How did you find about metastasis after the surgery?

todd121 said:

Follow Up Care

When were you operated on for your RCC? 

I understand your worries. I have the same. My nephrectomy was 2 years ago in December.

Have you had a nuclear bone scan? That might give your mind a rest as far as bone mets are concerned. I entered a drug trial with the idea that I'd be followed more closely and get to know a top RCC oncologist "just in case". So far I'm happy with my choice for the most part.

I think anyone can follow you (uro-oncologist, oncologist) as long as they are following the national cancer institute guidelines for followups. I had a post further down where I posted a link to the website where you can download the guidelines yourself and see what is recommended.

You would have been Stage 2. I was Stage 3. The risks are similar to each other (mine a little higher risk for recurrence than yours) so I would expect your followups should look like mine. For first year I had a CT scan of chest/abdomen and pelvis every 4 months (I believe recommendation is 3-6 months minimum). I had a nuclear bone scan at the beginning to rule out bone mets (I had a small lesion on a femur bone visible on a CT, but it turned out not to be cancer). CT's should be done with contrast if possible. X-rays and ultrasounds aren't accurate enough to catch early mets (from my understanding).

If you're getting the imaging done on a regular basis, I would expect you would see things on the images before you would feel them. However, like you, I panic at pain or feeling bad/weird, etc. I think that's normal. I've had a few issues come up which turned out to be nothing.

If you can find a good oncologist to see you, I would do it for peace of mind. One with some or a lot of RCC experience would be the best. I know from experience that if you are considered NED, the RCC expert may not want to follow all your little concerns that turn out to be nothing. However, they might be willing to schedule and do your followups. I did the trial mainly to get my foot in the door. The success was mixed (I'm glad to explain that statement).

Just make sure you're getting the recommended follow ups according to the guidelines if you decide to stick with your uro-oncologist. Personally, I'd rather be followed by an oncologist. Tha'ts who is going to treat you/manage your treatment if, heaven forbid, you do progress.

If it makes you feel any better, unless you have a genetic form of RCC (not common), it's very unlikely for your next recurrence to be in your other kidney.

You didn't mention your Furhrman grade of your tumor or type of RCC? Clear cell? What grade (1-4)? 4 is more aggressive than 1. That might help us answer your question about how fast it can grow. Generally, not so fast that you'd feel something in 2 months unless unusually aggressive type.

Best wishes,

Todd

I honestly believe I would be better off getting caught by my wife having an affair than getting caught on the internet reading about RCC. 

I had a radical Neph  11 CM Stage 3 Grade 3 in October of 2012.  I am older than you and have all sorts of aches and pains from playing football in School and being too fat. I know I am at a high risk of reocurrence but I also know it is extremly unlikely it will be symtomatic before being discovered on a scan.  It's possible especially in the brain which sucks, but I know it is axiety - which frankly I used to look down on people for a little before I got sick. I agree with Todd and am followed by an oncologist.  I don't think there is much to be gained from reading about anything on the internet except for news of new treatments.  It is almost all out of date and it just drives you crazy.

thaxter said:

Found out four months after nephrectomy

I was stage IV right off the bat--no mets shown on chest & abdomen CT or on bone scan, but when they removed my tumor there was a secondary tumor on my adrenal gland.

First scan was 1/6 after 9/13 nephrectomy found several lung mets.  Like you I did feel every little ache and pain must be a met, but I remembered my onc saying "if you have any mets I will know before you will." 

After the Untrasound found the tumors, I was quickly given a Chest, Abdomen, Pelvic CT. and a full bone scan the next day.  That way the Surgeons knew what they might have to deal with.

With absolutely no symptoms, the enlarging lymph nodes were found on comparison CT's after the first and second years.  In 2007, the node was confirmed as positive by a needle biopsy.  The one in 2008 could not be biopsied due to location, but a PET scan gave caused enough sugar/radiation uptake that it was Dx'd as cancerous, and proved to be on pathology after the surgery.

Being in tune with changes in your body is great, but don't let it play mind games. Make a mental note, or write it on the list of "Ask the Dr." questions.  If the symptom is still present at your next check up, say something.  Otherwise, try to relax.

My oncology nurse did listen to me earlier this summer.  I was experiencing fatique, poor sleep, a cough, back ache and muscle aches. After we talked, she also understood there was depression, but she had me return in one month.  Had there not been an improvement in that time, a CT would have been ordered.

Go buy some bags of candy and enjoy the little spookies tomorrow night. Eat the leftovers.

Donna