Monday, December 24, 2012

To radiate or not....

The big radiation or no radiation question is weighing on us. As a researcher I am approaching this empirically. I know this is hard to understand if you are not wired this way. I need to know the evidence. Most of the studies on Hodgkin Lymphoma are out of Europe because of their ability to fill the studies easier than we can here in North America. additionally, I have been doing a lot of reading from an Oncologist from Standford named Dr. Richard Hoppe. He wrote the medical textbook - Hodgkin Lymphoma. My family will appreciate my gravitational pull to Stanford. According to him and other researchers - No radiation is generally for those patients with favorable Hodgkin's. I found out at my last appointment that I am officially considered favorable. To be unfavorable, you need to have at least one of the following (these qualifications vary quite a bit from program to program, but here's an example): 1. male (we always knew they were unfavorable) 2. Age greater than 45 3. Sed Rate without B symptoms OR >30 with B symptoms (I had no B symptoms) 4. Greater than or equal to 4 lymph node sites (I have 3 - neck, superclavicular, mediastinal) 5. 10 cm growth inside mediastinum (My largest growth inside the mediastinum is 6cm.) If I did not have radiation, I would have an 94% chance of FFP (FFP basically means that I won't have a Hodgkin Lymphoma relapse). If I did have radiation, I would have a 96% chance of FFP. Having radiation comes with long term risks. Mainly, heart disease, lung cancer and breast cancer ... breast cancer especially may increase to as high as 50 times more likely than the average person 20 years post treatment. It is less for narrow field radiation than broad, but they risks are still there. Lindsey... you're sounding like a lunatic ... why wouldn't you get radiation. ENTER ... the clean PET scan. In the last few years, doctors have started to use the early PET scan to help determine treatment. None of the favorable/unfavorable indicators can hold a candle to the early PET scan in determining whether or not a patient will or will not relapse. About 80% of patients have a clean early PET scan (actually it's 85% of favorable patients and 72% of unfavorable patients) and I am luckily one of the 85%. Well I did nit hane a full PET, but did have a clean CT. There are a whole bunch of studies that have just started or are ongoing regarding the early PET scan, but there aren't a lot of results yet. But the big issue is that emotional pull. If I don't radiate and it comes back will I regret it?? Now, you know .... you know all of it ... the dilemma ... the gamble. We have a few weeks to make the decision. We'll keep you posted.

5 comments:

  1. I can't even imagine being in your shoes right now. That's a heavier decision than I would ever want to make. You're obviously approaching with risk vs benefit and that's the best possible way, IMO. Can they do an early PET before you decide or do you just get to rely on the CT?

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    1. I will get a PET once I am done at the end of the cycles.

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    2. Gotcha. I know you'll do what's best for you, but it just doesn't seem worth it for all the risks involved. I love you! Sending you good thoughts!

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  2. Wait - I may be reading this wrong...but, radiation only decreases your chances of a relapse by 2% (94 to 96)? But carries all of those other health risks down the road? I think maybe I'm not understanding this clearly! Love you, Linds!

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