Question

Hey Angie.. As Medic noted I was told radiation is an issue with scans. My surgeon has me in the National Cancer Comprehensive Network scan protocol. Can't provide the link but annual cat scan with 6 month chest X Ray. Made the  X Ray appointment today so the scanziety clock has started. Good luck.

daisybud said:

Me too

I get annual ct of chest and abdomen then chest xray with ultrasound at 6 month mark. I was told that would happen till 5 year mark at least.

Kim

I had CT scans annually to year 5. Than US until year 15 with a CT thrown in at year 10 Now US every 18 months at plus 16.

icemantoo

I had scans every six months for the first two years, but I didn't have clear margins.  So, I pushed for the six month scan schedule.  This past June, they moved me to annual scans.  I feel really good about that and look forward to alternating CT's with US.

Stub

If I were you I would have scans every 6 months for at least two years.  Interesting that some people say you are young and therefore you can go longer.  I think the opposite.  The fact that you are young with RCC I would want 6 month scans.  You had a 4.5 cm tumor and thankfully it was grade 1.  Congrats on that.  My husband had a 5 cm tumor that had already metastasized.  His tumor was grade 3.  I believe if it helps you to have peace of mind for a little while then have scans at 6 months.   Your outlook is quite good and I'm happy for you.  Unfortunately we all have to be vigilent.

I was having 6 monthly CT scans after my radical neph.  At 18 months I was all clear so the 24 month check was US - also all clear.  Then my 30 month CT showed multiple tumours including two in my pancreas "that had grown over the last 12 months".  

Meaning they missed them at 18 months because they were too small for imprecise radiology to actually detect.

So my take is, 12 months intervals between CT scans is a bit of a risk when they can't actually see these things until they know where to look.  But then, mRCC tumours tend to grow slowly, at least some of the time.

Everything has risks to be weighed up, so it's possible risk from radiaotion versus how fast do these tumours grow until they get to a stage where its too late for effective treatment?

I'm counting on computer-aided analysis of scans to be developed so human error comes out of the equation, and hopefully a definitive blood test for early signs of cancer.  Until then I'll stay with 3-monthly CT scans.

Difficult to know what is the best path forward, isn't it?

Best wishes,

Fred

Allochka said:

Hi,

Hi,

my husband was a Stage 1 (less then 3 cm) and also grade 1. He was having ultrasounds and chest x-rays every 6 months for 3 years after surgery. Last year at 3 years mark he had abdominal CT scan instead of ultrasound. After it was clear he was moved to annuals scans (ultrasound and chest x-ray). His doctor also didn’t like frequent CTs due to his young age and radiation. But he was checking him wuth US twice a year at lest for 3 years.

Perhaps you can also ask for ultrasound, but more frequently than yearly?

I honestly think that recommendations are different if you are being seen by your urologist, or an oncologist.  

Our urologist was over-confident.  The oncologist we saw while waiting for surgery was more experienced with cancer patients (obviously).  

I find something else kinda interesting.  Almost everyone here talks about going from every 6 months to an annual scan.  That's a big jump, it is actually double the time to wait.  In my husbands case we gradually worked our way up to annual scans, increasing the interval by one month each time.  Mentally, we couldnt cope with the jump to waiting an entire year.  (Keep in mind he was stage 4 from the beginning).  Its so very, very different from stage 1.  However, I have to say we were told he was stage 1 with his little 5cm tumor, and while waiting for surgery they did an entire body ct/pet and found it in lymph nodes and bones in multiple locations.  The urologist didnt order the extra tests.  It was the oncologist we saw that wanted the whole picture.  We are thankful.

Angiebby75 said:

Oakley, I never had a Pet

Oakley, I never had a Pet scan. I would of felt better having one. I wonder why my doctors never had me do one. I did have an MRI of the brain and that was clear. Now with finding out I had endometriosis. I don’t what pain should I be concerned about for cancer or pain from that. Is a Pet scan rountinely done before surgery.

No, a Pet/ct is not routine.   Nor is it ordered preoperatively.  I believe it is mostly ordered to look at severe pain that could be bone mets.  There are plenty of people on this site who have never had one.  Please do not think you are missing something.  My husbands back and hip pain was severe.  More pain than is expected for a 5 cm tumor.  He had bone mets.  Some people do have nuclear bone scans one time to just make sure everything is okay.  Just like you had the brain scan.  To make sure all is well.  Sounds like you do have a thorough doctor.   I didnt want to alarm you, just give you further information.  I think you are doing an excellent job of advocating for yourself and learning all you can.  As they say, knowledge is power.