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Concerned about follow-up plan

dbr70
Posts: 4
Joined: Jun 2011

Greetings,

Praise God that my kidney tumor was discovered incidentally with a CT-Scan exam. After radical nephrectomy, the cancer was classified as 4 centermeter RCC T1a grade 2. Radical nephrectomy was required because the tumor was centrally located. I visited the surgeon 2-3 weeks after surgery. The surgeon said no other follow-up action is required for two years. At two years, I can schedule an abdomenal MRI.

Can anyone with similar stage/grade chime in with their follow-up plan? I would prefer more vigilant monitoring at 6 or 12 months, not two years. Is this an insurance company rule for imaging? Or can I ask for more frequent imaging?

thanks!
DBR

icemantoo's picture
icemantoo
Posts: 1528
Joined: Jan 2010

My little rascal was the same size and type as yours. I had an MRI at 3 months which the doctor thought was inconclusive so he ordered at CT scan. After that it was every year with one streched out a few months at my request because I was starting Medicare. Waiting 2 years sounds unusual from what others have posted as well. Somewhere out there I believe are protcols on how often you are monitored following surgery. I am 9 years post surgery.

In any event it appears from the stage and grade of your tumor that you will get thru this with flying colors.

Best wishes,

Icemantoo

BG
Posts: 85
Joined: Jun 2011

Icemantoo,

I went in for elevated liver enzyme scan, during the scan they found a 3-4 cm tumor on my right kigney via ultrasound, and confirmed by CT scan. They will take a wedge of my kidney, not sure if open or laprscope, I go to urologist tuesday of next week. I am a 48 year old male, and freaked out, i have a 3 ayear old boy and six year old daughter.

The doctor beleives it is stage 1, and I do too based on siz, hope it is confined. He said it did not invade the renal vein. He said there was a 94% prognosis out 5 years, I hope he is correct.

What recomendations would you have?

BG

ejneary's picture
ejneary
Posts: 64
Joined: Mar 2010

Referred to an Oncologist. The Urologist will do one scan usually within the year but then your are done as far as they are concerned. You should ask for a referral to an oncologist who will suggest a plan of more frequent checks. I would not accept anything less than 6 months. Depending on the furman grade of the cells in the tumor, you might be able to go longer but.... That information will be in the pathology report usually.

Be insistent that you be referred and also about more frequent checks. You should be in the drivers seat here.

John

dbr70
Posts: 4
Joined: Jun 2011

Thanks for the advice and encouragement. In the one month after radical kidney removal, I feel like I won the lottery knowing that the problem was detected so early by a coincidental imaging test.

I visited my family practice doctor today. He told me that I do not need to be referred an oncologist. This is based on the stage1/grade2 pathology report. I expressed my concern with the surgeons follow-up plan for an MRI exam at two years. I want more frequent imaging at 6-12 months. The family practice doctor told me I can go back to the surgeon if I experience any problems related to the kidney removal for monitoring. It seems to me that the two year MRI follow-up is the standard of care decided upon by the medical community and/or insurance companies.

Has anyone researched costs for MRI exams without insurance? I would be interested in knowing. Maybe with some household budgeting I could pay out of pocket for more frequent MRI scans. It appears that imaging is the only diagnostic tool for recurrent kidney problems.

God bless you all

DarrylPe's picture
DarrylPe
Posts: 75
Joined: Mar 2011

Hi dbr70 I agree with the Iceman. I had a radical nephrectomy on April 13 for a stage 1 grade G1 tumor of about 4 cm. My doctor has me schedualed for a MRI at the end of this month. I have also had three blood test to check my creatine level because its was high before the surgery. Do as much research as you can. Good luck and God bless.

Darryl

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

My RCC was also discovered incidentally with an MRI - followed by CT. Mine was classified as Stage 2, T1 - 6.5 cm. in size. My urologist insisted on followup every 3 months initially (full round of CT scans and blood work). After the first year it was reduced to every six months. I am so grateful for the diligent followup as I did have a recurrance. It was caught early, surgically managed and for a while I returned to 3 month followups - then back to 6. I am now on a one year schedule.

As for insurance, you'd need to check with them. Some have an 'annual cap' which might affect what they approve. Most insurance companies, I believe, do not have issue with these CT's or MRI's due to the diagnosis.

Good luck to you!

donna_lee's picture
donna_lee
Posts: 400
Joined: Feb 2009

Your internist should be checking your kidney function and blood pressure every 3-4 months. Insist on it. There will be minor variance from test to test. I have a CBC-Complete Blood Count and CMP-Complete Metabolic Panel...at my internist every 4 months and at the oncologists every 3 months. Plus CT's and/or chest x-ray & abdominal ultrasound at 6 month intervals.
"Mine" was Stage IV and had mets to liver and set of nodes; also recurred two separate times in nodes at 1 year and 2 years after the initial surgery.
Your insurance may be a sticking point, but somehow, I would dig up the money for blood work on a regular basis. The rest of your body has to stay as healthy as possible to function well, and one kidney puts you at risk for high blood pressure, metabolic disease, diabetes and other problems.
Take back YOUR power and be pro-active in your care.
Good luck, and many best wishes.
Donna

engelherz
Posts: 1
Joined: Jun 2011

I had partial kidney surgery almost a year ago, The day the Dr. removed the staples he told me he did not want to see me any more for a year. I thought it strange, not even a 6 month check up, anything would have made me feel better.. Last week I had some routine blood work done and of course they did GFR and Creatine both were off the chart..My GFR was 37 and the Creatine was 1.44 ...You would think I would get a call from my Dr. to go over the results. The only reason I know the results is because the lab sends them over via e-mail when they are finished so I know my Dr. has them as well.

I'm just thinking my Kidney may be acting up again or the cancer has came back. I do have a Ultrasound this coming Thursday on my Liver for another problem I have, so I'm hoping they will look at my Kidney at the same time.
I have found this last 6 years, sometimes you just have to be your own health ADVACATE.

I am also a 4 year breast cancer survivor...I stay as positive as I can and take one day at a time, I suffer with Chronic Fibromyaligia which has been flairing now for over a year.

I found this site today, and I am hoping to make new friends and receive encouragement and maybe give alittle as well.

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

to change doctors. Find an oncologist or a good urologist. As you've probably read on this board, RCC is nothing to mess with. Let us know how you come out, please?

icemantoo's picture
icemantoo
Posts: 1528
Joined: Jan 2010

Your GFR number has to do with Kidney function and not necessarily Kidney Cancer. I am a 9 year survivor who wanted more answers from my GP and Urologist-Surgeon-Oncologist and I took it upon myself recently to see a Nephrologist to address these concerns. So far my high blood pressure is being addressed a lot more aggresively than my GP was doing and my Surgeon was not that interested in. Yes your GFR numbers with 1 kidney are abnormal, but when they really get bad they lead to heart and Kidney problems with the heart problems being of a much greater concern. This is an area of follow up that is separate and apart from Kidney Cancer recurrance or spread and needs a lot more attention. Unfortunately we need to go beyond our GPs and Urologists to address rhese concerns.

Join me in this journey for better follow up care.

Icemantoo

Jamie1.3cm's picture
Jamie1.3cm
Posts: 188
Joined: Jan 2011

I've only used my urologist throughout this adventure. I'm 10 days post-op, and he said I need a follow up ct scan anywhere from 6-12 months from now. It was my choice.

I chose the 6 month follow up, just for deductible reasons.

Keep in mind this is a very slow growing cancer (mine was growing 1 mm in 6 months).

Within reason, the decision really is yours.

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