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RCC in 2018, what is standard follow-up for you like?

Lindaco
Posts: 2
Joined: Mar 2018

Hello all,

 

I was diagnosed with an aggressive RCC in Jan 2018.

My kidney and 7,5cm tumor were removed 3 weeks later... and then they said: you are cancer-free. 

I have annual CT scans of my abdomen, an annual check-up with a nephrologist and dietician. My remaining kidney is at 41%.
I also have bloodwork every 3 months.

  • Should I trust this is enough? I always feel like there should be more than just relying on the CT-scan results.
  • What if it has spread to somewhere else? How would they detect that? 

Am I worrying too much? or Is this all standard procedure and I should trust this.

Also: I now have a new baby to worry about...a hernia where the scar is, on my right flank. I hope this doesn't involve more surgery...I've since divorced and am on my own. I can't really afford to take time off work...and taking care of myself post-surgery would be challenging.

 Thank you in advance for sharing your opinion about post-surgery check-ups.

Greetings from Belgium,

Linda 

 

 

AliceB1950's picture
AliceB1950
Posts: 125
Joined: Jun 2019

Mine was just enough smaller than yours to be stage 1 at 7cm exactly, and also agressive at stage 4. But the surgery removed it all, so I get my scans and don't worry about it. I've had other cancers and based on my medical history, I could get other new ones, or recurrences of old ones. I could also have a stroke or a heart attack or get hit by a car. I choose to not live in fear of what might happen.

eug91's picture
eug91
Posts: 332
Joined: Jan 2019

My procedure is similar to yours. In my first year, I had scans every six months. I'm now every twelve-months getting a CT scan (or MRI) of my abdomen, along with a chest x-ray. From what my doctor told me, any recurrence will most likely be in one of those two places - and of course, the more time that passes from my surgery, the odds of recurrance go down.

The most important thing is to stay up-to-date on the annual appointments so that they catch anything early, and to help monitor your overall health and the health of your kidney. 

If you're still worried, talk to your doctor about it - express your concerns and perhaps there's something they can adjust to your follow-up routine? 

And congratulations on your new baby! I know it's extremely hard work, but it's also a blessing to be able to have a baby after having beaten cancer. At least your baby will grow up to know that mom is VERY TOUGH. :) 

 

a_oaklee
Posts: 567
Joined: Nov 2013

Follow ups are determined by many factors.  Age, family history. Pathology, grade, stage, etc, etc.

 

In your case, I would want a chest xray, as part of your annual screening.

m@rtin
Posts: 12
Joined: Sep 2020

hallo linda don,t forget to do a scan every six months that,s the only thing you can do

best regards

martin( from the nederlands)

donna_lee's picture
donna_lee
Posts: 1018
Joined: Feb 2009

Before I get too deep, click on my user name and read what I went through staring in 2006.  Since that time, there have been ups and downs, because CT's catch a lot of stuff.  Enlarged thyroid with tests including nuclear uptake to a biopsy....and it turned out to be an enlarged thyroid.  Yay.  I got to the time that I was only having a chest x-ray combined with US of the abdomen and pelvis every 6 months, with a CT every 2 years.  Then a test would come back with questionable results and I go back to more frequent appoints and tests.

This past year was one CT a year with visits to either the Oncology nurse or Dr. every 6 months. But because I'm almost 77 with one kidney, I'm also going to a nephrologist every 4-6 months.

Everyone has different stories, Dx'd at different ages and Stages.  Treatment and monitoring protocols vary, but there are still lab tests and CT's, the only real way to watch what's happening.

Best wishes and Hugs from Oregon,

donna_lee

Bay Area Guy's picture
Bay Area Guy
Posts: 518
Joined: Jun 2016

My follow-up was a chest x-ray and CT every 12 months (mine was a 1.7cm lesion removed in a robotic partial).  Last year was year 4 after surgery and I was told that was it.  My urologic oncologist and surgeon are at Stanford and I was referred to what they call their "Survivorship Program".  My initial appointment is in December.  I will be asking if they can set me up with an abdominal ultrasound every year.  I'm not as concerned about the RCC recurring (although that's always a mini concern) as I am about recurring abdominal issues (intestinal twisting requiring two past emergency surgeries in 2004 and 2010) and a family history of aortas issues (my dad had his aorta replaced due to an aneurysm and his father died of a ruptured aorta).  So I'm figuring a regular peek at my aorta would not be a bad idea, but I'd prefer an ultrasound to a CT to minimize radiation exposure.

AliceB1950's picture
AliceB1950
Posts: 125
Joined: Jun 2019

You might not be able to get those ultrasounds scheduled through the urologist or surgeon, since they don't fall under their specialties. My first CT caught an aortic aneurysm, and my oncologist (from a different cancer) told me about it because she had ordered the scan, but then I've seen a cardio-thoracic doctor to follow it and schedule chest scans. It gets tricky because I have the oncologist who wants to see my lungs, the urologist who wants to see my abdomen, and a cardiologist who wants to see my heart area - but they don't do a good job of coordinating scans. I'm trying to get it all coordinated through my primary doctor so I don't have contrast injected too often with separate scans. But it's tricky with the way insurance is billed.

Bay Area Guy's picture
Bay Area Guy
Posts: 518
Joined: Jun 2016

Yeah.  Insurance is certainly an impediment at times.  We'll see what they have to say.  Since the ultrasound is "relatively" inexpensive (at least compared to a CT), I'm hopeful the insurance company won't be too picky.  I have 10 more months before I have the appointment.

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