Recommended monitoring after treatment ends

[VodKanockers]

I just wanted to take a quick survey of what some of the rest of you have been experiencing with respect to monitoring after your treatment has ended. So far my recovery from chemorad, 2 surgeries and more chemo seems to be going pretty well, other than new bowel habits, some neuropathy and the impact to my nether regions due to the radiation treatment. Now the watching and waiting.

My first post-dx CT and colonoscopy were end of January, along with blood draw. Everything checked out fine, nothing of interest on the CT, colonoscopy looked fine and CEA has been ranging from 1 - 1.6. My question is at what frequency are you undergoing each of the different tests?

GE and onc say next colonoscopy is OK to happen in 3 years. Onc will order the next CT in 1 year. I was told on the latest CT that there was a spot on my liver (possibly hemangioma?) that did not appear changed from the CT a year prior. I've been trying to not worry about this, but maybe this is reason to have another CT sooner rather than later?

My onc has scheduled next blood draw to happen 7 months after my previous draw. Is this pretty standard?

I would be happy to have another colonoscopy in 18 months to keep on top of things. I can see having to weigh the negatives of the extra radiation from the CT with the additional frequency of the test, so maybe 1 per year for now is a good approach. To already be out to 7 months between blood draws seems a little too long to me.

Just wondering if these time frames are pretty common or if should I be pushing some of these things to be occurring a little more regularly.

Thanks to everyone in this community, it's been extremely helpful to me to be able to connect with others going through the exact same things. Continued best wishes for everyone forced to be here.

Vod

[tarheelmom]

National Comprehensive Cancer Network (NCCN) publishes guidelines for treatment and surveillance based on the stage of the cancer.

[mypinkheaven]

When I had my first surgery 3 1/2 years ago, the new recommendations (at that time) was only 1 CT scan a year after surgery and none after that - the harm outweighed the good. But, had I had more CT scans (like once a year), the recurrence to my uterus could have been caught earlier. So, I'm pushing for more often CT scans this time around.

Back to 3 1/2 years ago, I had blood tests every 3 months and a colonoscopy every year. The CEA finally caught the recurrence last Nov., so I had a CT scan then - surgery in Dec., chemorad and I'm almost done with mop-up chemo.

Your situation is different than mine, (I want "aggressive" monitoring this time around), but it seems like at least the blood tests could be more often.

Sally : )

[Nik Colon]

Stage 4 here. Just had my 1 yr after surgery colonoscopy (1 small polyp). Said checkup in 3yrs, but haven't talked to my Onc yet about it. I have blood draw and CT every 3 months, except my last which included a PET to double check my lungs.

[Jacques]

...My question is at what frequency are you undergoing each of the different tests?...
Vod

Colon Cancer Survivorship Tracking Form
http://www.asco.org/sites/default/files/fillable_colon_survivorship_plan_v3_102009.doc

[VodKanockers]

Thank you all for the responses and information.

[rp1954]

My onc has scheduled next blood draw to happen 7 months after my previous draw. Is this pretty standard?

Your markers may be elevated by chemo itself, and in decline for several months. Normally, stage III's get their blood work done every 3 months according to NCCN, but NCCN mentions 2 months as a possibility.

My personal comments.
I am a big believer in more frequent and intensive bloodwork, if someone works at it (I'm the caregiver and do it, most need an involved doctor, or try themselves). Some have used various increased bloodwork strategies for their own needs with clearly better results.

Over the years, we've seen a lot of people with inaccurate staging (happened to us), recurs and missed dx, that missed their window of opportunity, that surely would have been treated much sooner with better bloodwork. In skilled hands, you can get a lot more information, have more chances, and even work out better solutions whether preventative or active tx.

Personally, if I couldn't get an onc down to 6 weeks or 1.5 months with extra blood panels for months 3 thru 15 following chemo, I'd change the dr, or add somebody that could do more bloodwork. Oncology may blink for several reasons like various extra costs, stresses on you, liability on them (both chemo damage and missed recurs), and more skill demands on them. Historically, oncs haven't been particularly effective achieving longer OS for recurs following increased surveillance, with (then) standard care. There are nonstandard options that I think could do better with fewer medical problems.

Without the extra bloodwork, I certainly wouldn't be here...

[SurvivorsSpouse]

Radiologists look for very specific markers to cause "suspicion for metastasis:" size, enhancement pattern, shape, change over time.

Most stuff that shows on CT is noise or benign in nature. There are very specific algorithms your Onc will follow if a met is suspected or if it looks benign. The thing you have working for you is that it is the same since last scan and I am sure the Radiologist did not see other suspicious aspects on the image, this one or the last (he pulled the last one to compare, so he had two swipes at seeing suspicious features).

[LaciK]

I've broached this subject with my onc a couple of times recently and I am not sure that he is going to be the right fit for me after my Xelox regimen is over. He keeps bringing up the negative impact of radiation from scans and citing studies which prove that additional scans do not increase longevity. I realize that we need to find a balance between harmful effects of follow up tests with the benefits of catching any recurrences early but I am more comfortable being proactive than reactive!

I am not a hypochondriac! I am currently in my 9th month of treatment and this sucks. I think it is perfectly reasonable to make sure that I am doing everything possible so that I don't have to go through this again!

My blood counts were not alarming prior to my colonoscopy. I did have rectal bleeding (which I attributed to hemorrhoids), so relying on blood work and how I am feeling does not seem like a solid plan to me. It is my understanding that rectal cancer can reoccur in the lungs. I already have a nodule that they are watching. In addition, I have asthma with very intermittent symptoms so it would be nearly impossible to know if symptoms were attributable to asthma or lung cancer.

I want to be proactive and if I have to find another oncologist to do it, then I will.

I would also be interested in what others have to say regarding their follow up plans.

Great topic. Thanks for posting!

[Jacques]

...I would also be interested in what others have to say regarding their follow up plans...

I spent my first two years of follow-up doing the standard recommended scans and bloodwork every three months, but I changed to a do-it-yourself (DIY) approach in my third year.

Now, I have switched to a different set of doctors who are willing to help me set up a more comprehensive follow-up plan. I do more frequent blood tests, I do more comprehensive bio-marker panels, including tests for systemic inflammation, etc., and my focus now is more on boosting my immune system, decreasing any systemic inflammation, and paying close attention to any trends that might develop in the blood tests or scans over time.

I like it better this way. I wasn't too happy with the way monitoring was performed during my first two years. It seemed to me to be very minimal and not what was really needed.