Living with colorectal cancer - Meet others & come say hi

Welcome to the Colorectal Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with colorectal cancer or caring for someone with colorectal cancer. Let's learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.

I'm Colleen, and I'm the moderator of this group, and Community Director of Connect. Chances are you'll to be greeted by fellow members and volunteer patient Mentors, when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let's chat. Why not start by introducing yourself?

Interested in more discussions like this? Go to the Colorectal Cancer Support Group.

@kanaazpereira

Hi @shiwalika,
I’m truly sorry to hear about your diagnosis but first, I want you to know that you are not alone. Although I can only imagine the anxieties and struggles on such a tough journey, I’m very glad that you reached out to the Connect community – Welcome!

I’m tagging @bush in this discussion, https://connect.mayoclinic.org/discussion/cea-levels/ who has written about their mother's colon cancer which led to peritoneal metastasis.
I’d also like to invite @linda4765 @travelgirl @juliedl @tressa and @zeiengirl to join us here; you can view their posts in this conversation about HIPEC: https://connect.mayoclinic.org/discussion/hipec/

You might find this Mayo Clinic research/article helpful; it has contact information and you can call with questions you might have:
https://www.mayoclinic.org/medical-professionals/cancer/news/cytoreductive-surgery-and-hipec-offers-effective-treatment-for-selected-patients-with-peritoneal-carcinomatosis/mac-20429726”
According to Dr. Wasif, Department of General Surgery at Mayo Clinic's campus in Arizona, "With HIPEC, it is possible to completely cure 25 to 30 percent of patients with these types of cancer. That’s a vast improvement on systemic chemotherapy, which is essentially palliative at this point.”

Here’s another recent study that concludes, "CRS plus HIPEC combined with systemic modern chemotherapy is feasible for the management for PM of CR origin most widely accepted by experts, as accumulative evidence suggests that it improves recurrences as well as overall and peritoneal disease-free survival.” https://www.wjgnet.com/1007-9327/full/v25/i27/3484.htm

@shiwalika, may I ask if you would share more details? What type of surgery did you undergo? When were you diagnosed with colon cancer? I look forward to hearing more from you.

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Thanks for your reply. I was diagnosed on March 2019. I undewent chemotherapy with golfox and bevazucimab followed by cytoreduction surgery. My surgeon didn't do hipec as he said in colon cancer with pci of 21 hipec is not recommended. Now I am on adjuvant chemotherapy. I want to know how many cycles are recommended postoperative by Mayo Clinic and how u follow up patients afterwards

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@shiwlika Welcome to connect. I am colon cancer survivor. It is very scary at first when you are diagnosed. However, we are lucky to be born at a time where they have made tremendous progress with treating colon cancers.
My colon cancer surgery was done at Mayo. They check my CEA levels every six months. I believe they do that for 5 yrs post op.
I had a colonoscopy at 6 months post op. Then at 1 year post op. Now I am on a schedule of every 3 years for a colonoscopy.
Hope that helps? I did not have adjuvant chemotherapy so I cannot help answer that. .
I wish you the best
Jackie

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@travelgirl

@shiwlika Welcome to connect. I am colon cancer survivor. It is very scary at first when you are diagnosed. However, we are lucky to be born at a time where they have made tremendous progress with treating colon cancers.
My colon cancer surgery was done at Mayo. They check my CEA levels every six months. I believe they do that for 5 yrs post op.
I had a colonoscopy at 6 months post op. Then at 1 year post op. Now I am on a schedule of every 3 years for a colonoscopy.
Hope that helps? I did not have adjuvant chemotherapy so I cannot help answer that. .
I wish you the best
Jackie

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Thanks jackie for reply. What was your stage when you were diagnosed? Do they do any scans for follow up

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Anybody here using fermented wheat germ exyract

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Hello. My 40 year old son was recently diagnosed with T3 sigmoid colorectal cancer. The surgeon said he recommended removing it right away followed by chemo. My son and his wife have read about research into neoadjuvant chemo for 6 weeks before surgery as a way of minimizing recurrence. Any one have any info about that or had a doctor suggest it?
Thank you all.
Wibly

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@wibly

Hello. My 40 year old son was recently diagnosed with T3 sigmoid colorectal cancer. The surgeon said he recommended removing it right away followed by chemo. My son and his wife have read about research into neoadjuvant chemo for 6 weeks before surgery as a way of minimizing recurrence. Any one have any info about that or had a doctor suggest it?
Thank you all.
Wibly

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Hi @wibly, Do you have a link to the research about neoadjuvant chemo helping to minimize recurrence? I'd like to read that. Neoadjuvant therapy can help reduce the tumor and make it easier to get clear surgical margins.

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@wibly

Hello. My 40 year old son was recently diagnosed with T3 sigmoid colorectal cancer. The surgeon said he recommended removing it right away followed by chemo. My son and his wife have read about research into neoadjuvant chemo for 6 weeks before surgery as a way of minimizing recurrence. Any one have any info about that or had a doctor suggest it?
Thank you all.
Wibly

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Hi i also have sigmoid colon cancer with peritoneal spread. I had chemo with folfox plus target followed by surgery and now am on postop chemo. I think this is what universally followed regimen

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I think I’m a member of this group Colorectal Cancer, though not sure. I have unusual symptoms that are ‘concerning for malignancy, in my colon. My 2nd colonoscopy in a year. With precancerous polyp on my appendix plus other negative catscan sign, waiting now for lab report from 11/24/19 colonoscopy.

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@bonnieb81

I think I’m a member of this group Colorectal Cancer, though not sure. I have unusual symptoms that are ‘concerning for malignancy, in my colon. My 2nd colonoscopy in a year. With precancerous polyp on my appendix plus other negative catscan sign, waiting now for lab report from 11/24/19 colonoscopy.

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Hi @bonnieb81, yes, you are a member of this group. I was re-reading some of your background in this discussion you started:
- High Risk for Colon Cancer due to Pre-cancerous adenoma, age, or both https://connect.mayoclinic.org/discussion/high-risk-for-colon-cancer-due-to-pre-cancerous-adenoma-age-or-both/

You've been dealing with this suspicion and the unknown for almost a year now. That must be worrisome. Waiting is tough! How are you holding up?

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@soul

I am soul and I am a care giver to my Mom who was diagnosed with colorectal cancer and went for a critical surgery a year ago. She is now recovering slowly. She was 11 nights at the hospital. The first surgery took almost 7 hours and the second surgery - reconnect took her 2 -3 hours. We had to go through under tremendous stress and it was difficult. My sister is one of the care giver closer to her. We have been so grateful for the completion of her surgery. My Mom has changed her eating habits and her diet since then. My Mom is recovering slowly. She just had a follow up PET scan 2 weeks ago and the outcome had been very promising that there is no cancer cell. It was a big relief to all of us. My Mom is very fortunate. She would have died if she did not go for the operation and remove it. We keep positive along with the support of family friends and indeed a good doctors and advanced equipments. For those who diagnosed with colorectal cancer, we would suggest to find a good doctor and hospital like Mayo Clinic. Keep strong and positive physically and mentally. Patience is important as well. Wishing the best to all both patients and care giver. Praying for everyone. Soul

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I thought I was a member.. but maybe not. I’ve been operated on colon-rectally several times... having precancerous polyps.. so 11/2018 my surgeon showed by lab results.. a precancerous polyp in my appendix.. plus one other polyp.. neither one removed during colonoscopy due to the ‘kind’ and location..thru the yr 2019 I’ve had abdominable pain and elimination issues.. incontinance too.. finally I spoke to PA.. and she said Dr. Said to tell me polyps were removed.. by lab report I read.. they were not’.. so still ill at ease, I made appt w/surgeon, he said he can snip that polyp and appendix right out! “ but.. let’s get catscan .. okay I did.. when no word as to results of catscan I got the report myself, it stated “ thickening in illeocecal valve and cecum... concerning a malignancy... so once again contacted surgeon (who did all my colonoscopies and surgeries for colon(hemmoroidectomies etc) he said I should have another colonoscopy, so Dec. 24,2019 I did. He removed a polyp and I now wait to find out what biopsy says... but he did say I would have to have appendix out (with precancerous small polyp inside appendix...) I’m waiting! 82 this month to husband 90 next mo. I’m his caregiver for diagnosed Lewy body dementia, plus other major health concerns. I’m just stressed as to this waiting stressful time... and pain.. major spinal pain too, neurosurgeon says I need ‘lamenectomy’ I’ve tried Mayo 3X for help in Jacksonville Fla. they are near my 2 daughters who could help me recover and for my husband, but I cannot seem to get their help. My husbands issues are also inconclusive as to his dementia... and major autonomy blood pressure issues. NOH... neurogenic, Orthostatic Hypotension., which makes his falling more prevalent.

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