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Follow-up scans

DanielQ's picture
DanielQ
Posts: 32
Joined: Sep 2019

Hi everyone,

I just had my first follow-up visit with my doctor. Regarding follow-up scans, he asks me to do an ultrasound + chest X-ray every 6 months. This seems different from most posts I read here with frequent CT scans. Probably my doctor wants to avoid too much radiation and toxic dye on young patients?

I wonder whether I should do 3-month checks, and do an MRI as well. MRI has no radiation and somewhat less toxic dye (I think), which should work best in my case. 

Can anyone share what kind of follow-up scans you do after surgery and how frequently? Is CT always required and can MRI replace CT?

Thank you,

Daniel 

donna_lee's picture
donna_lee
Posts: 901
Joined: Feb 2009

A lot depents upon the Stage (1-4) and TNM scores and Fuhrman grade.  (You can look those up under Kidney Cancer DX thru ACS.)  That said, your age, the size of the tumor and the aggressiveness of the type; and your Dr. will determine when and what type of monitoring is done.

Mine was already Stage 4 at the time of Dx, so my follow up CT's were at 3-4 months. The diffference between a CT at 9 mo and almost 12 mo showed an enlarging node, which was surgically removed.  The following year, it was the same story, with another enlarging node removed the following year.

I had Ct's every 4 mo. for a couple of years, then every 6 months. Then the Onc. alternated a CT with a Chest X-ray/abd-pelvis Ultra sound for the next couple of years. (i.e CT/X-US/CT/W-US)

This went on for about 2-3 yrs, until my thyroid was caught in a CT and it was enlarging.  More types of tests up to a biopsy, and it was benign enlargement of the thyroid.

Back to square 1- CT every 6 months for a few years, then once a year for a couple of years, until they found something else that shouldn't have been there.  It turned out to be a clearing infection in my left lung; but they were concerned it was a recurrence of the RCC in my lung.  That was 2 years ago, and I just had my most recent CT on 9/23, which was clear.

Daniel, take one week or month at a time.  Let the tests tell their story and the Dr. make a decision for what comes next.  Each person has a slightly different story to tell.  And with luck and vigilance, you'll have great tales, humorous events, maddening support staff, and a family who helps take care of your physical and emotional needs as you start this jorney.

Hugs,

donna_lee

DanielQ's picture
DanielQ
Posts: 32
Joined: Sep 2019

Many thanks Donna. I read about your story in your other posts and it's very encouraging and inspiring. Congratulations on beating Stage 4 RCC :)

Mine is stage 1, also ccRCC. Size is relatively small (1cm). Even so given my age (20s) I am still quite worried about recurrence -- it will very likely come back again sometime in my future life. I have to be well prepared for its recurrence. 

Allochka's picture
Allochka
Posts: 874
Joined: Nov 2014

Hi Daniel,

 

I don't want to sound dismissive, but I've read a lot regarding Stage 1 recurrence rates, since my husband was also Stage 1. Well, if the tumor has no additional bad features (sarcomatoid, or vascular invasion, etc), recurrence rates for tumors less than 3 cm are really-really small. 

Do you know your grade? It is also a prognostic factor. 

You should definitely continue follow ups, most probably for many-many years. But if your tumor was so small and had no bad features, you should not loose your sleep about recurrence possibility. After all, you've beaten cancer and should celebrate life, not live in fear!

No one can guarantee that recurrence won't happen 100 %. But possibility is VERY low.

Regarding follow-up - my husband with 2 cm tumor and Fuhrman grade 1 had the same schedule for 3 years - ultrasound and chest x-ray every 6 months, with CT scan thrown in once in couple of years.  Now he has follow-ups once per year. 

So for non-aggressive tumor it sounds like normal schedule. Just don't skip them and don't stop at 5 years. You being young and having long life ahead is the reason docs don't want too many CT scans on you due to radiation.

 

Good luck!

Alla

 

DanielQ's picture
DanielQ
Posts: 32
Joined: Sep 2019

Thank you Alla.

As far as my pathology states, my tumor doesn't show any bad features. My WHO grade is 2 (which I think is the same as fuhrman grade?) so I am not as lucky as your husband. 

It's good to know this sounds like normal schedule. I will certainly keep my attitude positve and dare not skip any of these scans... 

Daniel

APny's picture
APny
Posts: 1949
Joined: Mar 2014

I had the same exact follow up protocol. After three years I went to yearly scans. 

DanielQ's picture
DanielQ
Posts: 32
Joined: Sep 2019

Hi APny,

Thanks. Maybe this is Dr. Russo's standard protocol. Glad to know all went well with you.

Daniel

 

APny's picture
APny
Posts: 1949
Joined: Mar 2014

Thanks, Daniel. So far so good. I'm sure all will go well with you too!

Max57's picture
Max57
Posts: 160
Joined: Mar 2015

Daniela

This will help you a lot in your journey it's very important to watch to the end 

https://youtu.be/blUI-ZzcViE

Deanie0916
Posts: 259
Joined: Nov 2016

I'm three years out and I had 6 month follow up for the first 2 years alternating CT scan them the next time an ultrasound. Now I am on a yearly follow up CT scan.

ann1027ette's picture
ann1027ette
Posts: 1
Joined: Oct 2019

I had a Stage IIb larg mass, but they were able to retian 80% of my kidney function.  I am on yearly scans and Chest X-Ray.  My body has created havoc since then.  I went into Type 2 diabetes due to the loss of the kidney and now that is working against everything.  I was a large diet soda drinker and I think that is what may have caused my cancer.  I am brand new here.  Thanks for letting me view your thoughts.  Once I had surgery many people were like.... "Ok you're cured now."  But I still worry about recurrence.  

Annie

APny's picture
APny
Posts: 1949
Joined: Mar 2014

Annie, I really doubt diet soda caused your cancer. I never drank soda and yet here I am. In fact, I had none of the risk factors except perhaps age. I ate right, worked out, didn't smoke, drank just socially, and still ended up with RCC.  Hope you get your diabetes in check and all the best to you! 

DanielQ's picture
DanielQ
Posts: 32
Joined: Sep 2019

I agree with AP. Sometimes the occurence of kidney cancer can be quite random (maybe someday in the future scientists will figure it out in a deterministic way). I don't have any risk factors at all  and I am still here. Most of us are "innocent" here.

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