New member: I Have A Tumor- update

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Steve in NH
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Joined: Sun Mar 10, 2019 1:52 pm

New member: I Have A Tumor- update

Postby Steve in NH » Sun Mar 10, 2019 2:09 pm

Hi again- a bit of an update. The biopsies came back benign and my CEA level is within normal. I had an MRI on Friday so now have to wait until April 4th to meet with my doc to review the MRI and determine next step. Happy with the results so far but still anxious for the MRI results.
All my best

Hi. I am new to the forum. I had a colonoscopy last week and they found a large mass partially blocking my bowel. The doctor took biopsies and I am waiting for results. He mentioned in my post anesthesia haze A concern about the size and possibly being cancer. I am scared as hell and wondering what stage it may be.

Any words of experience or support would be greatly appreciated
Last edited by Steve in NH on Sun Mar 24, 2019 2:27 pm, edited 1 time in total.

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New member: I Have A Tumor

Postby betsydoglover » Sun Mar 10, 2019 7:08 pm

Steve -

Scary I know. You need to suffer thru the wait for pathology results, much as that sucks, Not to scare you, but GI docs usually know what they are looking at. When I had the diagnostic colonoscopy, my GI doc essentially told me that the path results were important to get, but that there was only a very minimal chance that they would not indicate cancer.

I started looking for a colorectal surgeon at that time and also an onc (though I did not meet her until in the hospital until post surgery and didn't worry too much about that until I had my surgery) - surgery is not always the first treatment, but it was for me given the size/location of the tumor. If rectal cancer, then there is normally radiation first (and sometimes that makes staging different since you only know the status post-radiation).

If the path shows cancer/possible cancer, they will do CT scans. If distant organs are involved, then it is most likely Stage 4. But hopefully there is no distant organ involvement in your case. In that case, the surgery will differentiate between Stage 2 and Stage 3. Local lymph node involvement normally means Stage 3 - without lymph node involvement, then Stage 2.

I wish you the best, and hopefully this is just a nightmare that will pass.
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

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Re: New member: I Have A Tumor

Postby rp1954 » Mon Mar 11, 2019 5:43 am

Don't know about what blood tests they got when you got your colonoscopy, but we found we wanted more blood information than were taken at diagnosis, before and after surgery. In fact, one of my parents' had better blood data taken in the 1980's than we did in 2010. Better early information (before and after surgery) might have saved us a lot of grief and uncertainty; better data certainly helped us when we got it.

In any case, inadequate initial blood data is a serious problem that I've always encountered. Ordinary doctors and hospitals are usually varying degrees uncooperative on non standard tests that actually have cumulative long term consequences on (y)our options. But people can order their own blood tests online or on the phone.

The more specifics you can measure or document here, (extra) blood tests, pathology, and scans, the more chances you might find more answers, even less known world class options if necessary. Many people use their signature to summarize these.

It is important to not let any potential mets or micromets grow unchecked, some kind of treatment plan ASAP is important. Self-advocacy, reading/expertise, and a careful, action orientation are important factors.
My belief is that if you want to stay above average performance for whatever you have been dealt, you have to combine expertises beyond "standard care". I read these articles early on: Life Extension Foundation's intro to CRC, cancer surgery, Beyond colonscopy, Preventing surgery induced metastasis. Adding some mild drugs and carefully chosen, extra potent supplements totally changed our situation, inexpensively.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now mostly IV C & no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018

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