Apr 29, 2013 - 2:15 pm
Tomorrow I am going through Round #2 of surgery to remove the kidney flakes from my lung. After they removed the kidney and abdominal wall mass, they told me to recover and then they would start on the lungs. Recovery has been great so far. I think I overdid it a few times such as walking 3 hours on the fitness trail and then not being able to sit that night. Spending late nights out with my friends and not getting much sleep for the past week or two. My surgery was only on April 5th, but I am trying to live life to the fullest just in case this is the best I am ever going to feel going forward. I know that is not the way to think, but I just feel like like each day is a special gift to thank God for.
After the kidney and side wall removal the pathology report came back and I talked to my urologist about it. He said there were no surprises and it does not change our gameplan in trying to get me in the "winners circle" to beat this forever. I am not a doc, but I did see some good and bad. The BAD: 5% sacra, grade 4. The GOOD: did NOT penetrate the adrenal gland, reached the last kidney layer but did NOT break through the final wall, confirmed clear cell and it was "non invasive".
So 2 out of the 4 items are out and the 3rd comes out tomorrow. I have 2-3 very small spots on the very bottom of my left lung and one "flake of dust" in the right lung. The lung doc told me that they can easliy remove what is there and it will not affect my lung capacity. I was told that after both surgeries, my long term lung capacity will be exactly how it is right now. He said less than 5% will be removed. The bad news is that he said these things are so small that it may be too difficult to see using Video Assisted surgery and they may have to do an old fashioned Thoractimy (or whatever the word it). He said the only difference is 1 more day in the hospital (should be in for 1-2 days). After this, he said to recover for 2-3 weeks then do the other lung.
In the meantime, my urologist said to contact a few oncologist (he gave me 1 of them) for preventative treatments. Since after all the surgeries there will be no more spots (according to the scans), that he wants me to go on "preventative treatment" in order to make sure this is "cured" or prevents it coming back again. Bone, brain, and all other organs are clear. Even though every little pain I get I think the cancer has spread there. He talked about IL-2 as being the only drug to "cure" right now but he said an oncologist may put me on something else. Since I am healthy (besides the obvious), young (35), and there will be NED after the 4th surgery, he said they may not want to blast me with IL-2 right now because they may not want to do that to an otherwise healthy body. They may give me something less to see if that will do the trick.
I know many of you are on the treatment phase, but has anyone out there been on a treatment as "preventative"? Meaning that you have NED (after surgery), and were put on meds to extinguish the microbes "floating" out there or taking something to stop it from popping up again? My urologist said that kidney cancer is an uphill battle, but there is a winners circle and that I have the profile of the people that are in that winners circle. I really hope he is right about that.