March 5, 2010

radiation, anyone?

welcome to the start of my radiation story..., the plan is to have radiation after i finish chemo. why? because i had a very large mass in my chest, and for those of us with 'bulky' disease (the hodge word for a mass larger than 10cm...mine was 17x10x10cm) there is no research that shows that chemo alone is the best choice. especially in my case, with one of the larger masses that any of my doctors have ever seen, we felt that radiation was a necessity from day one. so, basically the plan was six months of chemo to shrink the mass i had, and kill any disease that may have been circulating in my body but wasn't detected by scans (this disease would be very small and the chemo would definitely take care of it). although it appears from my scans that the remaining mass in my chest (which i will have forever) no longer contains active cancer cells, there's still a chance there's enough life left in it to become cancer again. the radiation will hit whatever mass is left, even though they think it's just scar tissue, and kill any rogue cells so they don't have a chance in hell at surviving.

so, yesterday, i had a consult with the radiation oncologist who'll be leading the team of people involved in the actual radiation treatment (it involves a whole lot of different people). i had a lot of anxiety about meeting him, mainly because i've been at this for over seven months, and everyone on my oncology team knows everything about me - i didn't want to add someone new to the mix this late in the game when i'm just ready to be done. however, he turned out to be exactly what i needed right now. he had a positive spin on everything that he said, and really made me feel so much more optimistic about all this than i have been lately. so, kudos to my medical oncologist for referring me to him, and extra kudos to the radiation oncologist for being a fantastic addition to my oncology team...i'm glad to have him.

what he said about the radiation was very straight forward...he believes that since i've had an excellent response to chemo, that his job will be to clean up whatever may be left and ensure the 90-95% chance of being cured. the excellent response to chemo does two decreases the 'radiation field' (the area they hit), and he can use a relatively low dose of radiation. of course, it carries risks...but, he believes that the benefit outweighs the risks, and that we can do the radiation safely and effectively. he also told me that the radiation these days is much safer and carries less risks than the radiation twenty years ago (which is what they have data on for long term effects). additionally, if something does come up, it will be later in life, and he said that medicine is changing so much that we'll have an entirely different way of dealing with it then. so, basically, as my primary care doctor told me, and i say all the time 'we treat the reality now, and worry about the what'if's later...if they ever happen'.

next on the to-do list.... finish treatment (four days until the last day!), go to dana farber for a second opinion on the radiation plan from a hodge expert, have a post-treatment PET scan, then go to the radiation planning appointment.

...and, perhaps, a little party in there, too!


  1. I am so freaking excited for you! Tuesday is just a blink away - and honestly radiation was not my cup of tea, but it was over SO FAST. Have a fantastic weekend, sending love always!!!

  2. Thanks so much for this post. Nick has been really nervous about his upcoming PET & what the future will hold. This helped him a lot. Thinking about you!

  3. What a well written and well informed take on radiation for us "bulky" Hodgers. I have just learned more than I knew before! Good luck with the rads. I am sure you will do fine. And the best part is that it is over so much quicker than chemo!

  4. I hope it's over quickly and painlessly! My worst side effect from both chemo and radiation were heat, cold sweats, and insomnia. I started using one of these and it was a great help to me: ChiliPad (it's a mattress pad that lets you cool the bed down to any temperature you set - it has a range from 46 to 118 degrees). I also went on a macrobiotic diet, which really helped with detoxing from the chemo. The other thing I did that was really important to my healing was watch tons of stand-up comedy. I really believe laughter is the best medicine.