Becoming My Own Advocate While Living With a Rare Cancer: A Patient Perspective

April 27, 2023
Ruth Fein Revell

Ruth Fein Revell is a health and science writer, and through her work and experience of living as a cancer thriver, she is a patient advocate. Her personal mission is to help inform others, particularly individuals with rare cancers, by reporting on the latest laboratory and clinical research and the patient experience. She has written for multiple regional and national media outlets over her 30+-year career, including The New York TimesShe also hosts patient webinars with top rare cancer specialists. You can follow her on Twitter. View Ms. Fein Revell’s disclosures.

I was 38 years old and raising 2 young boys when I was told I had a rather benign rare blood disorder called essential thrombocythemia (ET). That was nearly 30 years ago.

In 2008, the World Health Organization (WHO) reclassified ET as a cancer. It fell under an umbrella group of uncommon blood cancers called myeloproliferative neoplasms (MPNs), which also includes polycythemia vera (PV) and myelofibrosis (MF). Though nothing had changed, suddenly, I was facing the "Big C" diagnosis. They were 6 letters that came with a very heavy weight.

My semi-annual appointments changed from a hematologist to a hematology/oncology specialist. I found myself in a waiting room chair at a regional cancer center, feeling very self-conscious about my waist-long, wildly curly hair. People all around me had a "care partner" with them. The need for any type of emotional support had never even crossed my mind. Until that day, I had a disorder, not a chronic cancer, whatever that even meant. I was prescribed a simple aspirin a day and left with a "watch and wait" approach to my treatment plan.

At this point, my bone marrow produced too many platelets, which are the blood cells that control clotting to prevent excessive bleeding. This is the basic definition of ET. It didn't stop me from fully living my life or even from running the Dublin Marathon 5 years later. It was, however, responsible for debilitating headaches, bone pain, and even a minor transient ischemic attack (TIA), sometimes referred to as a mini stroke. But the connection wasn't made for a decade.

Eventually, the ET caused dangerous, painful clots in my deep veins that are part of the liver system. After several days in the hospital, I was sent home on prescription anticoagulants, or blood thinners, which remain a part of my daily breakfast.

Once again, it was easy for me to dismiss that I had a chronic cancer. Then, in what seemed like a random twist, my bone marrow began to make too many red blood cells, while my previously proliferative platelet counts leveled off. This was now 2016, and the diagnosis was changed to PV, which comes with the opposite risk to clotting: abnormal bleeding.

I was prescribed a 30-year-old oral chemotherapy drug and phlebotomies as needed, which is the process of periodically removing blood to reduce the excess red blood cells. It is similar to a blood donation, but the blood goes into a collection bag disposed of with other medical waste.

These efforts were intended to minimize my risks. Still, when I had 8 inches of my colon removed for early colorectal cancer in 2018, the surgery landed me in the intensive care unit (ICU) for nearly a week with a major gastrointestinal bleed, followed by months of healing.

As with many rare diseases, I endured the process of misdiagnosis and treatment recommendations that were not always up to date. But when my colon surgery resulted in me being a “special guest” in the ICU, I began to take my health and its management into my own hands. I sought out an MPN specialist with the help of my local hematologist/oncologist, and I began a path toward understanding the latest thinking about MPNs, including new treatment options. Advocating for myself was now as essential as ever.

Learning how to advocate for myself

My earlier experiences can be typical for many people with cancer, particularly those with a rare disease. I had a great oncologist with a specialty in diseases of the blood who I trusted—literally with my life. But at the time, research into MPNs had exploded, and I needed to explore what the latest and potentially better treatment options might mean for me. So, off I went from upstate New York to New York City, where there was one of the first centers for MPNs in the world.

There, it was determined that the disease had progressed to myelofibrosis, which is considerably more rare than ET or PV. I was taken off the drugs I was on in order to switch to a more appropriate treatment. Within weeks, the hallmark extreme fatigue made it difficult for me to walk up the street without stopping to hold onto a lamppost. There was significant scar tissue, or fibrosis, in my bone marrow. It appeared to be getting in the way of the formation, life cycle, and function of my healthy blood cells. 

Ultimately, I entered a clinical trial, and I continue to thrive 3 years later.

Changing where I received my care may seem like the first major decision I made during my cancer experience. It was, in fact, the most critically important one. But learning to advocate for myself began several months earlier when I was in my regional medical center’s ICU.

"No, I don't want to take that high blood pressure drug,” I said as it was being delivered in a white cup with little explanation other than that the doctor had prescribed it. “I will ask my specialist if it is necessary," I said from my bed. It’s not that the hospital doctor was mistaken. They had looked at treating the high blood pressure in my liver system—a side effect of the residual clots—similarly to treating general high blood pressure. But, in fact, my overall blood pressure was abnormally low, and taking that medication could have caused other serious problems.

"No, I don't need chemical or psychological assistance to help me with my withdrawal symptoms,” I said during my first few hours in the hospital. “The clot blocking my portal vein is associated with my MPN, not cirrhosis of the liver, despite the fact that it is most often seen in alcoholics," I informed the very skilled ICU nurse.

"Yes, I know you stick people dozens of times every day, but I have tiny veins that wiggle and roll and are difficult to get blood from, let alone putting in an IV,” I said. After 8 tries, I got what I asked for: an intravenous (IV) team and a temporary direct line of access to a vein so I didn’t have to endure multiple sticks throughout the day.

And so it went.

Finally, this conversation came at a follow-up visit with my local hematologist/oncologist: “I know that this decades-old chemotherapy drug is the standard care for my diagnosis, but it destroys healthy blood cells, not just the cancerous ones. Isn't there something better that is more targeted toward the cells we want to kill?” This was my last visit before heading to the specialists at the MPN center 3 hours south.

Navigating a rare cancer diagnosis

What I have learned along the way about navigating life with a chronic rare cancer and becoming your own advocate is fairly simple:

  1. Educate yourself. You don't have to read scientific papers. Just learn from credible patient-oriented sources, including the numerous webinars and physician interviews available from reliable experts. You can also read through publications provided by your care team and by non-profit organizations that specialize in your specific cancer diagnosis.

  2. Learn from other patients who have been where you are now. You can gain a lot from their experience, knowledge, and advocacy through local support groups or trustworthy online patient videos.

  3. If something doesn't sound or feel right, ask questions. Even if it does sound right but you don't fully understand it, ask questions until you are clear enough that you could explain it to a 10-year-old child.

  4. Know that everyone dealing with cancer is different. There is no right or wrong way to live with cancer. If it helps to share your situation with all of your neighbors and Facebook friends, then do it. If you prefer to keep your diagnosis, treatment, fears, and other feelings between you and your family and close friends, that is your choice. And keep in mind that your preferences may change along the way—that’s OK, too.

  5. You have the right to privacy. If you choose to keep your cancer and treatment updates more private, let people in your close circle know your wishes.

  6. You can make your own rules. Your cancer doesn't have to take over your entire identity. Want to speak only about happy things when you have company? Tell them. Want to speak about your cancer journey and how you feel only when initiated by you? Tell them.

Most importantly, remember that you are not your cancer. You are you, who happens to have cancer. Allow yourself to learn, advocate for yourself, and share your story as it feels right for you.


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