Follow-Up Guidelines

markatger · February 2006

Hi,

I am almost done with treatment. I've been trying to find guidelines for follow-up testing. Could anyone help by pointing me to websites about this or by telling me what your follow-up testing schedule was?

My oncologist mentioned that I would get a colonoscopy at about 6 months after re-section, then every 3 years. And I think he said I would have a CT only once a year.

I could have sworn I've heard of others getting CT scans done at least every 6 months and some every 3 months!

Once a year for CT test seems too little especially during the crucial first two years.

I am likely to have had Stage III rectal cancer .... they originally thought I had liver mets, but now think there is a good (but not 100%) possibilty that I didn't have liver mets.

Thanks for help,
Maria

tkd3g · February 2006

Hi Maria,

Well, I'm sure you are going to be seeing a lot of different answers to your question.

I was stage 3 rectal. June will be 2 years cancer free.

I have a sigmoidoscopy every 3 months and a Colonoscopy every 6 months. So, Sig, sig, Colon, sig, sig, colon. Something like that. After this 2 year mark, I'll have a colonoscopy every year. My colorectal guy said I could wait 2 or 3 years in between, but I don't think so. My cancer was very agressive. Went from nothing to huge in 3 years. I'm gonna keep on top of it.

I see my oncologist every 3 months for a physical and all my bloods.

I will have a PET/CT every year ( at least for the first 2 or 3 years)

So, it sounds a bit different than what your doc said. Personally, I'd want a colonoscopy every year for a while.

BTW, congrats on almost finishing treatments! That is a great place to be!!

Barb

Betsydoglover · February 2006

Hi Maria -

As Barb said, I bet you will get lots of different answers. I was diagnosed Stage IV last May with one liver met. Positive biopsy during colon resection. After two cycles of Xeloda/oxaliplatin/Avastin my PET/CT in late August was negative. NED again in mid-December.

My last chemo cycle started on 11/28. My oncologist wants to do PET/CT's every 2 months (just had one today) for a while and then move to every 3 months if things are looking good. Of course I am Stage IV and that is treated a little differently. I had a colonoscopy last Nov - 4 months after resection. It was clean and my gastroenterologist told me that he didn't want to do it again for 2 years - told me that most GI docs would say 3 years, but he wasn't ready to go that far. Still, his thoughts were that if I am clean now, every 2 years is sufficient to check for polyps and catch them. Personally I am much more worried about recurrence of mets than about the colon. Jumping out of my skin now until I hear from the doctor.

Anyway, I know Stage IV is treated differently from III, but I wanted to let you know what my follow-up plan is right now.

Betsy

alihamilton · February 2006

Hi Maria,

I am sure every answer will be different! My husband was dx July 2003 with Stage 111C rectal cancer. He had a scan in December the same year but only because he had a blockage and they needed to see what was happening. His first follow up CEA was three months after treatment finished and one year after surgery. He also had a CT scan at that time and a colonoscopy. As the colonoscopy was clear, I think they will do another three years from the date of that one, unless, of course, there are any indications of a recurrence. He has CEA levels tested every three months now and has just had his third follow up scan.

There seems to be several opinions as to how often scans should be done, but I would not want them done too often.

All the best,

Ali

well · February 2006

Hello Maria,

Yes, you'll probably get as many different answers as there are replies, that's the nature of these things. I just wanted to mention one point.

"I'm not comfortable with that" is *always* important to say to your doc, if that's the case. They'll ask why, and you'll get to explain your reasons, and they'll either agree with you or explain why you may have had misinformation (in their opinion at least.)

Take the doc off the pedestal and communicate your concerns. Any good doc will appreciate it. I think we all need to be reminded of this at times.

HowardJ · February 2006

Hi Maria,

See: http://www.asco.org/portal/site/ASCO/menuitem.c543a013502b2a89de912310320041a0/?vgnextoid=9f882071d0658010VgnVCM100000ed730ad1RCRD&cpsextcurrchannel=1

I tried finding an easier to follow format (I once saw a table) but can't find it any longer.

Good luck!

Howard

CAMaura · February 2006

Hi Maria -
You have asked such a good question....and again (with me) you will have another answer!
I am just out of treatment last May - so I am still in the questioning phase myself. So far, I have had a post-chemo (clean) chest Xray (my onc wants to limit radiation to that area, so no chest CTs and only a yearly chest Xray), a clean colonoscopy and two CTs to my liver and abdomen (approx six-months apart). I am stable and cancer-free (that the Lord!)...I have four liver-lesions which are super small; two are cysts, and the other two still not categorized - but still too small to biopsy. I have CEA bloodwork about every three months.
I just saw my onc and she said that my Gastro would determine my colonscopy schedule....I hope it is every year for a little while. Because my tumor (in the cecum) was supposed to have been about two years old when found, I am spooked about waiting too long. I am willing to push for a more frequent colonscopy schedule (yearly) - in spite of the fear of perforation; but - to be very honest - I am very scared of a huge doses of radiation...so, personally, I don't like the idea of lots and lots of CTs; I know that they are not cancer itself, but I still have my concerns.
Sooooo, I think that is the San Francisco (UCSF and Stanford) Bay Area school of thought. I will push for whatever I feel most confortable with and let my anxiety rule. If my docs can convince my otherwise, then I will be happy.
This is (almost) funny, but beware of your paranoia after treatment has ended. I was thrilled to have chemo end and was on a mission to get all of the junk out of my body; but, then I thought everything from a pain in my arm to a headache could again be cancer. Finally, I began to mention it and I was reassured that I was pretty normal. I spoke with my onc about it too. The fact that we go from from micro-management - constant blood draws and appts - to virtually nothing allows one out of the security of chemo (if that was/is secure with side effects, etc.)
Anyway, just thought I would mention it. I sincerely hope that my docs and my body are on the right path... and of course, I hope that for you and for everyone! Take care and all the best - Maura
Hey - since you are almost at the end, I hope you do look into cleaning the chemicals out of your liver and then starting a great nutritional regimen to bring back your strength and vitality and to keep you very healthy!!! Again, all the best - M

Moesimo · February 2006

Maria,

I agree every doc is different. I am glad that I have had frequent testing. I was told if the cancer comes back it would be caught early.

0 - 1 year cat scans of chest, abd, and pelvis every 3 mos. with bloodwork and cea --
yearly colonoscopy and pet/cat scan

0 - 2 years cat scans every 4 mos. with bloodwork with yearly colonoscopy and pet/cat scan

2 - 3 years cat scans every 6 mos with bloodwork and yearly colonoscopy and pet cat scan

in June it will be 3 years since my surgery for stage 3 rectal cancer. The fear of the cancer coming back is greater now for me than it was in the beginning. I think I was too sick in the beginning to think about it. I also get concerned that I was only given 5fu and leuk. and I only received 4 out of 12 treatments post op. I was too sick to continue. Now I thinik they give oxy. for stage 3. My onc said if you have an agressive cancer it comes back even with chemo.

That's just my 2 cents worth.

good luck

Maureen

cheer3 · February 2006

Hi,
I was class IV. I have full body PET/CT every 3 months,& blood test (CMP, CBC, CEA CA125). I will have Colonoscopy every 3 years. I was two years in remission August 2005. I ask my onc if I would have a change later, he said I would remain on this schedule the rest of my life. Praise God I am still here to have all the test.
Blessings to you!
Jean

Follow-Up Guidelines

Comments

Discussion Boards