple so people tend to recognize them and know them in the unit.

The look on their faces… The head oncologist and her team of nurse practitioners had this look. My doctor said, “I’m so sorry.” She genuinely was upset that we were in there.

She went through the whole thing and that’s when they said the staging. My dad never got a staging. They just treated him. My parents had asked a couple of times, but they never really clarified. We think maybe 2 or 3 and I could totally be wrong about that.

But for me, right away, it was, “Okay, well, you’re stage 4.” I said, “What?” I didn’t have any symptoms other than this cough, but my lung was completely infected and that was all the cause for it.

Immunotherapy & chemotherapy treatment

I did the egg retrieval on a Thursday. That Friday, I did my first round of immunotherapy and rolled right into chemo.

I first started the chemo treatments end of July. I did R-EPOCH.

Side effects of chemotherapy & what helped alleviate them

I, fortunately, did not have many side effects. I was nervous because when I learned what R-EPOCH entailed, which was 96 hours in the hospital every round, that was not what I was expecting. I was expecting a couple [of] hours once a week outpatient, just like my dad had all these months or years.

Digestive issues, yes, but I always have digestive issues anyway. I did have shots that I had to take at night after each treatment cycle for about five or seven days to boost my white blood cell count. Those give you achy bones literally. That’s pain that you don’t know exists until it actually happens.

I would remind myself that the pain I’m feeling is my body producing white blood cells so I would just try to imagine that and cope with it. I would find going for walks helpful because when you do sit for too long, that’s when the aching really did come.

When I was in the hospital, I would walk because I can. Most people in the oncology unit cannot walk so I said, “You got to get up because no one else can and you have absolutely no excuse.”

I think I would do like three miles a day around the unit. I would walk anywhere that had space and anywhere that I could. That was basically the most helpful thing to do because otherwise, you’re just sitting in a hospital bed. Sometimes you have a roommate and you’re hearing their pain so walking was what I had to do.

I was exercising here and there. Still tried to do Pilates [and] yoga when I could. If I don’t work out X amount of times a week, that’s mentally not good for me.

I also did it because of the weight fluctuations that you experience with treatment. That was hard especially that first round because I was coming off IVF drugs and I got bigger because they pump so fluids in you to protect you from all the drugs that you’re getting.

At the time, going through the whole process of freezing my eggs was a huge inconvenience to me because I just wanted to get better… I had a bigger fish to fry in a way.

Fertility preservation prior to cancer treatment

We wanted to do family planning. She knew I was getting married and she made it seem more important to me than I think I really realized. She explained that the drugs we’d probably go with could impact my fertility, but it’s not guaranteed. She felt that it would be important for me to take the time and do that.

Sometimes patients don’t have that time. She did say, “You do have time. I will give you time to do it. We think it’s probably best to do so.”

At the time, going through the whole process of freezing my eggs was a huge inconvenience to me because I just wanted to get better and then have a wedding. I knew every day counted because my hair, whatever it was going to be, needed to grow. I said, “The faster I’m done, the faster it will grow.”

I went to the first doctor that she recommended. They do egg retrieval in the office and although it is local anesthesia, they weren’t comfortable with where my mass was with being able to breathe properly. They didn’t think they had the proper facility to do that procedure for me.

She confirmed that I should go to a doctor at Cornell in Manhattan because they do the procedure in a hospital. I went to that appointment [and] then found out that their labs were closed for a full week so I had to delay the process. But once we started with the shots and everything, it was a quick 10 days.

Family planning decisions with your fiancé

That part of the journey is a bit of a blur. We knew about lymphoma. We knew how to do cancer. We didn’t know about this.

This was something that we did together because my mom’s said, “Oh, I’ll handle the cancer part. This is your family.”

We knew we were going to do it, especially after the strong recommendation from my oncologist. One thing we did discuss was eggs versus embryos. That will be one of the first questions that you’re probably asked.

Freezing your own eggs is the first step of IVF if I am explaining it correctly, where you’re producing as many eggs as possible to retrieve all in one.

With the embryos, that’s when you mix in the sperm that you could freeze as well. I believe there are some benefits to freezing embryos. I think there’s a higher success rate.

We discussed it and decided that just freezing the eggs was what we wanted to do at the time. There was some extra time needed in order to do embryo freezing. But just in case anything were to also go wrong in our relationship or anything like that, these are my eggs.

Because we weren’t married yet, even though we were about to be, these are mine. He said, “Absolutely. This is the decision that we want to go with.”

Process of freezing eggs

The hardest part for me was the last couple of years. I know that I was in a very different circumstance than most people and I fully recognize that, too. I saw this as somewhat of an inconvenience because I had a bigger fish to fry in a way.

But looking back, it’s completely different because you don’t know what’s going on in that next stage. Because I have to go to two doctors and [the] time that it took to get through all those appointments, that was more of the inconvenience for me.

The whole process is very, very difficult. You become a nurse for yourself immediately.

I’m very fortunate [that] I was a beneficiary of programs that help with paying for those medications. But if you’re doing that because you want to start a family and you’re not a cancer patient, I cannot imagine how people pay for multiple cycles.

The stress of keeping your needles clean and becoming a nurse overnight is absolutely insane. Learning the exact dosages and getting everything in order is crazy. Then administering the shots.

I’m someone who doesn’t mind needles, but I couldn’t give myself the shot. I was living at my parents’ house at the time. We bought a house in the same town so my fiancé was living in the house and he would come over every night for dinner.

After dinner, [he] and my mom would rock-paper-scissors for who’s going to give me my shots. I would mix them.

My mom was used to giving needles because she had given my dad white blood cell count boosters a few years ago. But that was in his arms; we were doing it in my belly.

James — and he would say this, too — was a little bit more, I don’t know, reckless. I would always bleed after he would give me the shots. One shot, Menopur I think, burns so badly.

Getting stuck every single day and then drawing blood in the morning, I was getting tired and I would cry. I would try to hide my crying, lying down on the couch. That Menopur shot would just send you over.

They knew they had to stick me two more times that night; that’s what was hard. You don’t want to do that to somebody. I was crying because I [didn’t] want them to feel bad, but they [did] because they’re inflicting pain on me.

In hindsight, probably the best thing that we could have done to ensure, hopefully, a family going forward whether we have to use them or not. It’s good to know that we had them.

Taking care of your mental health

I’m in the suburbs of New Jersey. I have to go to my morning monitoring in Manhattan at 6 o’clock in the morning. A lot of mental work there.

I just had the mentality, “This is what you have to do. While it’s not the cure for what you’re actually sick with, you have to do it because this is your future.”

At that time, I had gone back to work basically after I was admitted and had my initial diagnosis. I was off a week or two to start the whole cancer process, but then I did go back to work for a few weeks before I officially started treatment.

I was just in a mode at that point: morning monitoring, back to my house, work, dinner, shots. I kept that routine pretty consistent and just added doctor’s appointments. That helped me keep focus and remain distracted from these bigger things that [were] happening. That’s just how my brain is wired.

I did work through all of my treatments. When I wasn’t in the hospital, I came home for a couple of days and took some rest but then I did work when I could work. That’s a testament to the company and the team that I work on. They were very understanding.

They allowed me to have that mental space, too. I don’t think I took on anything brand new during that time, but they allowed me to keep the things that were important to me, which was very helpful.

Planning a wedding & getting married

I should have gotten married originally [in] April 2021. We moved it because of the pandemic. Then when I was diagnosed, obviously to me, that was the last thing I needed. I said, “We will see what happens.”

My oncologist said my treatment plan was six cycles. She said after three, she would expect remission. Up until that halfway point, I didn’t think about the wedding very much, other than my hair. I was said, “We’re not talking about it.”

At this point, it’s not really happening, but we haven’t canceled anything. We did tell our vendors, “We’re dealing with this. We’re not talking about anything else,” and they were all very understanding. I don’t think they looked for payment. Good people out there.

After the midway point, I had my PET scan and the oncologist told me that I was in complete remission. I still had three cycles left. That’s when the wedding planning came.

Ironically, after that scan, I started to get more [anxious] because we’ve been in this bubble the last few months of, “We don’t have to worry about anything other than me literally surviving.”

I had that routine: wake up, work, maybe have a doctor’s appointment, have dinner, [and] go to sleep. That was the routine. I go to the hospital [if I] have treatment. That was it.

My doctor said, “You can start to plan. I’m comfortable with you moving forward with your wedding.” I said, “It’s in April.” She said, “Yes, that’s fine. You should be good.” I said, “We’re inviting more than 200 people.” She says, “That should be fine.” She gave us the okay. That’s when it all started to sink in.

One night, I just could not sleep. I was naive for a while with the hair because I had a few nurses tell me they had seen some patients not lose all of it so I hadn’t shaved my head or even cut it at that point. I just basically looked like Gollum from Lord of the Rings. It was bad. I should have cut it a lot earlier.

But that was an area where they knew I could joke about my hair, but no one else could. I know my mom and sister were definitely texting each other, being like, “She still hasn’t cut it.” That’s fine. Talk about it between them.

I thought, “I don’t think I’m really going to have a lot of hair,” because I was imagining maybe a Charlize Theron little bob-pixie thing going on.

I was constantly Googling “stages of hair growth after chemo.” I wanted a month-by-month playbook of it. Not many pictures out there to give you what you could look like. Obviously, everyone’s hair is different. Constant Googling of “how fast you can grow your hair safely.”

One night, I could not go to sleep. I tried some of the anti-anxiety medications that they sent me home with and that didn’t help. I think it made me worse.

I just remember texting my fiancé, saying, “Today is not a good day.” It was probably the only bad day I really had. He works in finance as well; very market-sensitive job. He asked, “Do you want me to just come over and sit with you?” I said, “No, no, there’s nothing to do.”

I thought,“Okay, life is going to start again and it’s going to be fast because I’m going to be done in November, God-willing, and if all looks good, I’m going to get married in April.” It was like the freight train was just pushing past anything that was blockading it and we were full steam ahead.

I think April was the true finish line in that sense. Technically, May, when I sat down on the beach in Turks and Caicos for my honeymoon. The wedding was the end in sight.

Follow-up protocol after cancer treatment

[I got] my results right before Christmas. I had so [much] vacation time left over for the year that I basically took off most of December, which I never do.

My fiancé and I got massages that day. We had brunch then he came with me and we thought, “It’s either going to be a good Christmas or a bad Christmas,” but it was a good one.

We were used to every three months checkups for my dad, but she said, “I don’t want to see you until June and you’re going to be married.”

I wasn’t sure if she did that because three months would be around March if I were to do that and maybe she didn’t want to ruin anything.

Now, my checkups are every six months. I don’t even do PET scans anymore. I just do CT scans. So to me, she’s not as worried about anything because you don’t have to do the more detailed scans.

Everything so far [is at] complete remission. That’s where I think I have scanxiety and mostly because of what we’re finding more now afterward.

Getting diagnosed with Chiari malformation

I was getting migraines and they definitely were more pronounced after chemo. I thought that was because [I was] coming off a lot of bad, bad drugs. I noticed they were tension headaches. There were certain situations where I would get them.

My sister did remind me that I did get these headaches and tension headaches before I was sick, too. The night I got engaged, I had a terrible migraine. My head was throbbing.

I was sensitive to light as well. If it’s a beautiful, sunny day and I’m outside, throw in a high noon hard seltzer or something like that [and] I’ll get a migraine. I can only have maybe a couple of sips and I’ll get a massive migraine.

I did mention that to my oncologist. In that June scan, I was clear of cancer, good on that front, but she did mention that I had something called Chiari malformation, which is something that could cause the headaches that I was getting.

She recommended [for] me to go to a neurologist, which has been something that I’ve been on a new journey with learning a new topic and health area itself.

Many people can have it. You might not have any symptoms, but I’m pretty asymptomatic, given how severe it has become where it’s caused some issues. It’s caused the syrinx in my spinal cord.

Something that you look back and say, “Yes, I had cancer, but if I didn’t have cancer, I would have never probably mentioned my migraines or tension headaches or I thought they were really normal.”

People tell you, “You’re a woman between the ages of 25 and 50,” which is a very broad age range by the way, “so it’s pretty common for you to have migraines.” You just named half the population so we’re all supposed to have migraines? If I had stuck with that, I’d probably have not gotten the surgery because I’d say, “Oh, I’m just a woman who gets migraines.”

Words of advice

Be very detailed with what you’re experiencing. I went to the doctor for my yearly checkups until I was 28 years old. Now, I try not to overdiagnose myself, but I’m realizing I think I’m onto something when I have some of these issues.

Keep a notebook of every appointment [and] everything you discuss. I learned that from my mom. She has my dad’s whole medical life written in a notebook. We started my own notebook when we got into this whole mess.

Know your baselines. I learned that my temperature is in the high 97°F so if I get to 99°F, that’s off. I’ve also known my resting heartbeat. When it’s low, it might be because I’m on steroids and that’s what makes it super low. Then when I come off those and when I come out of surgeries, I run really high but I’m getting enough oxygen.

No matter how specific it might sound, start to log certain things you’re experiencing, like hand tingling. That’s definitely something that comes up with a lot of these drugs, neuropathy.

That’s something that I knew from my dad. He sort of has permanent neuropathy [whereas] mine was expected to be temporary, which it was. With my Chiari, the hand tingling is also a symptom so I don’t know where it came from, really.

That notebook is, for lack of a better term, your Bible. That’s your journal and that’s where you also can hold your medical team accountable.

In my IVF journey, someone dropped a term. They said, “Oh, by the way, did you know this?” I said, “No, I didn’t,” so I wrote it down.

The doctor said, “Not something you need to address today, but maybe something that you might want to address in the future or know about.” I wrote it down and that’s something that I need to go back and address as well.

Write down terms that you know and terms that you don’t know then research them. There is harm [with] over-researching, of course, as we all know. You go down the rabbit hole.

I read my scans and reports afterward. I’m lucky enough [that] I have a radiologist in the family. I could text her at any point and say, “What is this? What is that?”

Utilize the resources that you have or the people around you because, unfortunately, everybody has an experience with cancer. I’m not the first and I’m, unfortunately, not going to be the last. Everybody has an experience or a trick or something to do. I knew walking was my thing for treatments and staying whole [at] that point.

Family conversations about cancer

[In] my first round of chemo, I was in the same hospital room that he was in and I walked the same hallways. I actually have a picture of him walking with my mom and I was walking behind him. Then, two years later, I’m walking those same hallways. I had some of the same nurses as he did.

When he first got sick, I listened to Bob Marley’s Three Little Birds. “Don’t worry about a thing. Everything’s going to be all right.” My mom is from Jamaica so it’s special to us.

I would listen to that song every single morning when he first got sick and I never told anybody. He would also listen to that song when he was in the hospital for his stem cell transplant. [For] three weeks, he would listen to that song every day as well.

That was our father-daughter dance. It all says it in the song. “Everything’s going to be all right,” whatever it is. We both know that.

There’s probably a lot we could say to each other, but I don’t think we need to because we both just know. It’s not a great world to be around, but I think there’s a lot of beauty that comes out of it with the people that you meet [and] other experiences that you see.

We know that we are healthy. The other people that we see in that unit are sick people. We are very fortunate. I don’t think that goes unnoticed either where we were able to control what we could, whereas we know there [are] a lot of situations out there where you can’t. I think that goes unsaid as well, but we both know it.

For anybody who’s going through anything, whether it’s cancer or seeing an individual go through it, there are definitely dark times but after every storm, the sun does come out and shine. Trying to keep your head up in those times is helpful, no matter how hard it is.

Thank you for sharing your story, Stephanie!

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PMBCL Patient Stories

Arielle R., Primary Mediastinal (PMBCL)

1st Symptoms: Swollen neck lymph nodes, fever, appetite loss, weight loss, fatigue, night sweats, coughing, itchy skin, trouble breathing
Treatment: R-EPOCH (dose-adjusted) chemotherapy, 6 cycles

Keyla S., Primary Mediastinal (PMBCL), Stage 1

1st Symptoms: Bad cough, slight trouble breathing
Treatment: R-EPOCH (dose-adjusted) chemotherapy, 6 cycles

Donna S., Primary Mediastinal (PMBCL), Stage 1-2

1st Symptoms: Visible lump in center of throat, itchy legs, trouble swallowing
Treatment: R-EPOCH (dose-adjusted) chemotherapy, 6 cycles

Patrick M., Primary Mediastinal (PMBCL), Stage 2

1st Symptoms: Bump pushing up into sternum
Treatment: 6 cycles of DA-EPOCH-R (dose-adjusted) chemotherapy at 100+ hours each

Crystal Z., Primary Mediastinal (PMBCL), Stage 2

1st Symptoms: Chest pain
Treatment: 6 cycles of R-CHOP chemotherapy

Medical Experts Medical Update Article

Health Insurance and Cancer Treatment

Post author By Katrina Villareal
Post date March 29, 2023
No Comments on Health Insurance and Cancer Treatment

How Does Health Insurance Work for Cancer Patients? A Lawyer Explains It All

Abigail Johnston was diagnosed with stage 4 metastatic breast cancer after she found a lump in her breast.

After transitioning from a busy career to going through cancer treatment, she started her own nonprofit, Connect IV Legal Services. She recruits lawyers to do pro bono work for people with stage 4 cancer.

In this conversation, Abigail uses her experience as both a cancer patient and a professional lawyer to answer common questions about health insurance and cancer care. She also offers her top tips for getting the most out of your health insurance plan.

She talks about the different types of health insurance, the role of insurance brokers, CPT codes, the importance of understanding your insurance policy, and financial assistance programs for cancer treatment.

Does My Insurance Cover My Cancer Diagnosis?

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Cancer Health Insurance – A Lawyer Explains Top Tips & Resources

Table of Contents

Introduction
Different types of health insurance
Insurance brokers
Financial assistance programs
Understanding your insurance policy coverage
Current Procedural Terminology (CPT®) codes
Setting up payment plans
Financial assistance from cancer organizations
Words of advice

Introduction

It’s been more than 20 years since I graduated from law school and I’ve been a licensed attorney in Florida ever since then.

I [practiced] different types of law, [including] personal injuries [in] the beginning so [I was] dealing with people who had car accidents, medical malpractice, or some product hurt them, that sort of thing.

Over time, I transitioned into family law, [which] had to do with divorces, child custody, alimony, [and] all of those things that happen when a family is legally dissolving. [From] there, I got a lot of exposure to Medicare, Medicaid, and Social Security, not always knowing exactly what was going on in those situations and having to figure it out and troubleshoot it. That all served me very well when I was diagnosed with stage 4 metastatic breast cancer in 2017.

I like to call myself a professional patient at this point because, basically, I go to the doctor and that’s my job, as well as taking care of my kids. From going to the doctor maybe once a year to a specialist doctor’s appointment once a week, it seems like sometimes, that was a really big adjustment.

Dealing with all of the stuff that came with that on a personal level, I started seeing so many of the things that are broken in our system and how hard it is to access care.

That led me to start my own nonprofit, Connect IV Legal Services. I recruit lawyers to do pro bono work for people with stage 4 cancer. I also run legal clinics. As I began to talk to many people, I started seeing a whole lot of trends in questions, issues, and solutions.

Different types of health insurance

Health insurance can be divided into two buckets, private and government, and that [has] to do with which entity is paying.

Private health insurance

Most people get private policies through employment, whether your employment or your spouse’s employment. When that’s not a possibility, through the Affordable Care Act, there are health insurance companies that participate in the marketplace. You can always go directly to a health insurance company and get a private plan, whether that’s through the marketplace or not.

The good thing about the marketplace is that there is [a] structure in terms of what has to be covered and opportunities to get subsidies that usually depend on income.

The challenge for the marketplace generally is that every state is completely different. Some states will have one participating provider, other states will have more so there will be some more competition. The marketplace can be complicated.

Continuation of health coverage (COBRA)

For people who have left their employer, there is COBRA coverage, which is supposed to cover you for up to 18 months after you leave a position.

Government healthcare programs

Government plans have different types of structures.

Medicaid is tied to income. The program is usually offered to people [whose] income is tied to the poverty level. How that is evaluated usually is the poverty level times 100% or times 400%.

Then you get to the point where Medicaid is both federal and state. Some states have expanded Medicaid, some states [don’t] — that can be super complicated and is usually where you need a social worker to help you figure out exactly what you qualify for [and] which programs you don’t.

You can access Medicare through Social Security disability. For people who have been diagnosed with a serious illness, there’s a five-month waiting period for Social Security disability. Once that five-month waiting period has expired, you have 24 months before you are eligible for Medicare.

If you’ve been diagnosed with a serious illness like metastatic breast cancer, five months [after] your date of diagnosis, you’re eligible for Social Security disability. Then 24 months later, theoretically, you are eligible for Medicare. You have to have applied for Social Security disability. You can’t just sit around and wait. In order to qualify for Medicare, you need to apply for Social Security disability.

Abigail Johnston family Christmas picture

Medicare has a whole lot of parts. Part A is offered for free once you’re eligible for it and that covers hospitalization. The nice thing about that is you can have Medicare Part A and private insurance at the same time, which is what I have.

I have my private insurance through my husband and then I have Medicare Part A. I go to the hospital and pay zero because Medicare covers whatever my private insurance doesn’t cover. It’s a very seamless process. It works great for me.

Once you get to B and I think all the way to M, they cost money. You can also get Medicare based on your age. You start getting different types of benefits.

Once you hit 65, sit down with a Medicare broker. For those of us in the metastatic cancer community, our treatments, our medication, our doctors, [and] our scans are all in the top tier, the things that cost the most.

You may have heard of the donut hole. A lot of people who went on Medicare and thought that they had coverage for medication realize that there was this hole. The most expensive drugs were not covered or not covered without a really significant out-of-pocket cost.

Insurance brokers

Should cancer patients use an insurance broker?

I always recommend working with a broker because this is what they do. They have you list your medications, your doctors, and your scans then they refer to your policy to explain what you’re covered for.

I know some people sign up for one thing for the first six months and then sign up for the second thing for the second six months because there [are] different benefits to different parts.

Insurance brokers who specialize in Medicare are paid by the plans so you pay nothing out of pocket. I believe [they] are really key in designing coverage that will actually cover what you need to have covered.

hands on laptop with notebook on the side

How do you find an insurance broker?

I believe all insurance brokers have to have a license. You can always Google “insurance brokers in my area” with your zip code.

I recommend that you look for a broker that specializes in Medicare and then I suggest you ask, “How many people with metastatic breast cancer have you worked with?” It really is a bit of a niche.

I have some insurance brokers that I work with and I send the people with MBC to them because I know that they have done the extra work to really understand metastatic breast cancer.

There are also brokers in the marketplace so they would help you design or pick the right plan within the marketplace as well. A Google search would usually give you somebody.

I also recommend that you ask the social workers or nurse navigators at your cancer center. A lot of times, they’ve worked with people and developed relationships with brokers that have some kind of expertise or extra training.

Financial assistance programs

Most pharmaceutical companies will have a foundation and specialized copay assistance programs.

Copay assistance programs are designed to help you with your copay. We’re in that top tier. Even if you have an amazing health insurance policy, a lot of times, based on the negotiations between the pharma companies and the health insurance company, you may have a significant copay.

If you have private insurance, the copay assistance programs can come in and defray that cost. Quite frankly, I think that’s the least that they should do because the amounts of money that are being paid out by health insurance companies are pretty significant.

Pharmaceutical companies put [in] a whole lot of time, effort, and money. They expend that in order to develop medications so the price points are set based on how much they had to put in.

When you have private insurance, you have access to these copay assistance plans. In my experience, typically the pharmacy where you get your medication filled can help you apply for those things. Otherwise, it’s a pretty easy process.

The problem many people encounter is when they are on either Medicaid or Medicare, [they] no longer qualify for those copay assistance programs. The reason for that is how Medicare is able to negotiate with the pharmaceutical companies on behalf of everybody in Medicare.

There are certain perks that are no longer offered because they’ve already negotiated as a good rate as they can with the pharmaceutical companies. At that point, some people will get a $2,500 or $3,000 monthly copay until they reach out-of-pocket maximums.

Understanding your insurance policy coverage

Regardless of what insurance company [or] policy — government, private, COBRA — the most important thing that people need to know about what they have is what it covers.

Most insurance policies are going to be hundreds and hundreds of pages long. Typically, you can get that directly from the company. They are usually in PDF so you can search for keywords.

Deductible

There [are] a couple of key things that I think everybody should know. Number one is your deductible. That’s the money that you have to pay every year before you hit your out-of-pocket maximum before sometimes some benefits kick in.

There may be more than one deductible. I have a deductible that applies to doctor’s visits. I have a deductible that applies to medication. Different numbers. I have to meet both of those. I have to pay both of those things before my insurance kicks in.

Out-of-pocket maximum

The second thing that’s super important to know is your out-of-pocket maximum. I doubt there [are] plans that don’t have this. You have to pay up to X amount and then the insurance kicks in either at a different level [or a] different percentage.

Between your deductible and your out-of-pocket maximum, that’s what you’ve got to plan to pay throughout the year before the insurance coverage typically kicks in at a higher percentage.

Sometimes you can have what’s called coinsurance — that’s usually hospital stuff or procedures. But your deductible and your out-of-pocket maximum are the two things that you really should know and have in your mind.

Number one, you have to budget for that. Number two, it’s really nice to be able to walk into a doctor’s office and be like, “Nope, I’ve met my out-of-pocket maximum. I don’t have a copay today. I don’t have anything to pay.”

Limits on scans

In addition to knowing those big picture numbers, knowing other numbers like what kind of scans and how many will my insurance cover.

Medicare is the most restrictive. There’s actually a lifetime limit on PET scans, which many cancer patients get.

A PET scan is where you are injected with a radioactive isotope that reacts with metabolic activity. Because cancer is really, really active, you have things that light up — or you hope you don’t have things that light up. When you have cancer, things light up and that can give a doctor a really good understanding of how metabolically active the cancer is.

Why would insurance deny a PET scan?

If your doctor orders a PET scan, sometimes — and, quite frankly, a lot of times — the insurance company will challenge that order by saying, “Is this really necessary?” Every doctor’s office I’ve dealt with knows how to deal with that. They schedule [a] peer-to-peer where your doctor is talking to a doctor that’s hired by the insurance company.

Peer-to-peer review

Here’s something really important. Your plan says what you are entitled to in that peer-to-peer discussion.

What’s a peer? The first peer-to-peer conversation that my medical oncologist had, who had 30-plus years of experience, was talking to somebody who is a family medicine doctor who had been out of medical school [for] five or six years. Are those peers? I don’t think so.

I objected. Unfortunately, my doctor had to do the peer-to-peer a second time, but they actually provided an oncologist with a similar level of experience.

As a person who is paying the premiums, typically, that is in your policy. You are entitled to have the insurance company pay for a peer to talk to your doctor. In my experience dealing with a lot of these and my own personal experience, when an oncologist is talking to another oncologist, things don’t get denied as frequently.

When your oncologist is talking to somebody who has a specialty that’s different from oncology, there’s a huge amount of education that has to happen. Your doctor should not have to spend time justifying the treatment plan.

They should be able to talk to somebody who understands what they’re talking about. That is different from if you’re trying to do something experimental, but, at a basic level, you are entitled [to] your doctor to be able to talk to a peer.

Typically, when an insurance company denies something that is standard of care or is typically done, that’s it. They have [a] peer-to-peer discussion, it’s approved, and it goes forward. If it doesn’t, then there are other things that have to happen.

Before many insurance companies pay for a PET scan, they will require a bone scan and a CT scan. [With] a bone scan, you’re ingesting some kind of radioactive tracer that reacts with different things in your bones so cancer, instead of lighting up on the scan, shows up as black. Sometimes MRIs then are ordered to look at the organs more carefully.

This is the thing that I’ve heard from doctors. Doctors like different scans. They like looking at different scans. They like comparing different scans. If you’ve already always had one kind of scan, they like to look at that other kind of scan.

Your doctor is going to be the one to know what scan they need in order to see what they need to see. They will work with your insurance company the best they can to get the images that they need in order to make good decisions.

I know that some people get really, really, really upset when they can’t get a PET scan because their insurance won’t cover it. Doctors know how to deal with this. Whereas some doctors think PET scans are the gold standard, they also can work from a CT scan and a bone scan.

The biggest thing with this is not to worry as a patient. The doctor is going to do what they need to do to get the scans that they need to get you the care that you need.

Yes, insurance companies are a bit of a gatekeeper when it comes to this, but if it’s really necessary, your doctor or their office knows how to get things covered.

The healthcare system is hopelessly confusing and hopelessly broken in so many ways that we need every advantage we can possibly find in order to navigate all of it.

The thing that I’ve learned [from] all of this is that everything’s negotiable. If you need a particular test or scan and your insurance company is not cooperating or your doctor is struggling to get things approved, call up companies, ask for a reduced rate, and ask for them to waive their fees.

Even if you have private insurance, ask for Medicare rates because those are usually lower than health insurance is able to negotiate. Medicare is negotiating on behalf of millions of people so they can get better rates. A lot of times, there’s a lot of room to work with if you need a particular thing done.

Another thing that I’ve noticed is when a particular medication or procedure is approved by the FDA, it can take a little while for that medication or test to be added to the list at your insurance company. If it’s a medication, it’s called a formulary.

[If] something is approved by the FDA, it probably won’t be added to the formulary for a couple of months. Sometimes, that can create some delays for patients. “Hey, this new medication just got approved by the FDA. I want to get on it right now. I’ve been waiting for it.”

Unfortunately, that can mean a bit of a delay just because it does take some time for health insurance companies to get all the information they need from the pharmaceutical companies into their formulary, figure out how much all the costs are, [and] do all the negotiations.

It can be a really complicated process. In that particular situation, that’s where the foundations that are attached to the pharmaceutical companies can often get you some supply before they work out all those kinks.

Current Procedural Terminology (CPT®) codes

In order to get reimbursed for the things that they’re doing, they have to use a CPT code. Every procedure, medication, time, or anything they want to get reimbursed for, there’s a code for that.

There’s been a recent controversy where some of the CPT codes changed. There’s a particular surgery called the DIEP flap surgery that a lot of people who are getting mastectomies and reconstruction like to get. In the way that they changed the reimbursement schedule, it means that doctors will probably no longer offer that surgery and so a lot of people are very concerned about that right now.

There is a separate, administrative body that sets not only the CPT codes but also recommended reimbursement rates. Once that’s been set, the coders in the doctor’s office send a billing document. Then they have the CPT codes and they’re billing for whatever procedure was done.

Now, these coders are doing this all day long. These are human beings. They’re selecting codes and, hopefully, it’s correct.

For those of us who are having the same visit every month, the same blood work every month, saving those explanations of benefits that you get from your insurance company, you can spot trends. You can [see] what they’re billing for every single time so if they’re suddenly billing with a different CPT code, you can see [if] that was something they did incorrectly.

Setting up payment plans

Every single doctor’s office and medical practice is set up to do payment plans. If you need to spread out paying for your medical bills at $20 a month or $5 a month, whatever payment plan you can afford, setting that up in advance is always better than getting a call from a collection agency.

Talk to your doctor’s office and say, “How can we do this? How can we set up a payment plan?” Then you’re meeting an out-of-pocket maximum by spreading out those payments.

I have not heard of any medical practice that won’t waive interest if you’re consistent with your payment plan. Ask if they would waive interest so it’s not like you’re financing a debt. You’re just on a payment plan until you pay it down.

Most, if not all, cancer centers will have a financial aid office. Sometimes it’s run through a chaplain’s office or benevolent office. Just like pharmaceutical companies, about every major cancer center has a foundation attached to them.

Now, a private doctor in private practice may not have a foundation, but you can bet — and it’s a sure bet — that they’ve worked with people who have financial struggles because of medical treatment. Approaching them upfront and saying, “Look, this is going to be an issue,” and working out a plan is one of the best possible things you can do.

Social workers are the ones who usually have the most information on what local organizations provide financial assistance for patients. There are lots of them. Social workers are a great point of contact.

Sometimes a nurse navigator will have some of that information as well. Start with the place [where] you receive your medical care from and work with them on how to meet those bills.

Financial assistance from cancer organizations

There are organizations that have various funds. The American Cancer Society has a fund. If you get on their mailing list, then you find out when that fund opens.

There are many different funds. Some will be specific to, say, people of color, people with MBC, or moms. Whatever the particular circumstances are, get on those mailing lists so that you know when there is a fund opening.

Living Beyon d Breast Cancer also has various funds — some focused on MBC, some focused on young women, etc. The Susan G. Komen organization also has some funds available.

Universally, what happens with these funds is that they open and close pretty quickly. Everybody’s waiting for them to open so that they can apply.

There’s a wonderful organization in the northeast called Infinite Strength that specifically focuses on financial support for single moms with metastatic breast cancer. You have to have a child under 18 in the home. The Cancer Couch typically just funds research; that’s another place where people will raise money.

There [are] a couple of other organizations that will fund very specific things. It will fund, say, just medical costs or just your mortgage, utilities, etc. There’s something called the Pink Fund out of Michigan that’s pretty much funded by the Ford Corporation. They also provide funding.

Abigail Johnston Surviving Breast Cancer org

Every single one of these organizations has an application process and most are related to household income. People at 100% or 400% of the poverty level seem to be the range that I see.

Then there [are] other places where you say, “I have this diagnosis,” and they give you a gift card or they give you $100 whenever their funds open.

Unfortunately, there’s no place where all of this information is kept. Most people who are in this situation are looking at every different possibility. Some social workers will be a really good contact for that.

At the end of the day, cancer is expensive and financial toxicity is real because there’s only so much money to go around.

I think one thing that is very important for everybody to know is that as a consumer, you are protected by the Fair Debt Collection Act. If you are being called, i.e., harassed, by a collection agency or even by your medical office, if you say, “I dispute this debt, I do not owe this debt,” for whatever reason — you don’t even have to give a reason — they are no longer allowed to call you, harass you, [or] send you letters.

They have to stop or they incur fines. The only thing that they can do, at that point, is [to] file a collection lawsuit against you, which is something that most are not going to do unless it’s a large amount of money.

Don’t keep taking the harassment. If you’re being harassed and you legitimately cannot pay a bill, simply explain. “I don’t agree with this bill. I don’t agree that I owe this. Please stop calling me.” They have to stop harassing you.

Way down the line, bankruptcy is an option. I think I saw a statistic that over 60% of bankruptcies in the United States are filed because of medical debt. That is probably one of the big reasons why most medical offices, cancer centers, etc., will enter into payment plans with people because they know if they don’t, they’re going to get nothing and something is better than nothing.

There [are] a lot of options and different possibilities. The one thing they cannot do is refuse to provide care. If you are going to a cancer center and you have bills, they may put some pressure on you to pay them when you go, but they can’t refuse care based on a bill that is pending.

Words of advice

If you have a caregiver or somebody in your life who is looking for something to do for you, organizing the medical piece of things — gathering the information with your insurance policy, keeping track of your explanations of benefits — [is] a great job to give somebody who is organized [and] wants to help.

Have a notebook [when] you’re talking to insurance companies, your doctor, drug companies, whoever you’re talking to. I have a notebook that sits beside my computer. I’m immediately writing down [the] date, time, who I talked to, and what happened.

I always ask for confirmation numbers, whatever can get them back to whatever discussion [we] had. I don’t know about anybody else but once chemo brain happens, there are just things that don’t stick anymore.

Unfortunately, it’s confusing. For instance, my mom went in for chemotherapy. They walk out and they’re like, “You owe us $40,000 or you can’t get chemotherapy. Oh, but by the way, if you cross the street, you’ll pay $50 out of pocket.”

A lot of people don’t understand that prices for medication change based on how you get it, like a pill, injection, or infusion. It’s the same medication but it’s billed [in] different ways.

Then it’ll be billed differently whether you get it in a doctor’s office, in an outpatient center, in the hospital, outpatient at the hospital, [and] inpatient at the hospital. That’s insane because there’s no way any patient could ever know those things except by shopping, basically, or if there’s a social worker who’s very aware of that.

In the situation with my mom, they were like, “Just walk across the street.” Yes, it’s business, but I do find that most of the staff really want to find a solution for the patient. But sometimes, it’s just hopelessly confusing.

There is a bill pending called the Cancer Drug Parity Act that would streamline that for the patient. You pay the same no matter how you get your medicine, no matter where you are. But I don’t know that it will ever pass because it would affect millions of contracts that are being made all the time between all of these different entities.

Part of the Cures Act says that when you get a scan, as soon as the doctor gets it, you have to get it at the same time and that’s usually pushed out in a patient portal.

Medical practices have to be upfront as far as what they’re charging. Typically, when I walk into an urgent care center, there’s a poster and it’s like, “This is what you’ll pay if you have insurance. This is what you pay if you’re paying cash.”

Usually, if you’re having a procedure or getting medication, they will give you an estimate as far as what it will probably cost. Hospitals and doctor’s offices are required now to be more transparent about those things.

If the cost of something is not covered by your insurance policy, [if] you’re going to have to pay some out of pocket, [if] you haven’t met your deductible or your out-of-pocket maximum and you know you need to have a payment plan, these are all things that are good to just ask about upfront. Sit down with the financial person to work out a plan.

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Amy’s Stage 3B Colorectal Cancer Story

Post author By Katrina Villareal
Post date March 25, 2023
No Comments on Amy’s Stage 3B Colorectal Cancer Story

Amy’s Stage 3B Colorectal Cancer Story

Amy was told her symptoms were all in her head. As a mom of two, she began to feel “off” and tired and got some bloodwork to assess her health. After her bloodwork returned clean, her doctor attributed her symptoms to anxiety.

She started seeing a counselor and prioritized her mental health but her symptoms only got worse. After finding blood in her stool, she demanded a colonoscopy.

After the procedure, her doctor admitted he was wrong and Amy was diagnosed with 3B colorectal cancer.

She voices how advocating for health saved her life, the importance of knowing your genetics, and how she’s working to break the stigma of colorectal cancer.

She shares her experience undergoing stomach surgery, learning to live with an ostomy bag, and finding her “new normal” after cancer.

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Name: Amy H.
Diagnosis:
- Rectal cancer
Staging: 3B
Initial Symptoms:
- Feeling off
- Abdominal pain
- Bloating
- Weight loss
- Blood in stool
- Thin stool
- A massive shift in bathroom habits
- Exhaustion
Treatment:
- Radiation
- Chemotherapy: Xeloda & oxaliplatin)
- Surgery: total proctocolectomy with ileostomy, APR reconstruction, and radical hysterectomy

Let it out, cry it out, and then get up and try to live every day the best that you can. It slowly, slowly, slowly does get better after cancer.

Table of Contents

Introduction
Pre-diagnosis
- Initial symptoms
Diagnosis of Stage 3B Rectal Cancer
- What is Lynch syndrome?
Treatment of Stage 3B rectal cancer
Follow-up protocol
Living life with an ostomy bag
Living life with Lynch syndrome
Words of advice

We all just do the best we can where we’re at. If I just do one step at a time, one test at a time, one idea at a time, I’ll get there.

Introduction

I’m 37 [and] am a mom of two young girls. Being a mom takes up so much of my life. It’s very encompassing, but I love spending time with them.

I love concerts, spending time with my friends, [and] traveling to new places.

Pre-diagnosis

Initial symptoms

About a year before my diagnosis, I really was not feeling myself — rundown, irritable, [and] not feeling good. I chalked it up to being a mom.

I saw my primary care physician and had some blood work done. Everything came back standard. My symptoms weren’t really directly [associated] with colon cancer at that time.

I sought mental health treatment, [talked] to a counselor to figure out if this was something going on in my head. I know that’s a common theme among women who’ve been diagnosed with cancer. We tend to be given this list of other reasons that it could be and then we run down that list.

My more acute symptoms came closer to my diagnosis and that entailed really intense abdominal cramping. I had a total change in my bathroom habits.

I was [losing] weight and I was not intending to. I’m a smaller person. I was looking very thin, even for me.

I went from being slow-moving in the bathroom [to] things running through me. I could tell something was up that way.

Then finally, the very serious symptom that usually pushes people over the edge: I had blood in my stool.

It was a week before our family went on a camping trip. We love these cabins in northern Arizona and we go often. That week before that, I was starting to have blood. At first, I was just like, “Let’s hope that goes away, whatever that is,” and it just continued and continued.

I remember thinking, I’m so embarrassed. I don’t even want to have to tell my husband [or] my doctor any of this, but I knew that it was going to take something serious to figure out what was going on.

At that point, I knew. I had [a] family history of cancer. My grandma [had] colon cancer when I was a baby, literally a newborn. She fought colon cancer in 1985. And so I had in my mind that this is not normal.

I went to my OB because as a woman, I feel like you just look to your OB first. She said, “No, this is not normal bleeding for hemorrhoid or post-childbirth.”

The bleeding was probably the biggest indicator that something was truly wrong, but those other symptoms can be a little vague. Knowing your family history and your body [are] really important.

It was late summer, right around August. [In] September, things started to progress. I put in to see my OB. She could see me two and a half weeks later. Saw her two and a half weeks later. She told me, “This is wrong. This is not right.”

I could feel him saying it’s so unlikely that this is colon cancer, especially colon cancer that’s causing you to bleed. But the alarms in my body and my mind were going off.

She referred me to the GI who saw me, again as it goes, two and a half weeks later so now we’re in October. [I] had to kind of fight him for that colonoscopy and basically tell him, “I don’t care if I have to write the check. I don’t care what it takes. I need this colonoscopy to know what’s going on inside of me.”

It was a little intense because I feel like I could feel him saying it’s so unlikely that this is colon cancer, especially colon cancer that’s causing you to bleed. But the alarms in my body and my mind were going off.

I remember there was a point where it was like, “Either put me on the schedule or just call your security and they can escort me out because I need this colonoscopy.” He was like, “Whoa, whoa, whoa, Miss. It’s okay. I will give you the colonoscopy.”

He was happy to do it for me. It scares me sometimes to think that had I just accepted the answer, had I not been the hard head that I am, this might have not happened in the time frame that this all happened.

I needed that colonoscopy so I could get into treatment so that I was ready for surgery because the world shifted after all of this happened.

I found myself having to really pull that backbone out and say, “Nope, I need the colonoscopy. I don’t care how unglamorous, I don’t care that I have to do prep. I need it.”

Something I’ve learned through this about colonoscopy is that’s really important to know exactly what’s going on in your colon. It’s the best way for doctors to diagnose you if you are having symptoms. Of course, if you’re 45 or older, no questions. You need to get it done.

Even with my family history [and] the acute symptoms I was showing, it was pretty startling to me, looking back, how I still had to advocate so hard. I really shouldn’t have because I had all of these things lining up.

I think it’s why I really want to get this out there. You know your body. I was telling medical professionals, “Something is wrong with me.”

To their credit, they’re going off of so many numbers, but the numbers are changing. Genetics and genetic predispositions, we’re learning so much so quickly. They’re playing catch-up.

Diagnosis of Stage 3B Rectal Cancer

Once they did the colonoscopy, to that doctor’s credit, he did come and face me to say, “No, I was wrong. You have cancer.” He didn’t use the word advanced cancer. He just said it’s not new. It’s been there.

Come to find out that it probably wasn’t. It was likely about two years. Because of the Lynch component, I think it propagates faster. It’s one of those things [of] him not knowing as much about Lynch as probably a doctor who is in GI now coming through. I’m sure now he handles it much differently and is educated, but it is hard to be that kind of person who shifts over the understanding.

It was an intense conversation, but I felt like, “I don’t even care what you think of me, Doctor. I’m going to say I need this. If I’m wrong, great. That’s the beauty of this test. We can know that.”

I was very drowsy from my colonoscopy, but he had to come out, grab my hand, and say, “Amy, it is cancer. You were right.” I know that was probably a watershed moment for him in his career, too, because he did tell me I was one of the only patients he’s ever diagnosed that was under 50 or 60.

I’ve talked to other people in the colorectal world about this since then. Sometimes, it’s a wonder if you’re not getting people diagnosed because you’re not providing the screening to them that they really should be getting. How many people slip through the cracks?

I know every person who shares their story says, “Be your own advocate,” and then when they push back, go further. Push more.

Initially, when I came out of the colonoscopy, the GI doctor told me he didn’t think it was new, but he believed that I was probably about stage 2. It was arbitrary at that time, but he was looking at the size of the tumor, where it was, and everything. They really can’t tell you much initially.

I left that colonoscopy knowing I had cancer, knowing it was not a little tiny nothing that they could have taken out. He didn’t touch anything when he was in there because he was so nervous about where it was at. Was I right on the verge of it breaking through my wall, the colon wall, or any of that?

You get thrown back out into the universe with, “Okay, now you have cancer and it’s going to take about a week for us to do this test, this test, this test, this test to say you’re either stage 1, 2, 3, 4.”

During that time in between, I remember saying, “I want to remember this time,” because I didn’t know if the cancer was everywhere. Immediately, it felt like, “Oh my gosh, my body is riddled.”

Thankfully, I was able to have those three procedures within that week’s time. I had a more intense colonoscopy then I had [a] CT and two MRIs to come out with the diagnosis of stage 3B, which means that it had not broken through that wall. It was very close. We were very close to widespread impact.

The GI doctor referred me to their person; I went a whole different way. But the oncologist I found, he’s amazing.

[He] and his team right away said, “This is Lynch syndrome. We want you to have the blood test, but you likely have Lynch syndrome. That’s why you have it so young and that’s why it’s so advanced.

“Here’s what we’re going to do if this test comes back positive. Here’s the plan.”

They never told me what the other plan would have been. It was like, “We’ll talk about it if it doesn’t come back positive,” but it did come back positive.

My tumor itself is a Lynch-related tumor, but it’s not MSI high (high microsatellite instability).

What is Lynch syndrome?

Lynch syndrome is a genetic predisposition to certain cancers. There is a list of them but most notably, it’s colon cancer.

In 2011, I lost my mom [to] uterine cancer. At the time, they didn’t quite understand the link between the two. Lynch syndrome was already being talked about, but it takes time for the information to get out there.

Unfortunately, when my mom passed, it was just like, “Well, that was a terrible thing and now move forward in your life.” Whereas if I had this information, they’d say, “Your grandma passed of colon [cancer], your mom passed of uterine [cancer] — these are Lynch family cancers.

“You need a colonoscopy now and have them every year, every three years, depending on your results of those,” and I would have caught my cancer before it became a bigger issue for my body.

The beauty of screening is some of these treatments for early, early stage cancers, especially treatable cancers like colorectal cancer, are very simple procedures. You go home at the end of them. I wish I had that information, but because I had [a] family history, I truly believed that I had something really wrong with me.

The women in my family had a rough go and I felt like, “All right, it’s my turn now,” and that was in the pit of my stomach. So my mom and my grandma did not die in vain.

Every person’s treatment plan is so individualized. But knowing that ahead of time, we went with a treatment plan that made sense for Lynch syndrome, which included a pretty drastic surgery.

That all happened within a week. Two weeks after getting diagnosed, I went in to get tattooed on my hips and started daily radiation.

We’re well into it and need to act quickly. They moved really fast to get me into treatments right away.

I had just turned 34 in May and this was the end of 2019. I felt really young. I meet people who were in their 20s when they were diagnosed. Sometimes it feels like people didn’t even get a chance to really start their life before they were dealing with this alternative life.

But well beyond Lynch syndrome or colon cancer, understanding your genetic makeup is so pivotal to your health care. We’ve heard about it all over with BRCA and Lynch syndrome is just another one of them.

We just need to get people in tune with their family history. Ask questions. I’m sad a lot of my family members are gone, so I can’t ask them about people in the past.

Amy H. in the hospital for treatment of 3B Rectal Cancer.

Ask questions while your parents are here, especially people my age. Get that information down. A lot of people’s families hide colon cancer because it’s not glamorous to talk about. It’s embarrassing. We’re more willing to talk about poop, bathroom habits, and colonoscopies than our grandparents were so make sure you are getting the full story.

That’s really tough but it’s a sad fact. I am not that uncommon anymore and it is showing up more and more.

There [are] all kinds of theories around why and we can theorize and all of that, but I think part of how we handle this is that we start changing how we’re treating our patients, screening them, [and] hearing their symptoms.

We need to stop telling women that they’re anxious, stressed, need more sleep, less coffee, lose weight, or whatever it is.

Women know their bodies. I’m not saying anything that men don’t, but we know our bodies. We know what’s normal for us so speak on it.

If you’re feeling something different inside of you that you’ve never felt before, it doesn’t hurt anyone for you to look into what it could be.

If you’re feeling something different inside of you that you’ve never felt before, it doesn’t hurt anyone for you to look into what it could be.

Amy H.'s stage 3B Rectal Cancer surgery scar.

Treatment of Stage 3B rectal cancer

I tend to think, Gosh, my alarm bells went off just in time to get me in for that colonoscopy so that I could start my process.

My oncologist referred to it as a marathon so we did it in three legs. The first leg was [the] initial radiation and chemo. Six weeks [and] took some time off.

Surgery was the second leg, which is a bear. I had a 9.5-hour surgery. I had what’s called total proctocolectomy with APR reconstruction. They took everything below my small intestine and rebuilt my bottom with muscle and tissue from my abdomen. I was cut open on my abdomen. I had an ileostomy placed [and] live with an ostomy bag now.

At the same time, because of this genetic component [of] Lynch syndrome, I chose to have an elective hysterectomy. Had two kids, really fortunate to get to be a mom. Love my kids and I love children.

The idea of my life going farther, who knows what would have happened? I could not have that risk. I wanted every risk out of me. That was just the way I felt [at] that time. I said, “Take it all, doc, literally everything.”

They removed [part] of my tailbone because of where it was. They were worried about it. I said, “Don’t need it. Don’t need it.” That was tough.

After surgery, I did have a nine-week break then I went in for IV chemo, which was just another part of the marathon. I did six treatments and slowly started to ease back into trying to be a normal person or the person that I used to be.

Follow-up protocol

I’ve learned through that process that there’s no going back to square one or to normal — not with your body, not with your mind, not with everything.

I feel really good, which always kind of worries me a little bit, but I’ve had no evidence of disease since my surgery. I’ve had all clear scans.

I do a tumor residue blood test. Thankfully, all of those have come back clear.

My ostomy works great. I’m learning, growing, and accepting that and just my body overall after everything that’s happened.

Amy H. ostomy bag. Amy's is for her small intestine so it’s referred to as an ileostomy.

Living life with an ostomy bag

[An] ostomy bag is worn on your abdomen. Mine is connected to my small intestine so my small intestine comes out of my abdomen. There’s a tiny little piece of it called a stoma; it’s just another word for opening.

You can have a stoma for your bladder, you can have a stoma for your colon, or you can have a stoma for your small intestine. Mine is [for the] small intestine so it’s referred to as ileostomy.

Different ostomies have different schedules, but I tend to change my bag every third morning. In between that, my bag just stays on. I empty it when it’s full.

My life as far as using the bathroom is altered but the only part that’s really impacted by that is the part that happens when I close the door and no one’s in there with me.

[As] life does, it takes a really long time for it to re-settle down, but it does settle back down.

Living life with Lynch syndrome

Through talking to other people who’ve been through this, I’ve been learning how to live my life with Lynch syndrome. It’s a roller coaster.

I have to be scanned more often than the average cancer survivor. I have a myriad of tests because I have these other risk factors.

I think it’s been going pretty [well]. This is hard for anyone. It’s a total change in your perspective. What your daily life is like changes.

It gives me this new drive. I really want other people to know about this. I want other people to know about going through cancer treatments and what that’s really like so you’re not feeling like every post is only [about] the positive side of it.

When I first started sharing my journey, that was where I was at. I was like, “I’m gonna do this. I’m gonna do it with a smile. I can handle this.” There are parts of it that if I just wouldn’t let myself feel those feelings, I don’t think I would have ever come through them.

My tagline, I think, is just being authentic through everything that’s happened to me. There are parts of me that I feel have grown. I appreciate the person I am now.

Amy H. is a stage 3B rectal cancer survivor.

There [are] other parts of me that feel like I was damaged during this. My mind is still trying to grasp: how does somebody go through this and keep going?

Part of my success in it is truly just seeing other people do it. Other people have lived this. I’m not the first person. I’m not the first person with an ostomy. We just got to keep changing how we talk about this stuff, making it less taboo.

On the other side of it, after cancer is over or after treatment is over, is the fact that this is [a] different kind of fight. Keep going and use that shifted perspective for positive things.

Shifted perspective brings me down sometimes because I see so many people walking around not taking advantage of their health or taking advantage of [the] knowledge that’s available to them.

I also feel a lot more self-assured. I feel like I can do things that I didn’t think I could do before. I’m more independent as a person. I’m more confident. I’m more willing to look at myself and say, “All right. This is the body you have now.”

One of [the] first things I wrote that really started to change the tide of how I was sharing my story was, “Are you just going to lay here and cry about this all the time or are you going to get up and live?” Got to get up and live.

Let it out, cry it out, and then get up and try to live every day the best that you can. It slowly, slowly, slowly does get better after cancer.

There are other parts that you have to have as a challenge, like going in for more screenings and staying on top of that.

I don’t think I ever heard of an ostomy before. When I was told that I was going to have an ostomy bag, I heard him say bag. I understood what he was saying about removing my colon and it was a little foggy there. But one of the first things I did was I went home and looked online.

I looked up “ostomy” on Instagram and wouldn’t you know it, there [are] a lot of really amazing people that have an ostomy. Not only are they amazing, but they’re smart enough to know that when you go looking for support.

I can go into a support group without anyone even knowing I’m there if I just look up #ostomy online. I can read about people who are doing this every day. I can see women in bathing suits owning this.

I thought, Gosh, I’m not even going in a two-piece bathing suit on my Instagram before my ostomy bag. I’ll never in a million years do what they’re doing. But seeing them made me realize that people are living with these things. It was really powerful for me.

I’m driven in this format of Instagram and social media [because] it’s so casual. People can see it and the more they see ostomy bags, I feel like that taboo comes down. We feel less like we have to hide it away or whatever.

When I heard, ostomy felt to me worse than cancer. I just was like, “You’ve got to be kidding me. My life is going to be over. I’m going to be a monster. I don’t even want this.” I just melted down.

Then I could see people living positively with an ostomy and see women my age having one, too. It feels like you hear that, you start looking at it, all the brochures are old people. It doesn’t feel like a 34-year-old woman should have this.

I slowly got my mind wrapped around it. I tell people now, “At the time, the ostomy to me seemed like it would be the worst part of this whole thing. Now, the easiest part of everything I’ve been through is to live with an ostomy.” That impacts me so much less in my day-to-day life than the mental hardship of going through cancer, cancer treatment, [and] scans post-cancer.

When people come to me and say, “I’m going to have an ostomy bag,” I’m like, “Well, take a deep breath because this is a lot to digest.” It did take me time.

Any strong, brave, out-there person handling their ostomy well had those same feelings, too. They had a moment of, “I don’t know if I can even do this.”

Why I’m out here being a loudmouth is that I live my life with an ostomy. I am a mom with [an] ostomy. I chase my kids the same. I go to concerts. I hang out with my friends. I travel. I go on airplanes. I just did the Disney cruise with my two girls. I do it all with the ostomy. It’s not the way I saw my life when I was a little girl, but it’s not the worst thing.

Just keep going. Like anything we do in life, the more you do it, the less mind-blowing it is.

Go easy on yourself. This is such a hard process.

Words of advice

My message to anyone who is either recently diagnosed or still grappling with their diagnosis is just one thing at a time. One appointment at a time. Get your questions ready [and] have yourself organized, but focus on that one step at a time.

I remember trying to see the other side of surgery in my mind’s eye. When I couldn’t see that, I thought to myself, Am I going to die during surgery? I couldn’t envision what my life was going to be like. I couldn’t see myself having the ostomy and doing it.

But when I woke up [after] the surgery was over, I just did that same thing: one step at a time. I would say, “Oh my gosh, my drain’s full. Okay, drain my drain. Okay, my bag. Now I need to change my bag. Okay, one step at a time.” I remember changing my bag for the first time with shaky hands.

Just keep going. Like anything we do in life, the more you do it, the less mind-blowing it is.

Go easy on yourself. This is such a hard process. I’ve spent — and spend, I will fully admit — a lot of time beating myself up for not handling it better, not being a better advocate, [and] not knowing the things I felt like I should have known before.

I keep coming back time and time again to: we all just do the best we can where we’re at. If I just do one step at a time, one test at a time, one idea at a time, I’ll get there. It’s allowed me to learn a lot more than I ever thought was possible and make a lot of amazing friends.

Cancer is just the worst club to be a part of, but truly, the best people I’ve met are cancer survivors. So if you are there, find a support system. It doesn’t need to be big, it doesn’t need to be grand, and it doesn’t need to be the things that we see on TV, social media, or any of that.

Find a few people who get it. Talk to them. Go easy on yourself and just keep going. This is hard, but it’s doable. Life is worth living.

Cancer is just the worst club to be a part of, but truly, the best people I’ve met are cancer survivors. Find a support system.

Thank you for sharing your story, Amy!

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Rectal Cancer Patient Stories

Joanna H., Rectal Cancer, Stage 3

Symptoms: Rectal bleeding, bloating, stomach aches

Treatments: Chemotherapy (FOLFOX), radiation

Catherine P., Rectal Cancer, Stage 3

Symptoms: Rectal bleeding, constipation, bloating
Treatments: Chemotherapy (Xeloda, CAPOX), radiation, surgery (tumor resection)

Jackie S., Rectal Adenocarcinoma, Stage 3B/4, Lynch Syndrome

Symptoms: Blood in stool, constipation

Treatments: Chemotherapy (oxaliplatin & 5FU), radiation, surgeries (rectal resection, total hysterectomy, ileostomy), immunotherapy

Maria A., Rectal Cancer, Stage 3C

Symptoms: Fatigue, weight loss, fast heart rate, bladder infection

Treatments: Chemotherapy, radiation, surgery (tumor removal)

Justine L., Rectal Cancer, Stage 3B/ 4

Symptoms: Increasing bowel movements (up to 20 a day), some rectal bleeding

Treatments: Chemoradiation (capecitabine , FOLFOX), surgery (colectomy), SBRT radiation, cancer ablation, Y90 (radioembolization)

CAPOX (capecitabine, oxaliplatin) Colon Colorectal Patient Stories

Haley Pollack’s Stage 3C Colon Cancer Story

Post author By Katrina Villareal
Post date March 23, 2023
No Comments on Haley Pollack’s Stage 3C Colon Cancer Story

Haley Pollack’s Stage 3C Colon Cancer Story

Haley Pollack had returned from parental leave when she started experiencing extreme fatigue, but she blamed it on postpartum. At the time, she had a 6-month-old baby and a 3-year-old at home. But her symptoms weren’t going away. She was diagnosed with stage 3C colon cancer at 37.

She shares how she learned about her diagnosis, how cancer impacted her as a young parent, and how she launched an organization called the Bright Spot Network to help other parents going through a cancer diagnosis.

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Name: Haley P.
Diagnosis:
- Colon cancer
Staging: 3C
Initial Symptoms:
- Constipation
- Fatigue
- Shortness of breath
Treatment:
- Surgery
- Chemotherapy: CAPOX (capecitabine & oxaliplatin)

Table of Contents

Introduction
Pre-diagnosis
- Initial symptoms
Diagnosis
Treatment
Words of advice
The future after a stage 3C colon cancer diagnosis
Bright Spot Network

I didn’t feel good, but I did not feel sick. If the blood work hadn’t been covered by my insurance, I wouldn’t have gotten it, 100%…
That blood work ultimately saved my life.

Introduction

I’m a mom of two kids, Amira and Mona. I live in Oakland, California. I have a dog. I’m a knitter.

I’m the executive director of Bright Spot Network, which supports families where a parent has a cancer diagnosis.

Pre-diagnosis

Initial symptoms

In April 2018, I had my daughter Amira. I was 37. I had a really normal pregnancy [and a] pretty normal birth, but throughout my pregnancy, I was really constipated and had stomach pains. I was pregnant so [it] wasn’t super atypical.

After I had her, it got really bad, but I was nursing and was probably dehydrated. All these things [I was] really able to explain away.

Constipation had become pretty debilitating. Finally, my husband was like, “You don’t have to live this way. Go to the doctor.”

I get there and I’m telling my doctor, “I’m constipated,” and he gives me some stuff for that.

But I’m also a little short of breath and I’ve been really tired. I had been basically gaslighting myself and telling myself that it was all related to being recently postpartum. Thankfully, my doctor didn’t. He said, “Let’s just get some blood work.”

»MORE: Read Nadia’s account of medical gaslighting

I got my blood work. I didn’t feel good, but I did not feel sick. If the blood work hadn’t been covered by my insurance, I wouldn’t have gotten it, 100%.

The next day, the lab called me. “Don’t get in a car, don’t drive. You are anemic. We don’t know how you’re standing on two feet.” That’s how it started.

The anemia [was] really what snapped me out of it. When my doctor [requested] blood work, it made me feel like maybe there is something else here. I felt like I was gaslighting myself. Of course, I’m tired. I’m a new mom. But [I’m] not really recognizing how deeply fatigued I was.

I felt like I was gaslighting myself. Of course, I’m tired. I’m a new mom. But [I’m] not really recognizing how deeply fatigued I was.

I think for parents, especially for women, there’s this extra that we put on ourselves that we can do all of these things. We can be [working] full-time at a really intense job, nursing in the middle of the night, and pumping at work. Doing all this stuff, it was easy to write off [the] tiredness. That blood work ultimately saved my life.

Having cancer in my family, I was shocked but not surprised to hear about cancer, if that makes sense.

Diagnosis

I finally talked to a doctor and they said, “You need to get a blood transfusion right now. Let me reiterate that we are unsure how you are walking on your two feet.”

I was in urgent care because it was a Saturday. When I went in to go get [a] blood transfusion, that was the beginning of what set everything in motion. I saw how concerned the doctors were about this anemia.

I had this low-grade fever and the doctors couldn’t figure it out and that alerted me to how serious everything was.

It’s hard to get a colonoscopy if it’s not an immediate thing. It took me a few weeks to get on the schedule. I was signed up for it pretty early on but, in the meantime, I was seeing other doctors.

At that point, people were just running through the possible scenarios. I knew it wasn’t my period and I knew it wasn’t childbirth, but it wasn’t until they told me, “You have cancer.” I still am shocked about it. I think a lot of cancer survivors and patients feel that.

After my colonoscopy, they were able to tell me immediately that they thought that I had cancer. They saw what looked like bleeding tumor in my colon and that was the cause of the anemia.

Things started to move fast. My mom died from breast cancer. Having cancer in my family, I was shocked but not surprised to hear about cancer, if that makes sense.

In the weeks, months, and years really since that time, I really thought that I knew what cancer could do to a family. I was 16 when my mom was diagnosed and 25 when she died. But it’s different to be the patient and it’s also different to have little kids. There’s a different level of anxiety.

We have a shared experience that we didn’t have before. I just want to talk to her about her experience. I went with her to get chemo. I just wanted to talk to her about it and about her own feelings. I want to dig in with her.

Right after the colonoscopy, I had a CT scan the next day. The scan basically confirmed the cancer, but still can’t stage anything.

I met with my oncologist. The timeline is a little hazy here, but from the CT scan, they were able to say, “This is the surgery that we think you need. It might look a little different, but this is what we think you’ll need.”

My understanding is that for colon cancer under stage 4, the standard of care is pretty well respected. The option I had was between the two different types of chemo.

My doctor was encouraging me to do the one that had the harder side effects so that if that was harder for me, I’d be able to go to the other chemo that is still super brutal, but some of the side effects are a little bit easier on your body. But the effectiveness of both of those chemos [is] pretty similar.

I really thought that I knew what cancer could do to a family. I was 16 when my mom was diagnosed and 25 when she died. But it’s different to be the patient and it’s also different to have little kids.

Treatment

I went with CAPOX because [with] FOLFOX, you get a chemo pump that is on your body for 24 hours. For my family, it just felt like if there was an option where I didn’t have the chemo on my body, [that] is better for my family in terms of having little kids.

Oxaliplatin was the infusion and capecitabine is an oral pill. It was a three-week cycle. I would get the infusion, start the chemo pills on the first day of the cycle, I would have two weeks of pills, have a week off, and then start again.

Side effects from chemotherapy

The worst for me was nausea. I didn’t throw up a lot, but I was very, very nauseous. For me, nausea always was worse when I wasn’t eating and chemo did not make me want to eat anything.

Whatever anti-nausea I was on it, I almost associated it with nausea, if that makes sense. I would take it at the beginning of my chemo cycle. It was like a psychosomatic response to that pill.

I didn’t advocate for myself enough to ask my doctor if there [were] other types of anti-nausea. I was taking a THC tincture that helped to isolate the munchies. I would take that and it would help my hunger.

Walking was really helpful. I experienced pretty serious neuropathy in my feet and my hands, but also just muscle. I don’t know if this is technically neuropathy, but my muscles would basically clench.

Surgery for stage 3C colon cancer

For colon cancer, if they’re able to get all of the cancer out during your surgery, you are declared NED (no evidence of disease) [on] the day of surgery.

Because my cancer was so advanced, they do chemo as a clean-up, assuming there was still cancer in [my] body. So many of my lymph nodes had been infected and the cancer had been so deep in my colon, they were making the assumption that there was probably cancer elsewhere. I got another CT scan a month after my last chemo.

Ultimately, where cancer is [in] the colon determines what type of surgery you have or if you need some sort of ostomy or other assisted technology.

I didn’t end up needing an ostomy. But now that I know a lot about colon cancer, I know a lot about people who go in for a hemicolectomy and the cancer looked a little different and that the doctor needed to make a decision.

I wish somebody told me that if you are going in for colon cancer surgery, something worth asking your doctor [about is] the likelihood of coming out of surgery with a temporary or permanent ostomy.

For me, that wasn’t true. My surgeon did tell me that there would be changes to my bowels and that did happen. But our colons are amazing. Things evened out is the way I would describe it.

The hardest thing was getting out of bed. The first time, the nurse tried to help me out of bed. That was maybe the hardest three minutes of my life.

The surgery was laparoscopic, but they do a pretty major incision to remove the tumor. But I’m really thankful to that nurse who is just encouraging me every step of the way. I really credit being able to walk around the hospital with a pretty easy recovery from the surgery.

I wish somebody told me that if you are going in for colon cancer surgery, something worth asking your doctor [about is] the likelihood of coming out of surgery with a temporary or permanent ostomy.

Enrolling in a clinical trial

Early on, my doctor said, “We’re going to try to get you into this clinical trial,” to ward off recurrence. It’s a really big trial.

A clinical trial nurse approached me about it. When I signed the initial paperwork to get enrolled, pretty soon after my very last chemo, I started receiving pills that I took every day for three years.

In addition to that, quarterly blood work and then meet with my doctor periodically [via] virtual appointments and in person a little bit more frequently. I’m still on the trial even though I’m no longer taking the pill. I’m still enrolled [and] doing research. The blood work has slowed down as well as the appointments, but I’m still continuing to communicate with the team.

Words of advice

Listen to your body. I really wish I had.

People are really scared of a colonoscopy because you have the prep. It’s not comfortable. The idea of a colonoscopy makes folks squeamish. It’s not a big deal when it comes down to it. It’s so important.

Colonoscopies are one of the most effective ways to find colon cancer. They’ve now changed the screening age to 45.

The future after a stage 3C colon cancer diagnosis

The doctors said, “You’re going to be enrolled in this for eight years.” At this point, it’s very low touch. [During] those first three years, I felt like I was meeting with the clinical trial nurse every day.

Anytime anybody would ask me anything about the future, I’d think, “Let’s just keep our fingers and toes crossed.” Unfortunately, we have a lot of cancer in our family. My mom, my aunt, [and] my grandma died.

The idea of surviving cancer is not the story that I know. Of course, now it’s different. Now I know a lot of people have survived cancer, but, at the time, it didn’t feel that way.

I remember being at work and having this team meeting where we were encouraged to write down where we hope to be professionally in five years. It was waterworks for me. I thought, I just hope I don’t die.

One of the things that I knew instinctively when I was going through it, but I’ve learned now professionally, is how important it is to talk to your kids about your cancer diagnosis.

Bright Spot Network

I had really, really good medical care. Despite their best efforts, the social workers who were so helpful in so many ways really couldn’t point me to resources for me as a new parent who was navigating this experience and navigating it for my kids.

As we know, being a cancer patient doesn’t just happen to the patient. It’s the whole family, the whole community that’s being affected. If you’re a parent of little kids, then kids are affected, too

I wasn’t able to find the resources. To be fair, it’s not that they didn’t exist, but they existed on sites for other cancer types. I’m a colon cancer patient.

That made the very terrifying experience of being a young cancer patient a really alienating one as well. And that’s so true for young adult cancer patients in general. That’s my entrance into that alienation, I guess.

Then I had a nutritionist connect me to another new mom with cancer, Aimee Barnes. We became fast friends and reflected a lot [on] how there [weren’t] resources for parents who were navigating a cancer diagnosis, even though we know that this is a key part of the cancer patient experience for young parents. From there, Bright Spot Network was launched.

“As we know, being a cancer patient doesn’t just happen to the patient. It’s the whole family, the whole community that’s being affected. If you’re a parent of little kids, then kids are affected, too.”

At Bright Spot Network, we work with parents who are diagnosed with cancer while raising young kids or diagnosed while pregnant. We focus on families with kids 0 to 6.

We have a bunch of programs. We have virtual support groups for parents in active treatment, parents in long-term survivorship, parents with stage 4 cancer, and partners of parents with cancer. Those are monthly. We periodically offer weekly groups.

So much of my cancer experience was really impacted by being a parent. One of the things that I knew instinctively when I was going through it, but I’ve learned now professionally, is how important it is to talk to your kids about your cancer diagnosis.

You might think that they’re too young to understand, but they understand that something’s happening in your family. Telling them and walking them through the journey is going to be helpful to them and to you.

Your kids are making up a story in their heads. Help them understand what’s really happening in age-appropriate ways. You can go to our website for advice about this, but that’s going to ultimately help them and help you.

It’s really about welcoming them into the process the same way that you’re perhaps welcoming other community members into your experience through helping them, through helping in other ways.

Thank you for sharing your story, Haley!

Inspired by Haley's story?

Share your story, too!

Colon Cancer Patient Stories

Shannon M., Colon Cancer, Stage 1

Symptoms: Routine colonoscopy found polyp; found the cancer as a result of Lynch Syndrome
Treatment: Partial colectomy

Hugo T., Colon Cancer, Stage 1

Symptoms: Inflamed bowel; diagnosed 2 weeks after 5-year remission from testicular cancer
Treatments: Subtotal colectomy, immunotherapy

Rachel B., Sigmoid Colon Cancer, Stage 1

Symptoms: Stomach discomfort, nausea, bloating, blood in stool
Treatment: Colectomy

Chris T., Colon Cancer, Stage 2

Symptoms: Found the cancer as a result of family history & early colonoscopy; discovered Lynch Syndrome after genetic testing
Treatment: Partial colectomy

Shannon C., Colon Cancer, Stage 2A

Symptoms: Severe pains after eating; tested positive for Lynch Syndrome
Treatment: Partial colectomy

Caregivers Finances Medical Experts Medical Update Article Spouse

Financial Toxicity of Cancer Treatment

Post author By Katrina Villareal
Post date March 21, 2023
No Comments on Financial Toxicity of Cancer Treatment

Financial Toxicity of Cancer Treatment: Dr. Chino Shares Her Story

Fifteen years ago, Dr. Fumiko Chino was the art director at an anime company, getting ready to marry the love of her life, when her fiance was diagnosed with cancer.

Today, she’s a radiation oncologist at Memorial Sloan Kettering and studies the impacts financial strain has on cancer patients.

She opens up about her late husband’s diagnosis, the financial toll it had on them, and how she’s determined to help alleviate the financial burden for other patients and their families.

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Table of Contents

Introduction
How did you and your husband meet?
Getting the cancer diagnosis
Course of treatment
What was it like being a care partner?
Looking back
The aftermath of your partner’s death
Financial toxicity of cancer treatment
How to dispute cancer care costs
What inspired you to get into medicine?
The impact of cancer treatment on Black and Latinx Americans
Honoring Andrew’s memory

Introduction

I’m a radiation oncologist specializing in the treatment of breast and gynecological cancers at Memorial Sloan Kettering Cancer Center.

I met my husband in 2004. He was diagnosed with cancer in 2005 and died from cancer in 2007.

How did you and your husband meet?

I first met my husband online. We were an early Internet couple. We met on a site called Nerve, which is where the cool kids used to meet to date.

He was a PhD student in computer science at Rice. We met in Houston, Texas. At the time, I was in entertainment. I worked as an art director [at] an anime company. Most famously, I worked on Sailor Moon.

I called him Mr. Roboto. He’s a computer scientist who specializes in robotics and artificial intelligence-derived motion.

He’s a very frantic guy. He was very driven. He was very passionate about his work and also about music and art. In that way, we kind of really dovetailed.

Dr. Fumiko Chino with late husband Andrew

It was so quick, it was so aggressive, and we were so terrified.

Getting the cancer diagnosis

Like many 20-somethings, I was still trying to figure out my life. I was so happy to have met someone that I was in love with [and] that I could envision a future with.

When my husband, at the time boyfriend, was getting sick — he was having nausea, throwing up, [and] losing a lot of weight — we really thought it was not cancer. No one [who’s] young thinks, “Oh, this is cancer.” It’s everything other than cancer.

It took a little bit of time to find his actual diagnosis, [which was] high-grade neuroendocrine carcinoma.

We had just gotten engaged. We were planning our future, our family. It was just devastating. A cancer diagnosis [when you’re young] completely interrupts your plans.

What we didn’t realize was in addition to how emotionally and physically taxing it would be [was] how financially taxing it would be.

He had had a number of false diagnoses before he came up with cancer. He was told he had IBS. He was told he had celiac disease because he had a lot of cyclical nausea, vomiting, [and] weight loss. He ultimately went in for an endoscopy [and] they didn’t find anything.

They finally did a CT scan and found all of these enlarged lymph nodes throughout his thorax and, particularly, a mass that was compressing his pancreas, which was causing his GI dysfunction.

When they biopsied it, they found that it was not lymphoma, which is what we thought it would be. I knew we were in for a delightful cancer adventure with [an] unknown destination. It was such a long time period between the initial workup and when we actually found out what kind of cancer he had.

We had just gotten engaged. We were planning our future, our family. It was just devastating. A cancer diagnosis [when you’re young] completely interrupts your plans.

We actually jumped ship in Houston and I manifest my own privilege by going to where my mom is a radiation oncologist. We went to her facility to facilitate the workup.

I think like many young people though, it was so quick, it was so aggressive, and we were so terrified.

I remember having [a] discussion about whether or not we should do sperm banking. They said, “It’s going to delay the process of starting chemotherapy by about a week.” It actually takes way less [time] for a guy than it is for a woman, but even that week felt important because you could actually feel the lymph nodes in his neck growing. And so we said, “We won’t do that. We’ll just move forward with chemotherapy.”

He started on a Saturday. In medicine, when I say he started chemo on a Saturday, they’re like, “Oh yeah, they really wanted him to start because no one starts on the weekend.” We were just terrified.

We didn’t realize that insurance was going to be a problem. At that point, insurance had kind of covered everything.

Course of treatment

He started the treatment for intense chemotherapy, platinum-based therapy, on a Saturday. By Monday, when he saw his oncologist, he could feel the difference. It actually responded that quickly, which made us think it was the right thing, even though we knew it was a sacrifice for our imaginary future children.

He went through many, many cycles of that, had a good partial response, and had a little bit of a break. Then [he] had progression and ended up being off therapy for maybe a couple of months tops. He was pretty much always on treatment from the time he was diagnosed until the time he died within a year and a half of his diagnosis.

We didn’t realize that insurance was going to be a problem. At that point, insurance had kind of covered everything.

What was it like being a care partner?

Nobody signs up to be a patient and nobody signs up to be a caregiver but you do it because you’re trying to survive and you’re trying to support the people you love. I was so impressed with him [and] his resilience [in] being able to continue working as a computer scientist through really intensive treatment.

He always said — and this is something that he would have researched so I trust him — that he received more platinum-based therapies than Lance Armstrong did. He had a lot of cycles of chemotherapy.

He had standard nausea, vomiting, [and] weight loss. He had diarrhea, incredible pain, [and] a lot of anxiety. It was this constellation thing, which means that we were in the emergency room all the time. We were admitted to the hospital multiple times.

He dealt with a series of infections and it was just a lot to balance everything. I was still trying to work. I think our income was important to preserve as well.

At one point, I remember he wasn’t answering his phone. I texted him, “Are you doing okay?” He didn’t answer the next. Two hours later, I called him. He didn’t pick up the phone and at this point, it’d been four and a half hours [I’d] been trying to get ahold of him. I ended up actually driving home from work to check on him. He was just doing computer science coding.

Looking back

It’s really interesting because I actually tell my story fairly frequently because it’s a motivator for the research that I do. My spiel is pretty well-polished but sometimes, if I’m trying to provide a little bit more detail or color, I’ll think of a story and it brings up those memories and those hopes and fears that come along with that.

Because I’m interested in oncofertility, [I] just recently realized that that process — the delays, the fear, and also the costs — is a real barrier to a lot of people taking advantage of that. They may end up surviving cancer but then having some other fundamental freedom removed from them.

Trying to be a new widow — I was 29 trying to reinvent myself and my life — was just really challenging.

The aftermath of your partner’s death

There’s no guidebook for great loss and there [are] many manifestations of it. I think it kind of hits you like waves. This is what changed. This is what’s different. This is what my future is.

I was uninsured after he died, actually, for almost two years. I lost my health insurance with his loss.

I also lost my purpose. I had these debts. We had moved to Michigan for his faculty job and I was sort of stubbornly sticking out there. I didn’t actually have a support system there either. I coupled one together. Cancer and any serious illness really expose the fault lines.

Nobody really has it together in their 20s anyway. Trying to be a new widow — I was 29 trying to reinvent myself and my life — was just really challenging.

We had his student health insurance from Rice, which basically had a lifetime cap for its payouts for a single diagnosis — something that was allowed before the Affordable Care Act. A single diagnosis would cap it [at] $500,000. And after that, there was no more insurance coverage for that diagnosis. That is something that we met within roughly a year of his diagnosis

Financial toxicity is incredibly common and, unfortunately, it’s going to manifest in someone in your clinic even if you don’t see it.

The first exposure [to] the fact that his health insurance was poor was that he had a cap on his pharmacy payout. That one we ran up pretty quickly, within several months of his diagnosis. It was a $5,000 payout, which is insane because a single cancer medication can sometimes cost $5,000. But we blessedly didn’t find out until later.

When we started having to pay out-of-pocket for his Zofran, Lovenox, medications for his anxiety, [and] pain medication, that’s when we first found out. That was sort of the blood in the water then the sharks come and we were just under.

You hit that cap and suddenly you’re in no man’s land. People will describe this [as going] into the donut hole or they reach some sort of limit and you’re in catastrophic territory.

If physicians and patients are both unwilling to talk about this dirty underbelly of cancer care, then it’ll never be properly addressed.

Financial toxicity of cancer treatment

I always try to highlight financial toxicity. I’ve dedicated my life to researching financial toxicity, access, affordability, and equity. It’s all part of the same sphere. How do we get people the best cancer treatment?

Financial toxicity is incredibly common and, unfortunately, it’s going to manifest in someone in your clinic even if you don’t see it. They are going to see you and if you don’t see them — the whole them, the whole picture for them — you may miss it and you may miss an opportunity to intervene. My baseline is that this is common and you’re going to see it even if you don’t think you’re seeing it.

The second thing I try to emphasize is that there are really discrete effects of financial toxicities on our patients. People are not able to afford their medications. People [have] to skip out on visits. People are not getting the mental health care that they need. They’re not getting the dental or vision care that they need. Sometimes they’re missing scans. And for some people, they’re actually missing treatments.

I always try to emphasize that there are things we can do about them. There are things that we can do on the health policy level, at an institutional level, and within our own clinic to try to improve outcomes for financial toxicity.

The first step is always just saying it’s okay to talk about it. This is the thing about sexual health or fertility concerns. We need to take the Band-Aid off. We need to say it’s okay to talk about these things. If physicians and patients are both unwilling to talk about this dirty underbelly of cancer care, then it’ll never be properly addressed.

You can start little or you can go big. There’s really everything in between from parking to policy. You can really make your voice heard.

How to dispute cancer care costs

Pick a thing that you want to intervene [in] and then work doggedly towards it. If you want to take one thing — let’s just say parking cost, something that pretty much everyone agrees [is] ridiculous — that can be your advocacy issue.

You can take every meeting from the director of parking services to the CEO of the hospital — if you can get in — and say, “This is why this is important. This is why we need more vouchers. This is why parking decks should be free. This is why parking is a stupid barrier to receiving care.” And yet it truly is.

The reason why I researched parking costs is [that] we were paying $18 a day to park at MD Anderson. No offense to MD Anderson. I lived in Houston for many, many years. I volunteered at the Texas Medical Center. I know that parking is the biggest revenue generator for the Texas Medical Center. Texas is huge. Parking shouldn’t be an obstacle to receiving care.

You can start little or you can go big. You can think, “How do I lobby at the public policy level? How do I get my face in front of senators or representatives that can actually make meaningful change in how health insurance is designed and delivered?”

There’s really everything in between from parking to policy. You can really make your voice heard.

What inspired you to get into medicine?

I was sleeping on the floor of an ICU on a collapsing air mattress when my husband was during his terminal hospitalization. That was my light bulb moment. I think I should go into medicine because I feel like I can try to make a change.

My initial thought was I’m going to be a nurse. I talked to my sister, who’s a physician, and she said, “You don’t want to go into nursing.” I was like, “They’re great!” And she’s like, “Oh, I agree. They’re like saints. There’s a hierarchy in medicine and physicians are at the top. You as a nurse who is going to be smarter” — as many nurses are — “than the physician who’s telling you what to do, it’s going to make you frustrated. Your personality type does not sit with that so you should be a physician.” I thought about that more and I thought, “You’re right.”

Transitioning into medicine was a challenge. I had to go back to school. I have a Bachelor of Fine Arts degree. I had to do some post-bacc classes, but it was absolutely the right decision for me.

The impact of cancer treatment on Black and Latinx Americans

This system needs to change. There are many social injustices in the world. We can’t fix all of structural racism. We can’t give everyone the world-class education that I have been privileged to [have]. Yet we can make some differences and every little bit helps. It’s all about incremental change.

Honoring Andrew’s memory

I will think about Andrew every single day. The thing is that this is mission-driven research. This is mission-driven care. My care is for the best outcomes for my patients, but for all patients, right?

I can’t save Andrew, but I can maybe make cancer treatment a little easier for the next person.

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Tags SABCS 2022

Caregivers Spouse

Marsha’s Caregiver Story

When Marsha Calloway-Campbell learned her husband was diagnosed with multiple myeloma, it turned her world upside down. But since his diagnosis, she’s rarely left his side, which at times takes a toll on her health. A myeloma caregiver, she’s learned how to find community support and advocate for her husband.

As the Program Director of HealthTree’s African American Multiple Myeloma initiative, Marsha has a passion for empowering others. She works to address the many obstacles African Americans face in myeloma diagnosis and treatment.

She voices how she took on the role of caregiver by taking on many burdens, how she made sure her husband was getting the best care and treatment, and how she got through the heavy emotions weighing on her.

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Table of Contents

Introduction
Pre-diagnosis
Diagnosis
Treatment
Advocacy
Words of advice

Introduction

I’m a wife. We were high school sweethearts.

I’m a mother of three daughters and a grandmother of a grandson.

Professional, career-oriented, type A overachiever, a Christian, a believer, [and] a family woman.

Marsha and her husband Armaray were high school sweethearts.

Pre-diagnosis

[Our] household was crazy busy. [Out of the] three daughters, one dances competitively. We drove all over the US with her. Six years later, her sister came and 20 months later, another sister came.

The two younger ones were athletes. They played basketball, soccer, volleyball… We let them try everything. Then we got into travel ball. There were times that he would put one in the car to go to Atlanta. I would put another in the car to drive to Chicago.

We were gym rats. He was an athlete. I played ball in high school. It continued even into college for the two younger ones. They were student-athletes. That’s the synopsis of us before. Let’s call it 2016. And that’s when he started not to feel well and things started changing.

Initial myeloma symptoms

Armaray is a Black man. I say that because many Black men don’t go to the doctor, but he did. He got yearly physicals.

In 2016, he had gotten a physical, probably July-ish. August [and] September came. He started not to feel well. He started seeing other doctors. He was 57 at the time. They said he had a slightly enlarged prostate. They said, “Go to a urologist.”

Nothing was making him feel better. We get to Thanksgiving. He stayed in bed the whole weekend. We just knew something was going on. We went to his general doctor.

Right around Christmas is when I started getting real concern and pushing his primary care. He told me, and I remember it like it was yesterday, “It looks like Armaray has some compression fractions in his spine.” We’re like, “Why? Where is that coming from?” He had been an athlete and had had some surgery in 2015, but for an L4 and L5. Everything was fine.

He started wondering, Is it related to that? Still, no one knew. They said, “Okay, let’s get scans. Let’s do physical therapy.” Put him in physical therapy. “Let’s get that TENS unit for the pain.” We did all of that. Armaray trying to stretch his back out, thinking that will help.

New Year came and [on] January 12th, he almost collapsed as we were about to go to physical therapy. Instead of driving him to physical therapy, I drove him to the ER. Pulled up at the door, went in, and said, “I need a wheelchair,” and that was that’s the beginning of that story.

Within an hour and a half or so, I heard that ER doctor say, “Put him in room 10.” I go up and say, “Oh, good. You’re admitting him.” He just looked at me [and] said, “Oh, yeah.” I saw the concerned look. He said to me, “How long has he had kidney disease?” I said, “He doesn’t.” And he said, “Well, he does. His kidneys aren’t working.”

Armaray, even at 57, was still the athlete. He worked out four, five, or six times a week. [At] 6’2” and 195 pounds, [he] ate better than anybody in the household. He took care of himself, was not on any kind of medication, no blood pressure medication, nothing.

The nephrologist was called in and they ended up saying to me, “His creatinine is 14.” That didn’t mean anything to me. But she looked at me and said, “It should be under 1. I don’t know how he’s standing.” That’s when the ER doctor looked at me and said, “It might be multiple myeloma.”

I was like, “Okay, but what is that?” I remember saying inquisitively, “Is that cancer?” And he said, “Yeah, I’m not sure yet.” Then he tried to walk it back a little bit, but the nephrologist was standing there and she said to me, “One of my nurses has it.” She needed to let me know that it was not necessarily a death sentence.

She said, “We’ll figure all this out later. I have to get him into dialysis.” They worked their magic. They got that catheter put in and he was [put] in dialysis that night. We stayed in that hospital for one solid month because things were happening fast.

I slept in that hospital every single night, but two nights. I was afraid that if I left, a doctor was going to come in and tell him something else.

Realizing he had to be admitted to the hospital

[With] all of those things they were doing, I knew I had to call people. At that time, the oldest daughter was a senior in college, living in the city. The two were in school, one was a senior [and] one was a sophomore in the middle of basketball season.

I knew I had to tell my mom, who was in her 80s at the time. Keep in mind, she’s known him since he was 17. He’s like a son.

He was admitted bright and early the next morning. Here comes the nephrologist and her nurse practitioner. He looks even better from just that one dialysis session. Every single morning that we were in that hospital, the two of them showed up to say, “Here’s what’s going on.”

Imagine being in the hospital [for] a month. There were many doctors [and] many specialists. They would come in and give me, “Okay, he’s probably going to have a blank test today,” or “This is probably what’s going to happen.” It kept me [in the know].

My sorority sister gave me a binder that first week. She said, “Listen, it’s going to be a journey. Take this binder. Write everything down. When doctors come in, write down their names and who they are.” I did exactly what she told me. But things started to happen.

They would talk to me. “He needs this surgery.” His lesions were up and down his spine. He needed to have what’s called a kyphoplasty to shore up the spine to make it more stable. He was too sick to give consent so, of course, I had to do that.

We had the pulmonary doctor looking at him. We had a cardiologist looking at him. They finally confirmed the diagnosis and they started to treat him.

We thought he was getting better. [Then] his lungs started to bleed. It was a reaction to the treatment. Now I have pulmonary, cardiology, and hematology kind of pointing the finger at each other like, “What’s going on?” The hematologist was like, “It wasn’t what I did.” It was just all of that.

I sat in that hospital and with all of that going on, I could not leave. I slept in that hospital every single night, but two nights. I was afraid that if I left, a doctor was going to come in and tell him something else.

We knew nothing about multiple myeloma. It still didn’t make sense to me. All I knew was he was not getting better. Things are happening. I need somebody to please, please figure this out.

‘If it is that, here’s the deal. It is incurable, but it is treatable.’ I remember those words distinctly.

Diagnosis

Taking on the myeloma caregiver role

In the beginning, things were happening so fast that I couldn’t fall apart. I had to get the information. I didn’t cry when the doctor would tell me whatever. My crying took place at night when I’m on that couch in the hospital room [where] they made my bed.

He’s sleeping. I’m crying and praying. Prayer got me through. I would leave his room sometimes and sit out in the lobby area. I would call close friends. I have some close friends that are like sisters to me.

I called my own doctor, who’s a very close friend of mine. Doctors just tell you matter-of-factly and that’s how she did it. She was like, “Look, if it is that, here’s the deal. It is incurable, but it is treatable. It’s going to be rough in the beginning.” I remember those words distinctly.

I was having those kinds of conversations with my mom, with my sorority sisters, a friend from church, and my pastor was also dropping in. He would show up at the hospital [late] at night because he could always get in.

I was running on adrenaline. I was in survival mode and all I knew is what I had to do.

Getting help

My pastor was saying to me, “Marsha, you need to stop it. What are you doing? You are not Wonder Woman. You do so much for other people in our congregation. Let somebody help you. What do you need?”

I was exhausted by then. I had dropped 27 pounds or so in 4-5 weeks because I was running on adrenaline. I was in survival mode and all I knew is what I had to do. But it wasn’t good for me. That was how things were.

I knew that I needed to talk to somebody. I’m sitting in this hospital room. He can’t communicate with me. The kids weren’t in a position. I knew I had to reach out to my closest circle.

My village is amazing. What I got from them was talking. I would advise [you]: talk to somebody. Talk to somebody that you can trust, whomever that might be. Trust is a huge thing in our culture. We don’t always trust. That’s how I got through it.

I started to make notes to myself about the business [and] things that needed to be taken care of. That’s when the shift happened. Crying, sitting in that hospital, we had no idea how long we would be there. I knew that I had to take care of some things.

I’m a lawyer. I have been for 37 years. I also have a market research consulting business. I used to work at Procter & Gamble when I was in law school. Meanwhile, I’m sitting in a hospital room, thinking I have a mortgage to pay.

Financially, I had to make sure we were good. But I also knew that there were things like disability. At some point, the diagnosis came so I’m like, “I should probably check about disability.”

I had a fight with an insurance company that I won’t name because they started sending me letters saying you took him to this hospital and it is out of network. I’m like, “You must be kidding me. I don’t know if he’s going to walk out of here and you’re talking about out of network?” I won that fight because I took him to [the] ER and when you go to an ER, who cares about [the] network?

The doctors were cheering me on. I started establishing relationships with all of them. “Marsha, what’s going on today?” They were asking me about the business of it all. “Did you beat the insurance company yet?” “What about Medicare? What about Medicaid? What about disability?” That was the relationship and that was the environment in that room.

If I leave the hospital to come home to shower, to lay down for a minute, a nurse would have my phone number and would promise to call me if anything went down in that hospital room.

My pastor was saying to me, ‘Marsha, you need to stop it. What are you doing? You are not Wonder Woman. You do so much for other people in our congregation. Let somebody help you. What do you need?’

Reaction to the diagnosis as a myeloma care partner

I decided that I have to be part of this medical team.

As lesions were up and down his spine, it affected his entire body. He couldn’t even move his arms. He couldn’t lift them. [On] the hospital bed, he was more comfortable with pillows under each of his elbows. But I had to do the lifting. At times, the nurses wanted to, but they were not gentle enough for me so I did that.

That’s when advocacy started for me. When the doctors would come in, I would connect the dots for them because [there were] so many of them.

Talk to somebody that you can trust, whomever that might be. Trust is a huge thing in our culture. We don’t always trust.

Treatment

The doctors said to me, “We want to start treatment,” which they did, and that was the treatment he was allergic to. It was two shots that I remember that nurse coming in one shot one week, came back, and gave a shot the next week. Then his lungs started bleeding. They figured out that’s what it was.

I have to say that those two shots knocked much of those bad cells out tremendously. There’s always a good and a bad. I’m thankful because it knocked the M protein way down, but they had to stop it.

He had to stop all treatment for some months until his lungs got clear and they figured it out. But the doctor said, “Here’s what can happen. We need to treat him. It could be we’ll never give him that again, but it could be pills.” My big question was always: is it chemotherapy?

They were throwing around the word “immunotherapy” and they had to explain that to me. When they started treatment again, they did start him on a regimen of some of the therapies, the pills.

I had to be very careful with those. Those things were scary. When I came home, they were like, “Don’t touch them, and don’t let anybody who might be pregnant or would get pregnant in the future touch them.”

Pretty early, they started talking to us about a stem cell transplant. He was diagnosed [on] January 17. By March 18, he had a stem cell transplant.

Making medical decisions

The decision was pretty much mine. I share it with him as much as I could, but I didn’t want to burden him with anything. I needed him to concentrate on getting well.

I said, “Listen. He’s not going to worry about anything. He’s not going to worry about finances. He’s not going to worry about this treatment. I’ll tell him what he needs to know.”

Role as care partner post-transplant

Love the team that we worked with. We met a lot beforehand.

He stayed in a wheelchair for a while. He had to learn to walk all over again. But by the time [of] his transplant, he was walking again.

I would take him to the doctor and they explained exactly what was going to happen. “We have to collect those cells. We have to go in the hospital then we’re going to give him this heavy dose of chemo and all of his numbers are going to bottom out.”

That transplant was tough, but he did it. God brought him through that. It was hard. It happened exactly like they told us.

I will say I thank God for that transplant. Put him in complete response. There’s no spike detection, no protein detection. He gets a check every month.

Just a multitude of emotions. It’s a journey. It’s up and down. We’re hopeful.

That transplant was tough, but he did it. God brought him through that. It was hard.

Advocacy

What was the shift for you?

My husband started getting better. That was when it switched in my mind. You can be an advocate for other people because home is taken care of to a degree. Things have settled down. You need to give back.

The advocacy that I do now is the “give back” part. I never want anyone to be caught off guard [by] multiple myeloma. I know there are a lot of other things out there to be caught off guard about, but for me, it’s multiple myeloma.

If you know what it is, know enough to ask your doctor what it is, that is what I’m trying to do. I share with people what it’s about.

Once you are taking care of someone with myeloma, be their advocate because it’s a journey. It can be challenging at times so they need somebody.

We are often diagnosed with low risk. However, we’re dying more.

Learning more about multiple myeloma

In the beginning, I didn’t want to know the details about the disease, let alone how it affects anybody. I just did not. At some point, I decided [I] need to know.

I happened across HealthTree and other organizations that had information about myeloma. What I learned was that Blacks are predisposed to the diagnosis two to three times more likely than Caucasians to be diagnosed with multiple myeloma.

Honestly, my reaction was, “Of course, we are, like other stuff, like everything else.” That was a turning point for me.

The other thing I learned was more men than women are usually diagnosed. I learned that African Americans are, on average, four to five years younger being diagnosed.

The thing that really got me was that African Americans quite often have lower-risk genetic myeloma. There are lots of kinds — low risk, high risk. We are often diagnosed with low risk. However, we’re dying more.

The doctors are saying you’re diagnosed with low risk, more likely, if — and that is the operative word, if — you can receive equitable treatment — the treatment that’s best for you, just like Caucasians would receive the treatment that’s best for them — your outcomes could be better.

Then we’re into the whole health equity, disparities, and inequities space. When I look for people to collaborate with, I’m looking for people in those spaces because those organizations and those people get it. If we could just get equitable treatment, we could have better outcomes.

Now I want to be clear. I want everyone to have great outcomes, but I also want African Americans to have outcomes that could be greater because we’re getting the same care or equitable care.

It goes back to awareness. We don’t know there’s such a thing so that’s where it starts.

I’m doing a campaign now. “Doctor, could this be multiple myeloma?” If I could teach everybody [that] if you’re not figuring out what the diagnosis is, you don’t know what’s wrong, [and] you have these symptoms, to say to your doc, “Doctor, could it be multiple myeloma?” Because then the testing could start.

The first thing is we just don’t know about it so we’re not aware of it. We’re not educated about it. But then even when you think about diagnosis, there [are] still these disparities.

Before a diagnosis, there are disparities because we’re not always taken seriously when we present our symptoms to a hospital, to a doctor, or to a nurse. Our complaints about what’s going on are sometimes minimized. We’re not heard. Testing is not being done proactively to figure out. That’s even before diagnosis.

Then after diagnosis, we have all these social determinants of health that are still there. We might live in an area where social socioeconomics [is] low. We might not live in an area where an academic cancer institution is. We may not have transportation to get to these academic centers. We may not know. We don’t get that influx of information. It can be all kinds of things.

Then when you talk about clinical trials for African Americans, I might not be in a financial situation [where] I can take off X number of weeks to travel to wherever to be in this trial. We might not have as simple as Internet in [our] homes.

Those are the things that I’ve learned. Myeloma is already a tough journey and now we have to add these kinds of inequities on top of it to try to get through myeloma.

I want everyone to have great outcomes, but I also want African Americans to have outcomes that could be greater because we’re getting the same care or equitable care.

Importance of testing

It’s huge. Those are difficult medical things. Some stuff still just kind of goes over my head and I’m just like, “Oh, I can’t even understand that.” But what I do know is: ask. Know enough. For instance, know the common signs and symptoms.

You get your blood work done. It could be high calcium, there could be renal dysfunction so your kidney numbers might not be right, you might be anemic, and you could have bone pain. Those are the big ones. The acronym for that is C.R.A.B.

Know enough about that that if you’re going through something, you ask your doctor. “Doctor, could it be multiple myeloma? Can you test me for it?” You don’t even have to know what the tests are.

Here’s one thing that happens in our community. Everybody Black is told that we’re anemic. At some point, all five of us in our house have been told that we’re anemic. And I heard one of the Black myeloma specialists say, “We’re not anemic just because we’re Black. We’re not anemic because we have this melanin in our skin.”

Push back on your doctor because it could be something very simple — you need to take iron pills — or it could be something very serious — like myeloma.

That’s what I say to people. You don’t have to be a doctor. You don’t have to know every single thing but ask questions, demand time to be heard, and push for testing.

I always say to people who are then diagnosed: have somebody go to appointments with you or somebody to be there for you [to] take notes because you can’t get everything. I automatically take notes because that’s what I do, but not everybody does that. You can even take notes on your phone. There has to be a level of self-advocacy in this space that will serve you well.

Myeloma is already a tough journey and now we have to add these kinds of inequities on top of it to try to get through myeloma.

Distrust of the medical system

There’s distrust for good reasons. When I think about my grandparents, that generation was like, “Absolutely not. You will not use me as a guinea pig.” Those were the words because there were situations where Blacks were not done right. We lost lives and it was just a terrible situation.

Those events are in history. We know what they are. It wasn’t even done in a manner that tried to make Blacks feel like we were trying to do the right thing. It just was not right.

Then when I look at my mom’s generation, she still has a lot of distrust. “I’m not sure what these doctors are doing.” You look at my generation, it’s carried down. It’s even carried down when I look at my kids.

Now, I think it’s getting better as we go down the chain. But it’s still very real.

You don’t have to know every single thing but ask questions, demand time to be heard, and push for testing.

Importance of having family conversations

[In] the Black community, we don’t always openly share. It’s not because we don’t want to help our families. I’m thinking about my generation. We were taught that what goes on in our household stays in this household. You will not go out of this household talking about what goes on.

When my husband got sick, my first go-to was we will not play this out [on] social media. Even my generation, that’s what I think about. That can be a concern in the Black community because we absolutely need to share, especially with our immediate families.

I just say to families: share as much as you’re comfortable with. Send this brochure out to your circle. It’s about myeloma. Just share that. You don’t have to share anything about [yourself], personally, but share the information.

Words of advice

This is the work that just brings me joy. I’ve never shared information with people. They thanked me and hugged me.

When I think about [my] career, I’ve talked to a lot of people. I run my businesses. I would have to share about my business. “Come to me. As a lawyer, I can do this for you. I can do that for you.”

Although I was helping people, it pales in comparison to [saying] to someone, “Have you ever heard of multiple myeloma?” “No. What is it?” And I tell them and they’re like, “Ooh. Is there a test? Can I get screened? What do I need to know about it?” That brings me joy that I feel like I’m impacting lives one at a time.

As I look at other people who are doing the same thing and other organizations who are doing the same thing, I’m like, “Yeah, this is the important work.”

I have to thank my family and my close circle. Especially, my family, I can’t do what I do without them. I’m still working my job. My consulting and practice are there for me when I need them. My close circle, that village, is always there.

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Black Myeloma Patients: Access & Disparities

Post author By Katrina Villareal
Post date March 16, 2023
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Multiple Myeloma: How Your Race and Age Can Affect Diagnoses and Treatment

Valarie Traynham

Multiple myeloma is the most common blood cancer among Black patients in the U.S., but many of those patients have an entirely different experience.

Studies show that Black patients respond better to newer treatments but are still twice as likely to die from the disease.

Patient advocate Valarie Traynham speaks with Shakira Grant, MBBS, of the UNC Medical Center. They discuss the barriers many Black patients face, how it impacts their care, and what can be done to help improve their outcomes.

Dr. Shakira Grant

Table of Contents

Introduction
How do we get more diversity in clinical trials?
How would you advise older multiple myeloma patients to stay positive?
How do you build medical trust in Black communities?
Barriers patients face that prevent their care
Conclusion

Newly diagnosed patients [need] someone [who] they can ask questions [and] find out information and where to go for good relevant resources.
Valarie Traynham

Introduction

Valarie Traynham: I was diagnosed with multiple myeloma in 2015. Being a patient advocate, I want to be able to guide others through the process. When I was diagnosed, I did not have someone to go to and I think that’s very important. Newly diagnosed patients [need] someone [who] they can ask questions [and] find out information and where to go for good relevant resources.

I’m just so excited at the work that Dr. Grant is doing because it’s much needed. It’s an area that needs focus and she’s doing a wonderful job [of] getting that focus out there.

She focuses on a population of patients in the myeloma world that oftentimes [is] overlooked. It’s very important for that population of patients to be looked at and cared for and really understand what they are going through.

Dr. Grant is from the University of North Carolina and she focuses on geriatric multiple myeloma, health, and research.

Valarie Traynham at the IMS 19th annual meeting and exposition

Unfortunately, because multiple myeloma is also a disease that impacts older adults, we see this compounding effect, especially for Black older adults with multiple myeloma.
Dr. Shakira Grant

Dr. Shakira Grant: I’m primarily here to talk a little bit about our research and how this fits into sharing stories of patients and caregivers, which our team is really passionate about.

What really drew me to this type of work was this love for trying to bridge this gap in terms of the disparities that we see existing within not only outcomes but also survival for Black and white patients with multiple myeloma.

Unfortunately, because multiple myeloma is also a disease that impacts older adults, we see this compounding effect, especially for older Black adults with multiple myeloma. It’s really important for us as a research team to address some of these healthcare access barriers, which largely drive the disparate outcomes that we see in multiple myeloma.

We presented two studies. For the first one, we wanted to understand what barriers patients and their caregivers encounter when trying to seek care for multiple myeloma.

The top takeaway from that study is that many of our patients report that there’s really a delay in getting the diagnosis of myeloma and this results in them going to multiple specialists with their symptoms. Often, patients reported being dismissed by their doctors and being chalked up to just getting older and then repeating labs again in three months.

From this particular study, while we identified other barriers, including financial barriers, we do recognize that there is a need to focus on how we make the diagnosis, ensuring that patients are getting the diagnosis on time, which would allow them to enter into a care pathway where they can begin their treatment and minimize any chances that they will have any poor or adverse effects from multiple myeloma.

In terms of the other study, we wanted to look at factors that influence the participation in clinical trials for Black patients in particular. We did this by looking at the perspectives of patients with multiple myeloma as well as their hematologists.

One of our main takeaways from this is that the patient and their relationship with their doctor is really critical when trying to decide if a patient is going to be offered the opportunity to participate in a trial. Based on these findings, we do recognize that there is a need for more targeted interventions that address several steps in terms of communication between patients and their doctors to ensure that we have the best chances of offering clinical trials to a diverse patient population.

Many of our patients report that there’s really a delay in getting the diagnosis of myeloma and this results in them going to multiple specialists with their symptoms.
Dr. Grant

How do we get more diversity in clinical trials?

Valarie: I heard a lot about clinical trials. How can we get more minorities involved? What is that like for the older population that you see in the clinic?

Dr. Grant: Overall, when we think about increasing representation in clinical trials, we are coming up against two compounding factors. One is the older adult and then it’s the older adult who also identifies as having Black race.

For me, in clinical practice, one of the things that we try to do is to not only look at [the] patient’s chronologic age, but we also look at the functional age of patients. How well are they able to do their activity and to get around day to day? I believe that [is] probably better to assess eligibility for these particular patients for clinical trials in terms of Black representation or increasing representation of minoritized populations.

It is important for us to realize that myeloma does tend to affect an older adult population. We cannot really distill out and think about age and race separately, but we really should be thinking about these two things together. Our efforts to increase representation should be geared towards the older adult population, as well as thinking about the racial, ethnic, and minoritized populations.

We cannot really distill out and think about age and race separately, but we really should be thinking about these two things together.
Dr. Grant

How would you advise older multiple myeloma patients to stay positive?

Valarie: For a newly diagnosed older patient, how would you advise them? [There’s] so much going on. They’re getting the diagnosis. They’re trying to make it to the clinic. How would you advise them to stay positive and look for the good in the situation that they’re facing?

Dr. Grant: The thing that is really important that I’ve seen come out not only [from] our research but in my own clinical practice is the need to have a social support system. In our study, we looked at informal caregivers who were oftentimes spouses and, in some cases, adult children.

I really do think that having that support when you’re first diagnosed is really critical because you have, in essence, [a] second set of ears, [a] second set of eyes to help you with the amount of information that you’re getting, scheduling, [and monitoring] any potential treatment-related side effects.

I think [it’s] really important for patients to also seek knowledge about multiple myeloma from credible resources. Read as much as possible what you can about this disease, about things that you can expect, and then come to your provider’s visit prepared with those questions ready.

Having that support when you’re first diagnosed is really critical because you have, in essence, [a] second set of ears, [a] second set of eyes to help you.
Dr. Grant

Ask [about] things like clinical trial participation, if your doctor hasn’t mentioned it. It’s really important for patients to take that first bold step and say, “I’ve read about clinical trials. Do you think this could be a potential option for me?”

This really moves into this idea that we want our patients to not only have a really great social support system but also to be empowered to be able to ask the questions that they need of their physicians without feeling fearful or intimidated.

Valarie: I’m so glad you said that because that is one thing that I always try to tell newly diagnosed patients as a patient advocate. Find reputable material. Find out everything that you can about the disease. Don’t be afraid of it. It’s something that you’re going to be living with indefinitely.

We want our patients to not only have a really great social support system but also to be empowered to be able to ask the questions that they need of their physicians without feeling fearful or intimidated.
Dr. Grant

How do you build medical trust in Black communities?

Valarie: We know that trust in the African-American community is a big deal and that’s what we are focusing [on], too: raise trust and build trust in the community. As a physician, what are some of the things that patients are mainly dealing with?

I was listening to something and they talked about words matter — how you talk to patients, understanding patients, words that you use, words that the patient uses, and understanding and gathering information. Tell me [about] your thoughts on that.

Dr. Grant: What we’ve seen in our studies time and time again is that there is this legacy of medical mistrust that has been brought on by past research events where Black patients were intentionally harmed by the research enterprise and so it takes quite a while to be able to reverse those effects.

Things that we’ve learned from talking to patients [and] caregivers that can help close that trust gap is really working on our communication style as physicians, making sure that we’re using empathic communication, [and] letting our patients see that beyond the doctor title, we also are real people with real lives and lived experiences.

Don’t be afraid to pull back that curtain sometimes and let patients see that that relationship between patients and providers really helps to build up trust.

Find reputable material. Find out everything that you can about the disease. Don’t be afraid of it. It’s something that you’re going to be living with indefinitely.
Valarie

I think of a particular quote from one of our studies where a patient said that it’s all about [the] relationship and if we need to build trust, we really need to be focused on the relationship. That particular participant went on to say that really they believe that the physicians could benefit from relationship-building training.

That really stuck with me because I recognized that trust is so difficult to address. These are some strategies that, as a physician, we can do to at least start to build that and close that potential gap.

When it comes time to think about the research, there are different strategies that our team [uses] to really help foster trust and to help engage Black participants in our study. Some of those strategies have been described in the literature, but really it’s about having a team that is representative of the population that we’re trying to engage and helping them realize the value of this research and why we need to do this, especially for the Black community.

Trust is so difficult to address. These are some strategies that, as a physician, we can do to at least start to build that and close that potential gap.
Dr. Grant

We need to recognize that access to healthcare is dependent on several steps. This includes the patient’s ability to perceive their need for healthcare. Then they need to be able to seek out those services, reach the services, pay for the services, and engage with their healthcare provider.

I would encourage patients: if you are experiencing symptoms you’re concerned about and you’re seeing your provider and you don’t think your provider is necessarily answering or addressing those questions, don’t be afraid to talk to somebody else. Talk to another provider and do some additional research and see if there is potentially another option for you to have your symptoms examined.

They have to think about [the] costs of medications but also when they’re coming to the cancer center, the cost of parking, the cost of gas… all these things are really additive for patients, especially when they’re on a fixed income. This idea about having to pay twice was centered around the need to pay for all of these other healthcare services while also attending to the high cost associated with paying for parking at the health center.

In terms of other economic impacts, things like parking, don’t be afraid to tell your provider, “This is challenging for me to pay for parking,” or, “I’m having challenges just paying for my medications.” Because honestly, sometimes the visit time is so short that we don’t always have the time to ask if you are having financial concerns. We don’t want that. These financial challenges are a limitation to you getting your care on time.

Don’t be afraid to talk to your providers if you have concerns. Make those concerns known… If you’re having financial challenges, continue to share those concerns and ask about available resources.
Dr. Grant

Barriers patients face that prevent their care

Valarie: How often do you have patients that [face financial limitations?]

Dr. Grant: We actually see this, in my practice especially, quite often. It’s not uncommon at all for patients to be concerned about the cost of parking. Patients would express concerns about their ability to pay for parking. Sometimes it’s a bit of a challenge knowing what to do in those scenarios.

There are some efforts now at our cancer center to try to provide more accessible parking in terms of financial costs and reducing the cost of that, but it’s not always widely available to patients.

Don’t be afraid to talk to your providers if you have concerns. Make those concerns known. That goes from even when you’re first presenting, before you’re diagnosed and you’re concerned about it, keep sharing those concerns with your provider.

If you’re having financial challenges, continue to share those concerns and ask about available resources. There are more resources out there than sometimes patients may actually think or may actually have knowledge about.

Conclusion

Valarie: Thank you for joining us today and going over all of this. It’s so important what you do in the field of myeloma.

What we’re dealing with is meaningful. It’s life-impacting so it’s very important that you understand if you’re not being treated right or you feel that something is not right, say something because it’s not okay.

You have the right as a patient to have something done about that. You are in control of your health. Don’t settle. Without you, it would just be a missing piece.

Dr. Grant: Thank you for having me.

Valarie Traynham International Myeloma Foundation

If you’re not being treated right or you feel that something is not right, say something because it’s not okay. You have the right as a patient to have something done about that. You are in control of your health. Don’t settle.
Valarie

Special thanks again to AbbVie for its support of our independent patient education content. The Patient Story retains full editorial control.

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Acute Lymphoblastic Leukemia (ALL) Cancers CAR T-Cell Therapy Chemotherapy Clinical Trials Immunotherapy Leukemia Patient Stories Radiation Therapy

Tatijane’s Acute Lymphoblastic Leukemia (ALL) Story

Post author By Katrina Villareal
Post date March 14, 2023
No Comments on Tatijane’s Acute Lymphoblastic Leukemia (ALL) Story

Tatijane’s Acute Lymphoblastic Leukemia (ALL) Story

Tatijane first knew something was wrong when she started having pain near her ribs. Her pain became so severe she was rushed to the ER and was then diagnosed with acute lymphoblastic leukemia, both B and T cells, with mutations. At 24, she was then given 6 to 8 weeks to live.

She shares how she processed her shocking diagnosis, the different treatments she’s undergone including a double CAR T-cell therapy clinical trial, and how she’s giving back to the cancer community.

She voices how she coped with three cancer recurrences, the emotional toll her diagnosis has taken on her, and how she found support.

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Name: Tatijane W.
Diagnosis:
- Acute lymphoblastic leukemia (ALL), B and T cells, with mutations
Initial Symptoms:
- Bone pain in ribs
- Trouble breathing
- Fast heart rate
- Painful lymph nodes in the neck
- Lump in between breasts
Treatment:
- Chemotherapy
- Radiation
- Double CAR T-cell therapy (clinical trial)
- Bone marrow transplant

Even now, I still feel like death is just sitting there in the corner, waiting and watching me. I’m not a curable patient and, at some point, they say that this cancer is going to take me. But I also am pretty tough and I’m a fighter so we’ll see what happens.

Introduction

I’m an artist. I do photography, I like to draw [and] paint, [and] I did glass art for a while. I specialized in sandblasting, but I did do some stained glass.

I love music, watching TV, [and] movies. I love crafting and knitting. I like to stay very busy with artsy, crafty things.

I love mermaids. I have a mermaid tail that I actually swim in. My whole house is mermaid-themed.

I love being with my family and friends.

Tatijane W. competitive swimming in high school

Tatijane W. with Heather day before diagnosis

Pre-diagnosis

Initial symptoms

The January before I was diagnosed, I was starting to have bone pain in my ribs. I developed this mass in between my breasts. I started to get what I thought were tight muscles or little knots in my back. It was very painful, but I just kept getting massages from my family to try and get that.

I stopped eating so much because it was hard to eat. I was having issues breathing, but I was also overweight. I was 306 pounds so I thought maybe all of this had to do with being overweight. When I went to the doctors for all these issues, they said, “Lose weight and it will help.”

Then it was, “You have PCOS (polycystic ovary syndrome) so maybe that has something to do with it,” or “You have insulin resistance; that could have something to do with it,” or I also had other hormone imbalances, maybe that has something to do with it. It always came back to lose weight and it’ll go away.

On February 17th, my best friend stayed the night at my house. Then [on] the 18th, I went into the ER because I was in so much pain [that] I couldn’t handle it. I was diagnosed [on] the 19th. It all happened very fast.

Feeling like there was something more there

I didn’t think they were doing enough tests. I thought there was something else because none of it made sense. [What] does this have to do with being overweight? It was very frustrating, but it felt like I couldn’t really get any other resolutions from this.

I was messaging my doctor on the 18th, saying, “I can’t handle this pain anymore. What can I do?” He said, “Just go to the ER. It is a cyst that needs to be drained.” Nope, that’s not what it was.

Being in the ER that night was very traumatic because it was during COVID. I was in the ER by myself. They started running these mandatory ER tests.

They did a scan and saw the masses. The mass on my chest was so large, it was as if I was wearing a sports bra. It ended up collapsing my right lung and it was surrounding my heart and crushing it.

When I was diagnosed, they gave me six to eight weeks to live. I was alone in the ER getting diagnosed with that. It was so crazy.

The doctor had to come in and said, ‘I’m really sorry to tell you this, but you have cancer and it’s throughout your whole body. You would have 6 to 8 weeks to live.’

Getting the official diagnosis

My mom was sitting in the parking lot. Then maybe 10 minutes before they came in to tell me my diagnosis, I said, “Just go home,” ’cause it was already one in the morning. “I’ll call you when it’s time for me to come home.”

By the time she got home, I was calling the house phone. The doctor had to come in and said, “I’m really sorry to tell you this, but you have cancer and it’s throughout your whole body. You would have 6 to 8 weeks to live.”

Originally, they said it was non-Hodgkin’s lymphoma. It was very sad and very scary to hear. I remember trying to keep my composure. I was like, “Okay. How do we resolve this? How did this happen?” He was telling me it could be environmental, it could be genetic, all this stuff.

I remember just crying and going, “Did I do something wrong? Did I cause this on myself?” It was the weirdest. Went from mature, “Okay, how can we do this?” to then just crying.

There was no history of cancer in my family and there still isn’t [on] either side. It had to have been environmental. My family and I think we know what caused my cancer.

For it to be you weren’t listening to me and it was something this serious, that was very frustrating because it was like, ‘Could this have been caught sooner?’

Possible environmental cause

I believe my cancer had come from medication for my insulin resistance called metformin. There is a lawsuit against them. It turns out that the factory that they were getting the metformin from in India had jet fuel or something that ended up being exposed to the medication.

There have been many cases of many different kinds of cancers that developed after taking this medication. I was in the right time frame for that to be a possibility for me.

I strongly believe that is what caused my cancer [and] so does my family. It makes me sad because it was something that was supposed to help me and ended up hurting me worse than anything.

But also, if it didn’t happen, then none of this other great stuff would have happened. It’s a positive, but also a negative. I don’t want anyone else to be put into this situation.

Not getting answers when you know something’s wrong

It was frustrating. My whole life, if anything was wrong with me, the answer I always got was, “You need to lose weight.” I was used to it.

I’m used to doctors not listening to me. But then for it to be you weren’t listening to me and it was something this serious, that was very frustrating. Could this have been caught sooner?

Official diagnosis

They were thinking it was non-Hodgkin’s. But after doing more tests, they realized that it was acute lymphoblastic leukemia, both B- and T-cell with other mutations.

I understand that my cancer is one that you either have one or the other, not both. It’s not typically found in adults and it usually doesn’t grow as fast as mine does.

Treatment

They [said], “We have to get you an oncologist and we have to keep you here until we could do the next steps.”

I spent the night in the ER. The next morning, they admitted me into the hospital for about two weeks.

I couldn’t see my family and friends in person except out the window of the room that I was sharing with someone. I was on the third floor so I would look down and they looked like little ants.

I was having such a tough time and I was crying. Luckily, one nurse, the head of that floor, came in to talk to me. She actually allowed my mom — if she had her COVID vaccinations, took a COVID test beforehand, wore a mask, all that stuff — to come in.

It was the first time I saw her since going into the ER. I just cried and hugged my mom. That was all I wanted to do because it was such a scary moment. I will forever be so grateful to this woman because for her to let me do that was the best thing ever.

Treatment plan

I got my oncologist. I was released from the hospital for about four days, just enough time to pack.

I started my stay in March. It was [a] six-step plan. I don’t remember what it was called, but the first step was being in the hospital, getting different types of chemos around the clock in a way. I got spinal tap chemo, chemo through the veins. I did radiation as well. I did that for the whole month.

We checked my body with a PET scan and I was actually in remission. It was so exciting. Then they started step two.

Halfway through, the mutations figured out the treatment plan and mutated to fight against the treatment so I was no longer in remission. Because of that, we couldn’t finish the six-step plan.

Luckily, my oncologist was talking to Stanford and they had a double CAR T-cell therapy trial going on. I said, “Yes, I will do anything.” I know that it was a trial. But knowing that going through this could possibly cure me [and] also help other people in the end, that was super important to me. My whole life, I just wanted to help people.

Double CAR T-cell therapy clinical trial

We went to Stanford [and] did a double CAR T-cell therapy. I did it in June and it was fantastic.

Dr. Muffly at Stanford, who was doing the trial, [was] the one that talked to me and became my primary over there.

I did actually have neurological problems through it. There were side effects, but in general, the process is very easy and it was very interesting to learn. That put me in remission for a little while.

Two weeks before I went into the hospital for the double CAR T-cell therapy, I went in as an outpatient and they took the T cells out. It was a very easy process. It was just like giving blood if you’ve ever done that. They just take the [T cells] out and put the remaining blood back into your body.

What they did with the T cells was make them like little ninjas. You get put inpatient and when they put the CAR T cells in my body, it was just like getting any other infusion. Then you just hang out and see what happens.

They watched you. They do neurological tests every day where they ask you questions. You have to write your name every day as well to see where you are [and] if you’re going to have a neurological issue. They watch for other side effects as well. But for the most part, it’s just easy.

I was in remission for a short time. Then I came out of remission. The cells that they were attacking were C19 and C21. My body figured out the treatment plan again and changed itself to then attack the CAR T so the cancer began to grow back.

It was only maybe a month or two. It might not have even been that long because I got my double CAR T-cell [on] June 11 then I got my bone marrow transplant [on] August 27. It wasn’t that long in between.

The process of joining a clinical trial

There was a lot of paperwork. They go through that information with you. I remember being in the office and it ended up being like an hour and a half meeting instead of a 30-minute meeting because there was just a lot to go through.

They explained how the process worked as [simply] as they possibly could so that was nice.

Tatijane W. neurological issues post-CAR T

Honestly, the bone marrow transplant was the hardest treatment I have been through.

Bone marrow transplant

We tried a bone marrow transplant. They knocked everything out of my body. At that point, I was [at] Stanford for about four or five months already for the double CAR T and then another five to six months for the bone marrow transplant.

Honestly, the bone marrow transplant was the hardest treatment I have been through.

They already knew that I needed a bone marrow transplant prior to the double CAR T. They just thought that they would get a little bit longer before they can give it to me, but it really wasn’t that long.

They [paired] with Be The Match to find a match for me and I ended up getting the perfect match. They were a year younger than me, but that was all I knew.

I did four days of radiation, twice a day. It was [the] full body but also localized to the lung area and sternum area. I also did heavy-duty chemo for about four days to maybe even five days. Then they gave me the bone marrow, which was the big bag.

My donor went above and beyond to be able to be my donor. They got a tattoo a few months prior to being asked to be my donor because they had no idea. They told me, “They can’t be your donor now unless you say that it’s okay.”

My donor got all the information to show this is a good location where I got it, all the stuff was clean, [and] all this other stuff, went above and beyond to still be my donor. I was like, “Of course, yes, they could still be my donor. Let’s do this.” The fact that they did that was so amazing to me because that really showed they really wanted to help.

They gave me the bone marrow and that was a three-hour process, I believe. Then I just hung out in the hospital as the side effects started.

With a bone marrow transplant, you get graft versus host disease. To treat graft versus host disease, they give you steroids. They did that and immunosuppressants.

They figured out that my cancer feeds off of those. I was in remission and then I wasn’t because the steroids and the immunosuppressants caused my cancer to grow.

I think that one was maybe two months. I got to go home a week before Christmas after my bone marrow transplant. I was not in remission at that point, but it was low enough that they could deal with it.

Then after that, I was put on experimental chemo, called navitoclax, paired with venetoclax, which is a normal chemo. I was on that for seven months. I did really [well] and then my body figured it out.

Now I’m on Blincyto. I’m on my two-week break. After two weeks, I get put into the hospital for two days and start round two on the day that I get admitted.

I’m watched for two weeks, get sent home for the remaining four weeks of treatment, and then go to the infusion center every week to get my bags changed. Then two-week break and then back in the hospital for round three. They want to do this for as long as my body will allow it, basically.

I was trying very hard to be positive, but it was difficult during that time.

Tatijane W. video meeting Jesse McCartney

Side effects

With every other treatment I got, they promised me my hair would fall out. Then when I did the bone marrow transplant, they said, “Your hair is probably not going to fall out.” Then my hair fell out. I was so excited because [I’d] been waiting for it.

I wanted to take control of my cancer. I did a head-shaving party with my family and friends. Jesse McCartney actually ended up doing an inspirational video for me. My family and friends got together and made that happen for me so it was super fantastic to see that. I’ve loved him since I was five. I actually cried.

My depression hit me really hard at this point. Although my family [was] coming to see me, I was alone and I just didn’t feel great.

They would give me medication for nausea and other side effects. I did get really bad mucous.

When the mucositis hit me, it went from my mouth to my butt and it was so painful. I was fighting the doctors on the pain meds because I was so afraid of becoming addicted. Not that I’ve ever been, but I was fighting them on it and I was like, “No, I have to do it myself.”

I got to the point where I couldn’t talk because I was in so much pain. My lips were so swollen and they were bleeding. I ended up getting on pain meds, which were very helpful.

I decided that I’m not going to fight doctors on it anymore, which is funny because I just fought my doctors on pain meds for my nerve pain, but then I gave in at some point.

I also got C. diff at the same time plus side effects from the radiation and chemo, including nausea, vomiting, [and] diarrhea. Smells change. Smells can trigger nausea and sickness. A lot going on. I did not feel good.

I was trying very hard to be positive, but it was difficult during that time.

I’m also very happy it happened the way it did because that was the hardest treatment. I was in so much pain. I probably lost the most weight during that treatment because I stopped eating completely.

They had to feed me through a tube in my PICC line, which is the hardest weight loss program ever. I ended up losing 100 and something pounds [from] being diagnosed to the end of my bone marrow transplant.

Managing the side effects

For nausea, Gin Gins^® from Trader Joe’s. I don’t know if other places sell them, but those helped me so much. Also having unused coffee grounds, near the door or any place [where] the smell could get through, helped. I would sometimes put it on the table by my bed so that would help me not get nauseous.

Chewing on ice helped me a lot. Ginger ale. There is something called magic rinse that helped with my throat and my mouth. I would just swish that and swallow it. It numbed it enough so that I wouldn’t have the pain for a while so that was nice.

Having a latrine next to my bed, as opposed to walking to the bathroom, helped. Trying to do things to keep my mind off of it also helps so I did a lot of crafting, a lot of drawing, and stuff like that.

Mental health

I think my depression started the day I was diagnosed. I already had really bad anxiety before [my] diagnosis, but it also got worse. I’d been like this throughout the whole treatment.

I’m a very happy and positive person. I believe that that is what’s been helping me also get such good results from my treatment. But it is okay to also have that dark side along with your bright side. It’s like yin and yang.

Tatijane W. with boyfriend Bear visiting hospital

During my bone marrow transplant, my depression was really, really bad and that is when the Stanford psychiatry department came to talk to me. They ended up telling me that I actually had PTSD, anxiety, and depression, which made a lot of sense.

I was having really bad nightmares about me dying, which would wake me up and then I would be up for a long time. I couldn’t go back to sleep afterward and I was scared to sleep. Then during the day, I was just so unhappy.

I wasn’t eating because I also have body dysmorphia that I recently learned about, but apparently, I’ve had it my whole life. It was all just piling up.

Then the anxiety with scans and bone marrow biopsies that any time I hear bone marrow biopsy or spinal tap chemo, I instantly get really bad anxiety. I have panic attacks constantly. This is something I deal with now.

I will be fine throughout the day. I’ll be happy. Then, for example, I will have to go to the grocery store to go get something and I will have a panic attack because of germs. I wear a big pink HEPA mask and I would sanitize my hands, but I’m so scared of getting sick and doing something to mess up whatever treatment I’m on that I react to it.

During the bone marrow transplant, my depression hit me so hard that when I was in the apartment [after] I was released [from] the hospital, all I did was sleep. I was awake for maybe 30 minutes a day. That’s how it was for a couple of months. It was really bad.

It hit me so hard. I didn’t get on medication or anything to help any of it until recently, but it was also because I wanted my body to feel. I wanted to figure out a way to get out of it myself. I don’t know why.

I’m a very happy and positive person… But it is okay to also have that dark side along with your bright side.

Reaction to PTSD diagnosis

I didn’t really understand what that meant. I did research afterward because I didn’t know that ordinary people could get PTSD.

Hearing that, looking into it, and realizing that was the cause of my nightmares — in a way, it’s helpful to have a label on what’s wrong with you.

But having a label doesn’t change it and it doesn’t fix it. You just know what it is and that’s it. It was nice to know, but it also didn’t really help fix it. It just gave it a name.

Taking care of mental health

I ended up going to therapy and two different group therapies, which helped me. My therapist is independent and then the group therapies, one of them is for blood cancer and one of them is an AYA program.

AYA is through UC Davis and then the blood cancer is through Sutter, I believe. But they allow people from everywhere to come and join, which is fantastic.

Tatijane W. with mom walking in Stanford

I also did get put on medication for anxiety and depression.

With my therapist, we worked on the things that were causing nightmares. Death and the 6 to 8 weeks to live [were] causing a lot of anxiety. Yes, I outlived that, but when is it my time?

Even now, I still feel like death is just sitting there in the corner, waiting and watching me. I’m not a curable patient and, at some point, they say that this cancer is going to take me. But I also am pretty tough and I’m a fighter so we’ll see what happens. We’ll see who’s right.

Having to work through accepting death as a potential because with life is death so just accepting it helped the nightmares go away. Doing work like that I think helped a lot.

To be in these support groups and also talk with people that know what you’re going through and understand was super helpful and beneficial for me.

I wish I knew them [earlier]. In that first year when I was going through all these treatments and going in and out of remissions, I would have loved to be in these support groups and this excess support besides my family and friends.

Words of advice

Your emotions are completely validated 100%. You don’t have to be positive all the time. It is great to be positive, but [not] toxic positivity.

I thought in order to survive this cancer, I had to be positive all the time and hold the darkness in and that’s not how it is. It’s okay to let them live together. It’s okay to scream and cry and have those emotional moments. It’s very cathartic to do that sometimes.

Go to online programs. I found my blood cancer group therapy through Wellness Within. Finding cancer links to help you, whether you’re AYA or not, is very helpful.

Be completely honest with your caregivers, but also with your doctors on how you’re feeling. It’s okay to say I need therapy. It’s okay to say I need help sleeping. Whether you want to do it naturally or through something else, it’s okay to just tell them everything.

At this point, I’m an oversharer because I tell everyone everything that I’m thinking and I’m feeling.

I have found that when people ask, “How are you doing?” It’s easier for me to say, “Emotionally, I’m this. Physically, I’m this. Spiritually, I’m this.” That has been the easiest way to answer that question instead of just going, “I’m fine. I’m happy.” I’ve compartmentalized everything.

Know that you can do it, even when times get hard. You are a fighter and you can do this. You got this.

You are a team with your doctors… How is your team going to run well, if you’re not honest with each other?

Advocating for yourself

Knowing that your life is your life. No one can do it better than you. It’s okay. You’re not annoying the doctor if you are pushing them and saying, “No, no, no, there is something wrong. Please test for this.” Even if you don’t know what to test for, push for it because it’s your health in the end and your life and that’s the most important thing.

When I first got diagnosed, I was so worried about annoying the doctors that I didn’t want to tell them if I had a side effect. I was like, “Oh, I’m okay, I’m fine,” and put a smile on my face, and that wasn’t the case.

I realized that was hurting [me] more than anything. I was so uncomfortable that it was unnecessary. Just being able to advocate for myself and be like, “Okay, here’s how I’m actually feeling. What are your plans? What are your ideas on this?”

You are a team with your doctors. They are not working for you, you are not working for them. You’re a team and that’s just how it is. How is your team going to run well, if you’re not honest with each other?

You have to lose that filter. You’re going to have to tell them everything. You’re going to show them your whole body and that’s okay. Again, it is your life so [advocating] for yourself is the most important thing that you could do.

Tatijane W. Light the Night with friends and family

Giving back through participating in clinical trials

For me, one of the things that helped is knowing that doing these clinical trials can help me, but even if it doesn’t help me, I’m helping scientists, future patients, current patients, [and] doctors learn more, potentially putting these treatments on the map for the future. That to me is fantastic.

In these trials [and] in treatment in general, you meet some pretty great people. I’ve become friends with people that have gone through the trials after me.

My Stanford doctor said, “Hey, they’re going to do this treatment. They’ve never done it before. Can you talk to them?” I’ve made some of the bestest friends that I’ve had that understand what I’m going through and I understand what they went through.

Cancer sucks, but there’s been so much good and positivity that [has] come from it. Being a part of these trials, meeting these people, and knowing that I’m helping [have] been one of the biggest, positive things that have come from it for me.

Whoever is out there battling cancer, you can do this. I know that it’s frustrating and it’s hard, but just don’t give up. The fight is worth it because the fight is you. You are the fight and you are completely worth it.

All feelings, whether negative or positive, are okay to feel.

It’s frustrating and it’s hard, but just don’t give up. The fight is worth it because the fight is you. You are the fight and you are completely worth it.

Thank you for sharing your story, Tatijane!

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