New to Colon Talk

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Jules70
Posts: 2
Joined: Sun Jun 06, 2021 7:58 am

New to Colon Talk

Postby Jules70 » Mon Jun 07, 2021 7:36 pm

Hello all,

Sorry that we have to be here but glad I was able to find a support forum. I had a colonoscopy on 05/26. When I woke up all I remember is the doctor telling me a had a tumor and would need surgery. I ended up having 3 polyps removed that came back benign and two masses in my sigmoid colon. The smaller one came back as "multiple fragments of adenoma with high grade dysplasia (invasive adenocarcinoma cannot be excluded in one fragment)". The second is approx 3cm in size and came back as "multiple fragments of adenoma with focal features consistent with invasive adenocarcinoma". My bloodwork shows I'm currently anemic and my CEA is 18. I had a chest and pelvic CTscan yesterday. They found a few lung nodules and recommended a followup CTscan in 3 months also found a small nodule in my left breast and recommended at mammogram (which was already scheduled for Sept). From what I can make out on the pelvic scan "enlarged mesenteric nodes adjacent to the sigmoid abnormality" and "no distant lymphadenopathy". I have a consult with a surgeon on 07/02 to discuss removing my sigmoid colon. An oncologist has not been mentioned (yet?).

I'm trying to absorb all of this and learn as much as I can. I've shared this with two of my closest friends but haven't shared with my family yet. My mother is 73 with a myriad of health issues and was just in the hospital for a cardiac issue last week. She'll worry (understandable) and I don't want to tell her until I have more information. She lives with my brother a few states away and same. He will be upset. I know they'll mean well but I don't want to be peppered with "how are you feeling" every time I talk to them. Physically I don't feel any different.

Any insight you may have and/or questions I should ask or that you have for me please, ask away.
^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^
50/F
DX: Colon Cancer (CC)
Tumor Location: sigmoid colon
Tumor type: Adenocarcinoma
Tumor size 3cm
Baseline CEA value: 18

User avatar
Green Tea
Posts: 419
Joined: Mon Oct 24, 2016 10:48 am

Re: New to Colon Talk

Postby Green Tea » Tue Jun 08, 2021 2:19 am

Jules70 wrote:...I'm trying to absorb all of this and learn as much as I can...

Here are some additional resources for you to consider and an outline to help structure your thoughts. (It's a steep learning curve, for sure!)

Colonoscopy yesterday - tumor found
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=53644&p=425698#p425698

NCCN Guideline for Colon Cancer Patients (2021, 74 pages)
https://www.nccn.org/patients/guidelines/content/PDF/colon-patient.pdf

Your Pathway - A Guide to Bowel Cancer Treatment (19-page booklet)
https://bowelcancerorguk.s3.amazonaws.com/Publications/YourPathway_BowelCancerUK.pdf

"Younger People with Bowel Cancer - A guide for the under 50s" (66-page booklet)
https://bowelcancerorguk.s3.amazonaws.com/Publications/YoungPersonsGuide_BowelCancerUK.pdf

    Table of Contents
    4 About this booklet
    5 Never Too Young
    6 Know your healthcare team
    Your diagnosis
    9 What is bowel cancer?
    10 Diagnosis
    12 Your feelings
    14 Telling people
    15 You and your partner
    15 Coping on your own
    16 Talking to children
    17 Telling a parent
    19 Getting support
    20 Genetic risk
    20 Lynch syndrome
    22 FAP
    22 MAP
    22 Genetic testing
    24 Fertility
    24 Fertility in women
    26 Fertility in men
    27 Questions to ask after your diagnosis
    Your treatment
    29 Your treatment options
    29 Surgery
    30 Stomas
    31 Staging and grading
    31 Radiotherapy
    32 Chemotherapy
    32 If your cancer has spread
    33 Biological therapies
    33 Clinical trials
    35 Coping with side effects
    36 Complementary therapies
    37 Questions to ask about your treatment options
    After treatment
    39 Worries about the future
    40 Follow-up
    41 Side effects
    42 Tiredness
    42 Hernia
    43 Nerve damage
    44 Bowel function
    45 Bladder function
    46 Sexual function
    48 Body image
    49 Physical activity
    51 Questions to ask at your follow-up appointments
    Daily life
    53 Work and legal rights
    54 Money and insurance
    54 Childcare
    55 Travel
    56 Medical words used in this booklet
    59 Other useful organisations
    63 Further support
======
EDIT - Added later:
Jules70 wrote:... From what I can make out on the pelvic scan "enlarged mesenteric nodes adjacent to the sigmoid abnormality" and "no distant lymphadenopathy". I have a consult with a surgeon on 07/02 to discuss removing my sigmoid colon. An oncologist has not been mentioned (yet?)...

...Any insight you may have and/or questions I should ask or that you have for me please, ask away.

    From what you have said, it seems to me that you have multiple cancerous local lymph nodes (near the sigmoid colon) but nothing totally confirmed yet for remote metastases, though something might crop up if the small specks on the scans grow in size over the next three months. For now, though, it looks to me like you would be staged temporarily as Stage IIIB or Stage IIIC. (You need to get an oncologist to look at all of the data and make a preliminary assessment of this.) Meanwhile, for your July 2 appointment with the surgeon it looks like he/she would probably want to do a left hemicolectomy, or a sigmoidectomy, or a complete mesocolonic excision (CME) focused on the sigmoid colon, with curative intent. This type of surgery should bring your elevated CEA down into the normal range and set you up for a few months of mop-up adjuvant therapy to take care of any micro-metastases that might still be floating around. (This is not a medical judgment, just my personal impression.) You need to ask the surgeon about all of this, and you need to find a good oncologist.

    There's another point that I should mention, since it is not part of the normal standard of care and might not even be mentioned by your surgeon, but it might do some good. There is some evidence that using Celecoxib (Celebrex) before and after surgery may help suppress malignant activity in the peri-operative context. There are some Stage III patients here who have used this approach with good success. Between now and July 2 you could do some research on this so that you are well informed.

    Attention Stage IIIs ! - Celecoxib (Celebrex) and aspirin use during adjuvant chemo...
    https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=51689&p=402218#p402218

    Preventing Surgery-Induced Cancer Metastasis
    https://www.lifeextension.com/magazine/2009/12/preventing-surgery-induced-cancer-metastasis

=====
Also, before July 2 you could check whether your surgeon is board-certified. Here's how:

How to find a Board-Certified surgeon
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52349&p=410280#p410280

User avatar
Jules70
Posts: 2
Joined: Sun Jun 06, 2021 7:58 am

Re: New to Colon Talk

Postby Jules70 » Wed Jun 09, 2021 5:40 pm

Thank you for all the information GreenTea. It's been quite usefull.

My GI doc called me today about the CTscan results. He didn't tell me much more than what I made out from the pathology report but he does want to move up my appts with the surgeon and the mammogram and said he will be making calls to those offices. He did advise that it appears the mass has attached itself to my left ovary so I'm probably going to loose that as well during surgery. I'm 50 and had a hysterectomy back in 2012 so I'm not too upset about the ovary (but not really happy about it either).

So for now I continue to read and learn.....
^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^
50/F
DX: Colon Cancer (CC)
Tumor Location: sigmoid colon
Tumor type: Adenocarcinoma
Tumor size 3cm
Baseline CEA value: 18

DarknessEmbraced
Posts: 3593
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: New to Colon Talk

Postby DarknessEmbraced » Sun Jun 13, 2021 10:04 am

I'm sorry for your diagnosis.*hugs* It's good that your GI is being proactive by moving up your appointments. I hope your mammogram shows something benign and that your appointment with the surgeon goes well.*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)


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