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Ten years out and still looking over my choulder... any advice?

Digger95
Posts: 59
Joined: Jun 2010

Hi all,

I'm new here and just wanted to introduce myself to the board.

I was diagnosed with Stage II renal cell carcinoma in June of 2000 at the age of 37, had a right radical nephrectomy (kidney, adrenal gland, lymph nodes) and so far everything seems to be 'okay' except that now I've got a few cysts on my left kidney and a new growth on my left adrenal gland that is scaring the crap out of me. My doctor assures me that benign adenomas of the adrenal gland are quite common but the fact that it continues to grow does not help much to allay my fears. It's still under 3.0 cm though.

At any rate, I will be going for my annual cancer checkup next month and will see if these new growths have gotten any larger. My current protocol is: an annual chest x-ray, complete kidney and liver panel, and an abdominal mri. In the past we were doing ct-scans until my doctor and I tallied them all up and realized that I have probably had way too many ct-scans for my own good (over a dozen so far) and we switched to mri's after that.

Questions:

I have never seen an oncologist. My nephrologist has always handled my care and said that an oncology consult is unnecessary with regard to kidney cancer. Is this pretty common?

Also, what protocol do you all use for follow-up testing after radical nephrectomy? I'd be interested in hearing what kind of annual testing everyone else here is getting.

Thanks so much for reading this long post and for providing any information.

Dig

icemantoo's picture
icemantoo
Posts: 1598
Joined: Jan 2010

I just passed 8 years on my diagnosis and approaching 8 years from my surgery. This year the doctor has me scheduled for an ultrasound although I usually have a C-T scan every year. The young 75 year old woman across the street is approaching 15 years from her surgery and they are cutting back her yearly tests. As for the type of doctor I am seeing, he is a Urological Oncologist specializing in Kidney and Prostate surgery. I will be 67 next month and do not plan on dying of Kidney Cancer if I can help it. I also plan on going either ziplining or parasailing on my Caribbean Cruise in January 2011 and I can not understand my wife's reluctance to join me as she will only be 66 then.

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

keep on with followups - minimally yearly. RCC is a nasty sneaky disease and can return even with a Stage I initial diagnosis.

jazzykim
Posts: 3
Joined: Jul 2010

Hi,
I recently had a full nephrectomy (my right kidney and had a 7 cm. tumor in there)...no idea as to why it appeared,causes, etc. I am a non smoker, late forties and for the most part healthy.

I had my surgery on March 3rd and was out of the hospital on March 5th; I am a stubborn patient though and push myself.
Think I may have pushed myself too much as I went back to work 2.5 weeks after my surgery into a physical job. My surgery was through laparoscopy.

I have my first 'official' follow up test this coming August and then meet with the urologist early September to review ~ as re: what tests I am having done; simply an abdominal ultrasound and a chest x-ray (no CT's or MRI's booked).
I too have a liquid filled cyst in my left kidney, but apparently 50% of the population have them (over 50 yrs. of age...I am not that old though) and they don't know it.

What post surgery affects did you have and how long did the pain/swelling/swollen areas, pain of scar tissue, etc. last, or even did you have any????

Would love to know how you were/are post nephrectomy.
I think I was naieve as I just thought you go in for surgery, have it out, rest a bit and there would be no other symptoms/affects...yikes, think I was wrong!

Anyone with any advice/help, please feel free.

Jazzykim

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