Surveillance

[Swirdfish]

Hi All,

Had my onc meetings yesterday, and now that I've finished chemo, he wants to put me on 6 monthly checks. I mentioned will these be CT scans, however he said that all they want to do is to ultrasounds on my liver only, and CT scans once a year. I sort of questioned this, and he said too many CT scans are dangerous.

What is the normal follow-up for rectal cancer?
I thought rectal cancer usually goes to the lungs and not the liver, however anything is possible.
Are ultrasounds enough?
Is 6 monthly checks ok, or should I do 3 monthly.

What is everyone else routine with similar condition as mine?

I said I want my lungs checked too, and he planned in for a x-ray at the 6 months with an ultrasound of the liver.

Also they will only monitor me for 5 years, as they say any longer is not required. I thought rectal can reoccur later then colon.

[NZJay]

I have had:

3 monthly CEA tests
6 monthly physical exam with surgeon
12 monthly CT scan

Currently awaiting my 3-year CT scan, which was completed over 6 weeks ago ugh.

[Swirdfish]

6 weeks ago wow. Wonder what the delay is. Usually I have mine in couple of days. That would suck.

[CRguy]

Had my onc meetings yesterday, and now that I've finished chemo, he wants to put me on 6 monthly checks. I mentioned will these be CT scans, however he said that all they want to do is to ultrasounds on my liver only, and CT scans once a year. I sort of questioned this, and he said too many CT scans are dangerous.

My Onc initially said the same thing, so instead I went with CT in the spring and abdominal U/sound and chest xrays in the fall = imaging every 6 months with exam and bloods as well.

THEN a simple xray and a GREAT radiologist picked up my lung met at 2 years and I went to every 3 months with exams and bloods, 3 monthly CTscans and a new Onc ! Initially even he said " too many CTs yada yada yada ... "

So I told him point blank " I would rather die from radiation and too many scans....... than from a cancer we didn't know about because nobody was doing scans ! "
To his credit, he got my point, and I don't know if I have given you my standard disclaimer about this ... BUTT :
" You will MISS more for not looking ... than NOT KNOWING ! "
A quote from my Medicine Prof who was awarded the Order of Canada ..... now all my docs will at least LOOK, or they are kicked to the curb.

What is the normal follow-up for rectal cancer? it will vary from Onc to Onc and site to site

I thought rectal cancer usually goes to the lungs and not the liver, however anything is possible.
the ONLY rule with cancer is : there are NO rules BUTT yes rectal to lungs and colon to liver is more likely BUTT not absolute

Are ultrasounds enough? NO ! keep LOOKING at the chest as well !!!!!

Is 6 monthly checks ok, or should I do 3 monthly.
initially 6 months for imaging could be OK with chest xray + abdominal U/sound then full chest-abdomen-pelvis (CAP) CT 6 months later
so you are getting "looked at" every 6 months, and still do exam / bloods every 3 months

What is everyone else routine with similar condition as mine?
I said I want my lungs checked too, and he planned in for a x-ray at the 6 months with an ultrasound of the liver.
Also they will only monitor me for 5 years, as they say any longer is not required. I thought rectal can reoccur later then colon.
NO Rules for cancer = KEEP LOOKING somehow some way !

you are asking ALL the right questions !!!!!

Cheers and Harmony
CRguy

[Swirdfish]

Had my onc meetings yesterday, and now that I've finished chemo, he wants to put me on 6 monthly checks. I mentioned will these be CT scans, however he said that all they want to do is to ultrasounds on my liver only, and CT scans once a year. I sort of questioned this, and he said too many CT scans are dangerous.

My Onc initially said the same thing, so instead I went with CT in the spring and abdominal U/sound and chest xrays in the fall = imaging every 6 months with exam and bloods as well.

THEN a simple xray and a GREAT radiologist picked up my lung met at 2 years and I went to every 3 months with exams and bloods, 3 monthly CTscans and a new Onc ! Initially even he said " too many CTs yada yada yada ... "

So I told him point blank " I would rather die from radiation and too many scans....... than from a cancer we didn't know about because nobody was doing scans ! "
To his credit, he got my point, and I don't know if I have given you my standard disclaimer about this ... BUTT :
" You will MISS more for not looking ... than NOT KNOWING ! "
A quote from my Medicine Prof who was awarded the Order of Canada ..... now all my docs will at least LOOK, or they are kicked to the curb.

What is the normal follow-up for rectal cancer? it will vary from Onc to Onc and site to site

I thought rectal cancer usually goes to the lungs and not the liver, however anything is possible.
the ONLY rule with cancer is : there are NO rules BUTT yes rectal to lungs and colon to liver is more likely BUTT not absolute

Are ultrasounds enough? NO ! keep LOOKING at the chest as well !!!!!

Is 6 monthly checks ok, or should I do 3 monthly.
initially 6 months for imaging could be OK with chest xray + abdominal U/sound then full chest-abdomen-pelvis (CAP) CT 6 months later
so you are getting "looked at" every 6 months, and still do exam / bloods every 3 months

What is everyone else routine with similar condition as mine?
I said I want my lungs checked too, and he planned in for a x-ray at the 6 months with an ultrasound of the liver.
Also they will only monitor me for 5 years, as they say any longer is not required. I thought rectal can reoccur later then colon.
NO Rules for cancer = KEEP LOOKING somehow some way !

you are asking ALL the right questions !!!!!

Cheers and Harmony
CRguy

Thanks CRguy for your reply. I was worried as he only wanted to check the liver and not lungs.

I think chest x-ray and ultrasound on the liver 6 monthly would be okay, with full CT scan yearly.

My CEA wasn't a real marker for me, as it was very low even when I had the tumour and hasn't moved. So there was no mention of getting bloods done 3 monthly.

[JudeD59]

Once I couldn't do Folfox anymore, I had appointments with my oncologist every three months where he would do blood tests (including CEA) and give me a physical exam. As for CT scans--had one at diagnosis in April 2015, one after my surgery September 2015, one in April of 2016, another last September 2016, and I'm scheduled for one this September. At my last appointment in February, my oncologist said he's ready to move my appointments to every four months instead of every three. The scan in September 2016 was a PET/CT scan. My onc said he's keeping a closer eye on me because my CEA numbers were so high before surgery. The only ultrasound I've had was the endoscopy for staging right after diagnosis. I also had a colonoscopy last August and because the results were clear, I don't have to have another one for 3 years. I hope this answers some of your questions.

Good luck!
Judy

[CRguy]

My CEA wasn't a real marker for me, as it was very low even when I had the tumour and hasn't moved. So there was no mention of getting bloods done 3 monthly.

Consider asking about CA 19-9 ( which I have done along with CEA 'cos Oncs love their CEA NOT a marker for me either )
and check out rp1954 posts about other possible alternates such as LDH, which I also get done.

Keep pushing them and keep asking questions until you get a good answer !!

Cheers
CR