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FOLLOW UP TESTING PLAN

corey50
Posts: 111
Joined: Feb 2009

Hi Everyone, I know there has been discussion about treatment plans and how they differ from person to person and with diagnoses, but I was wondering if anyone could give some insight if there situation is similar to mine. In 2008 I was diagnosed with stage 1 renal cell carcinoma, found by a routine ultra-sound for something else, and I had a radical left nephrectomy. No other treatment was needed. Because I was already a cancer survivor, of another stage 1, I already had an oncologist. So, I see my oncologist every 6 months with a physical check up and blood work and once a year I see the urologist who removed my kidney. He does an u/s right in his office of my remaining kidney also checks my urine and also does blood work for kidney and liver functions. For the first five years I had either a ct scan of chest, abdomen and pelvis alternating with a u/s of abdomen and chest xray every 6 months. But for the last 2 years my oncologist has switched to once a year imaging. This year which is coming up, he wants to do just an u/s because of the radiation exposure risk from all the ct scans, but wants to do just the remaining kidney and not even the whole abdomen. With, of course the chest xray also. If anybody's situation is similar to mine could you tell me what your routine is for follow-up: how often, what imaging is done, what parts of the body. Thank you so much and continued good health and blessings to all of us. 

icemantoo's picture
icemantoo
Posts: 3221
Joined: Jan 2010

Corey,

I am 13 years NED. Had a CT annually for 5 years than annual Ultrasounds for the last 8 years which varied, between, kidney, kidney and  bladder and abdomen. At year 12 I also had a CT of the abdomen as well. Moving to Florida with a new Laproscopic Surgeon for follow up and who knows what his take will be (highly recommended from the first URO in Michigan).

Had several Chest CT's unrelated to RCC issues in the last few  years.

 

Icemantoo

corey50
Posts: 111
Joined: Feb 2009

Thank you, icemantoo, I have followed your journey as well, and it is so heartening to see someone with so many years of NED and such a good attitude about it all.  And may I wish you many, many, many more years of good health and good luck with your move to Florida. 

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

But from what I've learned about the spread of this disease, looking at the remaining kidney for mets would be a mistake. Metastasis to the opposite kidney is rare. The most likely place for mets are lungs and bones and other internal organs like liver. I believe brain is even more likely than the other kidney (although routine imaging of the brain is not done for several reasons). If the doctor is monitoring the other kidney for cysts (because of a concern for reduced kidney function), then it makes sense. But I'd want the blood tests to monitor kidney function done. My nephrologist monitors several blood values to make sure my kidney function is ok.

The radiation exposure from CT scans, while high, is not likely to cause problems for a couple of decades or more. You don't mention your age. From what I read, the frequent CTs we receive for followups is less radiation exposure than technicians get working in these areas.

My situation is different than yours. I had Stage 3 to start with. They did imaging (CT of chest/abdomen/pelvis) every 4 months the first year, every 6 months the second year and the plan was to switch to yearly after the third year. Now that I developed a met to my adrenal gland, I'm back on a 3 month schedule for 3 years. I've seen presentations that say that the current guidelines miss a lot of mets.

I know 2-3 people in my area that have had ongoing issue with this disease, including a 4th who had Stage 1 10 years ago and just had found a met. She was getting yearly imaging for the past 10 years and that's how her problem was found.

Personally, I'd want yearly imaging of lungs/abdomen and pelvis even if I was Stage 1 (CT with contrast if possible) forever. I'm basing this on the number of people I've met that have had mets discovered years after even though they had early stage RCC to begin with. The earlier a met is caught, the more likely it is to be operable. By the time you have symptoms, it seems to me that metastasis is most likely already to the point of not being operable.

Is this oncologist an expert or very experienced with RCC? It might be worth a consult with an oncologist who sees a lot of RCC. It may be fine. I don't understand the oncologist only doing a u/s only of the other kidney, given the rarety of metastasis to the opposite kidney (except in cases of genetically inherited RCC).

I've become a little "vigilant" in terms of RCC, but, then, finding a single met in my adrenal before it's spread anywhere else has paid off so far.

Best wishes,

Todd

icemantoo's picture
icemantoo
Posts: 3221
Joined: Jan 2010

I have a caveat to Todd's comment above. Those of us who have had RCC have a much greater chance of developing  an additional RCC in the other kidney. Like 2%. This may be separate and distinct from mets. from the original buggar.

 

 

Icemantoo

jason.2835
Posts: 337
Joined: Nov 2014

Corey,

I am on a 6-month schedule for the first two years, then yearly following this.  Right now, because of the small size of my tumor, the doctor only recommends a chest x-ray, ultrasound of entire renal system and blood work.  

I am actually due for my visit with him next Friday on the 18th.  I will be asking him if, at some point, he recommends at least a "baseline" CT scan, which I've never actually had.  

I was diagnosed with an MRI after my tumor was found incidentally on an abdominal US for my gallbladder.  He did tell me last time that he feels my risk is even lower because he was forced to do a radical neph when the plan was originally to do a partial.  The diseased kidney is completely out of me; thus, less chance of pesky cancer cells being left behind.  

So far, I'm ok with the somewhat unaggressive plan because it is following the guidelines set forth by the NCI (Nat'l Cancer Institute).  I guess my main question is going to be whether there is something iron-clad that would trigger him to get more aggressive with the scanning.  Blood test?  Protein in urine?  US results?  Just not sure what would cause concern.  

But, Cliff's Notes version, I'm at 6-months for 2 years then yearly after that which would begin in Sept/Oct of 2016.  Sounds like your doctors goes above and beyond already so if he's happy with less scans, I would probably be happy as well.

- Jay

corey50
Posts: 111
Joined: Feb 2009

I guess we're always wondering if we're doing as much as the next guy or too much with concern to radiation exposure. I guess the key is to find a doctor we like and trust and then as you say educate ourselves on the standard guidelines. Good luck to you.

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