Monday, September 26, 2011

How much do I want to know?

To Google or not to Google?  Some years ago when I had shingles, I turned to Google while I was still quite sick. Bad idea. One site cheerily said that I had a 50% chance of no pain after six months. (P.S.: I still feel the inflamed spot on my back.)  Yet I am a scientist. I could read and understand the original literature and be empowered. When my chemist friend Mary had a severe case of Lyme Disease, she became an expert, and made sure she was getting the right care.
So how much should I read?  A friend from the lake had a nephrectomy a few years ago, successfully treating early stage renal cancer. He offered to lend me a book. I have politely declined, twice. Why? In part because my doctors (GP, surgeon, and two oncologists) have made it pretty clear that my situation is bad. Contrary to the portrayal in drama and literature, no one has given me “xx months to live”. But I haven’t asked the question.
So I decided not to Google. About a week ago, I opened the second month’s box of Afinior (aka Everolimus, aka RAD, the pill I am taking as part of the treatment) and the package insert fell out. I looked at it; big mistake. The top item was a graph: survival rates of patients with advanced renal cell carcinoma, with and without Afinitor. Without, most of this particular set of patients died in a couple of months, with, closer to a year. Is this something they really want patients to read, or does FDA mandate this? This may be improvement, but is hardly encouraging from my perspective. Later that day I succumbed and Googled.  Patients with advanced renal cell carcinoma have less than a 5% five-year survival rate, with average post-diagnosis longevity of 1.1 years.  So now I know…or do I?
Every cancer is different, so scary statistics are not helpful. 50% survival is meaningless at the individual level: you are either dead or alive, unless you are Schrodinger’s cat. Mine is atypical (non-clear cell) so these numbers may not apply. It is sarcomatoid (bad), but chromophobic (potentially good, according to a friend). I am on the latest therapy, combining two agents, at a top cancer center. The first oncologist I saw made an important point. Stage IV covers wide territory: the cancer has advanced from the original site, a little or a lot. Mine is the former, no other organs involved. (Lymph nodes don’t count as an organ, I think).
No more Googling. I do listen carefully to what the doctors say, explicitly and implicitly. But I might be mis- or over-interpreting their comments. On the day he gave me the diagnosis, my nice GP gave me his cell phone number and told me to call anytime, even though I had not signed up for his newly-established concierge service. That seemed serious. BC (before cancer) I had  Moh’s surgery scheduled in mid-August to remove a small basal cell carcinoma (BCC) from my chin. I asked the oncologists at MSKCC what to do. The young associate thought I should proceed; his superior told me to cancel.  I happily did so. Did he mean that I an unlikely to survive long enough for this to become a problem? Or was he just saying I had enough on my plate, for now?
I am definitely contemplating my mortality, but not counting. This actually has advantages. I used to worry seriously whether I had saved enough for retirement: my Great Grandmother lived to 106, and who knows what will happen to the economy decades hence. One worry gone. I have already reformed some of my more parsimonious ways. I kept the internet on at the Pocono house after Labor Day! I am thinking about some fun and interesting travel, health permitting. The future does look different.
More about that in another post.
Future topics:
Optimism vs. realism
Depending on family and friends without overwhelming them (and me)
Work during treatment?
“You look great” and other comments that stump me.
Language pitfalls

2 comments:

Giny said...

Travel...we're here to join you! Giny/Don

Anonymous said...

Heya i'm for the first time here. I came across this board and I find It truly helpful & it helped me out much. I'm hoping to
give one thing back and aid others such as you helped me.
Feel free to surf my web-site ; all about errol denton