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For the first time... Scanxiety?

jason.2835
Posts: 337
Joined: Nov 2014

Hey, all,

So I just set up all my appointments for my one-year scan coming up in September.  Have to get a renal ultrasound, a chest x-ray and a basic metabolic panel... The x-ray is new; he didn't order one at the 6 month follow up.  The last time I can't say that I had the dreaded "scanxiety," but something weird happened and I need to know if I'm crazy or not.

I scheduled the ultrasound and x-ray at the same hospital; when I talked to the scheduler over the phone I did the US no problem, then I went to schedule the x-ray and she asked me, "and why did he want you to have an x-ray?"  I said, "I actually have no earthly idea, I just assumed it was a normal part of the scan."  Then she just said "Ok" and went about her business.

Then, when I called my primary (who is also going to do the blood work), they sort of asked me the same thing about the x-ray, like it isn't par for the course.  It was just a weird question...what is usually part of your regular scans?  Would you read anything into his adding a chest x-ray to the scan, or is it just a "better safe than sorry" thing?

I'm probably just being an infant.

- Jay

APny's picture
APny
Posts: 1947
Joined: Mar 2014

I have a kidney US and chest x-ray every six months. My next round is also in September at 1 1/2 yrs past surgery. I'm surprised you didn't have one at six months. I think it's good that you're getting it. As for the anxiety, I totally get it. I'm already getting nervous when I think of next month.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Maybe they do x-ray once a year?

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

Having a chest x-ray is minimal followup along with some type of abdominal imaging. They are looking for mets in the lungs. Mets tend to go next to bones or lungs or other abdominal organs.

Some doctors recommend better followups including a CT of chest/abdomen and pelvis for 3 years (every 6 months) for lower risk patients then yearly to 5 years. You can read the guidelines in some studies but also in places like the american urological association and on the NIH/NCI website. I posted somewhere awhile back how to get into the website and download the recommendations of the NCI for this. I can't find it right now, but if you search back through the archives you shold be able to find it.

Go to:

https://www.auanet.org/education/guidelines/renal-cancer-follow-up.cfm

Scan down for low risk pT1 guidelines and you will see what's recommended for Stage I disease.

The problem with a chest xray, is it will not pick up lung mets until they are pretty good size. It's not likely to pick up anything early. With a CT they can follow more closely.

I'd want a chest/abdomen/pelvic CT with contrast during the first 3 years at least every 6 months. The highest risk of recurrence is in the first 3 years. Even with low risk disease, I'd want an annual one after that.

You do need the chest xray and the us. Those are not going to catch early disease though. If you can talk them into a CT with contrast of the chest/abdomen/pelvis, I'd get that. Personally, I'd rather they catch stuff early when it might be operable and get it out of there.  If your doc says no, do some doc shopping. Find an oncologist with RCC experience and see what they want to do. I'll bet they'd do more unless your insurance company is giving them limitations.

Best wishes,

Todd

jason.2835
Posts: 337
Joined: Nov 2014

Thanks, Todd.  I've been constantly wondering about the CT and why they're keeping me away from it.  I understand that my odds are really good but I would definitely feel better with a clean bill of health from a CT or MRI rather than just an xray.

- Jay

APny's picture
APny
Posts: 1947
Joined: Mar 2014

Actually, looking at those guidelines for low risk radical nephrectomy it seems like your doctor is following the protocol exactly. Baseline imaging using US, MRI, or CT within 3 - 12 months of surgery and yearly chest x-ray. Then follow up imaging with US, CT, or MRI. But if you'd feel better with a CT scan by all means ask for one. My US picked up a sub-centimeter cyst so it's possible to detect small growths with US but whatever gives you more peace of mind is what you should ask for.

Skagway Jack's picture
Skagway Jack
Posts: 221
Joined: Oct 2013

Jason,  

Todd is right about frequency and type of scans.  Did they do a basline CT of your chest yet?  An X-ray is fallible in that it will not pick up mets behind bones and thus the larger size requirement.  I keep copies of all of my scans and often look them over while waiting for the Dr. appointment.  Ive learned that looking at them helps me to be engaged even if I dont know exactly what I am seeing.  Be your own advocate and talk to your Doc about getting a CT of your chest.

I am coming up on my two year scans in mid August.  They are doing a CT chest and abdominal and a MRI.  My numbers (GFR etc) have not been so good so contrast will be questionable...thus the MRI.  I have not had a MRI before so this will be a new one on me. My tumor was T1B but was grade 3 with significant necrosis.   I will have gone one year since my last scan and of course I am experiencing scanxiety too.  I am doubly nervous as I have a chronic cough that has developed over the last nine months.   Jason,  best luck on NED! 

Jack

Allochka's picture
Allochka
Posts: 869
Joined: Nov 2014

Jason, as I understand, many docs do x-rays and ultrasounds for young low-risk patients instead of CT. The want to avoid too much radiation, when recurrence risks are really low. This is what my partner, same age as you is getting. I wonder if he should get CT at least once a year....

but in you case chest x-ray is just part of the protocol, it doesn't mean that doc is suspecting something...

 My partner is also getting scans in SEP. Let't go through this scanxiety together :-) you both MUST be all right :-)

foroughsh's picture
foroughsh
Posts: 775
Joined: Oct 2014

Jason,

Your scanxiety is understandable, we all feel almost the same when it comes to our own scan time. You are stage I so having yearky  chest X-ray is based on baseline. I think drs prefer against CT unless they have to because it has some possible serious side effect. So if a stage I patient doesn't have any related sign or symtoms they prefer X-ray for follow up. Don't worry, I'm sure you'll have good news for our board.

Forough

 

 

 

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

Which is why you didn't get a chest xray last time. I bet you had one initally at diagnosis. So a year ago??

Since my husband is Stage 3 he gets CT with contrast (abdominal AND chest) so hence no xray.

 

Since you are not getting a CT I guess they want to rule out lung mets this time around without exposing you to lots of radiation. 

 

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