To radiate, or not to radiate… (Part 1)

As many of you know, I’ve struggled with my decision regarding whether or not to pursue radiation post-chemo. The doctor initially told me I’d have six cycles of ABVD (two chemotherapy treatments a cycle, 12 treatments total) followed by two months of radiation. This was back when I had very little personal experience medically and took everything doctors said at face value. Now, having had an early clear pet-scan, I was questioning why radiation was still the obvious next step. To me, not a doctor, I didn’t understand what the point was in pursuing targeted therapy (radiating specific areas) if my whole body was supposedly “free of active disease”. What would they be targeting? It didn’t help that my oncologist, like I’ve mentioned before, didn’t make me feel like she was exactly tuned into my specific case but rather, going through the motions. I never thought of myself as someone that questions authority figures and researches extensively but I have definitely gotten to that point in my life, as I’ve now had much more interactions with the medical field and know that many important things fall through the cracks; that much of what appears to be an objective field, is in fact very subjective.

So, after discussing it with my oncologist, I (as well as Paul, who went to the appointments with me to give me a second brain to process the information) felt really unsettled and unsure of pursuing radiation. I waited to solidify a decision until going to the radiologist referral, as they are a specialist in the field and have (or theoretically should) more knowledge regarding the pros and cons, reasons for pursing radiotherapy, etc. Unfortunately, this left us feeling even MORE unsettled. My gut had been telling me that more medicine, more treatment wasn’t necessarily more HEALING for my body but the radiologist really stressed the importance of doing everything to get my cure rate up, as a relapse of lymphoma is much less desirable than getting a second cancer. Yeah, I said it. Second cancers are better than lymphoma returning! Do you see my reason for not knowing which path to choose? The concept of choosing the lesser of two evils rings very true for my situation. Unfortunately, it wasn’t even a clear cut decision on which was was the lesser. Hence my confusion.

I don’t remember all of the exact statistics but I was initially told my cure rate would be about 90% after just chemo, and about 95% after radiation. My concern regarding radiation was entirely about the long term risks, which I was told would include a 15-20% increase in chance of breast cancer, 30% chance of developing thyroid issues that would necessitate removal of my thyroid and therefore require me to take medicine daily for the rest of my life, as well as an unspecified increased risk in throat cancer, thyroid cancer, lung cancer, cardiovascular disease and who knows what else, the list was long. For just a 5% increase in cure rate, this seemed like an awful lot of risk to take on. I asked my radiologist for some specific statistics regarding my particular diagnosis but he wasn’t very aware of the current research. The best thing he did was provide me with a second opinion referral to his colleague on the main Duke campus (I’ve been going to Duke Raleigh for treatment as main Duke is in Durham). As Paul put it, it felt like we were asking a car salesman why we should buy a car so I wasn’t positive this second opinion radiologist would give me any other information but figured I might as well cover all my bases.

In the week between, I did as much personal research as I could, including studying as many academic articles on studies done regarding this dilemma (thank you Samantha and Adam, for helping me with this overwhelming research!), as well as looking into alternative treatments and integrative medicine. I was hoping to find an integrative medicine specialist for a second opinion as well, someone who believes in medicine but also in other things like nutrition, the body’s own ability to heal, etc. but was unable to find this type of service. It appears you’re either fully in the medicine camp, in the integrative camp which follows the oncologist/radiologist’s lead but adds alternative treatments to help support your body (vitamin C therapy, detoxes, etc), or you’re completely in the camp that advocates against modern day medicinal treatment but has no research to back it up, as there’s never going to be the same money available to fund it, like the pharmaceutical companies have access to.

The biggest problem with making cancer treatment decisions, is that no one case is exactly the same and the field is ever evolving (thankfully). There’s not an exact formula with consistent results which therefore leaves a certain window of unknown. My exact diagnosis, early stage (stage 2) Hodgkin’s Lymphoma with a classification of bulky and unfavorable (due to the mass in my chest measuring larger than 10 cm), has actually been the focus of several recent studies, most notably (to me) one published this year by Duke, focusing on the amount of radiation given; as well as studies on whether or not it’s actually warranted, and many other questions regarding variations in treatment. This discovery at least comforted me in my distress over the inability to make a decision; unlike the vibe I got from my oncologist and initial radiologist that the decision was pretty cut and dry, move forward with radiation. It appears people all over the world are questioning the current standard of care for my specific diagnosis.

That being said, there’s not been a study done yet that has produced a higher cure rate without radiation than with. I met with the next radiologist who thankfully was much more informed and knowledgable in the area of lymphoma. He framed it as this, I’m the captain of a ship no one wants to captain and unfortunately I have to make a decision of what’s best for me, he can only provide me with the statistics on the risks and benefits. He gave us much more specific stats, including that with my particular diagnosis, my cure rate with chemo was actually just around 75% and radiation brings it up to about 88-92%, a much different picture than I was initially given. He also told me of a study that showed that participants who didn’t pursue radiation and had a relapse of the initial lymphoma, always relapsed in the bulky area. This particular study produced a statistic that the clear pet scan results had a false positive rate of about 14%, meaning what was considered a clear of active disease scan, actually turned out to still have active disease in the area the bulky mass had been. This is most likely due to the amount of scar tissue that remains post-chemo treatment, which masks the active cells on the scan. This radiologist left us feeling much more comforted in the ability to respect his opinion (which was that if he were me, he’d pursue radiation).

This paired with my personal research, made it clear that radiation would definitely increase my odds of not relapsing and brought me to my decision now, whether I wanted to chance my lymphoma coming back, or risk the occurrence of the aforementioned issues.

To be continued…