Standard CHECK up protocol for CRC post adjuvant chemo

[greens]

Hello Clubbers

I am about to start 8 round s of Xelox here in Uk which will finish in Aug for crc diagnosed last July.

I was surprised whn my onc told me I would not likely be reciving either CT or PET scans during 6 months cycles therefter as they were "not necessary". I was told that thay were harmful and to a lesser extent uneconomic. When I asked how any new tunors would be identified early I was advised that those symptomes would be established in the normal way. That rang alarm bells with me because when I went to see my doctor (here in UK a GP) prior to diagnosis I was told that "it was unlikey to be cancer because I appeared fit and well and was young" (then aged 44). BUT DOESNT CANCER HIDE ITS SYMPTOMS OFTEN...

What is your undertstanding of protocol and what did you ONC offer you as a check up program?

I am in UK but wondered in the US if "health considerations " played their part in not having CT scans

What would you say, IGNORING economics and cost, was optimal in terms of frequency of folloe up scans (here in UK the free NHS may just not want to pay for it inwhcih case I must consider going private perhaps if cost is the reason)?

Thought and comments welcome


best

Charlie

t3 n2M0
yt2,pn0,pm0

[Slug]

In Canada, my wife had a CT scan about 2 weeks after her last round of chemo, and is scheduled again for one in June.
As I understood it she will be scanned every 6 months for the first couple of years, and if all is clear will be checked yearly after that

[NWgirl]

When my tumor was first removed, I had 27 of 38 nodes affected with cancer; but no spread. Due to the large # of nodes, I was at high risk for a recurrence.

The first year after finishing chemo I had my CEA/blood work checked every 3 months and a CT scan every 3 months.

Year two they bumped my CT scans to every 6 months but still checked my blood/CEA every 3 months.

At the end of the two year mark I had a combination PET/CT which lit up spots in my lungs and lymph nodes - so I went back on chemo. BUT - these spots were really, really small and seem to have grown incredibly slowly. It could have been years before they caused "symptoms" and by that time I'm guessing the cancer would have been pretty advanced.

My oncologist has always watched me like a hawk for any sign of a recurrence. I know my case falls into the high risk category, but from reading here on this board, other stage 3 patients had similar follow up programs. Maybe CT's every 6 months instead of every 3 months that first year, but CT's seem to be the standard of care for follow up here in the U.S. after completing chemo - at least for the first couple of years.

You're right that cancer can go on for years w/o showing any revealing symptoms. It's frustrating and scary.

[dianetavegia]

I was Stage III COLON cancer with 5 of 17 nodes positive for a 'few microscopic cancer cells'. I had a CT prior to surgery (5 days after dx) and another 18 months later. I had another the next year and will have my final CT next week which is 3 years 2 months post dx. I did 12 tx's of FOLFOX, which began about 5 weeks after surgery. I'll continue to have blood work twice a year for 2 more years.

I was 58 at dx and had never been sick in my life.

It was my understanding that chemo should begin within 2 months of curative surgery to remove the cancer for it to be considered effective. If I'm reading correctly, you're getting only one chemo drug and are 7 months post dx. Am I missing something?

[beth568]

Charlie, is your onc saying no scans at all, or just saying that you won't be scanned every 6 months, but at some longer interval?

I had a CT about a month after finishing FOLFOX, and then had a series of long talks with my onc about how often to scan from here on out. Some docs in the US will scan every 3 months (as in Belle's case), but that's usually only when there's a high risk scenario. For stage III rectal cancer, I hear most often that patients are scanned every 6 months for a couple of years - my onc says that he's been hearing more and more docs recommend yearly scans, due both to expense and to the aggregate risk of all that radiation exposure, especially in younger patients. He comes down in favor of 6 month scans for at least the first two years unless the patient is really worried about risks. But either a 6 or 12 month follow up period seems to be acceptable here in the US. I will have CEA checked every 3 months for at least a few years.

If you're not going to be scanned at all, that sounds a bit like an economic decision, rather than a medical one. I'd ask some serious questions about that, and maybe consider going with private treatment if necessary. I'm sorry that you've got to face that possibility.

[Guinevere]

I get scanned every 6 weeks to check for any progress in shrinking the liver tumors.

[Kathryn in MN]

Each oncologist and each patient is unique, but in general the recommendations for follow-up in the US for a stage III CRC patient, after finishing treatments, is labwork every 3 months, with scans every 6 months (CT or PET) for the first two years. It starts to vary a bit more after that, with some moving to once per year at that mark, and others sticking to every 6 months for another year, before going to annual scans with bi-annual blood work.

[Bob_Weiss]

I assume you are a Stage 3 patient and the risk of metastatic recurrence is fairly high in the first two years. Although physical exams and blood testing are valuable, it seems strange that no scans are recommended for you. I believe that patient symptoms usually are absent during the early days of a recurrance when treatment has the best chance of acheiving cure or long-term control. I would definitely ask for a second opinion. As for myself, I now get periodic CT scans with variable time intervals depending on the MD assessment of my current condition.

[lauragb]

I was told by two different oncologists that I would have scans every 12 months and my surgeon said I would have scopes every 12 months, then 3 yrs then 5 years if things stayed clear.
Since I had a colonoscopy 5 years before my cancer diagnosis, I said, "no way" to the possibility of waiting 5 years between scopes.

Back to scans, I'm a little concerned about waiting 12 months since the CEA has not been a marker for me. But since I had a complete response to chemoradiation, this is what has been suggested as follow-up for me so far......

[Ivona]

It was my understanding that chemo should begin within 2 months of curative surgery to remove the cancer for it to be considered effective. If I'm reading correctly, you're getting only one chemo drug and are 7 months post dx. Am I missing something?

That's what I am wondering too!

I had CT scans and MRI when first diagnosed, then a virtual colonscopy about 1.5 yrs ago ....and that's it. My onc felt that the radiation risk was no warranted in my case. I get CEA tests and annual checkups and that's pretty much all I get. I'm sure if I pushed and insisted that I'd get a scan...but honestly I just don't know how I feel about that.

[CheeseHead]

I don't think Charlie is/will be on one drug. Xelox=Xeloda + Oxaliplatin, similar to FOLFOX/5FU+Leucovorin+Oxaliplatin. I think Xelox might be more common in Europe; FOLFOX in the US.

I don't remember him telling us when he had his surgery - if he had any (remember posts about LAR, I think).

As for recommendations about CT scan intervals - assuming you're stage 3, sorry, I wouldn't know... If you're at high risk of recurrence/metastasis I too would have problems seeing how any symptoms might appear quickly enough to deal with the cancer - especially in the case of metastasis...

Regards,
Cheese

[nbrandt]

Charlie,
I was told I was in the most likely to recur group due to cancer in appendix, right colon, and 5 of 20 nodes. I started Folfox 2.5 weeks after surgery and was scanned every 3 months for year one, every 6 months now during year 2 and every 6 months year 3. Colonoscopy end of year one was clear so now every two years. I was on the CEA every 3 months Schedule but now there is some disagreement since my pre surgery CEA was 1.0 and pre Folfox less than 1.0 and subsequent less than 1.0 that CEA was discontinued by one Oncologist and the other thinks the CEA would be an indicator of a new primary. Since my last CEA was .9 and rising I am a little worried about my next scan which is in the most likely time (18 months post surgery) to recur.

Since I was diagnosed after a life insurance physical that rated me 99.9 and the health of someone 15 years younger and the next month colonoscopy found late stage colon cancer, I would not feel very good about not being scanned on a regular basis. You should go for a second opinion for your reassurance.
NBrandt

[Bussman]

Hello Clubbers
What would you say, IGNORING economics and cost, was optimal in terms of frequency of folloe up scans (here in UK the free NHS may just not want to pay for it inwhcih case I must consider going private perhaps if cost is the reason)?

Thought and comments welcome

IMHO, annual CT scans would be the minimum, and a 6 month month interval would be much better in your situation. With IIIb, I was scanned 3 months after surgery (mid-chemo), and 6 months later. I'm now on a 6 months scan interval. My scans were PET/CT's, onc has stated that future scans will most likely be CT only. He prefers PET/CTs (with full diagnostic CT) and so do I, but he has stated repeatedly that the insurance companies (in the US) are really cracking down on the number and type of scans. At first, I really wanted a 3 month scan interval, but then accepted the 6 month interval as reasonable for my situation.

The NCCN Clinical Practice Guidelines for for node-positive disease:

* Physical exams every 3 to 6 months for 2 yr, then every 6 mo. for total of 5 yrs.
* CEA every 3-6 months for 2 yrs, then every 6 mo/ for total of 5 yrs.
* Chest /Ab/ pelvic CT scan annually for 3-5 yrs.

NCCN colon cancer guidelines: http://www.nccn.org/professionals/physi ... /colon.pdf
(requires registration to access, but packed with info on diagnosis , staging, treatment protocols, surveillance, etc.

In your shoes I would work hard to get a decent surveillance plan in place, including scans.

Best of luck,
Bussman