Another CT Scan?

SFBob · September 2016

Hi All,

I haven't been around for a while. Got some wonderful support here at the time of my radical nephrectomy. Have been back a few times, in part to try and "give back" a little, but I confess life has gotten busy with other things and I haven't been back as much as I intended to.

I'm looking for some advice. I had a 4.0cm tumor that resulted in a radical nephrectomy in Feb 2015. The good news was that it was still Stage 1A (barely). The bad news was that because of its location against the main vein a radical was required, and the tumor turned out to be a Grade 3.

I had a chest/abdomen/pelvic CT scan in Oct 2015 that came out clear.

Now the anniversary of that first post-op scan is coming up. The NCCN Guidelines say:

Chest: Chest x-ray or CT annually for 3 y, then as clinically indicated.
Abdomen: Abdominal imaging beyond 12 mo may be performed at the discretion of the physician.

My doc will obviously have his opinion as to what's warranted, but since there's discretion involved here, he may be influenced by what I'm most comfortable with. I THINK for this first "annual" scan I'd be most comfortable with another CT Scan instead of just a chest X-ray. But am I being silly to want to expose myself to that additional radiation for reassurance about something that at this point is a relatively small risk?

Thanks. Of course I feel a bit guilty asking this question here where I know many people are struggling with much more difficult questions/situations.

Footstomper · September 2016

I think

If you want want a CT scan, get a CT scan. You've got Cancer, its a bit too late to be worried about radiation. Good luck

Allochka · September 2016

Can you get an ultrasound

Can you get an ultrasound instead of abdominal CT scan? No radiation, much cheaper, and good doc on a good machine can see really a lot.

I would definitely want some kind of abdominal imaging even past one year mark

hardo718 · September 2016

Peace of mind

Is a big deal too, so if CT is what you need, then opt for that.

Just my opinion. I look forward to hearing NED paid you a visit. :-)

Donna~

SFBob · September 2016

Allochka said:
Can you get an ultrasound
Can you get an ultrasound instead of abdominal CT scan? No radiation, much cheaper, and good doc on a good machine can see really a lot.

I would definitely want some kind of abdominal imaging even past one year mark

Thanks--I've thought about

Thanks--I've thought about that. They say it's not as good for catching things early--but given no radiation, certainly makes sense over not doing an abdominal scan at all.

SFBob · September 2016

hardo718 said:
Peace of mind
Is a big deal too, so if CT is what you need, then opt for that.

Just my opinion. I look forward to hearing NED paid you a visit. :-)

Donna~

Peace of mind

Ah, so true. Thanks.

Bob

Beanie1 · September 2016

CT or Not?

Hi, I lost my left kidney to cancer in 2012 which was found accidently. Over

the following years I asked for bloodwork and urine tests to see if the one

I had left was healthy. Last year there were red blood cells in urine so I

asked for an MRI which does not have radiation. This year I kept insisting

on the urine and blood testing which the red cells were there, and the one

kidney I have is functioning at 57 instead of the normal 60. I changed to a

new urologist that seems to actually care about his patients, and I am having a CT soon. Maybe no contrast if my kidney function is too low.

You can get an MRI, but they cost as much as a CT (no radiation). Maybe

get the blood and urine tests along with an ultrasound to keep an eye

on things. Take care, and God Bless!

icemantoo · September 2016

Beanie

Beanie,

You mentioned that your kidney is functioning at 57 instead of a normal 60. Those numbers correspond to a mixture of your creatine level and age. Those of us with 1 kidney have lower numbers than those of our "normal" 2 kidney brothers and sisters because our creatine levels are higher. . Meanwhile fill out your bio on MY CSN Space and welcome to our club which no one in their right mind would volunteer to join.

Icemantoo

SFBob · September 2016

Beanie1 said:
CT or Not?
Hi, I lost my left kidney to cancer in 2012 which was found accidently. Over

the following years I asked for bloodwork and urine tests to see if the one

I had left was healthy. Last year there were red blood cells in urine so I

asked for an MRI which does not have radiation. This year I kept insisting

on the urine and blood testing which the red cells were there, and the one

kidney I have is functioning at 57 instead of the normal 60. I changed to a

new urologist that seems to actually care about his patients, and I am having a CT soon. Maybe no contrast if my kidney function is too low.

You can get an MRI, but they cost as much as a CT (no radiation). Maybe

get the blood and urine tests along with an ultrasound to keep an eye

on things. Take care, and God Bless!

Hi Beanie

Hi Beanie,

Would this be your first scan since the surgery? I believe that the NCCN guidelines (https://www.nccn.org/professionals/physician_gls/f_guidelines.asp) state that with a radical nephrectomy you should have at least had the following:

- History and Physical every 6 mo for 2 y, then annually up to 5 y

- Comprehensive metabolic panel and other tests as indicated every 6 mo for 2 y, then annually up to 5 y

- abdominal CT, MRI, or US within 3–12 mo of surgery

- If the initial postoperative imaging is negative, abdominal imaging beyond 12 mo may be performed at the discretion of the physician

- Chest x-ray or CT annually for 3 y, then as clinically indicated

Bob

Teashea · October 2016

My cancer

After being in remission for 9 years and having ultrasounds yearly and always told I was fine and no opservation of any cancer. Well hell, I had a cat scan and it showed a lung mass and right adrenal gland tumors that made me stage 4. My feeling are that ultrasounds are not good enough. This is your life, there is financial help out there. Please opt for the cat scan.

foroughsh · October 2016

Footstomper said:
I think
If you want want a CT scan, get a CT scan. You've got Cancer, its a bit too late to be worried about radiation. Good luck

100℅ agree with footstomper

100℅ agree with footstomper

SFBob · October 2016

Yipes

Wow Teashea, I'm sorry. I looked at your write-up--sounds like you've been through the wringer. Good luck with the Cabozantinib!

Re the annual ultrasounds: Were they accompanied by a chest x-ray? From my reading of the NCCN Guidelines, I believe that's considered the minimum requirement for annual follow-up for the first few years.

Bob

todd121 · October 2016

Stage 3 Followup

My oncologist did CT scans of chest/abdomen/pelvis every 4 months first year, then every six months the second year. The rate of recurrence for Stage 3 is higher than Stage 1/2. You want to catch it early. My oncologist is a kidney cancer specialist doing research into kidney cancer.

In my second year I was on scans every 6 months, and I had a recurrence that was confined to the adrenal gland. I was glad I was getting CTs more often. After my recurrence, I'm getting CTs now of chest/abdomen/pelvis every 3 months. I asked my oncologist how long we'll be doing that for, and he said from now on for quite a while. My risk of recurrence is too high and he wants to catch anything early while it still may be operable.

My 2 cents is CTs of all three areas and I'd go for at least every 6 months for the first 3 years, then annually after that. I wouldn't stop at 5 years either. I've met too many people with recurrences 6-10 years later. You want to catch recurrences before symptoms popup. By the time symptoms pop up, it's often not operable if it's spread.

I noticed urologists often go with the minimums, while oncologists, particularly oncologists with expertise in RCC, tend to do CTs and at a higher frequency, particularly those of us with higher chances of recurrence.

Best to you,

Todd

todd121 · October 2016

SFBob said:
Yipes
Wow Teashea, I'm sorry. I looked at your write-up--sounds like you've been through the wringer. Good luck with the Cabozantinib!

Re the annual ultrasounds: Were they accompanied by a chest x-ray? From my reading of the NCCN Guidelines, I believe that's considered the minimum requirement for annual follow-up for the first few years.

Bob

Minimum Requirements

I wouldn't want the minimum followups (in terms of frequency) and I wouldn't want xrays or ultrasounds. By the time something shows up on an xray, it's already been there for awhile. Especially for Stage 3. The recurrence rate for Stage 3 is something like 20-40%. Much better to catch something early and a CT (even without contrast) is a much better test than an ultrasound or an xray. With several CTs over time, the radiologists have a good moving baseline to compare for changes each time.

This is just my experience from talking to my oncologist. It panned out well for me. I caught my adrenal tumor early before it had spread. I'd push for close observation in this case. If you have trouble getting your doc to agree, I'd look for another opinion.

I don't know what "minimum" requirements are based on...If anybody knows, I'd love to hear it.

Todd

sblairc · October 2016

todd121 said:
Minimum Requirements
I wouldn't want the minimum followups (in terms of frequency) and I wouldn't want xrays or ultrasounds. By the time something shows up on an xray, it's already been there for awhile. Especially for Stage 3. The recurrence rate for Stage 3 is something like 20-40%. Much better to catch something early and a CT (even without contrast) is a much better test than an ultrasound or an xray. With several CTs over time, the radiologists have a good moving baseline to compare for changes each time.

This is just my experience from talking to my oncologist. It panned out well for me. I caught my adrenal tumor early before it had spread. I'd push for close observation in this case. If you have trouble getting your doc to agree, I'd look for another opinion.

I don't know what "minimum" requirements are based on...If anybody knows, I'd love to hear it.

Todd

have you read this?

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

corey50 · October 2016

The staging at diagnosis

The staging at diagnosis (stage 1 will not have the same testing protocol as stage 3 or 4), the type of surgery, any recurrences, amount of time since original dx or recurrence, personal history of other cancers, and family history. These should all be used to determine which testing is right for each person.

The american urological association link posted above for renal cancer follow-up care states that those with partial nephrectomys should have a CT while those with radical nephs can have US.

I've had CT's in the past and may have them again at some time, but I just had my yearly check up with an US and chest xray. The one reason I do like CT's is they are over in 5 minutes where with the US it took 40 minutes. I do worry that the tech might not pick something up, but the cancer risk from radiation exposure is a real concern too.

Oh and by the way, got the test results today and all clear/normal. Thank the Good Lord.

Wishing us all good results.

todd121 · October 2016

sblairc said:
have you read this?
https://www.auanet.org/education/guidelines/renal-cancer-follow-up.cfm

Followups

That information looks pretty good to me. We should all remember these guidelines are MINIMUMS. It's what the doc has to do to have met the MINIMUM STANDARD OF CARE under these conditions. At least that's what I think. Someone please correct me if I'm wrong.

I was concerned about radiation, but my oncologist told me that the risks warrant the extra radiation. It's why I pay him the big bucks. Or, rather, my insurance company pays him the big bucks.

Todd

Another CT Scan?

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