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Kyle’s Journey as a Lung Cancer Care Partner

Kyle’s Journey as a Care Partner Through Love and Loss

Jenny Appleford was a beloved YouTube creator who bravely shared her stage 4 lung cancer journey with the world – not just to raise awareness, but to help others feel less alone. Diagnosed at just 33 with no history of smoking, she used her platform to document everything from treatment updates to quiet family moments, offering a powerful glimpse into life with terminal illness. Her honesty, faith, and fierce love for her family inspired thousands.

In 2023, Jenny passed away – but her voice lives on, not only through her videos, but through her husband, Kyle. In this deeply personal interview, Kyle opens up about what it was like to care for Jenny through her illness, the heartbreak of losing her, and the challenges of navigating parenthood and grief without her by his side. He shares how he’s finding strength, honoring Jenny’s legacy, and learning to live again – one moment at a time.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

Jenny was diagnosed with non-small cell lung cancer at 33, despite having no history of smoking. Initially, she was diagnosed with stage 3A but even after different treatments that gave her a good quality of life, they found metastases in her brain. She was later diagnosed with stage 4 lung cancer.

Losing Jenny was an experience filled with unimaginable heartbreak, quiet strength, and enduring love. As her husband and care partner, Kyle tried to remain strong for her and their two young kids, even when inside he was falling apart. In her final days, although confused at times due to the brain metastases, Jenny never stopped being Jenny — full of love, faith, and resilience. She was positive until the very end, always reminding them that she never gave up and that she loved her family deeply.

After Jenny passed, the grief was overwhelming. Kyle had to find a way to balance his pain while supporting their children through theirs. The house was quieter, lonelier, and full of memories, but the responsibilities of being a single parent didn’t stop. He leaned heavily on family and friends, and slowly, found moments of healing.

Jenny and Kyle Appleford

Grief isn’t linear. Some days, Kyle felt numb; other days, he felt too happy and guilty for it. Therapy, community support, faith, and exercise helped him start to move from just surviving to living again. He misses everything about Jenny — her voice, her parenting, her presence — but he’s learned that it’s okay to grieve at your own pace.

Parenting without Jenny is the hardest. Kyle can’t lean over and laugh with her about what the kids just said or ask her advice in the moment. But he still talks to her, and sometimes, he feels like she answers. Kyle tries to be the best parent he can be, not to replace her but to honor her.

Jenny’s legacy lives on in the way Kyle parents, in the milestones he celebrates with their kids, and in the love she left behind. She was selfless, even in her final days — writing letters for future birthdays and life moments for their kids. Her strength, kindness, and fight to the end left an imprint on everyone she met. She wanted people to enjoy the moment, to fight for more lung cancer research, and to share their stories to help others feel less alone. And that’s exactly what Kyle and their kids are doing.

Watch Kyle’s full interview to hear the raw, emotional story behind these moments:

  • Hear how Jenny’s final act of love included writing letters for her children’s future birthdays, weddings, and milestones.
  • Learn what it was like to sit bedside in the final days, holding on to every breath and every second together.
  • Discover why grief isn’t a straight path and why feeling “too happy” or “too sad” is part of healing.
  • See how parenting without Jenny has been both heartbreaking and beautiful, with conversations that still include her voice.
  • Find out how Jenny’s legacy continues through advocacy, everyday moments, and the promise to never let her be forgotten.

  • Name:
    • Jenny Appleford
  • Age at Diagnosis:
    • 33
  • Diagnosis:
    • Non-Small Cell Lung Cancer (NSCLC)
  • Staging:
    • Stage 4
  • Symptoms:
    • Rib pain
    • Shortness of breath
  • Treatments:
    • Chemotherapy
    • Radiation therapy
Jenny Appleford
Jenny and Kyle Appleford
Jenny and Kyle Appleford
Jenny and Kyle Appleford
Jenny and Kyle Appleford
Jenny and Kyle Appleford
Jenny and Kyle Appleford

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

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.


Jenny and Kyle Appleford
Thank you for sharing your story, Kyle!

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What Does Crohn’s Disease Look Like? Kristin: Body Positivity!

Kristen Opens Up About Crohn’s Disease, Her Ostomy, and Owning Her Story

Kristen was diagnosed with Crohn’s disease at just 12 years old. For anyone wondering what does Crohn’s disease look like, her story offers a vivid picture. Living with this chronic illness so young meant navigating growing pains and medical challenges simultaneously. She talks about how her world shifted from being a sports-loving, active kid to someone grappling with daily pain, blood in her stool, and emotional isolation. Her story is a heartfelt reminder that chronic illness changes more than your body — it affects how you relate to the world.

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Throughout her teenage years, Kristen faced mounting symptoms and emotional struggles. By high school, her condition had worsened significantly. She bounced between treatments and doctors, often feeling let down. When she was in college, everything changed during an appointment when a doctor told her she needed an ostomy.

With her health deteriorating, Kristen agreed. That surgery, though overwhelming and unknown to her at the time, saved her life. She had no prior education about ostomy care and struggled initially, but she and her mom figured it out together.

Kristen F. Crohn's disease

Kristen is honest about the mental health toll of chronic illness, including medical PTSD and anxiety. She didn’t always advocate for herself, but she learned how to speak up. That shift empowered her. She realized that her voice mattered, especially when navigating multiple surgeries, including a total colectomy that made her ostomy permanent. While that decision was emotionally heavy, especially after being told it would be temporary, she eventually accepted it as necessary for her well-being.

Instead of letting shame or misinformation define her, Kristen started sharing her story online to educate and empower others. She uses Instagram as a blog, breaking stigmas around ostomy bags and showing the reality of life with one. She answers common questions about intimacy, product use, and body image. Kristen keeps it real but is always supportive, encouraging others to ask questions and never feel ashamed.

Body positivity plays a huge role in Kristen’s story. She’s chosen to love and appreciate her body for all it has endured. Even with an ostomy, she’s traveled the world, held full-time jobs, enjoys paddleboarding and rollerblading, and continues to thrive. She’s all about hope, mental health awareness, and creating inclusive spaces for people with invisible illnesses. Her message is clear: don’t be afraid to advocate for yourself, embrace your body, and know that even in the hardest moments, you’re not alone.

Watch Kristen’s video to find out more about her story:

  • What products she swears by for stoma care, and which ones she skips.
  • Her reaction when she found out that her ostomy, which she was initially told would be temporary, was going to be permanent.
  • What does Crohn’s disease look like and life with an ostomy, and how she lives fully and freely.
  • From hospital anxiety to medical PTSD, how Kristen’s mental health was impacted and how she’s healing.
  • How a single doctor changed Kristen’s entire life trajectory.

  • Name: Kristen F.
  • Age at Diagnosis:
    • 12
  • Diagnosis:
    • Crohn’s Disease
  • Symptoms:
    • Fatigue
    • Abdominal cramps
    • Blood in stool
    • Loss of appetite
    • Frequent, painful bathroom visits
    • Perianal disease (open wound)
    • Mouth sores
    • Joint pain
  • Treatments:
    • Multiple medications
    • Surgeries: Temporary ostomy, total colectomy (permanent ostomy), Barbie butt surgery (proctectomy)
Kristen F. Crohn's disease
Kristen F. Crohn's disease
Kristen F. Crohn's disease
Kristen F. Crohn's disease
Kristen F. Crohn's disease
Kristen F. Crohn's disease
Kristen F. Crohn's disease

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

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.


Kristen F. Crohn's disease
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Blood Tests Medical Tests Patient Events

Blood Work Basics: Making Sense of Your Test Results

Blood Work Basics: Making Sense of Your Test Results

What do your cancer blood test results really mean and how do they help doctors detect or monitor cancer?

Join hematopathologist Dr. Kamran Mirza and cancer advocate Stephanie Chuang to break down the most common diagnostic cancer blood tests, including the CBC (complete blood count) and the CMP (comprehensive metabolic panel). Learn how pathologists interpret results, what those ranges mean, and how small changes in your numbers can offer big insights into your health.

Blood Work Basics: Making Sense of Your Test Results
Hosted by The Patient Story
What do your blood test results really mean — and how do they help doctors detect or monitor cancer? Learn about the most common diagnostic tests, including the CBC and the CMP.
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Find out more about:

Why doctors order cancer blood tests: What they’re looking for and how to prepare.

Making sense of the CBC: Understand what each number represents — and what it doesn’t.

How blood results guide treatment: From diagnosis to tracking remission or recurrence.

Whether or not you should be worried: When out-of-range numbers matter and when they don’t.

What’s next in the series: Learn how this session leads into condition-specific follow-ups for six different blood cancers.


Blood Cancer United partnership logo

We would like to thank Blood Cancer United for their partnership. They offer free resources, like their Information Specialists, who are one free call away for support in different areas of blood cancer.

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


Edited by: Katrina Villareal


Introduction

Stephanie Chuang: Hi, everyone! Blood Work Basics is part one of a multi-episode program designed to empower you with the information you need for your next blood work appointment. While the other episodes will be about specific blood cancers, this episode is more focused on the initial tests that you may deal with as you try to get a diagnosis or following your initial treatment.

I’m the founder of The Patient Story. I have gone through a myriad of blood tests, poked and prodded constantly, when I was getting diagnosed, which ultimately would be a non-Hodgkin lymphoma, diffuse large B-cell lymphoma, and all through treatment.

I remember having to wait to get my blood drawn. First, it was through my veins; then I got my PICC line and a port. They needed to make sure that my white blood cell counts were okay for me to be able to withstand the next round of chemotherapy. Each round of chemo lasted for about six days at the time, which was definitely not short or easy.

During that time, I started imagining what would eventually become The Patient Story. I felt so lost. There were so many things that I wanted to know the answers to, but I wanted to know them in a humanized way — don’t give me the medical jargon. That’s what The Patient Story focuses on.

We help curate humanized information to help you navigate life at and after diagnosis. We do this through in-depth patient stories, educational programs, and discussions to amplify the voices and concerns of patients and care partners.

Stephanie Chuang
Dr. Kamran Mirza

I want to give a shout-out to our friends at The Leukemia & Lymphoma Society. They have so many fantastic resources, including their Information Specialists, who can help talk about things like blood tests if you need.

While we hope that this discussion is helpful for you, keep in mind that this is not a substitute for medical advice, so please consult with your team about your decisions. Hopefully, you’ll have some questions from this discussion that you can ask.

I’m excited to introduce someone I now consider a friend whom I met as a patient advocate: Dr. Kamran Mirza, the Godfrey Stobbe Professor of Pathology Education, Professor of Hematopathology, and Assistant Chair for Education at the University of Michigan.

Dr. Mirza also shares medical insights online to help people like us, patients and care partners, understand the science of diagnosis. You may know him from social media as @kampathdoc. Dr. Mirza, welcome again. It’s so good to see you.

Dr. Kamran Mirza: It’s always a pleasure to see you. Thank you very much for having me, Stephanie.

Blood Work Basics - Dr. Kamran Mirza

What Does a Pathologist Do?

Stephanie: Dr. Mirza, before we kick off this discussion, we want to humanize the word pathology. A lot of patients, their families, and friends may not see a pathologist during their experience at the hospital or at a clinic. Can you break down what a pathologist does?

Dr. Mirza: I always say to my patients that the pathologist is the doctor you never see or usually don’t see 99% of the time. A pathologist is a physician. They work in the medical laboratory, where all of the human body tissues and fluids go for any type of diagnostic work.

Whenever your physician orders any kind of testing, which could be blood tests, urine tests, or other types of tests like biopsies, they always come to a physician behind the scenes who is a pathologist. The work we do is pathology.

Blood Work Basics - Dr. Kamran Mirza

Like other parts of medicine that you might all be aware of, pathology is also subspecialized. I’m a specialist in blood pathology. My diagnostic area is leukemia, lymphoma, anemia, etc. Similarly, I have colleagues in pathology who deal with disorders of the brain or disorders of the liver, etc. Every part of medicine has a pathologist associated with it. We are physicians who will provide the diagnosis, which is what your patient-facing provider uses in order to treat you.

Stephanie: Thank you. I know there are a lot of things that you do as a pathologist and I’ve learned a lot from that already.

Blood Work Basics - Dr. Kamran Mirza

Initial Testing Before a Diagnosis

Stephanie: When we’re talking about blood cancer and the reason why pathologists are so focused on different blood tests at different times, could you give a generalized overview? If someone has a suspected diagnosis, what is the usual testing done at the very beginning, before people know exactly what they have?

Dr. Mirza: Whenever you present to a doctor, whether it’s a well visit or an urgent care visit, doctors are trying to piece together from your clinical history. They ask about how you’re feeling, how long you’ve been feeling this way, and your family’s health. They’re trying to ascertain whether these symptoms are short-term, long-term, from an ominous cause, or a more benign cause.

When you give a sample of blood, that is a snapshot of your internal health.

Once they’ve established in their mind what path they’re going down, they need to have some backing from diagnostic testing in order to clarify what it is. Typically, diagnostic tests include radiology, which is a visual imaging of the body. If they’re worried that there might be a mass lesion, they may send patients for X-rays or CT scans. The radiologists take a look at a particular part of the body and give you a report.

Similarly, the diagnostic laboratory is the pathology part. What we can provide you in the simplest way is a blood test. When you give a sample of blood, that is a snapshot of your internal health. Your blood can tell you so many things. Because we’re talking about blood cancers, it’s one of the simplest ways for your physician to find out if something is wrong in your blood or in the factory where all of the cells of the blood are made, which is the bone marrow.

Blood Work Basics - Dr. Kamran Mirza

All of us have bone marrow, which is the factory producing all of the cells. It’s inside our long bones, so it’s in the bones of our arms, our legs, and the pelvis. All of these bones are producing marrow, which is going to make all the cells in the blood.

A very simple way to figure out if the factory is working is to take a snapshot of the blood. In the blood, you have different types of cells. You can look at their numbers. Are they going up or down? There are a variety of other things that we can pick up from the blood as well. It can tell you things, whether it seems like an infection or cancer, or if everything seems okay.

All physicians need the next step of diagnostics to move things ahead. Whether it’s radiology or pathology, that’s where you will end up if you’re presenting symptoms to your physician.

Stephanie: Thank you for walking us through that. The stage we’re talking about is a period that’s very hard for people. It’s hard to wait because there are a lot of questions and uncertainty, and there’s no plan of action yet.

Blood Work Basics - Dr. Kamran Mirza

What is a Complete Blood Count (CBC) Test?

Stephanie: In the initial stage, one of the most commonly ordered tests is the CBC or complete blood count. I was diagnosed with non-Hodgkin lymphoma, but I don’t know if any numbers were flagged in my CBC results. What is the CBC? What is it looking for? Can go down each blood cancer area and what the focus may be for pathologists?

Dr. Mirza: The CBC is the complete blood count. There are three different aspects of the CBC that you can start thinking about, which go back to what the blood does.

Our blood carries oxygen. That oxygen is the oxygen we inhale into our lungs and the red blood cells in our lungs pick up all of that oxygen.

If you don’t have enough red blood cells, that might be anemia, for example. Associated with red blood cells is your level of hemoglobin, which is your oxygen-carrying protein. The RBC or the red blood cell count, the hemoglobin, and the hematocrit are used to look for your red blood cell component. Numbers going up or down may indicate that something is wrong with your red blood cells.

Blood Work Basics - Dr. Kamran Mirza

Another thing that your blood does is fight off infections, which are fought off by a variety of cells known as your white blood cells. You have different types of white blood cells. Your white blood cell count is an indicator of inflammation, infection, and a variety of things. The numbers going up or down can also indicate what may be happening to you as a patient.

Blood Work Basics - Dr. Kamran Mirza

The last number that you look for is the platelet count. Platelets are tiny fragments of cells that are floating around. Typically, these are in high numbers. Platelets help you clot or stop bleeding anytime bleeding occurs. For example, when a person who has a normal, healthy bone marrow has a small cut on a finger, that cut clots pretty quickly because the platelets are doing their job and the bleeding will stop. Similarly, you could have internal bleeding and not even know, but normal platelet counts and normal platelet function take care of all of that for you.

The CBC has a variety of numbers on it, but primarily, it’s looking for these three aspects of your bone marrow that produce cells and come out into the blood. It’s a snapshot of how those three things are performing.

What Happens if Your Blood Counts are Abnormal?

Stephanie: I love that you put it into these buckets for people to understand: red blood cell count, white blood cell count, and platelet count, and their different functions. This is not about any specific case but a generalized conversation. As a pathologist, can we go into each area? Let’s say there is an abnormal red blood count, white blood count, or platelet count. What might that generally indicate? How would you suggest further testing, or what are the next steps for the patient?

Dr. Mirza: If white blood cell counts go up, typically the most common reason will be an infection. This can be either a viral infection or a bacterial infection. When you look at the white blood cell count, it may also be associated with a differential count.

Typically, if a patient has a bacterial infection, neutrophils go up. If they have a viral infection, lymphocytes may go up.

A white blood cell count gives you the total number of cells, but that number won’t tell you what the cells are, so we need to figure them out. Either machines or human beings, who are medical laboratory professionals, look at the blood and then count how many different types of white blood cells there are.

There are different types of cells: neutrophils, lymphocytes, and monocytes. These are the words that you would potentially be coming across if you see a differential count. Depending on what is going up, you may have an idea of what it might be. Typically, if a patient has a bacterial infection, neutrophils go up. If they have a viral infection, lymphocytes may go up.

But then, abnormal cells might start showing up in the blood as well and the differential count might flag abnormal cells. These are what we typically call immature cells and by immature, we mean that they came out of the bone marrow too soon. They needed to cook in the bone marrow a little bit longer, but they didn’t and came out.

Now, having immature cells come out can also be part of an infection. It can be normally seen in an infection, but depending on how the patient is presenting, it could be something more ominous or even be part of leukemia, which is a cancer of the blood.

If the blood cancer is just presenting in the lymph nodes… chances are that the blood may not show anything abnormal.

You mentioned before that patients with non-Hodgkin lymphoma sometimes may not have any abnormalities in the blood and that’s absolutely true, like what you experienced. If the blood cancer is just presenting in the lymph nodes, which are all over the body, and you can feel them as masses, then chances are that the blood may not show anything abnormal and you need to take a look at the lymph node in order to diagnose what the lymphoma is.

However, there are other times when lymphoma can be floating around in the blood as well. There are many lymphomas that float around in the blood. They will be picked up in the white blood cell count and differential count as an increase in the number of lymphocytes because lymphocytes are the cells that constitute the blood cancer lymphoma.

Blood Work Basics - Dr. Kamran Mirza

Normal lymphocytes in all of us are floating around and they’ll be within a normal number. But if they go up, it can either be because of a viral infection, or if they’re really, really high, it could also be because of a lymphoma that’s floating around. It’s very context-dependent. These are just numbers. You have to put your story and your history. Every patient will have their own presentation. What we do as pathologists, as your physicians, is put all of that together in order to give a diagnosis.

With red blood cells, often the problem is a decrease in red blood cells. This could be either because of simple things, like a patient not having enough iron in their diet. If they don’t have enough iron, they may not make enough hemoglobin and then their red blood cell count goes down because they have anemia.

Blood Work Basics - Dr. Kamran Mirza

Anemia is a decrease in the oxygen-carrying capacity of the blood. This could be in patients who have been in an accident and lost blood, which can lead to anemia. The red blood cell count goes down because you’ve lost so much blood. It could also be because of nutrition or something more ominous, like a blood cancer. A blood cancer taking over your bone marrow could decrease the number of red blood cells that are being produced and also show up as an anemia.

Context makes a huge difference. If a patient is known to be nutritionally deprived or if it’s a female patient who has very heavy menstrual periods or losing blood regularly, that anemia will most likely be because of iron deficiency. But if there is no history of blood loss, the patient has been doing well nutritionally, and they’re still anemic, then you start worrying why there is anemia. Normally, patients should not be having anemia.

Blood Work Basics - Dr. Kamran Mirza

Lastly, platelet counts can go up or down. Usually, what happens is that the platelet count goes down, which will hinder the ability of the patient to clot properly. For example, a cut happens and they keep bleeding when it should have stopped, or they may have bruises. Under the skin, they see splotches of bruising, even with the smallest amount of trauma and that could indicate that their platelet count is low.

In all of these three cell types, things can go up or down and all of that could be part of a reactive process, which could be benign, or it could be part of a more ominous process, which could be malignant. Again, it all depends on how the presentation has come to the physician and a variety of things that the physician will likely ask you before coming to a conclusion and ordering a test.

Stephanie: Thank you. Even after all these years of advocacy, it was helpful to have them spelled out and learn what they all mean. What I’m hearing is there are signs and signals of your internal health by the CBC, but also, context is important. What you and other healthcare team members are doing is putting together the entire story.

CBC Tests for Non-Hodgkin Lymphoma Patients

Stephanie: Our audience comes from across a lot of different blood cancers, primarily non-Hodgkin lymphoma. We have aggressive and slow-growing Hodgkin lymphoma, chronic leukemia, acute leukemia, multiple myeloma, and myeloproliferative neoplasms. CBC is a very basic test start off with. With non-Hodgkin lymphoma, is it the same with aggressive versus indolent? What are you looking for in the CBC that might be a flag?

Dr. Mirza: Let’s talk about lymphoma in general. I’m sure patients like you are familiar with the fact that we divide them into Hodgkin and non-Hodgkin.

An increase in the number of lymphocytes by itself does not make it lymphoma.

Hodgkin lymphoma by itself typically does not show up in the blood. It will show up usually as masses or lymph nodes that you can palpate, which can be all over the body.

Non-Hodgkin lymphoma can also present with no abnormalities in the blood and just show up as masses or lymph node enlargement in different areas. When it does show up in the blood, that is what we call lymphoma in the blood or lymphoma in a leukemic phase.

Leukemia means there are white blood cells in the blood. Leukemia is a historic term. When people look at blood, they see red because red blood cells have a pigment. Next to them, they saw clear, colorless cells, which looked like they were white. White blood cells are not white at all. It’s just the contrast that they’re not red.

When you see white blood cell counts go up in a lymphoma, which is a non-Hodgkin lymphoma, what we’re typically looking for is an increase in the number of lymphocytes. An increase in the number of lymphocytes by itself does not make it lymphoma. You need to make sure that the lymphocytes that are increased are, for lack of a better term, malignant. They’re all being driven by a genetic problem that is causing a proliferation of lymphocytes that’s not normal. Abnormal lymphocytes are being created and propagated and continue to propagate.

If you are a patient with a lymphoma that did present in the blood, an example of which is chronic lymphocytic leukemia (CLL). Often, CLL is a disease seen in middle-aged to elderly patients. They might feel well, go to their PCP, and get a CBC done, which then shows that their lymphocytes are increased. Then they might do some additional testing, which will confirm that this is part of a lymphoma process. Typically, one of the tests that they do is called a flow cytometry test, a test that confirms that these lymphocytes are lymphoma cells that are floating around.

If we talk about non-Hodgkin lymphomas, you will see an increase in the number of abnormal lymphocytes floating around in the blood. The CBC will only give you the number. You will need extra testing in order to confirm that it’s a non-Hodgkin lymphoma.

Now leukemia can be of multiple types. You can have a myeloid leukemia or a lymphoid leukemia. This all goes back to the bone marrow, which produces all types of cells, including lymphocytes and other types of cells. If a patient has an acute leukemia, then that primarily means that their blood has a very high number of very immature cells.

If we see patients who have lots of blasts in the blood, then we immediately think of an acute leukemia.

What’s happening is that the most immature cell from the bone marrow is not undergoing any differentiation or growing up that it normally does and it’s coming out directly into the bone marrow. These immature cells are called blasts. If we see patients who have lots of blasts in the blood, then we immediately think of an acute leukemia. Very different from non-Hodgkin lymphoma, which are mature lymphocytes but are abnormal and proliferating. Acute leukemia is when blasts are coming out and are very immature.

Flow cytometry studies would be done to figure out whether those blasts are from the myeloid line or the lymphoid line. If they’re from the myeloid line, it’ll become an acute myeloid leukemia and if they’re from the lymphoid line, it becomes an acute lymphoblastic leukemia. But in general, the blood will show you very high numbers of immature cells or blasts.

When a patient looks at the CBC, the WBC count will be increased, but by itself, that doesn’t mean anything. Then you look at the differential count, where they will have counted the number of neutrophils, lymphocytes, and monocytes. There’ll be another one there that will be labeled “other” or “blasts,” and that will be increased. That’s how we will be able to tell the PCP that your patient likely has an acute leukemia.

The bone marrow is throwing out lots and lots of a particular type of cell. Depending on what that type of cell is, we can look at that and figure out what the disease entity is.

With a myeloproliferative neoplasm, it’s when the bone marrow is producing a lot of cells in the myeloid lineage, but they are not blasts. It’s not an acute leukemia, but there can be a high number of red blood cells, which we know as polycythemia vera, or there can be a very high number of platelets, which is known as essential thrombocythemia.

There are different types of myeloproliferative neoplasms. What’s happening there is that the bone marrow is throwing out lots and lots of a particular type of cell. Depending on what that type of cell is, we can look at that and figure out what the disease entity is. Often, patients will need to undergo bone marrow biopsies for that.

You also mentioned myeloma or plasma cell diseases. Plasma cell diseases usually are diagnosed by a bunch of blood tests that look at the number of proteins in the blood, but you also need to have a bone marrow examination. There are times when we can look at the blood and see slightly increased numbers of plasma cells, which are the abnormal cells for myeloma. But again, you have to put into context a bunch of things for myeloma.

You have to take into account any radiological lesions the patient may have. Typically, these patients have lytic lesions in their bones. You also have to take into account their kidney function, how much protein they have in their blood or urine, and how many plasma cells are in the bone marrow. You have to put all of that together to make a diagnosis of myeloma.

The blood and the numbers in the blood going up and down can start pointing us towards what could be happening within the blood cancer world.

To characterize the blasts, you need to study where the cells are coming from and what makes up that cell.

How Do You Process the CBC?

Stephanie: When you talked about the acute leukemias and the blasts, you said that you’re looking at different numbers as you do with all of these. But after the CBC, to confirm for AML or ALL, what is typically the next step in terms of testing? Is there one go-to?

Dr. Mirza: Yes, absolutely. When the blood is drawn, the phlebotomist takes the blood and brings it to the laboratory. The laboratory will immediately run the numbers. When the numbers are off, the machine starts flagging the sample as abnormal.

A medical laboratory professional, another hidden hero in the diagnostic journey, will make a blood smear quickly and start looking at the cells. If abnormal cells are there, we’ll be paged as a pathologist. I will look at it and confirm whether there are abnormal cells.

Typically, in high-resource settings like in the United States, the tests that are done are tests that will characterize the blasts. To characterize the blasts, you need to study where the cells are coming from and what makes up that cell. Is it a myeloid cell or a lymphoid cell?

The DNA of the cell might have some abnormalities that either gives a good prognosis or a bad prognosis.

The first test would probably be a flow cytometry analysis. Imagine if you’re going to a party and you don’t know who anyone is and everyone is wearing name tags. The name tag tells you who you are, where you’re coming from, etc. My tag says I’m Kamran and I’m from Pakistan.

Similarly, blasts have tags on them that can be studied by flow cytometry analysis. What flow cytometry analysis does is it shines a light on all of these cells and identifies what tags these cells are wearing.

When the tags are saying myeloid, we can say acute myeloid leukemia. When their tags are saying lymphoid, we can say acute lymphoblastic leukemia. Flow cytometry analysis is a study of the tags. In high resource settings, we don’t stop there because that’s important from a diagnostics perspective, but we also go forward and help the hematologist-oncologist by giving a prognosis.

Often, prognosis is associated with what is inside the genes of the cell. The DNA of the cell might have some abnormalities that either gives a good prognosis or a bad prognosis. We know, over decades of looking at this, that there are some leukemias that have a better prognosis and some that have a worse prognosis, and usually that stems from DNA. You have to figure out either mutations or looking at chromosomes.

If you are in the United States and you went to a tertiary care center and got a diagnosis of leukemia, you’ll often find a karyotype report, which are your chromosomes. Every human cell has pairs of chromosomes and those will be studied. The DNA in those cells will also be studied.

You’ll get a report with mutations, potentially a report of how chromosomes were affected, and that will all come together in your final pathology report. It won’t just be acute myeloid leukemia; it will be acute myeloid leukemia with translocation 821 or something. It will be a long report that can be very confusing.

It’s telling the hematologist that not only is it leukemia, it’s an acute leukemia, it’s an acute myeloid leukemia, and it’s an acute myeloid leukemia with a particular translocation. All of that will be put together and then that will help guide the hematologist in the treatment, if that makes sense.

What’s the Difference Between CLL and SLL?

Stephanie: You started talking about non-Hodgkin lymphoma and then went into CLL. I know that when we talk about CLL, there’s also SLL. Usually we hear CLL more often, but is there anything that you want to add as to how you look at things on the pathology side?

Dr. Mirza: CLL/SLL is actually one disease entity. You’re absolutely right. CLL is chronic lymphocytic leukemia and SLL is small lymphocytic lymphoma.

What happens is that in this particular disease state, the blood is full of lymphoma cells but lymph nodes are involved as well. When it’s just presenting in the lymph nodes, it’s called small lymphocytic lymphoma. If it’s just presenting in the blood, it’s called chronic lymphocytic leukemia, but it’s the same disease. Often, we’ll call it CLL/SLL. It’s the same disease; it just depends on where you’re picking it up on.

Because the blood is a very easy tap — all you need to do is find a vein and get a little bit of blood out — it’s much easier than doing a lymph node biopsy. Often, it will be diagnosed in the blood. But if a radiologist does a scan and sees a bunch of lymph nodes everywhere, most likely it’s part of the same process. In our classification schemes, it’s all lumped under one: CLL/SLL.

What are the Symptoms I Should Be Looking Out For?

Stephanie: You’ve done a great job laying out some of these signals. We’re talking very generally and in a vacuum, but you’re looking at signals that other people are providing individually. On that note, people might think how they can start to match some of this for themselves.

You talked about anemia, which is something that people are more likely to be familiar with. But what about some of these larger symptoms of things that might be wrong? Could you translate how they might manifest in the body? Could you laundry list and go through the major symptoms, starting with anemia?

When the numbers are off, then their functions are also off. If the function is off, then typically the three buckets are infection, tiredness or breathlessness, and bruising.

Dr. Mirza: Anemia reduces our ability to carry oxygen in the blood. Think about what we need oxygen for. We need oxygen for energy. We burn oxygen for energy, so patients will be tired and feel fatigued. They might be out of breath because they’re trying to breathe in more oxygen because they can’t carry it.

They might look pale. When you look at your hands and you press and get redness, that’s because of the hemoglobin. Under the eyes where you can see redness might be pale. If patients are pale, tired, are out of breath or have increased breathing, those might all be because of an underlying anemia.

For platelets, when they are decreased, you might see prolonged bleeding or bruising. They might accidentally hit their arm against the door and all of a sudden, they have a huge bruise. That’s probably because the platelet count is low.

With white blood cells, because what they’re primarily doing is fighting infections, the patient may present with recurrent infections if the white blood cell count is low.

All of these, when the numbers are off, then their functions are also off. If the function is off, then typically the three buckets are infection, tiredness or breathlessness, and bruising. Those will be the three that relate to the function of the three main types of cells.

What Recurring Tests Will Patients Need to Have Done?

Stephanie: Shifting over to chronic blood cancers, what are the typical recurring tests that patients will likely be undergoing? Also, could you give a little bit more detail of why that’s what they’re looking at?

Dr. Mirza: What your physician wants to know is real-time updates, especially if you have an indolent disease, which means it’s either slow growing or not giving you that many symptoms. For example, there might be situations where if a patient has CLL, they don’t treat it because the number is low, not giving them any symptoms, and was identified by chance. They may give a drug that decreases the number of lymphoma cells, which isn’t heavy chemotherapy.

Ultimately, what we want to do is monitor how the cell numbers look over time. Repeating your CBC may be a very common thing for your physician so that they can keep check to make sure that everything is stable. It isn’t as much about one value; it’s about trending over time.

Take a patient who has CLL. When they presented, the only abnormality was an increased WBC count. There were lymphocytes but no anemia and no thrombocytopenia, which means that the red cells and the platelets were good. They chose no therapy or very minimal therapy and the patient’s fine.

But then when they present the next time, you see that there’s anemia associated. There was no anemia before and there is anemia now. Could this be because the lymphoma is getting worse and it’s disrupting the red blood cells? Or is it all OK? Is their platelet count OK, etc.?

Routine testing can take a variety of shapes accordingly.

I would think of them as real-time updates. You need to figure out whether things are progressing, staying the same, or improving. It could be that the lymphocyte count is totally normal. They got a drug and it took care of many, if not all, of the lymphoma cells. Even though it didn’t cure it, the number is so low that now it’s barely abnormal. It’s more a matter of follow-up.

In some cases, the disorder might be identified genetically. For example, chronic myeloid leukemia has a particular type of mutation or rearrangement in our chromosomes that can be detected by molecular testing. The patient is treated with therapy and can go into remission. All they need is that molecular test to tell the hematologist whether they are in remission or still have the disease.

It depends on what the disease is, how it presented, and what types of tests we have available for it, but routine testing can take a variety of shapes accordingly.

Using Blood Work to Identify Minimal Residual Disease

Stephanie: I don’t want to get too in the weeds, but there’s more and more conversation in the last few years about getting more precise with detection of disease. I don’t know if there’s anything you could talk about with minimal residual disease and in what areas people might be more part of the conversation than others.

Dr. Mirza: That’s excellent. You are so deeply thoughtful; it’s amazing.

Minimal residual disease is our ability to take a look at a very tiny amount of residual disease left after treatment. Our detection methods have become so good that we can potentially detect that.

We want to know before a transplant if the patient free of disease or if the patient has minimal residual disease left.

When we think about minimal residual disease, the two types of diseases that come early to mind are myeloma and B-cell acute lymphoblastic leukemia. We have good mechanisms to figure out if there’s a very tiny amount of disease left. We’re talking about one cell in 10,000 cells.

It’s harder for minimal residual disease studies to be done in acute myeloid leukemia and there are a variety of reasons for it. We can do MRD testing in AML, but it’s harder.

Minimal residual disease can be very helpful in a variety of ways. For some blood cancers, the curative treatment is a bone marrow transplant or hematopoietic stem cell transplant. We want to know before a transplant if the patient free of disease or if the patient has minimal residual disease left. It’s an indicator of their disease status before they go for a transplant.

Minimal residual disease testing can be by PCR or molecular testing, or by flow cytometry testing, depending on what the disease is. There are a variety of tests.

Precision-based therapies target a particular molecular alteration in the disease. We talked about CML. The molecular problem in chronic myeloid leukemia has a drug that you can treat with, but if that problem doesn’t exist, the drug is not going to work.

Patients get cured of CML by using this drug. It’s miraculous. There will be certain mutations that have specific drug targets. There will be certain chromosomal rearrangements that have targets. All of those are important when it comes to longer-term monitoring of testing.

Why Would My Doctor Order a Comprehensive Metabolic Panel (CMP)?

Stephanie: We focused a lot on the CBC. What role does the comprehensive metabolic panel (CMP) play? Those are generally the two tests that patients probably see the most or have ordered the most.

Dr. Mirza: The comprehensive metabolic panel, like the name suggests, looks at the metabolic status of the body. The CBC is looking at the numbers and the differential will look at the types of cells, etc. But the CMP is going to give you a better understanding of the patient’s kidney function, liver function, and electrolytes.

All of this balance is effectively given to us as a snapshot in the CMP.

Electrolyte imbalances are not going to be picked up by the CBC. Blood sugar levels are not picked up by the CBC. When you think of metabolism in the body, you’re trying to figure out how the body is managing the different byproducts of what we eat.

The way we do that is by controlling blood sugar and keeping electrolytes balanced, and those are due to liver function. The liver is a huge player in the metabolism of what we eat. The kidneys are a huge player in what we excrete in the urine. All of this balance is effectively given to us as a snapshot in the CMP.

Blood Work Basics - Dr. Kamran Mirza

How Doctors Decide Which Blood Tests You Need

Stephanie: In the blood cancer space, is CMP a complementary test always given or not necessarily? And in what case is it a must?

Dr. Mirza: If it’s an initial diagnosis and we’re still trying to figure out what’s happening to the patient, I don’t know if it’s a must, but I definitely would order it. I would want to know. Indirectly, it can tell you a variety of things that are happening with different organ systems. It’s reassuring if it’s normal. But it depends on how the patient is presenting.

These are reasonable tests because what they provide you versus the cost is a good cost to benefit ratio.

The patient can have concurrent diabetes and the CBC isn’t going to pick that up. Patients can have CLL and diabetes, but the CBC is not going to pick up the diabetes component. Because CMP is a snapshot of overall health, it’s helpful. Would you need to do it every single time if everything else was normal? Unlikely.

I don’t want to be flippant about it, but in the context of how expensive health care is, the CBC and the CMP are relatively cheap tests. I don’t know the cost, but they’re not very expensive. We’re not talking about thousands of dollars or even hundreds of dollars. The hemoglobin by itself is a very cheap test. These are reasonable tests because what they provide you versus the cost is a good cost to benefit ratio.

Blood Work Basics - Dr. Kamran Mirza

Conditions That are Monitored More with CMP Tests

Stephanie: For blood cancers, is there something where the CMP is more frequently utilized as a complementary test?

Dr. Mirza: Myeloma is a disease where the cancer cell is the plasma cell and the job of a plasma cell is to make proteins. It makes antibodies to fight off infections, but in myeloma, it’s all abnormal. You will need more than the CBC to figure out how much protein there is. That could be a urine test, but it could also be a blood test.

What you find is that in the blood, the normal protein ratio is all out of whack because you have all these abnormal proteins, so you’ll get another test to figure out what type of protein it is. But again, you can think of the CMP as a screening tool, a first test that will give you a big picture and then you can do a more specific test.

Blood Work Basics - Dr. Kamran Mirza

Both the CBC and the CMP in that sense are quick screens. For example, when you get a CBC and the lymphocyte number is up, you need a flow cytometry to figure out what’s happening. Flow cytometry is more expensive. You don’t want to do that for every single person. Similarly, the CMP can guide you and say the liver function is off, so you may want to do a whole other panel of liver function tests, which you don’t want to do upfront.

Blood Work Basics - Dr. Kamran Mirza

Should Patients Check Their Lab Results Online Before Talking to a Doctor?

Stephanie: We’re in the age where many patients get the test result notifications even before they hear from the doctor. Would you recommend that patients take a look at their results online or that they wait? How should they interpret these different values over time?

Dr. Mirza: I’m not hesitating because I don’t know the answer. It’s very nuanced and very patient-specific. It also depends on your level of health literacy in general and your personality.

Some people like to go to the airport early. Some people like to go to the airport late. Some people think knowledge is power, but some people think knowledge is not power and they get stressed out about it.

By law, tests and diagnoses that we write are immediately transferred to the patient portal. There are some scenarios where there is a small pause of a couple of days for whatever reason, like if we feel that the patient may not understand it, giving the physician an opportunity to look at it.

The patient has the full right to know what is happening to them. But it’s tricky to think about how that process unfolds.

Let’s say it’s a Friday evening and the patient went to the clinic and had their blood drawn. I look at the blood, do the flow cytometry, and conclude that they have acute myeloid leukemia. I write acute myeloid leukemia and sign it out. Meanwhile, the patient’s physician is still seeing patients in the clinic, but by the time the patient gets home, they’ll get a result on their patient portal, which says they have acute myeloid leukemia.

Think about this patient. Do they want to know this diagnosis? Do they understand what this diagnosis is? What will happen is that their physician who is going to treat them hasn’t had a chance to talk to them about any of this yet.

But that said, all of the information that we provide in reports is the patient’s material. We’re not gatekeeping anything. The patient has the full right to know what is happening to them. But it’s tricky to think about how that process unfolds.

There needs to be a conversation with your patient-facing provider to make sure that you understand the details of the information that can be bombarded to you.

Now, you can have a patient who is very up in their health literacy, understands exactly what all these things mean, can manage the stress or anxiety associated with this information, and can manage looking online where all sorts of opinions will be there. You need to have trust in your provider. There are so many nuances here.

Ultimately, though, it’s not our information to gatekeep. It is the patient’s information. Broadly speaking, it is correct that the patient gets access to that information, but there needs to be a conversation with your patient-facing provider to make sure that you understand the details of the information that can be bombarded to you.

Remember that even if it’s monitoring of tests, there might be variations of fluctuations. If I look at them, I can say that it’s a tiny fluctuation and no big deal, but the patient might think the worst.

Blood Work Basics - Dr. Kamran Mirza

Within the world of testing, what’s complicated is that in certain situations, certain tests being a little bit flagged is not such a big deal. With hemoglobin, for example, if it’s off by one point or half a point, it may not be such a big deal, especially if it’s in the normal range. But if it’s a creatinine value and it’s off by 0.6, which can go from 0.8 to 1.2, that’s a huge change. It all depends on what the test is and what it’s being monitored for.

A variety of these things will be different based on what was happening with the patient. Was the patient dehydrated? Some numbers might be off. Is the patient on a completely new drug that is making some changes? Did the patient run a marathon before they got the test? All of these things make a big difference in the way the laboratory test results can be interpreted.

At the University of Michigan, we have a Patient and Family Advisory Council, which I co-chair. Patients are actively involved in a bunch of these decisions. Many of the faculty at Michigan are working on things like patient-centered reporting. They’ve looked at patients reading their pathology reports and have figured out that patients don’t even know what the diagnosis is. There’s so much scientific jargon, which can be difficult to write out.

Blood Work Basics - Dr. Kamran Mirza

Similarly, we have a pathology clinic where breast cancer patients talk to their pathologists who show them their cancers. There’s national literature now on patients, by and large, who are feeling value in speaking to their pathologists. This is something that is happening in only a few places, but it’s certainly happening now.

As a pathologist, I went to medical school. No one took away my license to speak to patients. It’s just that we are in a system where that typically does not happen. But it can be valuable to speak to your pathologist.

Your laboratory pathologist’s name is at the bottom of every pathology report. You can call them. Typically, patients don’t, but I have received calls from patients and I try my best to explain their test results. I obviously can’t talk about the treatment as I’m not that well versed on that aspect, but I do know what their biopsy is showing or what their blood test is showing.

Blood Work Basics - Dr. Kamran Mirza

It’s complicated because you want the information to be delivered to the patient in a way that will benefit the patient. Ultimately, it is their information. Let’s say no one follows up on it and it’s been a couple of days. At least the patient will know that something happened. Let’s say you’re in a very remote part of the country. There aren’t that many providers. Nobody’s checking the reports. That would be horrible if the patient didn’t realize that they have something wrong with them.

We have many checks and balances, but sometimes, the checks and balances don’t come through. It is important for the patient to know what their report was. I’m glad in a way that they get it, but that whole process is nuanced.

Stephanie: It’s a necessarily nuanced answer that you have to give because there are so many different situations. I also appreciate that you’re part of that Patient and Family Advisory Council. Thank you for doing all the patient-led work.

Blood Work Basics - Dr. Kamran Mirza

Dealing with Delays in Getting Test Results

Stephanie: You talked about being in the middle of the country versus somewhere, like Michigan, where it’s highly resourced. You have lots of research there and people like you. What are the reasons why people wait sometimes longer than other places for results? Does that have something to do with who they have on staff or whether they have to outsource the reading? How does that work?

Dr. Mirza: We always talk about low-middle income countries or low-resource settings, but there are some areas in remote parts of the United States where they may not have ready access to a laboratory or a pathologist that, for example, you may have in Chicago, New York, or San Francisco.

Often, if it’s a complicated case, then all of these places have contracts, affiliations, and agreements with pathology departments. Ultimately, everybody finds a place for their pathology to be read. But that said, sometimes it can be delayed because of several reasons.

Primarily, anything that’s delayed is because the test has a turnaround time of a particular amount of time. For example, some molecular tests can take up to two weeks. It can take up to a month in some settings.

It can be delayed because of several reasons. Primarily, anything that’s delayed is because the test has a turnaround time of a particular amount of time.

Think about when the blood was drawn. I hate to give this very negative example, but let’s say the blood was drawn in the middle of a state and the closest laboratory is a three-hour drive away. A patient got the blood drawn at 4 p.m. on Friday and the cutoff for the van was 3 p.m. To them, they’ve given the blood at 4 p.m. on Friday, but the actual pick up for the blood won’t be till Monday morning.

On Monday morning, the blood will be picked up. That’ll go to the laboratory three hours away. It’ll be put on the machine. It might be a little bit complicated. They may not have an answer until Tuesday morning. But in their mind, they gave the blood on Friday, but the laboratory only got it on Monday. I’m not defending the laboratory. I’m just saying that sometimes, these things happen.

On Monday, they might get the specimen and say, “Oh, before we give a real answer, we need some specialized tests,” and then somebody like me will probably call their physician and say, “I have to run a few more tests.” They’ll say, “OK, fine.” But then it’ll be Wednesday by the time the answer comes. It can be a little bit complicated. But by and large, if it’s a simple test, it’s pretty quick.

Blood Work Basics - Dr. Kamran Mirza

Conclusion

Stephanie: Thank you so much, Dr. Mirza. We appreciate you joining us. Let’s continue the conversation as this is beneficial to so many people out there.

Dr. Mirza: It’s a pleasure always talking to you. Thanks, Stephanie.

Stephanie: We want to point out some incredible resources from our friends at The Leukemia & Lymphoma Society, including their Information Specialists. You can reach them via phone call, email, and live chat. They also have regional support groups and peer-to-peer connection called First Connection®.

Thank you for joining. I know that there’s a lot to go through. We hope to see you at another program because hopefully, today was helpful for you. Thank you and take good care.


Blood Work Basics: Making Sense of Your Test Results
Hosted by The Patient Story
What do your blood test results really mean — and how do they help doctors detect or monitor cancer? Learn about the most common diagnostic tests, including the CBC and the CMP.
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We would like to thank Blood Cancer United for their partnership. They offer free resources, like their Information Specialists, who are one free call away for support in different areas of blood cancer.


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Chemotherapy Clinical Trials Patient Stories Radiation Therapy Rhabdomyosarcoma Sarcoma Soft Tissue Sarcoma Surgery Treatments

Choosing Quality of Life in Her Rhabdomyosarcoma Treatment

How Brittany Chooses Quality of Life in Her Stage 4 Rhabdomyosarcoma Treatment Decisions

Brittany received a life-altering diagnosis of stage 4 rhabdomyosarcoma in July 2024. What started as a small lump on her jaw quickly escalated into a whirlwind of hospital visits, major surgeries, and tough decisions. But throughout it all, Brittany has remained grounded in her values, fiercely committed to preserving her mental health, self-worth, and autonomy.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

When Brittany first noticed the lump, doctors thought it might be a cyst. But after it rapidly swelled during a biopsy, further testing confirmed it was cancer. That moment, she recalls, shattered her sense of normalcy. Getting that phone call was a deeply painful turning point. From there, she had to quickly learn how to advocate for herself.

Initially, Brittany’s first oncologist didn’t offer many choices. She sought a second opinion, and that’s when things began to shift. Despite being a young adult, Brittany learned that stage 4 rhabdomyosarcoma is often treated as a pediatric condition, which brought its own emotional weight. But the new oncologist gave her options, including fertility preservation, which was emotionally and physically taxing but important to her.

Brittany C. stage 4 rhabdomyosarcoma

Brittany started chemotherapy and endured severe nausea, weight loss, and exhaustion, only to find out that the treatment wasn’t effective. In October, doctors removed the tumor surgically, replacing her jaw with titanium and using bone and muscle from her leg for reconstruction. She lost some facial movement in the process, a harsh reminder of the physical toll this diagnosis has taken.

Radiation therapy came next, damaging her salivary glands without improving her condition. Then the cancer spread to her lungs. After more chemo and even a clinical trial, Brittany made the decision that her treatments and their impact on daily life were stealing the quality of life she wanted. She bravely chose to stop her clinical trial treatments and take a more holistic approach, focusing on diet, lifestyle, and emotional healing. She is monitoring her lungs and scheduling a second surgery to work on her jaw.

Mental health has been the toughest part. Losing her physical strength, independence, and even pieces of her identity has been crushing at times. But Brittany has also grown immensely. With unwavering support from her boyfriend and his community, she’s learning to trust herself again, reclaiming her life on her own terms.

Brittany wants others to know they aren’t alone. Stage 4 rhabdomyosarcoma is terrifying, but fear doesn’t get to make the rules. You do. And she’s living proof that, even in the darkest hours, hope and strength can coexist.

Watch Brittany’s video to find out more about:

  • How Brittany found clarity and control after a devastating diagnosis
  • Why she has a titanium jaw
  • The emotional toll of stage 4 rhabdomyosarcoma
  • Why Brittany walked away from treatment to protect her quality of life
  • What it means to find your voice when the world tells you what to do

  • Name: 
    • Brittany C.
  • Age at Diagnosis:
    • 22
  • Diagnosis:
    • Rhabdomyosarcoma
  • Staging:
    • Stage 4
  • Symptom:
    • Small, sharp lump on the right side of the jaw
  • Treatments:
    • Surgeries: tumor removal & planned corrective jaw surgery
    • Chemotherapy
    • Radiation therapy
    • Clinical trial
Brittany C. stage 4 rhabdomyosarcoma
Brittany C. stage 4 rhabdomyosarcoma
Brittany C. stage 4 rhabdomyosarcoma
Brittany C. stage 4 rhabdomyosarcoma
Brittany C. stage 4 rhabdomyosarcoma
Brittany C. stage 4 rhabdomyosarcoma
Brittany C. stage 4 rhabdomyosarcoma

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

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.


Brittany C. stage 4 rhabdomyosarcoma
Thank you for sharing your story, Brittany!

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Jennifer’s Mental Strength living with Kidney & Ovarian Cancer

Jennifer’s Mental Strength Living with Stage 3 Kidney and Stage 4 Ovarian Cancer

In 2023, Jennifer was blindsided by a dual diagnosis of stage 3 kidney cancer and stage 4 ovarian cancer. Her life was turned upside down in an instant. But rather than let fear take over, she leaned into the present moment and shifted her mindset toward gratitude, growth, and healing.

Jennifer’s story began with a mysterious, rapidly growing abdominal swelling, which led her to urgent care, then the ER, and finally a whirlwind of scans and surgery. Despite being healthy, active, and symptom-free weeks earlier, Jennifer’s world changed overnight.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

At first, Jennifer felt emotionally frozen. She was never explicitly told, “You have cancer,” but the weight of the diagnosis was undeniable. She didn’t even learn the exact staging until much later, intentionally avoiding medical reports to protect her mental well-being. Eventually, she discovered her stage 3 kidney cancer and stage 4 ovarian cancer diagnoses, but by then, her focus was already on healing.

One of the most striking parts of Jennifer’s story is how deeply isolation impacted her. With her daughter temporarily living with her father and no family close by, Jennifer went through nearly every step of surgery and chemotherapy alone. Yet, she also found a quiet strength in that solitude. It forced her to self-advocate, connect with supportive professionals like Dr. James Kendrick, and trust her own resilience.

Jennifer W.

Physically, the process was intense. Jennifer underwent major surgery that removed multiple organs, including her kidney, gallbladder, spleen, and reproductive system. Still, she recovered surprisingly well and chose to forgo heavy pain meds out of caution, relying mostly on acetaminophen and the support of her spiritual community.

Her mental and emotional recovery became just as important. She prioritized walking, listening to her body, and staying emotionally grounded.

Jennifer emphasizes the importance of staying present, advocating for yourself, and refusing to let a diagnosis define who you are. While there are days she still feels afraid, especially around scan times, her approach remains one of empowerment and emotional honesty.

The road ahead includes continued monitoring, a PARP inhibitor regimen, and lifelong surveillance. But what keeps her grounded is her daughter, her deepened gratitude, and her determination not to let fear take the wheel.

Jennifer’s advice to others? Don’t let yourself spiral. Let your mindset lead with curiosity, strength, and presence. You’re allowed to feel everything, but you’re also capable of more than you know.

Watch the video to find out more about Jennifer’s story:

  • What the worst part of her cancer experience was (it wasn’t surgery or chemo)
  • Why she refused to look at her medical records after diagnosis.
  • What helped her cope when the hospital room was quiet and fear was loud.
  • Why she couldn’t say the C-word and how she found her strength.
  • How she turned fear, isolation, and uncertainty into radical gratitude and growth.

  • Name: 
    • Jennifer W.
  • Age at Diagnosis:
    • 52
  • Diagnosis:
    • Kidney Cancer and Ovarian Cancer
  • Staging:
    • Stage 3 (Kidney Cancer) and Stage 4 (Ovarian Cancer)
  • Mutation:
    • BRCA1
  • Symptom:
    • Abdominal bloating
  • Treatments:
    • Surgeries: hysterectomy, splenectomy, nephrectomy (left kidney removed), cholecystectomy
    • Chemotherapy
    • Targeted therapy: PARP inhibitor
Jennifer W.
Jennifer W.
Jennifer W.
Jennifer W.
Jennifer W.
Jennifer W.

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

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.


Jennifer W.
Thank you for sharing your story, Jennifer!

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Categories
Bladder Cancer Caregivers Immunotherapy Our Voices, Our Stories Patient Stories Surgery Transurethral resection of bladder tumor (TURBT) Treatments

Healing Together: How My Mom Helped Me Through Bladder Cancer

Healing Together: A Mother and Daughter Navigate High-Grade Bladder Cancer

The Many Faces of Bladder Cancer: Voices of Strength and Resilience

Subtle female bladder cancer symptoms—a faint trace of blood in the urine and nagging UTIs that didn’t respond to treatment—triggered 28-year-old Mary Beth’s diagnosis. Our series, The Many Faces of Bladder Cancer: Voices of Strength and Resilience, completes with a story of an adult daughter battling high-grade, non-muscle invasive bladder cancer (NMIBC) and her mom’s dedication as her caregiver. These powerful stories highlight the experiences and the challenges faced by bladder cancer patients and survivors. This series intends to foster hope, understanding, and a fresh outlook on dealing with this condition while raising bladder cancer awareness.

When Mary Beth was diagnosed with high-grade non-muscle invasive bladder cancer (NMIBC) at 28, the news came as a total shock, not only to her, but to her whole family.

It started when she noticed a little blood in her urine. At first, she thought it was a minor issue, like a urinary tract infection or her menstrual cycle. But when the bleeding returned intermittently despite treatment for UTI, she trusted her instincts and saw a urologist, even though the symptoms had mostly disappeared. [note: these are both signs of common ailments and female bladder cancer symptoms. It’s important to get checked}

That decision changed everything. A quick in-office procedure revealed tumors and after surgery to remove them, Mary Beth received the difficult diagnosis: high-grade non-muscle invasive bladder cancer. The initial consult felt cold and overwhelming, so she sought a second opinion at Vanderbilt University Medical Center, a move that made all the difference.

Throughout it all, her mom, Mary, stood by her side and offered steady emotional support. A retired nurse, Mary showed up for the weekly treatments, cooked meals, created calm, and just listened. Their relationship deepened as they moved through this life-changing experience together.

Mary Beth highlights the vital role caregivers play, not only in helping manage logistics and appointments but in creating a healing environment. Through her connection with Imerman Angels and the Bladder Cancer Advocacy Network, she became a mentor to other young women navigating high-grade bladder cancer. That sense of shared experience brought purpose and healing, allowing her to give back while continuing her recovery.

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


Imerman Angels cancer support community

Thank you to Imerman Angels for their partnership. Imerman Angels is here to provide comfort and understanding for all cancer fighters, survivors, previvors, and care partners through a personalized, one-on-one connection with someone who has been there.


Interviewed by: Nikki Murphy
Edited by: Katrina Villareal


I noticed blood in my urine… there wasn’t that much blood, so I didn’t think much of it.

Mary Beth

Introduction

Mary Beth: I was diagnosed with bladder cancer in 2014. I’m a mom of two boys. We live in Danville, Kentucky. My friends and family would describe me as a social, outgoing person who loves to make new connections. I’m very curious and a lifelong learner, interested in expanding and exploring the world around me in any way I can.

Mary: I’m Mary Beth’s mom. My friends and family would describe me as curious, creative, social, and fun-loving.

Mary Beth M. high-grade bladder cancer
Mary Beth M. high-grade bladder cancer

Red Flags I Noticed Before My Diagnosis

Mary Beth: In the fall of 2013, I noticed blood in my urine. I was with my mom when I first noticed it. We were at a family member’s wedding at that time. I thought it was weird, but we were busy and there wasn’t that much blood, so I didn’t think much of it. I thought I had a urinary tract infection (UTI) or was starting my menstrual cycle. I was experiencing it intermittently.

A few months passed and I noticed that it wasn’t going away, even though I had been treated for a UTI. I decided to make an appointment with a urologist to have it checked. I almost didn’t go because I stopped seeing the blood at all. My urine was a teeny bit pink, so it wasn’t alarming. I almost canceled my appointment because it was gone that week, but it was a good thing I didn’t.

I lived in Nashville at the time. I went to see the urologist and he scoped my bladder in his office. He could see that I had tumors in there and wanted to have them removed within a few days. I proceeded to have an outpatient laparoscopic surgery to remove the tumors he saw.

She’s awfully young… She didn’t fit the medical picture that we were familiar with.

Mary

Getting the Official Diagnosis

Mary Beth: A few days later, I received the diagnosis from his office. They told my parents first because they wanted to know what was going on. My parents told me that I had cancer. That was a hard day.

At the private practice I went to, they did a CT scan on the same day I got the scope done. They also did a test that showed a lot of microscopic blood in my urine.

There was a waiting period after the biopsy. That was in February 2014. I remember the day. It was storming outside, which was unusual for February.

Mary Beth M. high-grade bladder cancer
Mary Beth M. high-grade bladder cancer

Mary: We were in Danville and she was in Nashville. This happened through a phone call. Her dad is a retired physician and I’m a retired nurse, so we have a medical background. He primarily got the report. If I remember correctly, he talked to her and I talked to her after that.

We were shocked, to say the least, because there’s no cancer in our families. She’s awfully young and in our experience, bladder cancer typically is for a heavy smoker and usually a middle-aged to old age man. She didn’t fit the medical picture that we were familiar with.

I knew she was very upset. I tried to calm her as best I could on the phone, but that doesn’t help when you’re in shock at something that you were not expecting at all. We all felt like it was an emotional blow.

Her dad and I felt that treatments were the answer and that this could be taken care of. At that time, we were trying to help her cope emotionally, which wasn’t easy because we weren’t in the same town.

All I can remember from that initial consult was the percentages of my cancer getting worse or coming back, which was overwhelming at the time.

Mary Beth

Hearing the News from My Parents

Mary Beth: I was glad that they talked to me about it. It would have been harder if I had gotten the news in the doctor’s office. I felt grateful that I got the news that way because it was softer.

I was thinking, “How did this happen? What could have caused this? How bad was this going to be? What do I need to do next?” I was shocked. I couldn’t believe that it was me that they were talking about. It felt like an out-of-body experience.

Mary Beth M. high-grade bladder cancer
bladder

Discussing My Treatment Options

Mary Beth: It was a pretty intense appointment. He talked about how I could do the first line of treatment, which would be BCG immunotherapy. He also talked about bladder removal (cystectomy). He talked about how my bladder cancer was high grade and the type to recur, and how the odds of it coming back were high. I felt bladder removal was more on his mind for me, so that I wouldn’t have to keep dealing with it. I also think there were other chemotherapies I could mix with that.

There were a few different options, but all I can remember from that initial consult was the percentages of my cancer getting worse or coming back, which was overwhelming at the time. Truthfully, it wasn’t warm and compassionate. I decided to get a second opinion.

We felt she was in the best hands. You could tell that he cared about her and was doing all he could to help her.

Mary

Getting a Second Opinion

Mary Beth: I got a second opinion with Dr. Sam Chang and his team at Vanderbilt University Medical Center. He was awesome from the beginning. He talked about a long continuum of what could happen, from BCG to bladder removal. He talked about how we could start with the basics and see if that works. He was very good about bringing it back to the next step. It wasn’t as overwhelming. He was also a very warm, personable, and compassionate man.

I decided to do BCG at Vanderbilt. I immediately switched my care and records over to Dr. Chang. I immediately felt better because there was a shift in the delivery, energy, and research by the medical team at Vanderbilt.

He was using cutting-edge technology for bladder cancer at that time, which was called Blue Light Cystoscopy (BLC®) with Cysview®. He could perform the procedures using an agent that lights up the cancer cells, almost like a black light, so he could see them more clearly and remove them more easily compared to a normal white light procedure, which is what most urologists offer.

Mary Beth M. high-grade bladder cancer

My Mom’s Role in the Treatment Decision-Making Process

Mary: As a surgeon himself, my husband took the reins with her at the appointments or at least to hear about her options. He took care of the medical aspect of what they were proposing. I was the emotional support and went with her to treatments because he was still practicing at that time.

I was able to stay in Nashville and accompany her to the clinic and help with anything we could do to help at home, so that she could take it easy. That was my main function and where I could help the most, whereas he was more aware of the technical side.

We liked Dr. Chang so much. We felt she was in the best hands. You could tell that he cared about her and was doing all he could to help her, which helped her get through all this.

By October, he didn’t find any cancer. There was no evidence of disease.

Mary Beth

My Treatment Regimen

Mary Beth: After I was diagnosed in February 2014, I had another transurethral resection of bladder tumor (TURBT) in March. Dr. Chang waited a month or so to let my bladder calm down. I did the BCG treatment, which was six weeks of weekly treatment. Afterward, he did another TURBT to check. I waited a longer period and then had three more treatments.

Then I was moved to maintenance treatment. He saw a little bit of cancer remaining after my first six-week treatment, so he looked again and took out a little bit more that he could see. I went on maintenance treatment after those three weeks, waited, did another TURBT, and by October, he didn’t find any cancer. There was no evidence of disease. I consider October 2014 as when I was cancer-free, but I continued to do maintenance.

I had another three-week round and another TURBT in January 2015. It was still clear. I did more maintenance treatment and had my last one in the spring of 2015. We were monitoring and did imaging every three months and then progressed to every six months. In 2016, he said I was good. We wanted to have children at the time and he gave me the green light.

From the diagnosis to the end of treatment was a two-year period. I didn’t have to do chemo. With bladder cancer treatment, there are different combinations they can do, but the BCG worked, which was the least toxic. It left my system when I was done. It was not a fertility concern, which was great.

BCG immunotherapy
Mary Beth M. high-grade bladder cancer

The Importance of Having My Mom with Me During Treatment

Mary Beth: My treatments were on Friday afternoons. I worked a full-time job and would take Friday afternoons off to get the bladder installations in the clinic.

My mom would keep me company. I had to wait a long time to go in and get the treatment. Then I had to wait a little more, having it in my bladder, before I could leave. Sometimes my mom drove me, but other times she was there to accompany me then we would go back to my house.

I needed to hold the BCG in my bladder for two hours for it to work, which could be challenging, especially when you have sensitivity. It can be very uncomfortable. After two hours, I would go to the bathroom and let the BCG go.

I would have a pretty sensitive bladder for 24 to 48 hours. There was a lot of stinging, burning, and a frequent urge to urinate. I would try to take it easy and have fun, like watching TV, eating good food, and trying to enjoy myself as best I could to distract myself from it. We would usually do something fun that weekend, but those were six weeks in a row.

By my fourth or fifth treatment, I felt like I had the flu. I felt tired and achy, as if I had a low-grade fever, but not to the point where I couldn’t go to work or do things. I just had to rest a lot more.

At the time, I was 28, so I wanted to be active. I’m a pretty energetic person, but I was forced to take it easy on the weekends. My mom was good about hanging out with me and doing low-key activities.

I would let her energy and desires drive whatever we would do or not do. I kept her comfortable and distracted.

Mary

How My Mom Felt Seeing Me Go Through Cancer Treatment

Mary: Being a nurse, a clinic environment and patient care are very familiar, so it wasn’t as intimidating or frightening as it might be for a lay person. When we would get back to her house, I would make some food and we would watch movies. We might walk a little bit in her neighborhood — she had a beautiful neighborhood. But mainly, we hang out. I would let her energy and desires drive whatever we would do or not do. I kept her comfortable and distracted.

We love good old movies, so we watched movies and spent time together. Simply being there made a big difference to us. When she didn’t feel like doing anything, we let her rest, and I would cook, clean, or do whatever needed to be done.

Mary Beth M. high-grade bladder cancer
Mary Beth M. high-grade bladder cancer

Discovering Imerman Angels

Mary Beth: When I was diagnosed in 2014, especially that spring and summer, it was difficult to feel positive because I was worried and frightened. It was also hard because my family and friends were worried about me. I decided to join a walk for bladder cancer awareness in Lexington, Kentucky, with a lot of my family members and friends, and it was great.

Nashville doesn’t have a bladder cancer walk, and I thought we should because we have a huge medical community and great urology programs. I worked with the Bladder Cancer Advocacy Network (BCAN) to start the walk in Nashville in 2015. At this point, I was through the worst of my diagnosis and treatments.

Helping other young women who are dealing with this diagnosis helped me heal as well.

Mary Beth

It put me in an advocacy mindset about sharing my story and helping others. I found ways to connect as a patient advocate. Imerman Angels came up immediately when I was searching for that type of work and outlet for myself. Helping other young women who are dealing with this diagnosis helped me heal as well. I connected with them.

Every time I had a phone call or matched with another patient, I felt great being able to answer questions, share my story, and help them. I did the same thing with BCAN, which has a patient advocacy program. If there are others, I’m all about signing up as a mentor and a person to chat, but Imerman Angels has always been very professional and on top of how they match and follow up. It’s been a good experience for me for sure.

Mary Beth M. high-grade bladder cancer
Mary Beth M. high-grade bladder cancer

What My Mom Didn’t Know While I Was Going Through Cancer Treatment

Mary Beth: Sometimes, I didn’t show how scared I was. I expressed how grateful I was that she came, but I want to reinforce that. It was a huge time commitment on her part to drive three hours to see me and spend time with me. They were even able to get a place in my neighborhood so they could be close by. To be spending so much of her time away from her other responsibilities was a major time commitment and I appreciated that.

I needed the caretaking, but I also needed a lot of positive energy. My mom is very upbeat. She tries to help with peace, hope, and faith. She’s a very spiritual person, and the spirituality that she brought and the conversations that we had during that time helped me get through. It was impactful to me, so I started my own journey.

Mary: I was sure she was scared, but she was brave. It’s very devastating emotionally and physically, but I felt like she would get through it and be cured of it. I also knew that if looked at correctly, this could teach her a lot about her inner strength and spiritual strength. I felt like we had the same goal. Whatever she shared with me was something for me to learn from, too.

We connected on a deeper level… It’s been very valuable for us to know each other deeply through a crisis where we came together.

Mary

Cancer’s Impact on Our Relationship

Mary Beth: The experience brought us closer. I was going through it as an adult, but I also needed some guidance. We were not communicating as frequently or spending as much time together, but that time helped us bond more. One of the bigger things out of the whole experience was having a genuine time to connect. 

Mary: I would agree. Her brother married and moved away, so I’m not involved in his life frequently. When she moved to Nashville, I thought it would be the same pattern. Your children have flown the coop and are setting up their nests, and you’re visiting and enjoying being with them.

This was the call to come to her aid. Since she went away to college and got married, she has never lived with me again. It was a time for us to get to know each other as women, not just as mother and daughter. As time goes by, I’m going to need some help from her.

We connected on a deeper level. I don’t think that would have occurred if she continued to live in another state. It’s been very valuable for us to know each other deeply through a crisis where we came together.

Mary Beth M. high-grade bladder cancer
Mary Beth M. high-grade bladder cancer

My Advice to Fellow Bladder Cancer Patients

Mary Beth: The biggest thing that I can say is to advocate for yourself. When you know something’s not right, follow your gut instinct and persist through the medical system, though it can be challenging and confusing. Seek out other opinions. You don’t have to do this one certain way. Be open to other modes of treatment.

Expand your sense of care to family and friends who want to be there for you. Don’t feel like you have to be strong all the time. Allow yourself to feel vulnerable. You can feel scared and sad. Getting the help that you need to move through those feelings and finding the pathway that fits you best is a process.

Don’t feel like you have to be strong all the time. Allow yourself to feel vulnerable.

Mary Beth

At that time, I was in a place where I could explore different avenues to help me on all levels: mind, body, and spirit. I felt very fortunate. I encourage anyone going through this to be open to asking others who’ve been through it themselves to know that they’re not alone.

Mary Beth M. high-grade bladder cancer
Mary Beth M. high-grade bladder cancer

My Mom’s Advice to Fellow Caregivers

Mary: Listen to your family member or friend because they’ll tell you what they need, even though sometimes they might not tell you directly. The doctors will give instructions post-treatment, but being with somebody who can care for you is powerful and healing.

Be there for them. Don’t take away their autonomy of how they want to go through this. Be a sounding board. Your fear will probably make you want to fix them quickly.

The lessons are there for both of you. If you can meet them where they are and go through it with them, the experience will have many blessings, even though it doesn’t seem like it on the outside. It could be the best thing.

Be there for them. Don’t take away their autonomy of how they want to go through this.

Mary

Mary Beth: I remember participating in these walks, which were positive experiences and a focus for me for those two years that I was in the thick of it. I could gather my family and friends, and do something positive. It shifted the energy and focus from me to a bigger picture, being a part of a larger community and a larger cause.

It took away a lot of focus on what might be going on with me. I didn’t do it as an escape but more to shift the energy. It worked because my parents were involved. We had family and friends come from out of town. It helps to find the larger connection with others during a difficult time. You’re not alone. You can be connected through challenge.

Mary Beth M. high-grade bladder cancer

Imerman Angels cancer support community

Thank you to Imerman Angels for their partnership. Imerman Angels is here to provide comfort and understanding for all cancer fighters, survivors, previvors, and care partners through a personalized, one-on-one connection with someone who has been there.


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Understand common bladder cancer causes, urine color, symptoms, and treatments as described by real patients.
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Bladder Cancer Series



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Categories
Chemotherapy Coloanal pull-through Colorectal Colostomy ileostomy Patient Stories Radiation Therapy Rectal Surgery Treatments

Stage 3 Rectal Cancer: What James Wishes More People Knew

Rectal Cancer at 31: 20 Years Later – What James Wishes More People Knew

James was just 31 when he was diagnosed with stage 3 rectal cancer (stage 3C/4) in 2003. His story is powerful, emotional, and deeply human, full of hard lessons, honest reflections, and resilience in the face of change. Before jumping into the challenges he faced and continues to face, know that we are talking to him 20 years after his diagnosis. Keep that fact with you as you take in his story. Through his experience, James came out the other side with a new understanding of life, health, and identity.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

For years, James experienced rectal bleeding, which was brushed off as hemorrhoids. Despite reassurances from his primary care doctor and even a gastroenterologist, he trusted his instincts and pushed for a colonoscopy. That test revealed a tumor, and in that moment, James knew. “I have rectal cancer,” he told the nurse, who broke into tears. That moment set the tone for what would become a life-altering experience grounded in self-advocacy, awareness, and emotional strength.

James K. rectal cancer

The treatment for rectal cancer was intense. Chemotherapy, radiation, multiple surgeries, and eventually a permanent colostomy were part of the plan. Initially, doctors tried to preserve rectal function, but complications led James to choose the colostomy to improve his quality of life. It wasn’t an easy decision, but for him, it was the right one. He emphasizes that a colostomy isn’t something to fear; it’s manageable and can absolutely be life-saving.

James speaks openly about the emotional toll rectal cancer took on him. It stripped away his sense of self and forced him to come to terms with a “new normal.” He faced physical challenges like chronic pain, fatigue, and even had to teach himself to self-catheterize. But alongside all that, he also faced a mental and emotional reckoning: accepting help, learning patience, and embracing vulnerability.

What sets James apart is his focus on empowerment and education. He wants others to listen to their bodies, speak up when something feels wrong, and not be afraid to advocate for themselves. For James, survivorship isn’t about going back to how things were. It’s about adapting, growing, and finding meaning in new experiences, even when life looks completely different.

Now, more than 20 years out with no recurrence of rectal cancer, James still lives with side effects of treatment, but doesn’t let them define him. He shares his experience to let others know they’re not alone. You can live a full, meaningful life with rectal cancer. It may look different, but it’s still yours.

Watch James’ video to find out more about his story:

  • James knew something was wrong long before doctors did and he didn’t stay silent.
  • From possible hemorrhoids to a life-saving colostomy, James shares it all.
  • Life after rectal cancer isn’t easy, but James proves it’s possible and meaningful.
  • Discover why James calls his colostomy both difficult and a relief.

  • Name: James K.
  • Age at Diagnosis:
    • 31
  • Diagnosis:
    • Rectal Cancer
  • Staging:
    • Stage 3C/4
  • Symptoms:
    • Occasional rectal bleeding
    • Increasing fatigue
  • Treatments:
    • Chemoradiation
    • Surgeries: coloanal pull-through, temporary ileostomy, ileostomy reversal, permanent colostomy
    • Adjuvant chemotherapy

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

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.


James K. rectal cancer
Thank you for sharing your story, James!

Inspired by James's story?

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Bone marrow transplant Essential Thrombocythemia MPN myelofibrosis Patient Stories Treatments

What Myelofibrosis Taught Demetria About Showing Up for Herself

What Myelofibrosis Taught Demetria About Showing Up for Herself

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

In a heartfelt and powerful conversation, Demetria, a resilient businesswoman, opens up about her experience with myelofibrosis, a rare blood cancer, and how it reshaped her life in the most unexpected ways.

From the outside, she was the glue — supportive, successful, always encouraging others. But behind the scenes, a wave of unrelenting fatigue had crept into her life, something deeper than just being “tired.” It took persistence and self-advocacy for her concerns to be taken seriously by her doctor, and soon, she found herself face-to-face with an oncologist and an unfamiliar word: myeloproliferative neoplasm.

Initially diagnosed with essential thrombocythemia (ET) due to the JAK2 mutation, she navigated treatment with courage, resilience, and a lot of unanswered questions. Her mental strength carried her through the confusion, and her spiritual grounding gave her clarity when facts didn’t. Despite feeling isolated in her diagnosis, she remained inquisitive and proactive, seeking second opinions and trusting her instincts.

Demetria J. myelofibrosis

As her condition progressed into myelofibrosis, the reality hit harder. Her body stopped producing blood cells. She found herself in complete bone marrow failure and urgently needed a bone marrow transplant. What followed was a deeply emotional and spiritual experience marked by weekly blood transfusions, a life-changing phone call from a donor registry, and a renewed sense of purpose.

What stands out is not just her diagnosis, but the quiet power with which she faced it. She never let fear define her. Instead, she leaned into her faith, stayed curious, and used the waiting period to advocate for more African Americans to join the donor registry — a crucial step, as she learned how underrepresented Black patients are in the system.

Demetria’s story isn’t just about myelofibrosis; it’s about mental wellness, feeling seen, and finding peace even in uncertainty. She openly shares the importance of prioritizing health, listening to your body, and staying grounded in what truly matters — family, purpose, and presence.

Now thriving post-transplant, she’s working on launching a nonprofit that supports awareness and self-care for entrepreneurs and communities impacted by myeloproliferative neoplasms. She’s proof that healing is as much about inner peace and support systems as it is about medical treatment.

Watch Demetria’s video to find out more about her story:

  • What happened when a mystery illness was something she never expected?
  • How she turned a cancer diagnosis into a platform for life-saving advocacy.
  • From weekly transfusions to spiritual clarity, how she shifted her perspective.
  • Learn how one woman brought her daughter into her healing process in the most touching way.
  • Why she says “feeling good” means more than “looking good” and how she got there.

  • Name: Demetria J.
  • Age at Diagnosis:
    • 41
  • Diagnosis:
    • Essential thrombocythemia (ET), later progressing to myelofibrosis (MF)
  • Mutation:
    • JAK2
  • Symptoms:
    • Extreme fatigue
    • Stomach pain (later identified as due to an enlarged spleen)
    • Dizziness
    • Shortness of breath
  • Treatments:
    • Spleen-shrinking medication
    • Regular blood transfusions
    • Bone marrow transplant
Demetria J. myelofibrosis

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


I started experiencing extreme fatigue. When I would get home… I wanted to go straight to bed.

Introduction

Those closest to me would probably say that I’m their biggest cheerleader. I have been gifted with the ability to encourage people and give them a little extra boost when they may feel like they can’t do something or are going through a certain situation. I have a unique ability to give a different perspective on things. A lot of times, I’ve heard people even describe me as a silent strength. Even though I can speak to people, I’m not very vocal. I may not talk a lot, but when I do talk, I use my words in a meaningful way.

Demetria J. myelofibrosis
Demetria J. myelofibrosis

Red Flags I Noticed Before My Diagnosis

I have been a business owner for over 15 years. I was also working with an organization that works with kids, trying to get them into high school. On top of those, I was doing a lot of traveling. I was busy all the time.

I started experiencing extreme fatigue. When I would get home, I would normally tend to our daughter, who was very young at the time. I would fix dinner and hang out around the house. Instead, I wanted to go straight to bed, and that’s why I knew this was a different kind of tired. I didn’t even have the energy to do anything except go straight to bed.

When it was time for my routine check-up with my physician, I mentioned to him that I’ve been tired. At first, he brushed it off. He said, “Well, you do a lot.” I told him it was a different kind of tired. He said, “We’ll run some extra blood work to check your nutrient levels. Maybe you’re low in B12 or something,” but that was not the case.

After a couple of days, while I was driving, the doctor’s office called. The nurse said, “Your blood work came back, and your doctor is sending you to an oncologist.” I said, “Wait. Hold on. Let me pull over.”

I pulled over into a parking lot and said, “Did I hear you correctly? You’re referring me to an oncologist?” She said yes. I asked why. She said, “Your platelet counts were extremely high. They were in the millions.” I asked her what that meant. She said, “We’re not quite sure. That’s why he’s referring you to an oncologist.” The journey began from there.

I took the medication for about a year and a half, and started feeling much better, to the point where my numbers started leveling out.

Meeting My First Oncologist

When I got home, I went online, like most people do. I searched, “high platelets, what does that mean?” It gave me different things. The first thing most oncologists want to do is a bone marrow biopsy to figure out what’s going on in the marrow. She said, “I think this is what it is.”

One of the things that was a little alarming for me at that time was when she said, “You’re fairly young and most of the time, we don’t see this present in people of your age.” In that moment, I didn’t feel like there was more that she was willing to do.

One of the things she asked was, “Do you and your husband still want to potentially have another child?” I said yes because at that time, I was in my mid-30s. I didn’t feel like she wanted to explore any other options because I was a unique case.

hands on laptop
doctor

Getting a Second Opinion

I ended up at Emory Hospital in Atlanta. At the time, the oncologist there felt as if I would do better on another medication that was fairly new to the oncology world. It had recently come out of a clinical trial, but it was showing very positive results. He said, “I think you would fare better on this,” so that’s what I did.

I took the medication for about a year and a half, and started feeling much better, to the point where my numbers started leveling out. The platelet counts had gone down to the normal range. That was one of the things that he was hoping for.

The clinical trial findings had shown that some individuals were able to get off the medication and their bodies were able to sustain themselves, and that’s where I thought I had ultimately landed until the next journey began.

No one could give me an answer. I was feeling frustrated because I didn’t understand how this could happen.

My Reaction to the Essential Thrombocythemia Diagnosis

When I was young, my mother had leukemia. She was with me at the doctor’s appointment that day, and our initial thought process was whether it was hereditary and potentially came from her. They said it typically wasn’t how it works. I found out that there was a JAK2 mutation in my blood that was causing the essential thrombocythemia (ET) to happen.

I had a lot of questions. I was very inquisitive. How does this happen? How do you get the mutation? It was a little frustrating because I couldn’t get any direct answers. Ultimately, they landed on I was born with this mutation.

If I were born with this mutation, why did it express itself at this point in my life? What made it express itself? If it’s been in my DNA this entire time, why did it express itself at this time? No one could give me an answer. I was feeling frustrated because I didn’t understand how this could happen.

Demetria J.
Variety of chemotherapy drugs in bottles

Educating Myself on Treatment Options

In your mind, you just want to survive and get better. I didn’t lean too heavily into what the complications could be. I know that if I read too much into all of those things, it could create a roadblock for me because my mind would shift to these other things, so I didn’t want to go down that road.

Our insurance wouldn’t pay for the medication. Thankfully, we found an organization that provided financial assistance. The medication was over $1,000 a month, but even so, my husband and I were prepared to do whatever we needed to do to afford it so that it could improve my quality of life.

Our insurance wouldn’t pay for the medication… my husband and I were prepared to do whatever we needed to do to afford it so that it could improve my quality of life.

Possibility of Disease Progression

There wasn’t any tracking, but I was made aware that there could potentially be a progression of the disease. Once I was a year out and feeling well, everything seemed okay. Honestly, it never even crossed my mind that something worse could come down the pipe. I went back to living life and jumping into entrepreneurship and my family. I wasn’t looking back.

When I Started Feeling Symptoms Again

Once again, fatigue was the biggest presenting symptom. I also experienced stomach pain. Looking back, that was my enlarged spleen that was causing the pain in my stomach, but I thought they were two isolated things. Neither one of them meant that I had cancer. I thought they were independent of each other, so I kept going on and diagnosing myself of what I thought was going on until it became too much to bear.

stomach pain

Feeling Worsening Symptoms

I developed dizziness. About two weeks before the actual diagnosis, I started getting dizzy. Two main events made me think that something was going on. My husband and I were at a track and field day with our daughter. We had to walk quite a distance from the parking lot to the bleachers, and I was struggling with my breathing and dizziness.

We were towards the end of the year, so I wanted to buy my daughter’s teacher a thank-you gift. I was in line at the store and felt like I was going to pass out. I told the cashier I was going to leave my stuff and go to the car for a minute. I took dimenhydrinate because I thought I was going to have vertigo. I was sitting in the car for about 10 minutes and thought I’d try again.

I went back into the store and I seemed to be okay. I get back in line then I start to feel it again. I jokingly said, “I’m in a big hurry. I’m not trying to rush you, but can we speed it up?” She was extremely nice; she was talking and taking her time, but I felt like I was about to pass out.

I got back in the car, called my husband, and told him I might have to go to a walk-in clinic or somewhere the following day because I was still getting dizzy.

‘All your blood levels are dangerously low. I don’t even know how you’re functioning.’

Later on, I had a sharp pain in my stomach again, so I thought something was up. The next morning, I get up to find out what time the clinic opens because I want to be the first person in.

That morning, I wasn’t dealing with any dizziness. It was the pain in the stomach that was presenting more that day. I thought I might have bacteria in my stomach. I go to the clinic and explain the symptoms to the doctor. She said, “We’ll test you for H. pylori and make sure you don’t have that, but let’s run some blood work to rule out anything,” which was the best thing that she could have ever done for me.

She called me the next day and said, “Your labs came back and all your blood levels are dangerously low. I don’t even know how you’re functioning. You need to go to the emergency room right now. They’re probably going to give you a blood transfusion. I’m emailing you your lab work so you can show it when you get there. They will figure out what’s going on because I’m not quite sure, but something’s going on.”

blood test tubes
Demetria J. myelofibrosis

Going to the Emergency Room

My husband brought me to the ER and my mom drove up from Georgia to be with me. Thankfully, they were very attentive when I showed them the lab work that the doctor emailed me and they immediately took me back. They initially went down the track of gastroenterology. They said, “We’re going to draw some more blood to see for ourselves.”

After the lab work, the doctor came back in and blatantly said, “No, this is cancer.” My mom, my husband, and I were looking at each other. One of the oncologists whom I previously saw was on call at the ER that day. When the doctor on call was saying that this was cancer, she said his name and when I told her I knew him, she came to get him. He comes in, remembers me, and takes over my care completely.

Finding Out I Have Myelofibrosis

He transferred me to another hospital that he felt would be able to serve me better. He ordered the bone marrow biopsy. He came back and said, “It’s myelofibrosis.” He immediately put me on the national donor list. He informed me that he feels like I need to have a bone marrow transplant to live.

I was in complete bone marrow failure at that point. My body was not making any blood cells at all and that’s why my blood levels were so dangerously low. Every day, old cells die off and your body generates new cells, but mine were dying off and nothing was being generated. Until they found me a donor, I was going to have regular blood transfusions to keep my body going.

They noticed how calm I was. There’s no other way to describe it except for the peace of God.

My Reaction to a New Cancer Diagnosis

Surprisingly, I was very calm. I ended up staying in the hospital for five days after going to the ER. I called family and close friends, and when they came to visit, they noticed how calm I was. There’s no other way to describe it except for the peace of God. I had a peace that I only know came from Him because I knew that it was serious, but it didn’t rattle me. It didn’t make me feel hopeless. I felt that I’ve been through ET, so I can make it through this one.

One night, when I was in the hospital by myself, I was lying in bed and talking to God. I was saying, “Okay, we’re going through this,” and I feel Him say to me, “You’re not going to die. It’s bigger than you.” I didn’t quite understand what it meant in that moment, but it gave me something to hold on to. Even at times when I felt like I was going to die, I said, “Nope. He said I’m not going to die, so I’m not. It’s going to be okay.”

praying hands
bone marrow aspiration

My Thoughts on Needing a Bone Marrow Transplant

When they said they were putting me on the national donor list, I thought it was great until I had a visit with the transplant surgeon. He said, “We are very hopeful that you can get a donor, but African Americans make up the lowest percentage on the national registry. Because of that, your chance of finding a donor is a longer stretch. It could potentially be two to three years because we don’t have enough pool of people to pull from.”

That stopped me in my tracks because you have this hope that you can get a donor, but you find out the chances are very slim based on the statistics. I asked him, “What can I do to help? How do we get more African Americans or Blacks to sign up to get on the registry?” He said, “Be The Match. You would probably have to contact them,” and that’s exactly what we did.

We contacted them to figure out how to hold donation drives to increase the number of individuals on the registry. That became part of my focus. Honestly, I think that helped to keep me from thinking about the other things because my focus shifted. How can we increase the number of African Americans on the registry so that if another person has this diagnosis, they don’t have to face the fact that there are only 29% of people to pull from?

To hear that they found me a donor was unbelievable.

Finding a Match

By God’s grace, two and a half months later, I received a phone call. My husband and I were sitting on the couch. You know how sometimes you don’t answer unknown numbers because you think it’s spam? By this time, I’m answering every phone call regardless of whether I know the number or not, because I don’t know who it could be.

An unknown number called and I answered it. She confirmed that it was me on the phone and said, “I think we have potentially found a donor for you.” My mouth flew open. I put her on speakerphone so my husband could hear her.

It was a surreal moment. In my head, I had two to three years. To hear that they found me a donor was unbelievable.

woman holding phone
blood transfusion

Undergoing Regular Blood Transfusions

A year prior, my oncologist had moved to where I lived, so he knew all of the transplant surgeons and was in direct contact with them. They were walking him through my protocol. They immediately wanted to shrink my spleen, so they put me on a medication to help shrink the spleen and ease some of the symptoms from myelofibrosis. That was a big help in addition to going every 7 to 10 days for transfusions.

The transfusions improved my quality of life. Typically, the day after a transfusion, I would wake up and feel better. Their goal was to keep my hemoglobin level above seven, which is still low, but I felt wonderful coming from a four.

When I would go see the oncologist, they would check my blood levels and send me to have a transfusion. I pretty much knew that I was going to get a transfusion every week. I made friends with all the staff. It wasn’t as sad as people may think because even though my life revolved around being in a doctor’s office or a hospital every week, I still got to interact with people. This was my new normal.

We were praying that my donor wouldn’t think it’s too much and back out.

Preparing Myself for the Bone Marrow Transplant

My husband and I prayed for my donor because they say potential until you get close enough to where everything is solidified. Potential means that they’ve located the donor and reached out to them, and they agreed, but there are several more steps that the donor has to go through.

I didn’t know that all of the pre-testing that I went through, my donor also went through, so I thought that the donor was a selfless human being to go through all of that for a stranger. We were praying that my donor wouldn’t think it’s too much and back out.

Once we got close enough to the point where it’s final and I’m having the transplant, my hair was extremely long. Our daughter was 10 years old at the time, so she didn’t fully understand everything because we wanted to shield her from some of the details. I told her, “Mommy’s going to lose her hair.” She was saddened by that because she loved to play with my hair.

Demetria J. myelofibrosis
Demetria J. myelofibrosis

I thought, “How do I bring her into a part of this?” I allowed her to cut my hair before going to have the transplant. We recorded it and shared it on social media. It had a huge number of views and shares. I began to understand what God meant when He said it was bigger than me. I met so many incredible people through social media.

I brought her into it so that she could feel like she was a part of it. I knew that I was going to lose my hair. It softened the blow a little bit to see a shorter amount leave your head than long strands. Mentally, that’s how I prepared myself for losing all my hair. Outside of that, I decided I have to be present every day and show up every day ready for the journey.

My experience taught me to reprioritize my life… If you don’t take care of yourself, then nothing else can thrive.

My Life After Transplant

My experience taught me to reprioritize my life. I was a busy bee. I was everywhere doing everything. All good stuff, but sometimes, something like this stops you in your tracks. It completely slowed me down. I had time to reflect on what things are most important.

When you’re lying in bed, you’re not thinking about customers; you’re thinking about your family and your loved ones. They’re most important to me. It redefined how I show up and what matters to me the most. How am I going to live my life from this point forward? It changed everything.

It’s so funny because when I see people out, they say, “You look so good!” I always say, “Thank you, but I feel so good.” Feeling good is better than looking good. They always laugh because I appreciate that I look good, but I appreciate most that I feel good.

I didn’t even know that this is how I was supposed to feel because it became a normal feeling, the way I previously felt. I thought that what it was like as a busy person, not understanding fully that it wasn’t having a good quality of life, even though externally you had a lot of good things. I succumbed to the fact that that’s how you feel when you’re busy. I’m amazed because I didn’t even know that this is how I was supposed to feel.

Demetria J. myelofibrosis
bone marrow donor drive

Educating People About Myeloproliferative Neoplasms (MPNs)

I’m hoping to create a nonprofit where I can continue some of the efforts that we were doing. I paused the transplant to regain my health and get things in order.

Now I feel like I’m at a place where I can embark on something a little bit bigger. I do think it’s important, especially around entrepreneurship and business owners. A lot of us wear so many hats that tons of us do exactly what I did. We keep going. We keep showing up for our businesses and our customers, but we don’t necessarily show up for ourselves.

I want to work on how that looks, where I can encourage business owners and entrepreneurs. I understand the hustle. I understand that a lot of times, that’s what it takes to get your business off the ground. But you are the most valuable person in that thing. If you don’t take care of yourself, then nothing else can thrive.

Take a step back and look at what you’re doing for yourself.

My Advice About Paying Attention to Your Body

It’s not selfish to take care of yourself. The first law of nature is self-preservation, which we violate all the time. We put other things and other people ahead of ourselves. If we aren’t well, then we can’t be well to anybody else.

When you shift that perspective about life and how you show up, then you will prioritize your health. You will prioritize being good to yourself. We’re all guilty of that to some degree, but I hope that in sharing my story, it would inspire people to look beyond what it is that you’re doing for others, take a step back, and look at what you’re doing for yourself.

A lot of times, when I wanted to go to doctor appointments and do certain things, I would say, “Oh, but my clients are going to be so disappointed if I have to cancel them.” If I’m not here, that’s going to be more devastating than me having to cancel on her. Look at life a little differently. Are you taking care of yourself? Take care of yourself first.

Demetria J. myelofibrosis
Demetria J. myelofibrosis

My Advice About the Mental and Emotional Side of a Cancer Diagnosis

You have to remain hopeful. Hope is what you can hold on to when everything else feels like it’s slipping through your fingers. Hope anchors you to the possibility of living on the other side of this thing. When you lose hope, then you have nothing. Hope is the foundation.

People say, “How do you have hope when it looks so daunting?” I had to shift to gratefulness. Gratefulness was another key piece that helped me to remain hopeful.

Nobody’s grateful for a diagnosis, but I was grateful that there was a solution at hand. I was grateful that there were people who were willing to do whatever they needed to do to help me on my journey. When you begin to be grateful amid the storm, that’s where hope can start to shine its head a little bit.

It could have been a lot worse. I don’t know how worse it could get, but it could have been. Hopefulness is what anchors you to the possibility of more.

Stress can be a silent killer as well. Stress probably undergirds most diseases and diagnoses. Make sure that as you navigate through life, you check on yourself. Am I carrying too much? Am I worrying too much?

With the current state of things, people are worried about whether they can afford food or housing. At the end of the day, your life is the most important thing. Even when things are tight and it feels like you don’t have enough, the worry and the stress will do more than not having enough.

Remain hopeful. Hope is what you can hold on to when everything else feels like it’s slipping through your fingers.


Demetria J. myelofibrosis
Thank you for sharing your story, Demetria!

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More Myelofibrosis Stories

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Categories
Androgen Deprivation Therapy (ADT) External Beam Radiation Therapy (EBRT) Hormone Therapies Patient Stories Prostate Cancer Prostatectomy (radical) Radiation Therapy Surgery Treatments Zytiga (abiraterone)

How a PSA Test & Peer Support Helped Rob Face Prostate Cancer

How a PSA Test and Peer Mentoring Helped Rob Face Stage 4 Prostate Cancer

Rob hadn’t expected much from the PSA test (prostate-specific antigen test), it was ordered by his urologist “just in case” after a visit for erectile dysfunction. But that simple test changed everything. His PSA level was 44, far outside the normal range. What followed was a diagnosis of stage 4 prostate cancer, news that left Rob reeling.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

A biopsy soon confirmed the worst: prostate cancer, and eventually, that it had spread to his lymph nodes, qualifying it as stage 4. Rob’s world turned upside down. He immediately assumed the worst, and even started to prepare end-of-life documents. One oncologist bluntly told him there would be no cure.

Rob M. stage 4 prostate cancer

The emotional weight was hard to carry, and Rob admits it took a full year of therapy even to begin managing the anger, fear, and grief that came with his diagnosis. Therapy helped him find clarity amid the emotional chaos and process the many losses he faced physically, psychologically, and relationally.

Rob describes the emotional roller coaster vividly, but through it all, he clung to four words: faith, hope, gratitude, and acceptance. These weren’t just abstract ideas; they became his emotional compass. Faith helped him share the load with something bigger than himself. Hope, even when it flickered, was always present. Gratitude helped him stay grounded. And acceptance, while the hardest, was the most healing.

Support came in many forms, but what stood out most to Rob was one-on-one connection. Through Imerman Angels, a nonprofit that matches individuals with similar cancer experiences, he found a mentor who truly understood the emotional weight of stage 4 prostate cancer. While group support has undeniable value and can foster community, Rob felt that having someone walk beside him on a more personal level offered the space to process his emotions more deeply. Today, he pays it forward by mentoring others, aiming to uplift and empower without overwhelming.

While he experienced lasting side effects — from incontinence to penile shrinkage — Rob emphasizes that honest, proactive care could have prevented much of the trauma. Still, he’s found new ways to build intimacy, especially through therapy with his wife. By sharing his story, he wants others to learn from his experiences, ask the hard questions, and not face cancer alone.

Watch Rob’s video to find out more about his story:

  • The PSA test that changed everything, even though Rob almost skipped it.
  • Why Rob thought he was going to die, and what happened next, which surprised everyone.
  • The side effect doctors didn’t warn Rob about and why it still affects him today.
  • How four simple words, faith, hope, gratitude, and acceptance became Rob’s lifeline during stage 4 prostate cancer.
  • From anger to acceptance: How he learned to live again.

  • Name: Rob M.
  • Age at Diagnosis:
    • 65
  • Diagnosis:
    • Prostate Cancer
  • Staging:
    • Stage 4
  • Symptoms:
    • Burning sensation while urinating
    • Erectile dysfunction
  • Treatments:
    • Surgeries: Radical prostatectomy, artificial urinary sphincter (to address incontinence), penile prosthesis
    • Radiation therapy (EBRT)
    • Hormone therapy: androgen deprivation therapy (ADT)
Rob M. stage 4 prostate cancer
Rob M. stage 4 prostate cancer
Rob M. stage 4 prostate cancer
Rob M. stage 4 prostate cancer
Rob M. stage 4 prostate cancer
Rob M. stage 4 prostate cancer
Rob M. stage 4 prostate cancer

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

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.


Rob M. stage 4 prostate cancer
Thank you for sharing your story, Rob!

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More Prostate Cancer Stories

Jamel M. prostate cancer caregiver

Jamel Martin, Son of Prostate Cancer Patient



“Take your time. Be patient with the loved one that you are caregiving for and help them embrace life.”
Joseph M. prostate cancer

Joseph M., Prostate Cancer



When Joseph was diagnosed with prostate cancer, the news came as a shock and forced him to face questions about his health, future, and faith. He shares how he navigated his diagnosis, chose robotic surgery, and learned to open up to his loved ones about his health.
Rob's PSA test for prostate cancer story

Rob M., Prostate Cancer, Stage 4



Symptoms: Burning sensation while urinating, erectile dysfunction

Treatments: Surgeries (radical prostatectomy, artificial urinary sphincter to address incontinence, penile prosthesis), radiation therapy (EBRT), hormone therapy (androgen deprivation therapy or ADT)
John B. stage 4A prostate cancer

John B., Prostate Cancer, Gleason 9, Stage 4A



Symptoms: Nocturia (frequent urination at night), weak stream of urine

Treatments: Surgery (prostatectomy), hormone therapy (androgen deprivation therapy), radiation


Tom H., Prostate Cancer, Stage 2



Symptoms: None

Treatment: Surgery (prostatectomy)
Eve G. feature profile

Eve G., Prostate Cancer, Gleason 9



Symptom: None; elevated PSA levels detected during annual physicals
Treatments: Surgeries (robot-assisted laparoscopic prostatectomy & bilateral orchiectomy), radiation, hormone therapy

Lonnie V., Prostate Cancer, Stage 4



Symptoms: Urination issues, general body pain, severe lower body pain

Treatments: Hormone therapy, targeted therapy (through clinical trial), radiation
Paul G. feature profile

Paul G., Prostate Cancer, Gleason 7



Symptom: None; elevated PSA levels
Treatments: Prostatectomy (surgery), radiation, hormone therapy
Tim J. feature profile

Tim J., Prostate Cancer, Stage 1



Symptom: None; elevated PSA levels
Treatments: Prostatectomy (surgery)

Mark K., Prostate Cancer, Stage 4



Symptom: Inability to walk



Treatments: Chemotherapy, monthly injection for lungs
Mical R. feature profile

Mical R., Prostate Cancer, Stage 2



Symptom: None; elevated PSA level detected at routine physical
Treatment: Radical prostatectomy (surgery)

Jeffrey P., Prostate Cancer, Gleason 7



Symptom: None; routine PSA test, then IsoPSA test
Treatment: Laparoscopic prostatectomy

Theo W., Prostate Cancer, Gleason 7



Symptom: None; elevated PSA level of 72
Treatments: Surgery, radiation
Dennis Golden

Dennis G., Prostate Cancer, Gleason 9 (Contained)



Symptoms: Urinating more frequently middle of night, slower urine flow
Treatments: Radical prostatectomy (surgery), salvage radiation, hormone therapy (Lupron)
Bruce

Bruce M., Prostate Cancer, Stage 4A, Gleason 8/9



Symptom: Urination changes
Treatments: Radical prostatectomy (surgery), salvage radiation, hormone therapy (Casodex & Lupron)

Al Roker, Prostate Cancer, Gleason 7+, Aggressive



Symptom: None; elevated PSA level caught at routine physical
Treatment: Radical prostatectomy (surgery)

Steve R., Prostate Cancer, Stage 4, Gleason 6



Symptom: Rising PSA level
Treatments: IMRT (radiation therapy), brachytherapy, surgery, and lutetium-177

Clarence S., Prostate Cancer, Low Gleason Score



Symptom: None; fluctuating PSA levels
Treatment: Radical prostatectomy (surgery)

Categories
Breast Cancer Hormone Therapies Mastectomy Oophorectomy Patient Stories Surgery Treatments

How Hormone Replacement Therapy Helped Honey Feel Like Herself Again After Breast Cancer

How Hormone Replacement Therapy Helped Honey Feel Like Herself Again After Breast Cancer

When Honey, a talented artist from Tallahassee, Florida, discovered a lump in her breast, it wasn’t during a routine checkup — she hadn’t had a mammogram in 15 years. In fact, she wasn’t one to visit doctors at all. But something told her to pay attention, and she did. That gut instinct led to a breast cancer diagnosis on her birthday in 2020, which was a shock but also a moment of clarity. As a mom, wife, and creative professional, Honey immediately thought that she didn’t have time for this and took quick, decisive action.

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Honey opted for a bilateral mastectomy, skipping chemo and radiation because she felt strongly that they weren’t right for her. Her reconstruction process was full of surprises, from unexpectedly larger implants to feeling sidelined in decisions about her own body. Still, she handled the process with humor, especially during a hilarious family moment when her 98-year-old grandmother loudly asked about her new breast size. But it wasn’t all laughs. Honey felt unheard during the surgical process and wishes more women knew they could (and should) speak up more.

Honey H. stage 2 breast cancer

What Honey didn’t see coming was the long-term impact of surgical menopause after her oophorectomy. Doctors told her it was “no big deal” and necessary to reduce the chance of breast cancer returning. But what followed were debilitating symptoms: nerve pain, insomnia, arm tingling, weakness, and a misdiagnosis of rheumatoid arthritis. Eventually, Honey connected the dots — her body was starved of hormones. She dove into research, discovering thought leaders and the benefits of hormone replacement therapy (HRT) for breast cancer survivors.

Although it took time and persistence, Honey found a local doctor willing to prescribe HRT. That decision changed everything. Her pain subsided, her energy returned, and she felt like herself again — creative, vibrant, and empowered. Now, Honey urges others to question recommendations, understand available treatment options, and advocate fiercely. She believes that doctors often stay in their lane, and it’s up to patients to see the whole picture.

Honey’s story isn’t just about surviving breast cancer; it’s about reclaiming her health, her identity, and her joy. She encourages others not to be silenced, not to feel guilt, and to forgive themselves for what they didn’t know at the time. With hope, gratitude, and light, she continues to paint and share her truth.

Watch Honey’s video to find out more about her story:

  • Discover how her intuition led to a life-changing diagnosis on her birthday.
  • Why Honey said “no” to chemo and radiation, and what she did instead.
  • The surprising truth she uncovered about oophorectomies and hormone loss.
  • What no one tells you about breast reconstruction and how Honey handled it.
  • How hormone replacement therapy gave Honey her energy, art, and identity back.

  • Name: Honey H.
  • Age at Diagnosis:
    • 48
  • Diagnosis:
    • Breast Cancer
    • HER2-, PR+, ER+
  • Staging:
    • Stage 2
  • Symptom:
    • Lump in the right breast
  • Treatments:
    • Surgeries: Bilateral mastectomy with reconstruction, lymph node removal, oophorectomy
    • Hormone replacement therapy (HRT)
Honey H. stage 2 breast cancer
Honey H. stage 2 breast cancer
Honey H. stage 2 breast cancer
Honey H. stage 2 breast cancer
Honey H. stage 2 breast cancer
Honey H. stage 2 breast cancer
Honey H. stage 2 breast cancer

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

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.


Honey H. stage 2 breast cancer
Thank you for sharing your story, Honey!

Inspired by Honey's story?

Share your story, too!


More Breast Cancer Stories

Nicole B. triple-negative breast cancer

Nicole B., Triple-Negative Metastatic Breast Cancer, Stage 4 (Metastatic)



Symptoms: Appearance of lumps in breast and liver, electric shock-like sensations in breast, fatigue

Treatments: Chemotherapy, surgeries (installation of chemotherapy port, mastectomy with flat aesthetic closure), targeted therapy (antibody-drug conjugate), hyperbaric oxygen therapy, lymphatic drainage
Marissa S. breast cancer

Marissa T., ILC, Stage 4, BRCA2+



Symptoms: Appearance of lump in right breast, significant fatigue, hot flashes at night, leg restlessness leading to sudden, unexpected leg muscle cramps

Treatments: Chemotherapy, hormone therapy, PARP inhibitor, integrative medicine
Doreen

Doreen D., IDC, Stage 2A, Triple Positive



Cancer details: IDC is most common kind of breast cancer. Triple positive = positive for HER2, estrogen receptor (ER), progesterone receptor (PR)
1st Symptoms: Lump in left breast
Treatment: Neoadjuvant chemotherapy (TCHP), lumpectomy, radiation
Christine E. feature profile

Christine E., Stage 3 Triple-Positive



Initial Symptom: Lump in left breast
Treatment: Chemotherapy (AC-T), lumpectomy, radiation