May 28, 2013 - 5:24 pm
Here is a quick recap on my past before I get to the IL-2 question:
3/20/13 - diagnosed with met RCC
4/5/13 - Left kidney removed - Left soft tissue abdominal wall mass removed
4/30/13 - 2 nodules on left lung removed - 2 spots on the inside chest wall removed (where the kidney was)
Remaining - 1 "speck of dust" on the outside of my right lung (rest of the body is clear)
Kidney Tumor Pathology - 7cm; Clear cell; Grade 4; 5% sacromatoid; Adrenal glad negative for tumor; Negative for invasive carcinoma; pT3a
Now here is my current problem after 3 oncologist visits:
ONCO #1 (non-IL-2 hospital) - does not suggest any treatment at that hospital. put me in an intermediate category for recurrence. suggested I talk to an IL-2 doctor in order to discuss IL-2 treatment in order to "exterminate" the blood of any cancer microbes floating around in order to prevent the RCC from returning.
ONCO #2 (IL-2 hospital #1) - does not suggest any high dose IL-2 treatment at this point. said that it is too early to tell if the disease will even return and does not want to blast my body with toxic IL-2 if not needed. said there is no proof that IL-2 works to "prevent" recurrence since the body may be done with the cancer after surgery. even if he was going to put me on IL-2 he would want me to wait 2 more months to fully recover from my last surgery on 4/30/13. told me to relax, recover and enjoy my summer and they will do scans in August to see how things are going. said if it does come back he would put me on IL-2. If it does not come back he told me to look into having that "speck of dust" removed surgically.
ONCO #3 (IL-2 hospital #2) - wants me to start high dose IL-2 three (3) weeks from yesterday. he says that I have a high possibility of it coming back in my lifetime and undergoing high dose IL-2 is a way to try and make sure it does not return. since I have the "speck" on my right lung, he said they can see if the IL-2 is working by watching this "speck". wants to run the full cycle of IL-2 treatment to try and "exterminate" the blood and keep it from returning. he said if I wait for it to come back it is already too late. the point of IL-2 when I'm 99% cancer free is to try and extinguish any microscopic RCC cells floating around so they don't stick somewhere and cause trouble.
So out of the 2 IL-2 hospitals I received two different opinions. ONCO #1 and ONCO #3 know each other, so I knew their opinions would be similar. In fact, ONCO #1 called ONCO #3 and got me an appointment with him. I am now more confused than ever. Do I go for the treatment right away or do I wait to see if the cancer is done? Please help, I really need as many of your opinioins as possible because many of you are further along the road than I am (I'm a newbie only joining the club in March). What would YOU do in my position?