Defining the course of treatment

Since my second surgery on Jan. 5, we have been actively consulting with doctors at three different hospitals to determine the best course of treatment.  Today Jennifer and I spent the day at Hopkins; in the past couple of weeks we have had numerous consultations with doctors from Hopkins, Mass General, and GW.  I have been most impressed with the professionalism of all of these doctors, as they have checked their egos and collaborated to determine what is the best treatment for me. 

I have learned that my case is highly uncommon for a number of reasons:  (1) fewer than 5% of bladder cancer cases occur in patients under age 50; (2) only 24% of all bladder cancers are muscle-invasive; (3) fewer than 7% of muscle-invasive cancers have the micro-papillary features (a particularly nasty form of transitional cell carcinoma) that the pathologists have found in my case; and (4) fewer than 1% of bladder cancer patients present with as many different tumors occurring at the same time - I had the one major tumor that was removed on 12/1/11, and 10 other smaller ones removed on 1/5/12. One of my consulting doctors from Mass General - a national authority with 45 years experience with treating bladder cancer - said he could not recall another case that was like mine. While I'm not convinced this is a good thing, it was enough to get his attention and very helpful and in-depth consultation of him and his team (without asking for any insurance information!). 

The upshot is that the doctors at Mass General, Hopkins, and GW all agree that my bladder is badly compromised by the cancer, and should be removed. The doctors also agree that I should first have several courses of intravenous systemic chemotherapy with gemcitabine and cisplatin.  This chemo regimen will involve 3 or 4 courses, and each course will last for 28 days (chemo on days 1, 8, and 15, then a week off to recover).  They also agree that I should not have radiation therapy at this time, but instead wait and see how I respond to the chemo, and to see what the pathology reveals after the surgery.  They also agree that having chemo at GW is fine, both because the oncologist there is very well regarded in this field, and because there is unanimous agreement on the chemo regimen.

Thus, I am scheduled to start chemo next Monday, Jan. 30; I will have an IV port placed in my chest on Friday, Jan. 27. I am told that there is a wide variation on how patients tolerate this type of chemo. While the first week of each regimen is the hardest, some patients are able to work relatively normal schedules during the other weeks, while others feel crappy the whole time.  Some patients lose their hair; others do not.  Most patients lose weight, but some do not, and a few gain weight because the stomach stops talking to the brain (something that apparently happened to me years ago . . .).  The doctors stress flexibility and to not overcommit - advice I fully intend to follow.

Assuming I am able to tolerate the full 4 courses of chemo, I would complete it in mid-May. I would have several weeks to recover, then likely will have surgery in mid-June to remove the bladder, prostate, and surrounding lymph nodes.  I also will have a neobladder created from other tissue (there are several options on what tissue is used to construct it; Google neobladder if you want to know more).  The intent of the neobladder is to create an alternative reservoir to hold the urine and otherwise use all the original plumbing. I'm told that I’ll have to learn to use some different muscles and techniques to empty the neobladder.  Recovery from that surgery is about 2 months, plus I can look forward to several additional months of physical (peesical?) therapy.

Thereafter, I will be closely followed to see if there is any hint of metastasis. This type of cancer loves to spread, and if it does, it's very bad. About 25% of patients with stage 2 TCC eventually have it spread, despite the chemotherapy. More optimistically, there is a 75% chance that I will have a full recovery. While it will be a long slog this year, I have confidence that I'm getting the best care possible and am in the best position to beat this thing.

Thank you once again for your ongoing support, faith, and prayers. It is in circumstances such as this that the true character of people are revealed, and I am gratified that my family, friends, and colleagues have shown themselves to be true mensches.