Bad News

I just got the results of my first 3 month ct scan after my nephrectomy in Feb on my left kidney. The scan shows a new less than 2 cm nodule on my right kidney. The Radiologist suggested to watch it in three months because it could be nothing more than a cyst but my urologist has sent the report to University of Wisconsin and Dr Lieu whom I met with after my surgery in Feb. Now we wait and see. Anyone else have any similar experiences?

Hi John,
Sorry to hear about your situation. Please visit the ACOR kidney-onc email listing and post your information there. Include your history like when diagnosed, what subtype of cancer(clear cell, sarcomoid, etc.) and wether ANY one else in your family has had kidney cancer. (brothers, cousins, aunts, uncles) It would be rare to get cancer in the other kidney without something else going on. This email list will provide you with tons of info and everyone there is kind and compassionate and going through the same thing. I would really strongly advise you to seek out a RCC specialist- not just any oncologist. Kidney cancer just does not function like a typical cancer. Arm yourself with as much knowledge as possible and DO NOT leave your fate up to doctors. The list will let you know of drs in your area that may be able to help. There are not a lot of RCC specialists around but the ones that are available are fantastic. Please don't wait and get a second opinion from an RCC specialist. Good luck. The link to the kidney-onc list is http://cancerguide.org/kofaq/. Read the users guide and you may want to set up a seperate email account- you will receive a lot of mail. This list saved my mom's life- and that is no exaggeration.
April

April's advice on the money; KIDNEY-ONC is a great place to find help from people who have "been there, done that". But, do NOT wait three months before you do something to find out if this is a cyst or a met from the kidney cancer; a PET scan now might be a good idea to see if the nodule is metabolically active. My sister got the same advice when she developed a single lung nodule--except they told her to wait 4 months. WRONG! She got a second opinion, had a PET scan, and the nodule was out in a week. It was not kidney cancer; it was lung cancer, and it had not spread, but it might have had she waited four months. That was three years ago, and neither cancer has recurred.

I just picked up my radiology report from the Urologist office went home and read it myself. Guess what - It does not say that there is a new growth on my remaining kidney it says that the probable cyst that was there before should continue to be monitored but has not increased in size. Now the report does say that the CT chest scan "might" show a new nodule on my lung that should be monitored. Sounds like I either misunderstood my urologist when he called or he misspoke.

As far as seeing a RCC specialist the DR at UW Clinic in Madison is supposed to be one of the best and is involved with almost every trial out there. I intend to follow up with him next week.
Thank you so much for the advice and concern.