It's taking much too long to develop a rational plan for getting out of cancerstan. I had imagined setting up a full treatment plan within a few days after the diagnosis.
Surprisingly to me, even though I've known about my stage 2 bladder cancer since April 25, we are still pondering the particular treatments and the dates on which they will take place.
The gold standard of treatment is well understood in both the USA and Europe to be Radical cystectomy including removal of bladder, prostate and lymph nodes. Various tests are recommended before any surgery including complete blood work up (done during day surgery on april 19) and chest CT and bone scan (to be completed tomorrow May 6 at Legacy Emanuel.) If any of those tests show that the cancer has spread, we may not do surgery.
In addition, we are considering a short course of chemo before surgery as that may increase survival rates 5% to 10%. However chemo delays the surgery and surgery delayed will likely result in more cancer. With the chemo short course, surgery would likely be delayed into July.
Without chemo, surgery could take place around May 24.
First appointment with a medical oncologist is next Thursday.
Since April 25, Mary Ann and I have interviewed Urological surgeons from three different groups and gotten their advice.
Each of them do this Radical cystectomy with a partner...
Each of them have been upfront about this being serious major surgery resulting in 5-10 days in the hospital and then 2-4 months recovery. One of the surgeons suggested recovery from this operation is more difficult than open heart surgery. And, medical lit suggests complications in 25-30% of these surgeries.
Jim Puterbaugh our family doc of 22 years has been guiding us on this journey into Cancerstan. Until yesterday Jim had been been encouraging us to look around for the specialists that fit. Yesterday he changed his tune and strongly recommended that we have Bruce Lowe do my surgery. Reasoning: Lowe has been doing Oncological urological surgery for years and has done more Radical Cystectomies that any other. He is intensely competitive which suggests he will do me better.
continuing query
what is a reasonable amount of treatment? When is it right to let go?
Side bar: I am a big fan of Atul Gawande. See his 2010 article "Letting Go" http://gawande.com/articles
John:
ReplyDeleteThanks for sharing your options, as unpleasant as they seem to be. You have throngs of us praying for you each step of the way!
In the Light, Friend.
This is clearly not a pleasant journey nor one you embarked upon willfully, yet one that you must travel bravely. I will join you in it to the extent I can, while knowing that the vicarious experience of it is a completely different one. I hope that I can help you feel supported and at ease in some small way.
ReplyDeleteThanks for sharing your plans and thoughts for the journey no one chooses to take. Thanks for sharing the Atul Gawande blog. "Letting Go" is as good as an analysis as I've seen of these very tough issues. Still, far different to be living this than observing it.
ReplyDeletePlease know we're all in your corner and will do anything we can to make the trip more tolerable. Please tell us if and how we can help.
Hugs from all of us.