Cancer Survivors Network

I learned a lot this week, and though I would share it. For me, kidney cancer is a family affair: My grandpa died of it at 82. My dad at a partial nepherectomy 9 years ago (63) for a 2.4 cm tumor, and now he has nine new nodules. I had a 5.5-6.0 cm tumor removed six months ago at the age of 48.

What I learned is that 4-5 % of kidney cancers are familial. In my case, I classify as multiple close blood relatives have the disease and I had the tumor young. Third is if you have multiple primary tumors, like my dad and grandfather. I will probably have them in 20-30 years (god willing I live that long).

The treatment of familial cancer is somewhat different: a primary goal/need for the patient is to leave as much of the kidney in place, as there will probably be more primary cancers. If the tumors remain small, they will not metastasis, so they are not dangerous. Recommendations are to do a partial nephrectomy if at all possible, and only if a tumor is great than 3 cm. That is because NIH has never seen a tumor smaller than 4 cm metastasis. I wish I had known that before my surgery, but I did not.

There are 1000-2000 new cases of familial kidney cancers per year in the US. As such, many urologists do not know about the implications. And most primary care specialists do not understand. For example, in 2004, after mentioning the family history of kidney cancer, my Primary Care Dr. told me Kidney cancer is mostly environmental, and I should not get screened. When the tumor was identified, my urologist knew nothing of familial kidney cancer. He suggested I contact NIH in a vague manner. I should have done it pre-nephrectomy, but I did not.

I am not sure about advice to relatives of kidney cancer patients. I do know that if you are diagnosed with familial kidney cancer, you blood relatives need to be screened, which probably means MRI's (to reduce radiation exposure) or CT scans.

The Dr's at NIH are very interested in my family blood lines, and are following up. I will keep things posted. If you have questions, please contact me through here.