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Familial Kidney Cancer

dhs1963's picture
Posts: 512
Joined: May 2012

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.

Texas_wedge's picture
Posts: 2803
Joined: Nov 2011

Interesting stuff David, demonstrating how unwise it is to trust most doctors to know a lot about this special field and consequently how crucial it is for there to be pooling of knowledge. I'll await your further info on the topic with interest.

Posts: 1
Joined: Dec 2012

Just joined this site after my husband was diagnosed with Clear cell about 2 months ago. We now have learned that his grandfather died of Kidney cancer and his father (who is 86 and doing well) had a kidney removed because of a tumor(clear Cell) about 11 years ago. We were shocked to learn that my husband, who thought he had pnemonia, had kidney cancer which has spread to his lung (giving him shortness of breath, leading to the inital dr's visit) Anyway, I wish someone had layed this all out for us and warned us that this disease seems to be highly hereditary. We have a 21 yr old son, who has since had his kidneys ultasounded, and is fine. But we do need someone to explain to us how this Clear Cell works and what would be the best line of defense for our son and future generations. I would be interested if anyone has any comments or suggestions of an organization who could recommend a way to be pro-active about preventing our son from battling this, as my husband is doing now.

dhs1963's picture
Posts: 512
Joined: May 2012

Surveillance Strategy
- There are no established guidlines
- if current kidney lesions, follow MD recommendations
- If no Kidney Lesions, MRI w/ gadolinium is an acceptable imaging choice
- if no lesions, CT with and without contrast is an acceptable substitute
- Regular imaging
- Ultrasound by itself is not sufficient.

The person I am working with is away through the holidays, but I can find out if it ok to share her contact information, either individually or in group. At minimum, you may be able to get screening guidelines.

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