Renal Cell Carcinoma (Kidney Cancer) Support Group
Renal cell carcinoma, also known by a gurnistical tumor, is the most common form of kidney cancer arising from the renal tubule. It is the most common type of kidney cancer in adults. Initial therapy is with surgery. It is notoriously resistant to radiation therapy and chemotherapy, although some cases respond to immunotherapy.
I JUST HAD MY 3 1/2 MONTH FOLLOWUP SCANS DONE. THEY CAME BACK NORMAL. MY GLUCOSE WAS OFF AND THERE WAS CONCERN ABOUT THE PANCREAS BUT THAT SHOWED OK. NOW MY QUESTION IS HOW OFTEN DO YOUR DOCTORS SAY WE SHOULD HAVE MORE FOLLOW UP SCANS AND DO THEY USE CT SCANS OR MRI??? I'M NOT SURE YET WHAT MY DOCTORS PLAN IS BUT I HOPE TO FIND OUT SOON. THANKS LENNY
I've been wondering that as well. All I can tell you is I have a CT scan on New Years Day and my oncologist now wants another in May, so it looks like maybe 3 a year.
He also tells me that MRI's are useful, but not as good as CT scans. e also says PET Scans are very good for most cancers, but can be misleading for RCC and for prostrate cancers, so don't trust them..
I'd guess that the frequency of scans would depend a bit on the individual physician and upon how aggressive and advanced the disease is in each individual.
Let us know how you make out. It's a question of interest to all of us.
Regards
Dave
I have been on Sutent through 5 cycles (4 weeks on and 2 weeks off). I have just started my 6th cycle. For the first four cycles I had MD appts at the end and beginning of each session. These appts include a Catscan and MRI. The catscan is without contrast as I am allergic to shellfish. I also have blood and urine samples with each appt. and an EKG in another office. After the 4th cycle, the catscan and MRIs are now every other cycle. I also meet every couple of months with a nephrologist who monitors my blood pressure and cholesteral. Of course, this all depends upon the protocal of your facility. I am at Sloan-Kettering in NYC and am impressed how quickly they turn around the results of the tests. Hope this helps.
I have witnessed many rcc patients who either decided (or their medical team decided ) not to pursue a regular follow-up protocol. -- Because of the characteristics of rcc - this is not a wise choice.
After my initial surgery - we knew that the primary tumor site had been completley and successfully removed. But my urologist/surgeon who was not an expert in kidney cancer wisely told me that a frequent follow-up protocol offered the best chance of long-term survival.
That was almost twelve years ago -- for the past 8+ years, I have been cared for by a team of experts - we have a quarterly CT scan with contrast of the chest, abdomen and pelvis - every six months we add a neck scan.
I have had numerous other tests, treatments, and we are successfully containing mu situation.
Since I have been on sutent for over 2 years - I am on my 18th round - I have bloodwork done every three weeks, a doctor visit every 6 weeks, an echocardiogram done every 6 months, plus the ct scans.
For me, I regard these procedures as routine, life saving and necessary. I look at any of them much as something that is routine - almost like taking out the garbage or making the bed.
For what it's worth -- remember - this is your rcc journey -- you are entitled to ask questions of your doctor, and then to receive accurate, candid and timely answers -this is only my opinion - but you should have already been told what your follow-up protocol would be
Couple of links with reliable information:
http://www.cancercare.org/pdf/booklets/ccc_kidney_cancer.pdf
http://urologyhealth.org/adult/index.cfm?cat=04&topic=124
I am also attaching a YouTube slideshow that I put together - please watch and enjoy-- and feel free to pass this along to all you correspond with-
http://www.youtube.com/watch?v=_CYiNqImzos
Warmest Wishes -
Best of Success - Mickeral
rcc survivor/overcomer since Nov 1997
lenny