so, the PET scan revealed that we're winning this game. now it's time to run up the score! the question is how? and by how much? there are many different schools of thought... stanford, the germans, dana farber... each with their own philosophy and protocol on what treatment and how much treatment is just enough to beat this cancer, but not so much as to evoke the corresponding heart and lung damage that accompanies chemo or the risk of secondary cancers and heart disease that accompanies radiation. while i'm thrilled we're ahead, i'm not taking a moment for granted, realizing we've got a long way to go and some tough decisions to make.
yesterday, my mom, peter and i spent the day at dana farber meeting with the medical oncologist and radiation oncologist. despite the fact that chemo is working, both believe that radiation is a necessary part of my game plan. my classification as a 'poor prognosis' or 'unfavorable' patient affects my path forward more than i expected it would. the radiation oncologist explained that the high number of tumors or cancer sites caused him to classify me as 'unfavorable', more so than my elevated SED rate. while a 'favorable' patient may win this war with chemo alone, studies show that radiation is a necessary treatment for 'unfavorable' patients to prevent recurrence.
my radiation oncologist teaches at harvard med school and practices at the brigham / dana farber. i like data and he preceded his recommendation with lots of it. he explained that the french & belgians are in the midst of a study of patients just like me, who had two months of chemo followed by a negative PET scan. the study aimed to compare two groups... one that went on to receive radiation, the other chemo alone (the exact decision we are trying to make). he explained that, as recently as one month ago, researchers were forced to shut down the arm of the study treating 'unfavorable' patients with chemo alone because the recurrence rate in these patients rose too high. his estimation is that my chances of beating this disease with chemo alone are about 65%, rising to about 85% with chemo and radiation. if the cancer recurs, i would require a stem cell transplant; my odds of that treatment working would be about 50%. high stakes when it comes to your own survival...
while we have other opinions to gather, the facts convinced me that, despite the concerning side effects, radiation has merit in helping me prevent this cancer from recurring. my local oncologist originally wanted to avoid it, explaining how many of her former young hodgkin's patients are now her current older breast cancer patients, thanks to radiation. we'll discuss with her on monday and, hopefully, move a little closer to a decision. the radiation oncologist explained that one of the cancer sites is dangerously close to my heart, causing him to recommend that i have the 3.5 weeks of radiation performed at either yale or harvard facilities if we go down this road. the perk of radiation is that i'll get away with less chemo (4 vs. 6 months), which may allow me to avoid the long term side effects of too much chemo (permanent numbness in hands and feet, in addition to cardiac and pulmonary toxicity).
i asked a question yesterday that allowed me to put this all in perspective:
if i lived in another time/place and didn't detect this cancer, or elected not to treat it, what would have happened to me?
cancer would have killed me in 18-24 months.
how? (yes, i wanted to know.)
likely due to the spread of cancer to my lungs and pneumonia taking my life.
every day i think of a million things i have to be thankful for... living in the 21st century is now pretty high on that list. thank you, science, for saving my life.
19 October 2010
Subscribe to:
Post Comments (Atom)
6 comments:
Well, you certainly are informed. I think you know as much about Hodgkins as the "experts". I understood everything that you wrote and there's no question that you're approaching your decision fully armed. Good for you, Julie. You're doing this the right way. I'm looking at my green bracelet right now.
Thank you science, and thank you to the itch! I know that was miserable for you to endure but how wonderful that it led to the diagnosis that put you on the path to recovery. It sounds like you are receiving great advice, backed up by great data and supported by great science. You are winning this, keep on keeping on :)
Julia, continue the good fight. I think we've all learned a great deal about lymphoma thanks to your blog. Your in our thoughts and prayers.
p.s. Glad to see you still have a sense of humor. "yesterday, tim & erica landed in costa rica and i landed my sorry butt back in the chemo recliner". That was hilarious!
well julie, i don't know what to say...i am learning through you all about this cancer. You seem so brave, something i truly admire about you. Wearing our green bracelets reminds us that this fight is not over..we are walking with you through this all and keeping this fight alive..stay strong; your PMA is contagious!! we love you julie! The DiGiammo's
this post is one of the most moving things i've ever read. i'm so happy that you have continued to receive good news. Definitely in my thoughts!
Julia, I want to see you soon, I may be down in Bristol midweek. See how you feel, love the music! xo j
Post a Comment