May 7 - Back on the Rollercoaster

Saw Dr. Lee this morning. I had posted to FB that I was feeling a little spooky about this visit. Sure enough, the cancer is back. He showed us CT images going back 4 years. You can barely see something developing across time, if you are very carefully looking. Then, this year's scan showed a 1" tumor in the nephrectomy bed. There's a smaller tumor along side it.

So, what does this mean? First it means Dr. Heywood was right when he said he was fairly certain this cancer would recur. He took some tissue samples at the last surgery and the histology said there were still a few little cancer cells floating around.

The docs at MD Anderson also said "when" this cancer recurs, not "if". Looks like they were right.

There are several options. My preference, as most of you know, is surgery. As my friend Rose-Ann says ... When in doubt, cut it out. ... But this one is positioned very poorly. VERY close to a major vessel and right up against the posterior abdominal wall. The concern is that surgery would damage the blood vessel, which would be very bad and/or the proximity to the abdominal wall makes it almost impossible to get clear margins without damaging the wall.

So surgery is not a first option. Next best is tomotherapy. Much like a CT scan, this process focuses the radiation very tightly on the tumor. Now, I know you have heard me say that kidney cancer is specifically resistant to chemo and radiation. The best they can hope to do with tomotherapy is create scar tissue around the tumor, which will limit its growth and slow blood flow to it (also limiting its growth). Major side effect is extreme fatigue. Would be treated daily for a couple to three weeks. Could buy me a few years.

Next possibility is an oral therapy called an M-TOR inhibitor. Have lots to look up and learn about this one. Lee says it will shrink the tumor without cardiac side-effects of other oral therapies. Not chemo therapy, but close. Major side effect is mouth ulcers, which Lee described as "craters".

There's also about a 2.5% chance of spontaneous remission. Not counting on this one.

The high-dose IL-2 that was an option last time is not being recommended much any more because the quality of the success is not good. That means recurrences are almost guaranteed. And I believe it isn't very effective unless the tumor is in the lungs. I'll have to look that one up.

So ...

I have an appt with a radiation oncologist on Friday to learn more about the tomotherapy. I have sent Dr. Lee the name of the oncologist I saw in Houston several years ago and I will be making a trip to MD Anderson soon for their opinion on treatment options. Perhaps they will have a more aggressive surgeon or have some other radiation or oral therapy available or in clinical trials.

As I did last time I was going through this, I will post here as many details as I can and as soon as I know them. Keeps me from having to talk about this all the time and answer countless questions. Lets me get on with my life.

Thank all of you in advance for all the wonderful thoughts and prayers that I know will be coming my way. I could certainly feel them last time and I know they will be a great comfort to me this time.

Oh, and I'm still going on my Alaska cruise the end of this month! Can't keep a good cruiser down!