The hardest decision of my life
Poll: How would you go about making the hardest decision of your life? A decision that is literally life or death?
Here’s how I would answer:
1. Research and statistics. Mom and DH were superhuman when it came to researching studies, articles, and statistics about PMBL. We needed, no were desperate for, information. They read each article front, back, sideways and diagonally. They talked about it with colleagues on each coast. They debated with each other. We met face to face with the people who wrote the articles, ran the studies, and knew the research as well as, if not better than, we did.
2. Cried about it. I did a lot of this. I’m not sure if it was actually helpful in the process, but that’s about all I could with the paltry amount of energy I had.
3. Talk, talk, and more talk. We had endless conversations analyzing what-ifs.
4. Read blogs about other people’s experience with radiation vs. no radiation. Again, not totally helpful, but I had to fill the time with something.
5. Considered my genes. Radiation increases the risk of secondary cancers. Some radiologists claimed that the increase was only 3-5% more than the general population. Other oncologists thought it was more like 30%. The fact that I’m young puts me at a greater risk because I have more years to live during which these cancers could come about. After meeting with two radiologists, it was clear that my heart, lungs, and breasts would be radiated. The radiation field must be as large as the tumor was originally and my tumor was large enough that all of my highest priced real estate would be radiated. Oh, and I can’t forget that both of my grandmother’s had breast cancer.
6. Met with the doctors. In some ways, this was the worst, most confusing thing to do. Here’s why:
My Bayou oncologist said I’ll support you with whatever decision you make. I’m curious to see what Oz will say. Ok, well that’s not helpful. Later, when he found out that my PET scan after six cycles of chemo was positive according to the Deauville Criteria he said, well let’s just radiate to make sure, you know as an insurance policy. An insurance policy against what? To get cancer in the future? Thanks but no thanks.
The Bayou radiologist said, I’ve treated five patients with PMBL and I’ve radiated all of them. Of course those patients had RCHOP not REPOCH. I don’t have any patients who were on REPOCH, I don’t know about that protocol and I haven’t read the literature. Great.
DH’s colleagues in the Garden of Eden said not to radiate. They treated 17 patients with PMBL on REPOCH and none of them had radiation and they are all in remission.
My oncologist at the Cancer Epicenter of the South said If you were my mother or daughter, I would radiate. But what about the articles from Oz? What about those statistics? Those studies aren’t old enough and they aren’t good enough. There isn’t a proven track record yet. I just had a patient with diffuse large b cell lymphoma who was on REPOCH. We decided not to radiate and here he is six months later relapsing. But diffuse large b cell lymphoma is different than PMBL. We cried. The studies do not claim to have as high of a remission rate for diffuse large b cell. I’ve lost a few young mother’s with this disease, he said. Once it comes back it is very very hard to treat. I have a few cases right now where the patients has relapsed and they are not salvageable. Not salvageable? What the fuck does that mean?
The radiologist at the Cancer Epicenter of the South said I would absolutely recommend radiation in your case. Have you radiated anyone who was on REPOCH? No. Do you know about the studies from Oz? No. But, I do know of an on-going study in Italy that was comparing REPOCH patients with and without radiation and they are just about to close the wing of the study of patients with REPOCH without radiation because the relapse rate is so high. This peaked our interest. DH pushed her on the details, of which she couldn’t remember. She said she would email us the article. DH spoke with his colleagues at the Garden of Eden, no one knew of the study. The radiologist later recanted, stating that the study was on RCHOP, not REPOCH.
The Wizards of Oz said, we would not recommend radiation in your case. The statics show that you will not need radiation. We prefer the wait and see approach whenever there is a questionable scan. We believe that your scan is most likely negative but rating it on the Deuaville Criteria does make it positive. You can always do radiation at some point down the road if you needed it. In fact, a few of our patients did have remaining masses that were more positive than yours is after REPOCH and we radiated them and they are now in remission. We believe that you can reach remission with radiation as well. The secondary cancer risk is very high and it’s not a risk that we believe you should take.
This was the hardest decision of my life. In the end, with all other options exhausted, I looked inside. I asked what is my body telling me? How do I feel about this? The idea of radiation never seemed to fit. Some feel that radiation is the most conservative route because it will insure that the tumor won’t come back. While it is technically true that radiating my mediastinum will likely prevent the tumor from coming back in my mediastinum, there is a chance that a tumor could appear somewhere else in my body if it really wanted to. In some ways radiation felt like I was robbing Peter to pay Paul. Sure, it would prevent a relapse of PMBL in my chest but it may give me breast cancer, lung cancer, and severe heart conditions like thickening of the arteries. In the end, I couldn’t ignore Oz’s statistics and experience with REPOCH and PMBL. I couldn’t ignore my feelings about radiation. And so, that’s how I decided that at this point in time, I would not have radiation. I don’t know if it’s the right decision and there may have been a better way of getting to this point. But I think I made this decision with as much care and reasoning as I could. In the end, without anything else, I’ve decided to surrender and to follow to my heart.
I found your blog from the Facebook group. I was diagnosed back in August with Primary Mediastinal B Cell Lymphoma, did 6 rounds of REPOCH, and was recommended radiation. My experience totally mirrored yours, and I also decided against radiation. I have been reading the new research and feel very good about the results. It’s nice to know I’m not alone in the anguish of that decision. It was very very difficult for me.
Hi Julie. There is something strangely comforting knowing that you aren’t the only one facing a decision like this. I encourage you to meet with the doctors at NIH if you continue to have doubts and haven’t met with them already. For now, I’m clinging to the research. Here’s to health!