Mar 26, 2014 - 10:09 am
I’m another new member here. We keep showing up, don’t we?
With a CT scan in January of 2013, I was found to have a large tumor on my right kidney. Shortly thereafter, surgeons removed the right kidney, the tumor, the neighboring adrenal gland and a number of nearby lymph nodes. It was papillary renal cell carcinoma – Stage IV.
The primary surgeon is top-notch and care during recovery was excellent.
I was told that the normal post-surgery treatment would be to “wait and see”. That wasn’t agreeable to me; I wanted to get into some sort of treatment immediately. I didn’t want to just wait for the cancer to come back. Both my local oncologist and an oncologist associated with the surgery hospital came up with the same clinical trial: the Everest study (“Everolimus for Renal Cancer Ensuing Surgical Therapy, a Phase III Study”). We got into the trial, starting in late March 2013. It lasts 54 weeks and will conclude in a matter of days. I am all but certain that I am part of the Everolimus group. I have had too many of the side effects to think that I am on the placebo.
In general, the clinical trial has gone well. Side effects have been tolerable. Scans have been every 4 months and all scans have been “clean” so far. The concluding scan is coming up soon. I am counting on another good scan.
I am unsure of what’s next from a treatment standpoint. The clinical trial is being administered through my local oncologist and his regional health group. I will be meeting with him shortly after the trial’s ending date to figure out what happens now.
This is when I have a few questions:
1. Is it going to be an automatic "wait and see" approach now that the Everolimus trial is done? There will be 3-month scans and exams after the trial, but I am not aware of any other course of treatment that will be undertaken. Are there other possible courses of action that I should be investigating? Such as? We're going to have this discussion with my oncologist next week and I want to be prepared.
2. I have a lot of confidence in my local oncologist. No reason to doubt him at all. However, he isn't a kidney cancer specialist. I am thinking that it's a good time to get a second opinion of where I'm at. is that what most of you would do?
3. How do I find the good kidney cancer specialists? I am in Wisconsin. I will get my oncologist's recommendation of where to go for a second opinion, but I am interested in other suggestions as well.
I welcome the group’s input. I appreciate the opportunity to share info with you.