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Follow-up testing

7243
Posts: 213
Joined: Feb 2011

I'm curious about what kind of follow-up studies your oncologists and colo-rectal surgeons are doing for you after treatment is done? Do get a DRE, EUS, PET CT, CT only, PET only? And how often?

Also, my oncologist requests a PET CT every three months for the first year ... I fear my insurance won't cover this. What are you seeing?

I know what the NCCN guidelines for Anal Cancer say, I'm wondering what you're seeing personally.

Thanks ...

z810840b's picture
z810840b
Posts: 212
Joined: Jan 2010

I had a pet scan 3 months after i finished treatment. The area where the tumor was, lit up which was thought to be from the radiation.In order to be sure i had a punch biopsy at the site. Thank goodness it was only scar tissue and all was negative.After that i had a sigmoidoscopy every 3 months for 2 years.Now i have graduated to every 6 months.Once a year i have a colonoscopy.No pet scans or cat scans.I asked my doctor and he said not necessary...because if it comes back..it comes back in the anus area.Hugs..alyse

mp327's picture
mp327
Posts: 2856
Joined: Jan 2010

I got PET scans every 3 months for the first 2 years after treatment ended, then every 6 months. However, due to my insurance no longer approving PET scans for me, I am getting CT scans now and am scheduled for one next week. After this one, I don't know if my med onc will continue to have me get scans every 6 months or push them back to once a year. I am seen by my colorectal surgeon every 3 months for DRE and anoscope. I had colonoscopies the first 2 years after treatment, but not this year. I hope this helps.

7243
Posts: 213
Joined: Feb 2011

Thank you Martha ... did your insurance pay for every three month PET for two years? Most do not pay for PET for "surveillance" as I'm learning. Thank you ... this is the program proposed by my care provider, however she wants a PET
CT every three months.

mp327's picture
mp327
Posts: 2856
Joined: Jan 2010

Yes, I've been very lucky, as my ins. paid for every single PET scan and I think I've had a total of 8 or 9. However, I am due for a scan next week and ins. said no to the PET, so I'm having a CT instead. I'm sure that will be the type of scan I will have in the forseeable future. I'm hoping after this one that my med onc puts me on a once a year scan schedule--we'll see!

RoseC's picture
RoseC
Posts: 502
Joined: Jun 2011

As near as I can remember, here's what I had for follow-up. I was stage 2, no lymph node involvement, and am currently almost 3 years out (Oct 2011=3 years out).

Monthly blood tests with oncology for the first 6 months after treatment, then every 3 months for about 1 1/2 years.
Colo-rectal internal exam after 3 months, biopsies at 6 months out.
I don't remember having any Petscans except for the one I had before starting treatment.

Currently: Internal exam with colo-rectal surgeon every 6 months; blood tests with oncology every 6 months; yearly Catscan.

Edit: Oh, and I just had a colonoscopy. First one since I was diagnosed...I don't what the frequency will be for this...

Gulamin
Posts: 132
Joined: Dec 2010

I am now 6 months post treatment. Had an anoscopy twice (after 3 months and after 6 months) and a Pet Scan after 3 months. Have another PET scheduled 6 months from now and another anoscopy 3 months from now. They dont' want to do another colonoscopy or sig.... should I push for it.

It's strange.... though the treatment for AC seems to be a national standard... our follow up checks seem to be all over the place.

lizdeli's picture
lizdeli
Posts: 521
Joined: Jul 2009

I was T2N2MO. For the first year I had a pelvic/abdomen CT scan, lung CT, lung xray, proctoscopy, and blood work every 3 months. Second year, CT scans every six months and proctosoopy every six months but blood work and physical exam every three nonths. I go back in 3 weeks for my scans, etc. and it will be two years post treatment. So I don't know if anything will change as far as tests. In a way I hope I get CT scans every six months for another year, it would just make me feel safer. But we'll see what they say. Most of all I want to hear NED.

Martha, wishing you great news!!!!
Liz

mp327's picture
mp327
Posts: 2856
Joined: Jan 2010

I am trying not to sweat it too much! After this scan, I don't know if my med onc will cut me back to once a year scans or what. I'll let everyone know. Thanks for the good wishes!

melbas2
Posts: 108
Joined: Aug 2010

I have been out of tx since Sept 2010. I have never heard of a PET scan, or NED, before coming to this site. I may be stupid, but will someone explain those to me? They say I'm cancer free, now I just deal with the a-plastic anemia, but they can't get my blood regulated. I went into the hospital last week (again) because the bloating is killing me. I'm down to 91.8 lbs again, but if I eat or drink anything the pain in my belly is horrendous, They drained 2 liters of fluid from my stomach and it's all back again. We live in Lincoln, NE and I'm seriously thinking about going to MDA in Texas. All I get from my docs here is that there's nothing they can see in my rectum to be causing all this pain, but that doesn't make it go away. I get blood and or platet transfusions at least twice a month, but that doesn't seem to be helping either. My counts go down too quickly. My skin is breaking open, I can't seem to sleep even with pills and I can't go to the bathroom without crying. Does this sound like healing to anyone? I'm trying to stay positive, but everytime I see blood on the toilet paper, everytime I get a new spot of blood on my arms...I'm scared shitless. My husband thinks he's losing me, and I no longer know what to tell him. Melodie

mp327's picture
mp327
Posts: 2856
Joined: Jan 2010

I don't want to scare you, but if you are having to have fluid drained from your abdomen and the amount was 2 liters, then why aren't your docs trying to determine what is causing this? Especially since it keeps accumulating over and over? There are many causes for this condition, which is called ascites, some of which can be very serious. It can be an indication of certain cancers, liver disease, congestive heart failure, and other diseases/conditions. Please, please get another opinion! If you can get into MDA, that would be great. It just doesn't sound to me like your docs are putting any effort into finding the cause. I think it's time you bid farewell to the doctors who have just strung you along all this time and seek an opinion from someone more credible. Just my opinion. As always, I wish you the best.

sephie's picture
sephie
Posts: 521
Joined: Apr 2009

go to MDA. you can call 1-800-392-1611 and talk to someone about getting your self in. you do not have to have a referral from a doctor. of course, they will want your records,tests, xrays, etc. if you can get them . try this and see how it goes. there are many places close by to stay . sephie

melbas2
Posts: 108
Joined: Aug 2010

I know I need to get another opinion. I've been seeing these docs for over a year, and still giong in circles. Like I said, I just had the fluid drained a week ago, and I'm probably gonna have to do it agan. I did blow off my onc this week...it was only lab, no visit with the doc, so I figured what was the point. Except that I'm now at 91.6, but look and feel like I'm 9 months preggers. They say my liver and kidneys show no cancer or stress, I do have gall stones. Is that what's causing this? And if it is, and they are aware of my gall bladder situation, why aren't they doing something about it? I know it'll mean surgery again, but wouldn't that be better than an ER visit every 4th or 5th night? Help with thoughts. Melodie

mp327's picture
mp327
Posts: 2856
Joined: Jan 2010

Melodie, you need to definitely get in with another doc for a 2nd. opinion. Have you thought any more about going to MDA?

Worden4's picture
Worden4
Posts: 24
Joined: Jun 2009

I have had Ct scans, and contrasting Ct scans, along with sigmoidoscomy and colonoscopies. They did these tests every three months for the first year, and six months the second. I am now on a yearly schedule. On my last colonoscopy the doctor that did it was not my normal doctor and he told me I didn't need to come back for 5 years. I recently discussed this with my doctor and she said no I need it way more frequently, like yearly. So I think I will be having another one soon.

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