When Family History Matters: Marc Anthony’s Personal Account of Lynch Syndrome Awareness
Marc Anthony’s story is a powerful testament to the importance of listening to your body and understanding your family’s medical history. At just 33, he was found to have Lynch syndrome and was diagnosed with stage 2 colon cancer. Lynch syndrome is a hereditary genetic condition that significantly increases the risk of getting many kinds of cancer and is passed down through families.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
His initial symptoms were hard to ignore — unexplained rectal bleeding, extreme exhaustion, a persistent feeling of coldness even in warm temperatures, and digestive issues. However, like many young adults, he brushed off these alarming signs, attributing them to the flu or stress, especially after a doctor dismissed his concerns as hemorrhoids due to his age.
Marc Anthony’s life took a serious turn after his brother’s passing, which prompted him to finally seek medical attention. It wasn’t until he disclosed his family’s history — his siblings had also battled colon cancer — that his doctor’s demeanor shifted. A simple diagnostic procedure confirmed what he feared: “You have a lot of cancer,” the doctor said. The realization hit hard, not just because of the diagnosis, but also due to how it would impact his already grieving mother.
The surgery to remove the cancer involved extracting part of his colon and numerous lymph nodes. Thankfully, the operation was successful, and he didn’t require chemotherapy or radiation. But recovery had its challenges, including complications with using the restroom, which were managed with additional procedures.
Marc Anthony’s experience with Lynch syndrome and stage 2 colon cancer reshaped his perspective. He learned about Lynch syndrome only after his surgery, realizing its hereditary nature and the importance of genetic awareness within families. In his case, Lynch syndrome was passed down to him from his mother’s side of the family. This newfound knowledge inspired him to create a short film, “Bonus Time,” aiming to raise awareness about colon cancer and the critical role of family history in early detection.
Marc Anthony’s message is clear and heartfelt: never ignore your body’s signals, know your family’s health history, and don’t hesitate to seek medical advice. His resilience and advocacy remind us that understanding hereditary conditions like Lynch syndrome can be crucial, as awareness can truly save lives.
Watch the video to learn from Marc Anthony about:
How awareness of family history and hereditary conditions such as Lynch syndrome can be the key to early cancer detection and successful treatment.
Navigating health scares in your twenties.
How Marc Anthony’s overlooked symptoms led to a life-changing diagnosis.
What inspired him to work to educate others about colon cancer.
The symptoms Marc Anthony ignored that you shouldn’t.
Name:
Marc Anthony S.
Age at Diagnosis:
33
Diagnosis:
Lynch Syndrome and Colon Cancer
Staging:
Stage 2A
Symptoms:
Blood in stool
Severe constipation
Persistent exhaustion
Constantly feeling cold
Treatment:
Surgeries: sigmoid colectomy, lymphadenectomy
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
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.
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.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
You aren’t alone. There’s a world full of wonderful people out there to help you through emotionally, physically.
It may feel like your world’s crashing down, but there’s so much support out there for you. Take it one second at a time until you can make it one minute at a time.
Shannon C.
First Symptoms and Tests
What were your first symptoms?
I was having severe pain after I would eat out. 20 minutes after, it is just excruciating, and I have a very high tolerance for pain. I thought maybe it was something with my diet. Something wasn’t sitting right.
I obviously paid attention to it, tried switching around, and it never really happened or never really fixed it. I went to a doctor in the fall of 2014 in November, and they said I had an ulcer because of the pain, where it was at, and I was eating. He put me on medication and [told me to avoid] caffeine, spicy foods, things like that.
That didn’t help, so I ended up living with it. Then it started getting severely worse, and I was bowled over in pain one night crying.
This is in December, and my husband urged me to go to the ER. “This isn’t like you.” I went, and they brushed it off like, “Why are you here for abdominal pain?”
They ended up doing an ultrasound and found out that I had an inflamed gallbladder, so they thought that was the issue. They gave me a surgeon’s number and told me to take Tylenol and contact the surgeon. That’s how this whole thing started.
I’m a type 1 diabetic, so I try to pay attention to patterns because of my blood sugars. I also had 2 young boys. They were 3 and 1 at the time. That wasn’t really the forefront of my issues. I was just trying to alleviate it by myself. Trying to figure out how I can make this a little better. I didn’t think it was a big issue.
It was stomach pains, and then it started getting worse really quickly. Really bad. I was starting to get very tired, but I wrote that off as having 2 young kids and working full time.
Which medical expert did you call first?
I contacted the surgeon. They ended up having my gallbladder removed because I’m a type 1 diabetic. There were a few potential issues with having an inflamed gallbladder they wanted to take care of. They didn’t think it was something more serious.
I had my gallbladder removed in January of the next year. I was still having this pain but not as bad, so I thought maybe this is part of the healing process. It was still painful into March, and I had started asking other people who had their gallbladder removed. I said, “Was it still painful? How long did it take for this pain to go away?” Everyone I asked was like, “What? You shouldn’t be having pain anymore.”
I blew it off at that point. I continued on with life, but then it started to pick up more and become even more severe after that. I made an appointment with a local GI. I think it’s relevant to say my mom also had colon cancer at 44. I went to go see her doctor that she had. [It] took me a month to get in. My appointment was set for the end of June to see the GI.
I could tolerate this pain at this point, so I ended up cancelling that appointment and moving it another month because I could tolerate it. I could still function. There were pressing matters with my 2 boys, and things were going on in life, so I blew it off for a little bit.
Describe the progression of pain
It was sharp [and] felt like someone was stabbing me in the stomach. Sharp, very sharp. It would only last for so long, and I felt that I could tolerate it for that amount of time. That’s what it was — this pain. All this constant pain and being tired.
Looking back at it, I shouldn’t have written it off. There weren’t any other symptoms that I heard from other people. I didn’t have any change in bowel movements or rectal bleeding. I wasn’t having any of that, so I was trying to figure it out on my own.
What happened at the GI (gastrointestinal) appointment?
At this appointment, we ended up having to see the NP (nurse practitioner) because I canceled the first appointment with the doctor.
I went in and was describing what was happening. She said that because I was a type 1 diabetic, this could be another autoimmune issue. Then she also said that she was going to send me for a CT scan because I had mentioned that my mom had colon cancer at 44.
I said, ‘What are you going to do a CT scan for?’ She said that she wanted to check for colon cancer. I said, ‘I’m 29. I don’t have colon cancer.’
She shot me down and was going to schedule it anyway.
Describe the first CT scan
That was in the end of July. I had my CT scan August 12 of the following month. She sent me to a different hospital system than what was local because of some type of imaging that they had that was better than around here.
They gave me contrast to drink. [I had] an hour I have to drink it. They do a chest, abdomen, and pelvis CT. You fit in a tube, and it takes about a minute or minute and a half to go through the tube and come back out.
It was 45 minutes away, and before I could even get home, my GI’s office was calling me, saying they needed to schedule an emergency colonoscopy.
I asked why. They couldn’t tell me what it was at that point. This is on a Wednesday. The following Monday, my colonoscopy was scheduled.
What’s going on in your mind at the time?
I’m not a person who gets worked up about a lot of things, so I figured, “Well, at least they’re coming to some sort of conclusion, because I’ve been living with this for a while now.”
Cancer was still not registering in my head whatsoever.
I was thinking maybe the colonoscopy showed an autoimmune issue because the CT tech who scanned me before I left had asked me if there was any irritable bowel syndrome (IBS) that ran in my family. That’s where I was thinking. It wasn’t anything further than that.
Colonoscopy
What happens at the colonoscopy?
They actually have a local surgical center that I went to. Before the colonoscopy, I had the prep, which wasn’t really that bad. I was expecting a lot worse, and it wasn’t. I was actually able to get sleep, because I have 2 boys!
Afterwards, they pulled me out of the operating room and obviously woke me up. They didn’t really say much until I had come to. My husband was right next to me. The doctor comes around, and she says, “We found a mass. We couldn’t finish the colonoscopy.” She said she wasn’t sure what it was.
How long does it take to get the colonoscopy results?
She sent the biopsy of the mass and said it should be returned in 2 days to let us know exactly what it was.
At this point, I think she knew what it was because my husband later Googled the image that we got in the report to get an idea. She was young, she was our age, and I think it hit home to her, so she didn’t want to say what it was — that it was probably cancer. My husband and I went home, and we waited.
That was a very long Tuesday because the results ended up coming in Wednesday. I tried to keep myself busy [and] tried to keep it together for my boys, knowing potentially what was in my future.
Wednesday comes around. My doctor’s office calls me in the morning. My husband had [gone] to work at that point because we weren’t sure how we were going to get the news of what it was. Then they say to me, “We need you to get someone you can trust to come with you to the surgical center as soon as possible.” That’s all they said.
I was a little crazy at this point. I had my 2 boys at home, so trying to keep it together until I could at least leave them somewhere. I had to call my husband to get him to come home so we could go to this meeting.
My mother-in-law came over and watched our boys. My husband came home from work. He and I drove up to the surgical center in silence.
We didn’t know what laid ahead of us.
Colon Cancer Diagnosis
Describe the meeting with the surgeon
We got to the surgical center. They ushered us into a very small conference room. We sat down. The doctor’s not in yet, and we had no words. We didn’t know what to say at this point.
My doctor came in. She looked at us and said, ‘I have never had to tell anyone as young as you are about cancer. Typically, my patients are 70 and older that I have to tell this to, but you have colon cancer.’
I remember a tear coming down on the side of my cheek, and I looked over to my husband. He was crying. At that point, I’m like, “Okay, got to get it together. What do we do next?”
I didn’t know anyone who’d even remotely come close to colon cancer. My mom was 44, and I wasn’t even supposed to have a colonoscopy until 34.
It was just, ‘Okay, this is the news.’ I let myself have a moment, and then I’m like, ‘Okay, what are the plans?’
We live around Detroit, Michigan. My husband says, “Well, I have this surprise planned for us to go to Houston, Texas, tomorrow.”
My medical team was wonderful. They had gotten me to have a CT scan that day just to see if they could see if anything had spread or not. That came back clear at that point.
Describe the process of setting up the surgery (colectomy)
They figured that I was just going to go straight to surgery as far as treatment goes. They set me up to see a surgeon that day. We left the surgical institute to my new surgeon’s office. We saw her. She looked at my chart, she looked at everything, and she said, “I think we can do this with just surgery alone.” So we saw her.
I had a few other [tests] done. Then around 7 at night, we got the okay that we could leave for Houston the next day.
We left for Houston. I love baseball. Houston Astros are my favorite team. Our fifth wedding anniversary was that Friday, and we were at the Astros game in Houston. They had a no-hitter that Friday, so it was a wonderful vacation. My family lived in Houston, so I got to spend time with all my relatives.
We came back, and an hour after my plane landed, I had my doctor calling saying, “You need to go here, you need to do this, you need to go to the hospital, and you need to have this done.” They had a surgery set up for me that Thursday.
My husband had that trip planned, and we went from the surgical institute to my surgeon’s office. I realized I was going to have to see my grandfather, aunts, uncles down in Texas. I didn’t want to just show up and be like, “Hey, guess what? I have cancer.”
I couldn’t tell them at this point. I didn’t have the heart to tell them that this was actually happening. We were in my surgeon’s office waiting for my surgeon, and we had an inclination she would [wait] a little bit before she saw us.
In this exam room, I told my husband, ‘I need you to call my family, and I need you to tell them because I can’t right now.’
I was strong and motivated to get everything taken care of, but I wasn’t ready to deal with it on another emotional level. He made the phone call. He let them know. He answered their questions as best as he could. That was one of the harder things to do.
My mom and my sisters live around here, and I called my mom after my appointment and spoke to her. She let my sisters know. I was not ready to deal with it on an extended family level at that point. Thankfully, my husband took care of that for me.
Rely on someone else to help you if you feel you cannot do it.
Was there any cancer staging?
She couldn’t stage the cancer at that point. She said they couldn’t finish my colonoscopy because my mass was large. She just took a biopsy of it, and it came back as cancer.
I wasn’t even sure what the next steps were. I didn’t even know what doctors I had to see.
I asked her about stage, and she said she wasn’t sure yet, but I’d have to see a surgeon and have a few other tests beforehand. Looking back to it, the mass had grown outside the colon walls. That’s why they couldn’t get through my colonoscopy.
We weren’t sure about the staging. After the CT came back from later on that day, we had a good idea that it hadn’t yet spread, at least into different organs. That was a positive aspect in the whole scheme of things that day.
I’ve had a few scares of other cancers, and the scanxiety is very hard to deal with sometimes. I find if I refocus and recenter myself on what’s at hand — that what’s going to happen is going to happen. I can’t control it by worrying. It helps me.
It’s different for different people, but if I realize that this whole entire situation is not entirely in my hands and allow myself to feel negative about it, it’s not going to change the result.
I actually did. I had my colon resection moved. They took 29 lymph nodes from my ascending colon. One was inflamed, but they all came back fine.
They staged me as 2A. My doctor had sent my tumor out for genetic testing because you can personalize some of the treatments for how that comes back.
My oncologist had never seen anyone my age with colon cancer, nor do I think she had many Lynch syndrome patients, if any at all. My oncologist recommended me for genetic testing, which I drug my feet about at first, because for a while, I didn’t even want to know if I had a risk for something else at that point. It was hard for me to work through initially. She was waiting on my genetic testing and tumor to come back.
I was diagnosed in the middle of August. I had genetic testing in September, the following month. The genetics of my tumor didn’t come back until September. It came back that my tumor is MSI-high, which was probably Lynch (syndrome).
My oncologist was up in the air whether to do maintenance chemo or not. She wanted to do it because of my age. I was also type 1 diabetic, and she wasn’t sure how the MSI-high was going to play into chemo.
Turns out that it can be detrimental to Lynch patients for chemotherapy for stage 2.
She brought my tumor to a tumor board and sent me to another doctor, whom I got another 2nd opinion with in October.
At the colon resection, I saw the oncologist. I had blood work done. They were monitoring me at this point. My pathology came back, and they staged me. My oncologist sent me to genetic testing and sent me to second opinion.
My Lynch diagnosis came back in October, and I saw the second opinion the day before my Lynch diagnosis came back.
That second opinion doctor said he agreed with what the tumor board had told her — that I would not be a good candidate for chemo because it was detrimental for a stage 2 Lynch patient.
At that point, they decided I was most likely cancer-free and that I needed to be monitored strictly from that point on.
The next day, I got a phone call from the genetics department at the University of Michigan letting me know I had a Lynch diagnosis. That was a slap in the face.
What is prep for the partial colectomy like?
The prep was actually like the prep for colonoscopy, except I just had to drink 2 bottles of magnesium citrate and be on a liquid diet. It was pretty much the colonoscopy process to get the colon cleared.
I went in early in the morning, around 5 o’clock. I’m a type 1 diabetic, so they always see me first. I think the surgery lasted 2 hours. It wasn’t very long, as opposed to a lot of them. We weren’t sure when I went in for the surgery if I was going to wake up with an ostomy or not.
What is an ostomy bag?
It’s a bag where they have to put your colon through your skin in order to relieve yourself of your stool. They weren’t sure if they were going to be able to reconnect my colon at that time and said that I may have to have an ostomy.
As the surgery went, they were able to reconnect it without any tissues dying or anything, so I didn’t have a bag when I woke up. At that point, I didn’t even really care if I had one or not.
When you have to worry about things like surviving cancer, it didn’t bother me if I would have woken up with one, to be honest.
If you needed the ostomy bag, how long would you have worn it?
My doctor said I’d probably have it for about 3 months, and then I’d come in. They’d do another surgery where they tried to reattach my colon and would no longer have a bag.
That was the only concern my surgeon had. I didn’t care.
What happened at your partial colectomy (colon resection surgery)?
They took out my ascending colon and reattached my colon together, so I just have that part missing. I was in the hospital for 4 days. It was going to be between 4 and 5 days, but I’m the type of person who likes to do as much as I can to get out early. I was up and walking around 2 days later. That was it for the surgery for that.
What do you have to do get discharged from the hospital?
I had to have a bowel movement, and I had to fart before I could leave [the hospital].The gas can build up, and they need to make sure you can push it through your system.
I had to stay one additional night from when they were going to let me go home because I had bloody diarrhea. To make sure that my bowels are still functioning well, they had to make sure everything was mostly returning to normal.
Obviously, it’s not going to turn normal right after a major surgery immediately, but they had to make sure my systems were working correctly and everything was under control.
I had rectal bleeding with diarrhea, so they kept me for one more night just to make sure it wasn’t a bigger issue than it could’ve been. They never really said what it was.
I’m assuming it was just the surgery internally healing. They kept me one more night, and then it went away, so they let me go home.
Recovery and Follow-Up
Describe the recovery process
As far as recovery time, I think it was about a week. I’m one who likes to push my limits, and sometimes it’s not a good thing. My husband was very like, “You need to lay down on the couch and not do anything.” He set up for people to come over and help with the boys during the day while I recovered.
When do you feel more fully recovered?
After about a week, I was able to really get up and start doing things. I would get up for a little bit, but I was really tired after the surgery. I think that’s a really good point to make. You need to let yourself heal sometimes, even though your mind may be saying, “You’ve got to get back to normal; you’ve got to do this.”
But sometimes it’s good to just give your mind a rest and just relax.
What are the follow-up scans?
They did a body scan 6 months later just to make sure that nothing had started again. That came back with a spot on my liver. I had the body scan, and then I had a doctor appointment. My husband wasn’t going to come with me to the doctor appointment.
He was just going to stay at work, but he ended up surprising me at the doctor appointment, thank the lord. My doctor walked in, looked at me, and said, “Well, we found something on your liver.”
I didn’t think I was ready to do this again. They ended up doing another MRI and found it was a benign mass that they saw on my liver. That was my first real anxiety!
My oncologist makes sure she has an answer for everything that could potentially be an issue. She scanned me from head to toe, sent me back for an MRI, looked at the area, and it came back benign.
In terms of PET scans, she said something about how what she needed to see in my tissues wouldn’t show up on a PET scan. She always sends me for CTs.
How do you mentally manage the scans?
There’s nothing you can do to make the outcome any different. If you waste negative energy on crying and worrying about it, it might even make it worse because sometimes it’s not anything to worry about.
What is the overall follow-up plan?
They were planning on watching me closely and developing a plan according to how my genetics came back.
You have an annual colonoscopy now
I have them the rest of my life. They put me under, so I don’t feel anything. I just sleep and wake up, and they let me know if they found anything.
I also have to do EGD every year, so they do that at the same time as well. They stick a tube down your throat to see into your stomach and your esophagus because I have risk of gastric cancer. They do the colonoscopy and EGD at the same time.
They put you under, so I don’t feel anything. I just sleep and then wake up. Sometimes it’s a good break, having boys! I always joke and say it’s the best 45 minutes of sleep I get.
Lynch Syndrome Diagnosis
Describe when you learned your Lynch syndrome diagnosis
I think there are 5 different mutations attributed to Lynch. I’d just seen the second opinion the day before and was pretty happy thinking I was cancer-free.
I wasn’t going to have to hear the word “cancer” again, and the next day I got a phone call from the genetics department saying I had tested positive for the MLH1 mutation, which opened up a whole entire category of risk for cancers. I’d have to be monitored.
I was so elated one day, and the next day, it was like someone pulled the rug from my feet and smacked me in the face, because I’m never going to escape the cancer world. I had a really hard time with that one.
I was mad about it, actually, at first. We went through colon cancer. It turned out very positive for us, and then we found out that I had Lynch. Not only that, now my sons have a 50% chance of having Lynch. That was a big pill to swallow for me.
What’s the follow-up because of Lynch syndrome?
I’d have to have a yearly colonoscopy because I have a higher risk of occurrence now. On top of that, I have a higher risk of developing a second cancer within 15 years of my first diagnosis.
That raised my original risks a little bit higher now. I’m monitored all the time for them.
The colon cancers grow very fast. My GI said I probably had cancer for 1 to 2 years before they found it at stage 2. It just started, as opposed to 5 or 10 years for the general population without Lynch.
Yearly body scans until year 5. CT scans until 5 [years]. For different medical professionals, they have different opinions on how monitoring Lynch should be. [My oncologist] and I are in talks of maybe having a yearly MRI after the body scans, because I’m going on year 5 right now.
We’re figuring it out as we go when it comes to Lynch. There’s a lot of additional monitoring on top of colonoscopies and things like that.
Is there family history of colon cancer or Lynch syndrome?
She was 44. She was diagnosed in the early 2000s, and I don’t think anyone brought up any genetic issues because I think she was so close to 50 that her doctors didn’t really think anything of it. That’s what I’m assuming. My mom has passed, so I can’t really ask her.
She was stage 1. She was pretty much like me. She had surgery, and then she was okay. For some reason, it didn’t raise a red flag.
My great-grandfather on her side passed away from colon cancer when he was 35, so we don’t have any records of that side of the family.
My great-grandmother also had Lynch, but she had skin cancer. She never had colon cancer. My mom was the only one with colon cancer. We didn’t have a really heavy family history of cancer that we knew of.
How do you tell family after a positive Lynch syndrome result?
They gave me a letter that the genetic counselor had already written up for anyone who has Lynch to give to relevant family members. My mother’s siblings, my siblings, and my sons obviously will have to be tested as well.
Michigan won’t test them until they’re 18 years old. Not sure if it’s different in other states. It goes differently for ethical reasons. We have to wait until they’re 18 to figure out if they have it or not.
Keeping up with the Lynch syndrome screenings
It’s very important to keep up with your Lynch screenings. There are a lot of screenings, and sometimes it feels like a full-time job. I have it now where they’re scheduled at the same time during the year. If you don’t keep up with them, the chances of developing a cancer are [up there].
Cancers grow fast. It’s good to have knowledge to stay on top of it. The one thing that helped me digest having Lynch was now that I know that I have this, it means I know I can use what knowledge I have to stay ahead of the curve. Hopefully, stay ahead of anything developing and staying on top of screenings.
It does get tiresome. I did try talking my GI into switching my colonoscopies from a year to 18 months. When I asked her that, she said no. I was bogged down with all of these tests, and I was so sick of it, I said, “Can’t we just scoot it back 6 months, wait 6 months, have a little break, and then we can have a colonoscopy?”
My GI told me to hold on and sit down. She looked up and found statistics on cancers developing in Lynch patients who’ve already had colon cancer. She said, “No, I think we’re going to keep it at 12 months.”
Then I had my colonoscopy a month later, and she found a polyp that wasn’t there the year before. She comes in and says, “See you in a year! You’re not getting out of this one.”
When it comes to Lynch, stay on top of your screenings, listen to your body, and advocate for yourself.
What’s the best thing that gets you through the hardest times?
When I was diagnosed with cancer, a lot of people who were cancer survivors — some I knew and some I didn’t know — gave me some advice. One of them really stuck with me through cancer and through other things that I’ve gone through since then.
Best advice you’ve ever gotten
One of them was, ‘Take everything one second by one second. Then when you can move to a minute, take everything by a minute. Then 5 minutes. Then move onto an hour. You’ll eventually get through and it’ll be easier for you to deal with.’
At first I was just overwhelmed with not just the cancer, but all this knowledge that was being thrown about what I should do, what I might not be able to do as far as treatments go.
It was a whole entire other world that blindsided me. I didn’t even know it existed at that point. I just would relax, take whatever I knew that minute, hold that for a minute, then to the next minute.
These little segments of time ended up being longer and longer and longer. I found myself like, “Okay, I can get through this. I went through this the day before.”
Between my colon resection decision and chemo, it was about a month, and my doctor would say, “Well, I’m waiting for the test. We need to get you in chemo right now. You have to be in it. You have to be on chemo by a certain time, or else it’ll be ineffective.”
Every week she would call me saying she didn’t have these tests or these tests, so my anxiety was building inside.
Am I going to be on chemo? Do I need chemo? Is the cancer spreading right now?
As advice, it helped me through that part right there. Okay, I don’t have the answers. There’s nothing I can do about it until she has answers, so look to the next hour and see what happens after that. That’s the best advice that I was given during all of this.
My youngest son was 1 at the time, so he had no clue. By the time I was diagnosed, my oldest was 4. He was 3 when everything started. He was kind of grasping that something was going on because I was gone for a week, and then I was at home, sitting on the couch, not doing anything. He knew something was up.
I don’t really sugarcoat with anything, and he wouldn’t understand what cancer was. I told him, “Mommy’s kind of sick right now. The doctors are taking care of it. I’m not going to be around you for a little bit right now, but I’ll be better soon.” That’s something he could understand at that point.
I was working through the entire month, wondering if I was going to do chemo or not, working out a way to explain that to him. That never came to pass, so I didn’t have to explain that to him.
That was one of the hardest things was trying to come up with a way to explain what as going on to my sons, to one who could understand something wasn’t right.
Not to sugarcoat, but just say, ‘I understand things aren’t right and that things don’t look right to you, but this is what’s going to happen. This is how we’re going to get through it.’
How does cancer impact your marriage and your husband?
That was something we never saw coming, but he turned out to be very supportive, very helpful. He was working 12 hours a day at that time. As I’m recovering, he would get home and would pick up the slack that I had from going through all this stuff right now. He was wonderful, so I’m very thankful for that.
I think it impacted him in a way that made him realize that life is really fragile, more so than he thought.
Growing up, my father passed away when I was 16. My mom had a progressive form of MS, so I was used to hardships and life not being super easy.
He didn’t have that. When I was diagnosed with cancer, it hit him to where, “Wow, I need to be grateful for things.”
I wish I had known more about the whole thing. You obviously can’t. I was so overwhelmed with all this information that I had no idea about.
If you’re about to go through surgery or diagnosis, learn everything you can so you understand what the doctors are trying to tell you.
My doctors are brilliant. They’re wonderful people, but sometimes we weren’t on the same level because I had no idea. I was in flux with all this crazy information. I was in this whirlwind that I couldn’t focus.
I had a family member come with me to one of my appointments, and I had them take notes. That really helped out a little bit further on because I could look up what was said and see where my doctor was coming from.
Sometimes it wasn’t clicking because I didn’t know anyone who had dealt with this, especially my age who had dealt with this. That was another thing to realize.
There are people who are out there who understand and people who go through it at young ages and can relate. That was another thing where I felt emotionally very alone, because everyone I had known who had dealt with colon cancer was much older.
We didn’t have the same problems. Their kids were grown; their kids were off to school, off living their own lives. I had these 2 young boys at home. Things are just different, trying to associate myself with someone much older having the same form of cancer.
Perspective on life after cancer
Even now, I’m 4 years out — fingers crossed, going on 5 — I was able to be happier more easily. I tell people as bad as cancer is and as horrible and tragic as the cancer world is, there is some good.
It gives you wonderful perspective on life. I’m so much more grateful. I laugh so much more. I feel things differently than what I did prior.
Where do you find cancer support?
Through social media. I had no clue about colon cancer, so I just started sharing what information I could about colon cancer and risks, and Lynch syndrome on top of that. I eventually started meeting all these people who are my age — some of them are even younger — who had colon cancer or dealt with colon cancer.
It made the very lonesome island that I thought I was on much more friendly and filled it with love. As bad as the circumstance was, you aren’t alone.
It’s a good thing to remember. You aren’t alone if you’re going through this right now.
Survivorship
People are like, “Oh, you’ve been through colon cancer. You don’t have to worry about anything else.” But no. I try not to let it affect me. I try not to let it bother me or detour any of my goals in life. I try to only acknowledge when I’m having my testing done, because otherwise it would bring me down.
Cancer is never not going to be a part of my life. I participate in a lot of advocacy now for Lynch syndrome and younger-onset colorectal cancer. I try to take what I’ve learned and help other people. It helps me cope with Lynch and with colon cancer. Just trying to use what I went through to help someone else. I think that’s a benefit we can all take from something like this.
As far as cancer and myself go, it’s always going to be a part of my life, whether I have it or don’t have it, because I’m always going to be monitored for it. That’s something many people don’t realize. I just try not to let it bring me down. I try to turn it into something positive.
I had never heard of Lynch, nor did I hear of younger-onset colon cancer when I was diagnosed. I try to take what information I have and spread the word about it, so hopefully if it happens to someone, they won’t be like, “I don’t know anything about it.”
Message to people dealing with a new cancer diagnosis
You aren’t alone. There’s a world full of wonderful people out there to help you through emotionally, physically. It may feel like your world’s crashing down, but there’s so much support out there for you. Take it one second at a time until you can make it one minute at a time. There’s so much love.
Cancer world is horrible. A diagnosis is horrible, but there’s so much love out there and so much support out there.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Stay strong and positive. Don’t focus on any negatives within the situation. Just focus on each step of how you can get better, and try to handle those as soon as you possibly can.
Chris T.
Colonoscopy and Diagnosis
How did you know something was wrong?
Unfortunately, cancer has been a part of my family history. Not me, per se, but my dad had cancer. Some other people: my grandma and a couple aunts. My dad got cancer in his early 40s, so I was always told to just go get checked out.
I just went in for that routine colonoscopy, and once they were done, they basically told me I had colon cancer and they didn’t know the stage or anything. At that point, I didn’t have scans.
When did you get the colonoscopy before your diagnosis?
I got a colonoscopy that January, and our daughter was born in May. I initially was going to wait until the following January to do it, but I decided to accelerate it just because she would be 1 [year old]. That was a blessing to have that pushed up instead of waiting another year.
Just speaking with my doctor and telling her my family history and me wanting to get a colonoscopy, she encouraged me to go. Prior to the colonoscopy, I had got some blood work done.
I had low iron, which my doctor found out. Then after I explained my family history, she sent me in, even though I was going in anyway. That’s where it all started.
In hindsight, were there any red flags, symptoms, etc.?
Regarding symptoms, initially, I didn’t really feel any symptoms. After finding out that I had colon cancer, in hindsight, I was able to pinpoint certain symptoms — certain things you attribute to things like age.
There were things I brought up to the doctor’s a couple years ago, like when I sneezed, I’d get a pain in my lower abdomen. I was like, “That’s odd.” I went in for that, and they didn’t really know what it was.
Also, not to be too specific, but when I had bowel movements, they would be choppy instead of just one whole piece or cylinder.
In hindsight, [it] was that way because it’s a tumor, chopping the bowels as they went down, and the tumor would cause that excess gas. When I was sneezing, [there was] that pain.
Also, for whatever reason, I would be full for hours after eating one orange. That’s because of how acidic the oranges are. Those were some symptoms that I realized after the fact.
How long had you experienced those symptoms?
I don’t remember exactly how long, but I know that the sneezing pain situation happened at least a couple of years, but it was happening [more] frequently [closer] to the date I got tested. It happened once a month, or something like that. A couple years before, every few months or so.
That would happen more frequently closer to the colonoscopy, and then I don’t really necessarily remember the date of when my bowel started seeming choppy or I felt full from the acidity for eating certain foods.
How old were you when you got the colonoscopy?
31. That was the first one I’d ever gotten. From what I understand, it used to be in [your] 50s when you’re supposed to go, but they pushed it up just because people are getting it more frequently now at a younger age. I think the average or the recommendation now is mid-40s or late 40s. That’s for people who don’t have history. Late 40s, early 50s is what I understood.
When I went in, everyone was confused why I was going in, because initially when I was describing what was happening, they were just like, “Oh, you don’t have any blood in your stool, or you don’t have any of the common symptoms. Why are you here?”
Then I’d fill them in, and they understood it [was] because of my family history.
What is the prep for the colonoscopy procedure?
At first I was nervous just because I’ve never had anything like that done.
You have to fast for a certain amount of time prior to the colonoscopy, and you have to drink this liquid that clears out your colon so they can get a clear view of everything.
Then you have to take a couple of pills as well. I don’t remember the specific name of the medicine.
The worst part — or the challenging part of the prep — is drinking gallons of this liquid that they make you drink to clear out your bowel. It doesn’t taste the best, and you have to frequently use a bathroom to clean out your system, for about 24 hours.
What’s a colonoscopy like?
They check your medical information and confirm it’s you. I go in the back and change and lie in the bed. It’s not too intense when you’re sitting there.
A part of my preparation process was then to use anesthesia. The nurses come back, and they check my blood work and then administer the process of anesthesia. I go in the back and eventually come out and just wake up with some of the results. It was fairly quick.
Describe how you learned the diagnosis
It was a curt situation. The doctor came in. I was like, ‘Hey, so how’d everything look?’ [I was] in these happy spirits. He was like, ‘Well, not really good. You have cancer.’
Our jaws dropped. There wasn’t really too much bedside manner with it. They weren’t mean about it, but it wasn’t too much bedside manner. I know different doctors are different, but that was my experience. I wouldn’t want anyone to be discouraged because of that.
At that point, we started asking about next steps, and that day there was nothing we could do. We went home and then just scheduled everything as soon as possible.
He gave it a generic description of the size. At that point, he told me it doesn’t look like stage 4. Worst case is stage 3, but we can’t confirm that, so you’ll get scans and do all the other testing.
That’s all the information I was able to get, but it was still just uncertain.
Tests and Scans
What appointments did you have to schedule before the surgery?
First it was the CT scan to see how big the tumor was and genetic testing, to pinpoint why it happened, if there was a reason why it happened, and then the next steps to take for the surgery.
We scheduled a scan as quickly as possible at the nearest Kaiser that had the first opening for CT scans. We didn’t want to wait a couple of weeks. I think we scheduled something for a couple days later.
There was a lot of waiting for scheduling appointments and for test results
The worst part about that initial process — besides or excluding finding out I had cancer — was waiting a while to get the results for the CT scan, because that will take about the week. You’re just sitting, waiting there and trying to just figure it out. You’re wondering about the severity of a situation and basically prepping yourself.
It seemed like it was a common thing for them. Unfortunately, they just need the information, and then it’s like, “Okay, my job’s done here. Go to the next step.” I understand, but you don’t feel that way from our perspective as patients and caregivers.
Any tips on how to manage the stress of constantly waiting?
I’m just a really positive person and optimistic. That’s how I was raised. But obviously, there’s challenges. You’ve just got to look at the bright side of everything.
There’s a reason I went in early. I’m glad I caught it early. This could be happening years from now. I don’t know how bad it would be, but I’m just happy that I was addressing it. Just trying to put a positive spin on everything.
My wife was really helpful as well. She was really strong in that situation. While she was pregnant, she was very helpful. It was also challenging for her. Within that waiting period, we just focused on everything positive. Moving forward and beating it as soon as possible.
I try to apply that to everything in general, though. There’s always pros and cons to situations. There’s people, there’s kids who find out news about cancer and everything. Just having a proper perspective of it. Not feeling sorry for myself.
What is a CT scan like?
I’m not sure how many of them did, but they did from the top of my chest down to my pelvic area, basically my upper thigh. They didn’t see anything anywhere else besides the one tumor that was on my transverse colon, which I think is the lower right part if you’re looking down at your stomach.
I forget how big. I think it was around 3 inches or so. They [hadn’t spread to lymph nodes], so they were able to find that it was just the one large tumor.
How did you do genetic testing?
After they did CT scan, I went to see the genetic counselor. It was all a process of just rescheduling these different appointments, but just trying to get in to see me as soon as possible.
With the genetic counselor, I went back several times. I think they took a spit sample, and then they had to send it in. Then when they got that back, I went back to hear the results.
We figured out that I had Lynch syndrome. You have a higher chance of getting certain types of cancer. The main cancer that I had a higher chance of getting was colon cancer. I think they said there was a 50 to 80% chance that I would get it.
Then all the other cancers are smaller percentages. If someone has a 2% chance of rectal cancer, I have an 8% chance of rectal cancer, and so on for other types of cancers.
Everything else was on the smaller end, like in the single digit percentage, meaning a higher risk for the colon cancer was the only one that was that 50 to 80% range due to the Lynch syndrome.
How did you decide where to go for treatment?
I was meeting a surgeon at the local Kaiser I go to. Depending on the type of surgery that I wanted to get done, depending on the experts, he wasn’t the best, but I was initially just going to have him move the ascending colon.
Treatment Decisions
What was the recommended treatment for your colon cancer?
It’s either removing a portion or removing the whole thing.
The reason they recommend removing the whole thing is because having Lynch syndrome, the chance of getting colon cancer again is increased.
Deciding whether to remove the entire colon
I’ll start with the pros of not taking the whole colon. The pros of that were basically, I could guarantee that I wouldn’t have a colostomy bag. The surgery was quicker; the recovery was faster. I didn’t know how my body would react to taking the whole colon.
They described removing partial colon as an easy procedure, easy surgery. I looked at it as well [that] I still have some of that to help my body process [and keep] the same functions that it’s supposed to have.
The uncertainties of removing the whole thing and not trusting certain information I find on the internet and just not sure about how I was going to be able to navigate through life.
That thought process was stressful and intense, because although people tell you that things are going to be okay, you don’t know how your body’s going to react to not having a colon and then substituting that and using your small intestines to function as the colon would.
The initial questions were:
Am I going to have a bag (ostomy), and if I do, that’s not the worst thing in the world, but how am I going to move through life?
Am I going to be able to go to Disneyland?
Am I going to be randomly on a jog and have to go to the bathroom urgently or at park or wherever, whatever I’m doing?
All those things played a factor, and I basically consulted with our friend who’s an oncologist. I talked to her, and friends and family helped as well.
The main issue was having a colostomy bag. After I got over that, I was able to move forward easier with choosing to remove the whole colon.
The doctor saying that I did not need a colostomy bag really helped me with that as well. They didn’t do anything to my rectum, because the colon connects to the rectum, so that that’s still intact. He’s like, “If something else happens, we’re able to still work with you to not have a colostomy bag.”
Just thinking about the big picture and everything helped me ultimately decide that having a colostomy bag wasn’t the end of the world. Just being healthy is the most important. That’s what helped me move forward with it.
Just mirroring off of that, on the other end of removing the whole thing. The main reason for me doing it was because of having those genetic testing, having Lynch syndrome, the odds of it coming back being significantly high for me.
How did the surgeon describe the odds of you having to have a colostomy bag?
He just mentioned that surgery in general doesn’t require that, the way the surgery is done and how they’re able to fix things back together. Basically, it’s not required for a lot of people.
Every situation is different for people. There’s people who have Crohn’s disease or other types of things on why they need to have their colon removed. Some people might have to have the surgery and have a bag temporarily, depending on the surgery or depending on how your body needs to recover.
He pretty much guaranteed I wouldn’t need one and if I needed one, it would be temporary while I was in the hospital. They would just go back and patch me up, and I’ll be good going forward.
Would your decision have been different if you needed a colostomy bag after the colectomy?
I would have been leaning toward not removing the whole thing, but I honestly can’t say what I would have decided. I was being pushed towards removing the whole thing regardless, just because ultimately it was the best thing to do.
Sitting from where I’m sitting and knowing how I felt then, I feel that it would have been more difficult to decide.
People will always give their advice — even unsolicited
To be honest, it could be a little irritating and stressful dealing with certain people, because a lot of people think they’re doctors and have the best answers when they’re not. I have people giving me information, trying to go directly against my surgeon, who [specializes] in colonoscopies and colon surgeries.
Everybody’s giving their 2 cents, which could throw you off or derail you from what you shouldn’t be doing or what is in your best interest, even though they have your best interest at heart.
It doesn’t really align sometimes with what you’re thinking, because everybody just gets panicky and starts throwing out recommendations or worst-case scenarios like, “Oh, I know someone who doesn’t have a colon, and this is how their life is, or whatever perspective they have on it.” That part was difficult.
How did you handle unwanted advice from well-meaning people?
Eventually, after that point, I would still talk with people, but I filtered it out. I just started doing my own research. My wife and I did research. We just prioritized opinions, even though everyone’s opinion matters.
We prioritized my friend who’s an oncologist who works with cancer, obviously, all the time and every day, and my specialist surgeon and the certain doctors that we trust. We just had it prioritized that way.
I also find this platform amazing. I searched hashtags on Instagram and was able to find a few helpful people to give their perspective, their story of their situation regarding having a colon removed or life without a colon, how they handle things, and what their experience was. That was really helpful.
Finding your cancer community is important
I think this site is awesome for that. That’s what actually helps a lot on me making a decision. Ultimately, obviously, it was my own decision, but it was helpful hearing success stories of people who actually went through it.
Looking up things on the internet can be unhelpful, just from a broader angle. You might read something that doesn’t even apply to you. People have surgeries for different reasons. The reason you’re having a surgery might not [be the same]. You might not have the same reaction to someone else.
I always suggest the internet’s helpful, but then just be aware of not looking at the negative stories and thinking that that can be your worst-case scenario. Filtering that out and knowing what source is credible and how it applies to you.
You decided to remove the entire colon (colectomy)
I also decided to remove my whole colon, which is called a colectomy. I did that because I didn’t want to increase the risk of getting colon cancer again with having Lynch syndrome. That’s the highest-percentage place that my cancer can come back.
I didn’t want to regret not removing the whole thing and seeing however many years it comes back for whatever reason and comes back more aggressive. In my situation it wasn’t aggressive; it was a slow-growing tumor.
Just talking with a close friend who’s an oncologist, she told me that. I thought it was the right approach, and I wouldn’t want to regret that down the road if I get cancer again, which I don’t think I will.
If I did, I wouldn’t want it to be because I didn’t remove my colon, because I didn’t want to go to the bathroom a few more times a day.
That’s what I decided, but I had the option to decide that down to the minute before my surgery was going to take place.
The surgeon said it’s the same thing for me. I’m going to go in there, and I don’t need to get any different tool for the surgery.
You literally have up until before you’re sedated and under to decide. I was in the back, and I was pretty confident on deciding that I wanted to remove the whole colon.
Was it helpful to have your wife at appointments?
Yeah, it was very helpful to have her there. She took notes while I was engaged with the doctor, and she actually stayed in the hospital with me pretty much every night, while she was pregnant, while I was recovering.
Regarding the prep, it’s very helpful to have someone go with me, field questions, and ask additional questions. In the moment, you might have a list of questions. You can get caught up in the conversation and forget to ask something, but that other person being there will be able to help with that.
Colon Removal Surgery (Total Colectomy)
What do you remember about the surgery and recovery?
I don’t remember how long the surgery was. I know that the recovery was challenging. I was in the hospital for about a week. I was heavily sedated, and I woke up that next morning. I was in pain.
It was very difficult to walk because the surgery was in your stomach, in your core, so it was hard to get out of the bed. When I had to go to the bathroom, it would kind of leak out, like a green liquid. I needed help to go to the bathroom.
I had pain medication throughout the day. I also had a catheter for the first few days. I couldn’t eat much, basically jello, broth, and ice chips. There were days I didn’t want to eat anything.
Then you start to get better, and they encourage you to sit up in a chair as opposed to laying in the bed. They encourage you to walk around the hospital. We’ll walk around with the little thing that holds your IV, the pole. That gradually got better.
What was the impact to your life after removing your colon?
One doctor told me you can have a bowel movement about 10 times a day, they’re going to be this way or that way, and the recovery can take this amount of time.
The main difference they describe is just how often you go to the bathroom. In my case, I’m basically going about the same as I did prior to my surgery, regarding bowel movements.
There’s also days that it’s worse. Depending on certain things you eat, it might come out differently, but you’re able to eat whatever you want, and that didn’t change.
The results of the colectomy were successful
What they described to me from best to worst case scenario, I’m more on the best-case scenario, which has been such a blessing. I’m very grateful for that.
With that being said, I’m extremely happy that I chose that option. Initially, going through the recovery, this was a little frustrating and painful and just dealing with all that, questioning your decision. As you heal and get better, it was all okay in the end.
How was dealing with food and bowel movements?
They slowly integrate solid foods, but I felt that when I did, I wasn’t really ready for that. I didn’t really have an appetite for it, but they eventually started implementing solid foods.
I’d still take my time and maintain a liquid diet, which was just water, jello, puddings, and stuff like that.
How did they know when to discharge you from the hospital?
They made sure I was hydrated enough [and] took the catheter out to see how I reacted to that. How I was feeling overall was the main thing.
Was there anything you wish you had known before the surgery?
They were pretty good about informing me on everything prior to the surgery. They didn’t leave anything out. It was nice having them do the laparoscopic surgery, where it wasn’t too invasive. That was helpful knowing that in advance, and we were pretty well informed.
We had several doctor visits and asked thousands of questions, but they were very helpful. The nurse practitioners [and] everyone were helpful within that process.
We did extensive research on our end, so by the end of that, we felt like we took a course on it as well. I think I had all the information I needed going into it. It was just the uncertainty of how my body would react to the surgery.
Any questions you suggest other patients keep in mind?
I would suggest if you’re uncomfortable about the colostomy bag, ask about how the procedure is done. I also asked about the scarring and how that would look.
I would recommend asking about just the recovery process. Make sure you’re giving them your full medical history and let them know everything related to your body so they can give you the best-case scenario.
Post-Surgery Recovery
How was recovery at home?
Once I was discharged, it was challenging at home. They gave me the medicine I needed, but I would walk around and try to get through the pain.
The biggest challenge that I had was dehydration, because once I was able to go to the bathroom, [I went] more often. One day I went 13 times or something, and it was all like diarrhea. I was extremely dehydrated and had to go back to the ER to get rehydrated. I think I stayed in the hospital for a day or so maybe.
I just had a catheter. I had just learned to go to the bathroom. Initially, it wasn’t a lot. The more I ate, obviously, the more frequently I would go, but initially it wasn’t too often.
After that I was getting back into the normal swing of things. It was very painful but every day was progressing in the right direction.
A couple weeks after the surgery, I was able to go on walks. They weren’t quick walks, but I was able to go out and do stuff.
Every week from there was going in the right direction. I think 3 weeks after the surgery, I was actually walking a couple miles a day or something.
What were the next steps after surgery?
They told me to monitor my bowels and hydration. I know I had to go back to get my stitches or staples removed from the surgery. I think that was a few weeks after the surgery. It wasn’t painful; it was like a pinch when they took it out. It wasn’t bad at all.
How was the healing process after the surgery (total colectomy)?
I don’t want anyone to be discouraged from that, because that was a small part of the journey. In that process, second guessing why [we] removed the whole colon and if it would have been less excruciating pain if I didn’t and all that stuff, but those were just small moments within that.
Gradually, every day you got better. Initially, it was very painful. I don’t want to lie, but after about a week or so, it was fine. I got back pretty quickly.
You had to stop work for about a month and a half
Initially, it was tough getting through the surgery recovery, but then after that, it was nice pulling my strength back up, going on walks, eating more normal food, and doing more normal things from prior to the surgery.
When I went back to work, I was pretty much 100%. It’s nothing physical, where I have to do manual labor. It’s at a desk, so it wasn’t as difficult to come back. I wanted to make sure I was 100% and take advantage of the leave they provided.
Any guidance on how much time to take off work?
I thought that was enough [time off]. I don’t want to take too much time because I need to take time later in the year for paternity leave, so that motivated me to not take too much tine as well. I personally think a month and a half was enough for me.
Every 6 months would be the routine for that initially, then moved to every year. I’ll still see my oncologist every 3 months. I met with my oncologist 3 months after my surgery, then I saw her every 3 months, except this year it’s every 6 months.
Every year I’ll have to have a sigmoidoscopy (check rectum) to see if anything came about, if there’s anything cancerous there. It’s every year ongoing because that’s the closest thing to the colon, the highest thing to getting cancer, so they’re going to check that every year.
Describe the follow-up appointments
The appointments consist of blood work and the scans. Not every appointment has a scan, but it does have blood work. They test you and see how you’re feeling if the blood work seems fine. There’s a couple urine tests as well through the visits, but they’re general checkups.
Mental and Emotional Impacts of Cancer
How has cancer impacted you?
Just perspective. I’ve always had a good perspective on everything. An example is when my mom unfortunately passed away from gastric cancer. When she was in her hospital bed, she was telling me there’s kids who have cancer.
At least I’m 50-something and always had that positive spin on things where you can’t feel sorry for yourself. Although this did help with perspective, I’ve always had a good understanding of things could be worse.
It helped me try to spread this information and help people as much as possible, be a positive example of someone who can get through the situation successfully. Just wanting to spread that as much as I can.
Physically, I feel fine. When I was first done with surgery and started to work out again, I was hesitant to do anything core-related. I got over that and was able to do so.
I just try not to push it with certain things. It’s just me, depending on the day, being cautious, but I’m pretty much able to do everything I could before physically.
You still think about cancer sometimes
There’s times when you feel something, especially after the surgery. Little twinges where the surgery were — is that something related to the cancer or to the surgery?
There are times I don’t think I have it, but I might think that feels different. I am just more aware of smaller things that aren’t a big deal in my body. I’m not necessarily afraid of them. I’m just like, “Well, I had a scan this month and blood work this month. Everything was fine.” The consistent checkups help me with the anxiety.
Knowing I had a CT scan last October and an oncology appointment this year — if something feels different, it’s comforting knowing I had those appointments.
What helped you mentally heal?
Family. My wife was very helpful. Knowing I had a daughter on the way a few months after my surgery definitely helped me be in the right spirits, focus, and try to get back as soon as I possibly could.
Talking to people. Not anyone who’s negative or had a negative outlook on things. Community. Family. A good support system with family and friends was really helpful. I had people visiting me throughout the process while I was recovering, so that helped a lot.
Message to those hearing your story
I would say to stay strong and positive. Don’t focus on any negatives within the situation. Just focus on each step of how you can get better, and try to handle those as soon as you possibly can.
Regardless of the results that you hear from the doctor, just know you have a chance, and you’ll be able to beat whatever situation you’re going through.
Don’t be afraid to do the proper procedures and surgeries to give you the best possible outcome for surviving and beating it down the road. I know my situation was tough to decide whether to get rid of the whole colon or partial.
Just do whatever’s best for your overall health, even if it means potentially having to change your day-to-day life. I think that will be the right thing to do.
Shannon’s Stage 1 Lynch Syndrome Colon Cancer Story
Shannon M., who has Lynch syndrome, shares her stage 1 colon cancer story. Shannon details her experience with surgery (partial colectomy), importance of mental health care, and parenting with cancer.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Getting a cancer diagnosis can be overwhelming, scary, and anxious. You can feel like your world is caving in after one phone call.
What I would like you to know is that you are not alone. There are other people that are dealing with all the things that you are.
You are going to get through this. You’re resilient. You’re strong. Rely on other people. When you can’t take one day a time, take one minute at a time, because it will add up. You can get through this.
Shannon M.
Diagnosis
What were your first symptoms?
My story might be a little different in that I didn’t have any symptoms. I didn’t know anything was wrong. I had just turned 36, and my daughter had just turned 1.
I was going in for a routine colonoscopy because I have something called Lynch syndrome, which is a genetic mutation that puts me at really increased risk for a lot of different cancers. Colon cancer is one of them.
I’d just had one a year before, but it was clear. I was pretty shocked to find out the next one wasn’t quite normal. The process went from there.
How did your doctor diagnose the cancer?
I was really lucky to be dealing with a surgeon who was familiar with Lynch syndrome, because I don’t know if other surgeons would’ve caught it. They did a biopsy on a polyp that didn’t look quite right.
The first time, it came back as inflammation, and my surgeon said, “Shannon, it can’t be. It’s not right.” He said, “I think we should do some more imaging and another colonoscopy so I can get a better biopsy and go from there.”
It was in an early enough stage that nothing showed up on my imaging. I went through the second colonoscopy a couple of weeks later. They did another biopsy, and that biopsy came back clearly as cancerous.
Getting the diagnosis
I don’t think I’ll ever forget it. It was a Friday. My husband, 1-year-old daughter, and I were visiting my parents for the weekend. My husband is a big white water kayaker, so he had just taken off from my parents’ for the next night of racing.
They don’t have cell phone reception at their house, so I wasn’t aware, but my surgeon had been trying to reach me all day. I didn’t receive the call until about 8:00 that night.
For whatever reason, my cell phone finally showed I had a voicemail, and it was from my surgeon. I knew in his voice, even though he didn’t say that the results had come back. He left his cell phone number for me. I called him from my parent’s landline at about 8:30, and he got the message and called me back about 9:00.
We had this brief conversation where he told me the biopsy had come back as colon cancer, and I’ll never forget. He said to me, “Shannon, I will always be honest with you throughout this whole process, and what I do know is that we can fix this. We have steps to take to get there, but we will fix this.”
I cried and told him that I trusted him and was happy that he was my surgeon. We left it at that. We agreed to talk about next steps on Monday.
My dad had already gone to sleep. My daughter, Hazel, was asleep. My mom was in the kitchen, listening to my end of the phone call, when it came through. She knew.
Looking back, I was still in shock, but I never realized what that must have felt like for her. It’s probably harder than most of us realize to find out your 36-year-old daughter has just been diagnosed with cancer.
I called my husband, who was about 4 hours away, right after my surgeon and I hung up. He got back into his car and rushed to my parents’ [house]. I can laugh at this story now, but he got pulled over by a police officer on his way home for speeding.
He looked the officer in the eye and said, “My wife was just diagnosed with cancer.” The police officer said, “I’m so sorry. Drive safe, and have a good night. I wish you the best.”
We went back to Vermont the next day to process everything.
That has been a huge piece of my recovery. I was diagnosed. I don’t know if it was just shock. I don’t know if it was partially denial. Maybe it was me trying to minimize the situation, but we told our immediate family and a few really close friends, but it wasn’t something that I broadcast. I wasn’t ashamed.
It just felt so surreal because I was so healthy. How do you go from, “Hey, what did you do this weekend?” to “Hey, I was diagnosed with cancer”?
I wish I had broadcast it more. What I know now is that people want to support you, people want to help you, and you need it. You need that support.
I think one of the silver linings in this whole thing is connecting with others. It’s this raw level. I’ve been really lucky to be able to do that in the last 2 years since my colon cancer, but it’s not something that I did during the process.
How did you emotionally process the diagnosis?
It’s all a little blurry. That is how you deal with it in some ways. I don’t really remember our drive home. I don’t even remember what we did for the next couple of days. I must have been in shock, because I don’t remember what it was like.
I know we went in and met with my surgeon that next week to discuss the next steps. There were always next steps. There was always more testing. There was never really a stagnant period when we weren’t doing anything. Maybe that helped.
The worst part is the preparation for it. Once you get through that, it’s pretty easy.
The day before, as you’re prepping for a colonoscopy, you are fasting and just on clear liquids. I do a lot of chicken broth, popsicles, clear sodas, and hydrate all day.
That evening, you start your preparation and drink a lot of different solutions that clear out your system. Up until about 11 p.m., you’re having a lot of bowel movements and some cramping. Your body is clearing out your colon so that the next day, when you go in, you’re ready for your scope.
I usually try to schedule my colonoscopies as early as I can in the morning because that way, you’re not having to fast the entire next day, too.
Describe the colonoscopy
When you get to the hospital, they put an IV in and hang some solutions. Once you get into the procedure room, you can decide if you want medication that makes you sleepy and unaware of what’s going on. Once you’re in there, the procedure of the scope usually only takes about 45 minutes.
You lay down on your left side, and everything they do is very gentle. There is only minor discomfort, like a gas cramp. Usually you can put a little bit of pressure on your stomach to help relieve that.
Usually with the medications, you are kind of aware of what’s going on but really don’t have any discomfort. If you do, it’s a small cramp, kind of like a gas cramp.
The use of the scope just takes a turn through your intestines. They back out and take another look as the scope is exiting your colon to make sure they didn’t miss anything.
After that, you’re brought out to the recovery room, and about an hour or so later, you’re putting on your clothes and heading home.
How long does it take to get results back after a colonoscopy?
About a week for the biopsy to come back. If they don’t decide to biopsy any polyps, then you know the same day if things look clear.
It’s either immediate, or they decide to take a biopsy of the polyp they removed. In that case, it’s generally 1 or 2 weeks for those results.
It’s always difficult when you suspect something might be wrong. When I was brought back to meet with my surgeon in his office after the first biopsy was done, he said, “We’ve got another curve ball. It came back as inflammation.”
That was hard to think about later because it had given me a little bit of hope that everything was okay when it really wasn’t.
I was lucky to be working with a team that was familiar with the risks of Lynch syndrome and understood that I have up to an 80% chance of developing colon cancer.
It wasn’t taken lightly. I didn’t have to push for anything when that came back as inflammation. He already knew it was cancer. He said, “Shannon, you can either take out part of your colon now and schedule that procedure, or we can do more imaging and another biopsy.”
That was more anxiety-ridden than the colonoscopy. You’re put on a table and very slowly moved into a circular magnetic machine.
Lots of imaging takes place, and that procedure lasts about 30 minutes. I felt like I was in a tomb. It ended up being okay. The nurses checked on me in between the images to make sure that I was okay.
I had that test done and then came back shortly for the second colonoscopy. The results for that took about a week.
Describe the endoscopy
The endoscopy is an upper scope. It was done the same day as my second colonoscopy, so I didn’t have to fast twice.
They go down with a tube in your throat all the way to your small intestine and stomach. That took about 20 minutes, and I was heavily sedated for that. I didn’t have anesthetic spray; it was all IV push medications.
I know I had some Lorazepam for anxiety. They were ruling out any other cancers in my small intestines or stomach. It took about 2 weeks for those results.
Did you have any other testing done?
I also had a chest X-ray done — that was the last test before surgery — after the endoscopy. It was to check my upper chest to make sure there was no spread to my lungs.
Treatment Decisions
What was the biggest decision you had to make?
I have had a good relationship with my surgeon because he had been doing my colonoscopies for years prior to the diagnosis. There was some comfort in that. This wasn’t our first episode together.
Some of the decisions that I had to make were more around my Lynch syndrome. The gold standard if you have colon cancer as a Lynch syndrome patient is to take out the entire colon because that obviously cuts down your risk of having colon cancer again.
That was really one of the biggest decisions with my surgeon: how much colon do we take?
We weighed the pros and cons. That was a decision we made together with my husband. My surgeon always offered for me to have a second opinion, but it wasn’t something that I felt like I needed to do.
As a nurse, I always recommend people get a second opinion. In my case, though, I went with my gut and my heart, and I felt like he was the right surgeon for me.
Did you ask your surgeon about his experience with similar cases?
We certainly did. We talked about his experience with other Lynch syndrome patients, how many surgeries he’d done like this, the different types of surgeries he’d done to remove colon cancer, how many years he’d been in practice, and the fact that he works at a teaching hospital — all of those things.
Do you have any advice for patients about deciding where to receive care?
Smaller, rural hospitals have an absolutely amazing place in the health care system and are needed, but when you’re dealing with something that’s complicated, going to a bigger hospital or getting that second opinion would be worth it.
The main consideration, though, is whether or not you feel comfortable. You should feel good about your medical provider.
If there’s an inkling doubt inside of you that something that doesn’t feel right, you’re not being listened to, or your opinions don’t seem to matter, go seek other treatment teams.
You know your body, and you know how to listen to it. It’s important to be heard.
Was there anything unique about your medical team?
I have a naturopath who is certified in oncology and acts as an amazing addition to the traditional treatment team. She helped in treating side effects, prepping for surgery, and helped take care of you after.
She’s someone I still work with in combination with all the other normal screening and treatments.
Lynch Syndrome
When did you find out you had Lynch syndrome?
Most of the males on my dad’s side of the family have died at a really early age. My grandfather died of colon cancer and when my dad was in his mid 40s. He followed the same trend and was diagnosed with colon cancer.
This was long before genetic testing had become such a big deal. He had colon cancer, and luckily it was diagnosed early. He had part of his colon removed, but then about 10 years later, he had colon cancer again, totally unrelated to the first diagnosis.
Still, no one had suggested genetic testing. He went on to later have prostate cancer and finally stage 4 kidney cancer, but he’s still alive. He’s amazing!
It wasn’t until the fourth battle with cancer that my good friend from high school was finishing a degree in genetic counseling. He said, “Shannon, your family has to get testing. This isn’t normal.”
There was a piece of me that just didn’t want to know.
Eventually, I talked to my dad, and he very willingly went in and had genetic testing done. It was just blood work, but they ran all sorts of tests on his DNA.
It came back that he in fact had Lynch syndrome. If you have it, you have a 50% chance of passing it on to your offspring. I got tested and found out I had it, too.
That was about 10 years ago. As of right now, it’s pretty rare to know you have Lynch syndrome, even though the estimates suggest 1 in 279 have it. It’s not rare, but it’s very under-diagnosed.
I feel really fortunate. I didn’t at the time I was diagnosed, but that knowledge I received was absolute power and to this day probably saved my life.
Had I not known I had Lynch syndrome, I wouldn’t have received that colonoscopy until I had symptoms. At that point, it probably would have been a pretty late stage diagnosis of colon cancer.
Does Lynch syndrome put you at a higher risk for cancers other than colon cancer?
I’m also at high risk for uterine and ovarian cancers. I do routine testing for those as well. My colorectal surgeon strongly encouraged me to go have my testing for those done, even though it was early. They wanted to know if there were any other concerns before they opened me up.
I met with my gynecologist, and I had thickening around my uterine lining show up on the ultrasound. That resulted in a biopsy of my uterus.
Those results took another week, and that was really hard. I already knew I had colon cancer, so going from a healthy, fulfilling life to the reality that I might be dealing with 2cancers was scary.
There are a couple of different types of Lynch syndromes. Mine has the biggest risks of colon cancer, uterine cancer, ovarian cancer, small intestine, and a slight chance for brain tumors and urinary tract cancers.
How did you adapt after you were diagnosed?
The recommendation is a colonoscopy every year and an endoscopy every 1 to 3 years. I do a uterine ultrasound every 6 months and a uterine biopsy about every year.
That ultrasound also looks at my ovaries. I also do a urine cytology once a year just to make sure there’s no abnormal cells growing in my urine.
Surgery & Recovery
Preparing for surgery
Most of the testing procedures were done during my diagnosis stage. Other than having some of the female organs checked out after I was diagnosed with colon cancer, pretty much everything had been done at that point.
I was scheduled for surgery almost exactly a month after my diagnosis. Unfortunately, I had a stomach bug right before I was supposed to have surgery. It was postponed for a week, and then I went in.
My pre-surgery looked almost identical to my colonoscopy preparation. I did the normal colonoscopy prep, but in addition to that, I took a bunch of medications prophylactically.
They had me on a couple of different antibiotics before surgery. There was a vitamin mixture. I was on a nerve medication to try and prepare for surgery and nerve pain.
What happened on the morning of your surgery?
I got there really early in the morning. First, a couple of IVs were placed. Some fluids were hung. They did a spinal block on me prior to surgery in hopes that it would put me ahead of the pain game after surgery.
My surgeon poked his head in a few times to check on me. There were some urine tests and another antibiotic hung in my IV. I was anxious, but I was there with my husband.
Eventually, after what felt like forever even though it was only a few hours, I went into surgery. I very clearly remember being wheeled back into the OR and suddenly feeling really emotional about things.
What’s a spinal block?
I have never had an epidural, but from my understanding, it’s pretty similar. They put a needle in my back and put in a pain medication. That procedure probably took them about 20 to 25 minutes to do.
They used a little bit of numbing agent before they went in with the needle. It was a little painful and uncomfortable but not unbearable by any means. It felt like there was a lot of bleeding before surgery.
Were you nervous before surgery?
When you go into surgery, it’s bright and cold, and it all hits you. There were a lot of people in the OR, and the anesthesiologist was telling me the plan and realized I was anxious.
I got a little bit of Lorazepam to make me feel more at ease. I could see my surgeon come in across the room, and I looked over at him and said, “You’ve got this. I know you’ve got this.”
He came over, and he took my hand and said, “We’ve got this. We’ve got you.” At that point, I got anxious. I shed a tear or two, and that’s all I remember until after surgery.
I tried to do a lot of preparation because I knew that that moment was going to be difficult, and I wanted to do everything in my power to go into that OR feeling confident and relaxed.
I remember I did some visualizations of going into the OR and having all of these people who had my best interests in their hands helping me. I knew there would be a guiding light and that it was all going to be okay.
Can you describe what the surgery entailed?
My surgeon felt confident enough to give me the option of doing open surgery, where they would use a big incision to cut open my intestinal area, or go in laparoscopically.
Going in laparoscopically was supposed to be a better option for me because it would make further surgeries easier. That’s what we decided on. They went in and used 5 little incision marks in my abdominal area.
They filled me up with air so they could get their instruments in to do everything they needed to. I had about 3/4s of my colon removed, and they used a little incision around my belly button to remove that.
Then they stitched me back up in the 5 different spots. There was a little cut on my liver they had to suture, but luckily that was not a big deal, and that was the end.
How did the staging happen?
They were not able to stage it until after they had taken a bunch of lymph nodes during surgery.
They biopsied those while I was recovering in the hospital, and I found out it had not spread to my lymph nodes. They diagnosed me as stage 1 colon cancer. That biopsy only took about 48 hours.
How did it feel to know you were stage 1?
Even though I was blurry on pain medication at the time and feeling bad after surgery, I felt like a weight had been lifted off my shoulders.
That news meant that I likely would not need chemotherapy or radiation. That felt like a huge gift had been given to me. My surgeon said, “This is really good news, Shannon. This is really good news.”
How was surgery recovery?
The spinal block didn’t really work, so I woke up frantically as they were wheeling me out of surgery in what felt like pretty uncontrollable pain. It was really uncomfortable in my stomach, and the gas that they had filled my belly up with had this radiating pain all over my shoulders and neck.
I was incredibly uncomfortable. I was receiving quite a bit of pain medication that made me really nauseous. We did eventually get my pain better controlled, and I was wheeled up to the surgery floor, which is where the nurses took over through my recovery.
Do you have any advice about surgery recovery?
I went in with certain expectations. I expected that even though I might be weak and recovering, I’d be home with my daughter.
Try not to have expectations. Try and go into this knowing there might be a few curve balls. Put all of your positive vibes and energy into the fact that it’s going to go well, but be ready to accept that things might change.
Things might be a little bit different than you were told, and unfortunately, we have no choice but to accept that.
Did you have any follow-up scans?
I had a lot of scans while I was in the hospital after surgery because they were concerned that something was going on.
I had 2 MRIs while I was still in the hospital. I saw my surgeon a lot in the hospital. I saw him the week after I had finally been discharged. Then I was seeing him about every 2 weeks to run blood work and have him check my abdomen.
Once I didn’t have symptoms from the post-surgery fluid, I was meeting with him once every 3 months.
At the 1-year mark, I had more imaging done. I was having blood work done to look at my colon markers every 3 months.
That all stayed the same until the 2-year mark, then it switched to blood work every 6 months. At year 3, I’ll be going back to a colonoscopy each year and blood work.
Long-term recovery after major surgery
It took me about 6 weeks to feel like I had as much strength as I wanted to for short hikes, to lift up my 1-year-old daughter, and to return to work part-time.
It took closer to 6 months to really start feeling like myself again. I was having abdominal pain [and] nerve pain from surgery for a while.
I’d like to say my bowels have regulated, but I think they’ll always be a little bit off when you’re dealing with less colon than most people.
I went from someone who had a normal bowel movement once every day. After surgery, I was having 5 to 10 loose stools per day
Around 6 months, that started to even out a little more to 2 or 3 times a day. I had full control thankfully, but certainly with a little more urgency when I do have to go.
My naturopath has really helped me with recovery. She’s really made a big difference. She helped me to get on some probiotics, natural anti-inflammatory medications, and fish oil, a couple different things that have seemed to really make a difference for my system. Now, unless I eat foods that are upsetting to me, I’m having 1 or 2 bowel movements a day.
Was there anything particularly hard about being a mom with a young child after surgery?
I came out of surgery needing nurses to find me a breast pump from the maternity floor, so I could try to pump breast milk because I was engorged. It was one of the biggest challenges that I faced.
It was extremely challenging to have all these fears with a recent cancer diagnosis when you just gave birth a year ago to a little human who has become your world.
The physical aspect of still breastfeeding and having to figure out how to pump at the hospital was so hard. Figuring out who’s going to be helping take care of your child when you have 2 weeks of unexpected hospital stays is really challenging.
Support & Survivorship
Did you have to rely on outside help with child care?
My husband and I are really lucky to both have wonderful families. Even though they’re not local, they’re both within about 3 hours. There was a lot of coordinated care when I was in the hospital.
My husband was spending really long days with me there, running home to relieve one of our parents, and trying to create some normalcy for our child. Thank goodness our parents were willing to help, and my husband, Matt, was just a hero when it came to juggling everything.
Any advice to parents who are going through cancer treatment?
Ask for every piece of advice and resources that the hospital can give you.
It’s so overwhelming to receive a cancer diagnosis; it feels like your world just stops. It’s easy to overlook the fact that there might be resources to help with childcare, support, and counseling that we might not be aware of. Be open to connecting with other people.
One of the biggest pieces of this cancer journey has been allowing myself to connect with other young people who have had cancer. For me, that meant attending some different cancer workshops, weekends of hope, and informative conferences about Lynch syndrome.
I went to women’s health and cancer conferences. I got involved in a young survivor group in a nearby city, and that has been such a huge piece of my healing. I don’t think you ever want to normalize cancer, but when you’re diagnosed, I know I felt like I was alone.
There’s so many other people who have been through something so similar to what I have been through, and connecting with them has made me feel like it’s going to be okay.
Other people have gotten through this, and I will continue to get better. On the days I feel like I can’t get through it, there’s others there that I can lean on to support me. When I am feeling really strong, then I can support them.
That is part of this beautiful picture. We are all in this together.
In the last year, I started an Instagram page with the sole purpose of trying to connect with other young cancer survivors, especially people my age with Lynch syndrome. Instagram and social media have been a really amazing platform for me.
Ironically, it’s made me feel like I’m able to live a more authentic, honest life. It’s given me an outlet and a way to hopefully help support some other people.
How did cancer affect your relationship with your husband?
It brought out some of the best in us, and it brought out some of the worst in us as well. When you go through a cancer diagnosis, all of a sudden, you have these emotional needs that you didn’t know existed.
Your partner doesn’t necessarily know what they look like. In a moment, life has changed, and your partner is dealing with this new fear and diagnosis just as much as you are.
For us, there were a lot of stressful times. The first year of cancer allowed my husband and I to realize where our weaknesses in our relationship were.
We realized how much communication we both needed. The positive is that it really allowed us to grow and to continue to do so, because Lynch syndrome is a lifelong thing for me.
Once I finally reached the healing process of cancer, we were able to take an honest look and say, “Okay, we want to be there for each other more, and these are the ways that we need to grow to do so.”
We’re all different, but what helps me is to remind myself every once in a while that we both have the best of intentions. Our goals are the same.
We want to be there for and comfort and support each other. Some days it comes out just perfectly, and other days, for whatever reason, it doesn’t. At the end of the day, we both love each other, and we both support each other.
What was the worst part of all of this for you mentally and emotionally?
The worst part for me was having Lynch syndrome. I always knew that there was probably a good chance that at some point in my life, I would have cancer. I did not expect to have cancer at 36.
The hardest thing was thinking, “Wow, I’m getting this first cancer diagnosis at 36. What does that mean for the rest of my life?” That took me a while to process.
It’s an ongoing process, and it probably will be the rest of my life. What I try to remind myself every day is that I’m living a full life, and I love my life.
I have to trust that even if I do get another cancer diagnosis, it’s going to be okay. We’re going to work through that as well.
There’s a huge silver lining when you have been diagnosed with cancer or are living with Lynch syndrome. You don’t take a day for granted. It puts a whole new spin and perspective on your life.
Suddenly, some of the things that used to be a big deal aren’t anymore. What you really want and things that really matter have this way of becoming so clear.
Fertility: you had to consider the possibility of a hysterectomy
I’ve had a lot of conversations with my husband about timing. It’s going to happen at some point; it’s important to talk about. We feel really happy to have this one seemingly healthy, wonderful child, so we’re done having children.
The second piece of the puzzle is weighing the benefit-to-risk ratio of being so young and having a full hysterectomy. We have to consider what going through menopause looks like long-term for my health.
We revisit those conversations when I need to talk about them during my appointments. For now, as long as everything looks okay, I have decided with her recommendations to wait closer until I’m 40.
What is your advice on being a self-advocate?
Self-advocacy is so important. As a nurse and someone who’s connected with a lot of young people who have had cancer, I see young people having symptoms that aren’t normal, but they’re being ignored by doctors.
Listening to your body is so important. You know it best.
When you know that something’s not right, it’s been more than 2 weeks, and you’re having the same symptoms, advocate for yourself until you feel like the right tests have been run.
Was there any financial stress from the treatment?
I was really lucky because we have a really good insurance that covered almost all of our costs. The challenge came when I wasn’t working and wasn’t covered. That put some financial stresses on us. We focused on what needed to happen for me, and we went through it and worried about the rest later.
I wish I had met with a social worker, who could have better explained all the financial stuff to me, since I didn’t have the time to look into that myself.
Do you have a message you would like other patients to hear?
Getting a cancer diagnosis can be overwhelming, scary, and anxious. You can feel like your world is caving in after one phone call.
What I would like you to know is that you are not alone. There are other people that are dealing with all the things that you are.
You are going to get through this. You’re resilient. You’re strong. Rely on other people. When you can’t take one day a time, take one minute at a time, because it will add up. You can get through this.
Thank you for sharing your story with us, Shannon!
