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?

@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.

B8067B72-E149-4E78-B619-21A450E93637

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@travelgirl

Hello everyone I am Travelgirl. I am a Rare & Unusual Cecum Colon Cancer survivor. Cecum cancer accounts for less than 15 to 20% of all colon cancers. So it is pretty rare to get this type of cancer at age 53. I was 53 yrs old getting my first colonoscopy. Don’t wait till your 53 to get your first colonoscopy.

My Cecum cancer showed NO Symptoms Zero.

While traveling somewhere in a third world country I had contacted H-Pylori. The H-Pylori actually saved my life. I was sicker than a dog with Severe Acid reflex. The Acid reflex was so bad, I actually thought I had gotten poisoned. I had a severe burning sensation which started at the back of my throat and burnt all the way down to my stomach. Plus I was having stabbing chest pains. I had my husband take me to the ER. They ran a slew of tests in the ER. Chest and Stomach X-rays, Blood work, Urine test, and an Ultra sound. All the tests came back negative for anything odd. My blood work was perfect. So they determined I had GERD. The ER Dr. said I needed to see a GI specialist ASAP.

Saw a GI Dr 2 days later. Got the 2 for 1 special an Endoscope of my Throat and Stomach and a full Colonoscopy. The Endoscope confirmed the H-Pylori and the Colonoscopy found an Ulcer in my Cecum, with a flat polyp underneath. Plus 3 more noncancerous polyps. The biopsy of the Ulcer came back Pre-Cancerous.

3 weeks later I saw another GI DR, who was going to try and remove the Ulcer with a EMR procedure. Well he couldn’t remove the flat polyp, it wouldn’t lift. My colon was twisted, and I had some Diverticulosis going on, plus he found 3 more polyps. A second biopsy of the cecum ulcer, came back pre-cancerous a second time. This GI Dr. referred me to a surgeon to have a resection.

I decided to contact a 3rd GI DR at the Mayo clinic, to see if the polyp could be removed without surgery. 3 weeks later I get my 3rd Colonoscopy. Well the polyp could not be removed by EMR. He also found 3 more noncancerous polyps. A 3rd Biopsy of the Ulcer came back cancerous. I was referred to a Surgeon.

My Colon-Rectal surgeon ordered a CT scan of my chest, stomach, and Pelvis. The Ct scan found swollen lymph nodes near my Aorta. Which freaked out the Colon Rectal surgeon. He then ordered a Pet Scan and a CT- Guided Biopsy of the Aortic Lymph node. They needed to rule out Metastasis cancer. Well back to the rare and unusual, I got the 2 for 1 Cancer Diagnosis. The swollen Lymph nodes are the result of a Non-Hodgkin’s Lymphatic Cancer Follicular Lymphoma.

My colon surgery was done 2 weeks later. The Dr. removed 1 foot of colon and 20 lymph nodes. It is confirmed I have a stage 1 Adenocarcinoma Cecum Cancer. The surgery was a success. The lymph nodes were clear of colon cancer. However, a few tested for Lymphatic cancer. I was in the hospital for 6 days. It took a little time getting adjusted to the new plumbing in my body. Now it is almost 13 months since my surgery. I feel great, and my body doesn’t miss that section of colon.

The Dr. put me on a Watch and Wait Treatment approach. Every 3 months for blood work Ct scans. Which is now been moved too, every 6 months for blood, and Ct Scans. I need a colonoscopy every 12 months. It has been determined I have turned into a Polyp farmer. So yearly they need to check for polyps.

Colon cancer is far more common than people think and extremely curable. DO NOT delay getting your colonoscopy. You may not be as lucky as me.

( My Lymph nodes have shrunk in size with every CT scan. Which is a excellent sign. I may not need treatments for many years if ever. 1 out of every 3 people with this type of cancer end up getting treatments. I plan on being one of the two who never gets a treatment 🙂 )

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Hi Travelgirl. I had a similar outcome when my doctor found cancerous polys after a routine colonoscopy the first of October.. I had 12” of colon removed, (sigmoid) and twenty three lymph nodes. All came back clear. I joined the chat group at 4-5 weeks because my dr (surgeon) assured me before I left the hospital (7 day stay) that in 4-6 weeks I would be back to pre-surgery condition. I was very grateful to Colleen and Sundance6 for answering my questions and reassuring me that it was early and nothing was unusual in my healing It’s been 2* months and I was still experiencing urgency and frequent bowel movements after eating. (6-7 nightly) I found that restricting my food intake during the day was my only way to get out and keep appointments. Last week, I got a jury duty notice, which I thought “no way” I could meet and emailed my doctor regarding a letter and a request for an image of my post surgery colon. (Thought maybe the holding area of my sigmoid had been removed??) I had previously contacted (emailed) my doctor regarding this and was told to drink fiber (in November). This now is January and I guess my doctor decided that something was wrong and I had a c-diff test. It came back positive and I am now on antibiotics for ten days. I’m hoping that this will take care of the problem and I can get on w/it. So, first thank you for your support, secondly, my heart goes out to everyone who has such hard struggles, and thirdly, it shows me how important it is to have a support system to educate and guide a person who is struggling. I could have easily gone undiagnosed thinking that this is what I had to live with. Including the pain I had started to experience. Being able to contact this group and be heard helped me big time. Take care. Wishing you all the best 2020 that you can have. Sincerely Virgo52

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@colleenyoung

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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Thank you very much Colleen, I’m not holding up well at all, being a full time caregiver to my husband… slipping into more dementia (Lewy and Alz + Parkinson symptoms…) I’ve had no help.. if I’m facing a section of colon removal, and for sure the operation for polyp in my appendix… I have no I’m home help, so I’m working on that. He’s been in 2 rehabs and 3 hospitals for low-flow strokes due to hypotension, autonomic BP, and now Postprandial symptoms, his systolic drops 40-60 points after eating, tiny meals, or just a pc of toast. All clinical trials seem to cut-off at 85.. he will soon be 90!! The Drs. Which are over 10 neurologists don’t seem to be able to come up w/ any help at all. So, I’ve really had to be full time nurse… especially with his strange BP symptoms. Waiting to hear the new results on colonoscopy due to the catscan in Aug. 2019… showing “concern for malignancy” I worry about the lack of expediency… which now the ileocecal valve and cecum are added to the ‘concern… everyone thinks I’m 60 instead of 82, while flattering, I’m afraid my insides are much older looking and acting!!! Thank you so much. Mayo in Jackdonville last said, if malignancy is found, I should contact them again. (Jacksonville🙏) for their help… I’m losing confidence and faith in my current physicians.

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@bonnieb81

Thank you very much Colleen, I’m not holding up well at all, being a full time caregiver to my husband… slipping into more dementia (Lewy and Alz + Parkinson symptoms…) I’ve had no help.. if I’m facing a section of colon removal, and for sure the operation for polyp in my appendix… I have no I’m home help, so I’m working on that. He’s been in 2 rehabs and 3 hospitals for low-flow strokes due to hypotension, autonomic BP, and now Postprandial symptoms, his systolic drops 40-60 points after eating, tiny meals, or just a pc of toast. All clinical trials seem to cut-off at 85.. he will soon be 90!! The Drs. Which are over 10 neurologists don’t seem to be able to come up w/ any help at all. So, I’ve really had to be full time nurse… especially with his strange BP symptoms. Waiting to hear the new results on colonoscopy due to the catscan in Aug. 2019… showing “concern for malignancy” I worry about the lack of expediency… which now the ileocecal valve and cecum are added to the ‘concern… everyone thinks I’m 60 instead of 82, while flattering, I’m afraid my insides are much older looking and acting!!! Thank you so much. Mayo in Jackdonville last said, if malignancy is found, I should contact them again. (Jacksonville🙏) for their help… I’m losing confidence and faith in my current physicians.

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Beautiful picture, @bonnieb81 I hope you'll add it to your profile. Here's how to update your profile: https://connect.mayoclinic.org/page/about-connect/newsfeed-post/how-to-update-your-profile/

I'm so sorry to hear that you have multiple health issues to manage and the increasing caregiver duties for your husband. You're not alone. You might wish to also become a member of the Caregivers: Dementia group to get support from others. Click here: https://connect.mayoclinic.org/group/caregivers-dementia/

I strongly encourage you to contact Mayo Clinic in Jacksonville again. Here's the number: http://mayocl.in/1mtmR63
You can self-refer or ask your doctor for a referral.

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@colleenyoung

Beautiful picture, @bonnieb81 I hope you'll add it to your profile. Here's how to update your profile: https://connect.mayoclinic.org/page/about-connect/newsfeed-post/how-to-update-your-profile/

I'm so sorry to hear that you have multiple health issues to manage and the increasing caregiver duties for your husband. You're not alone. You might wish to also become a member of the Caregivers: Dementia group to get support from others. Click here: https://connect.mayoclinic.org/group/caregivers-dementia/

I strongly encourage you to contact Mayo Clinic in Jacksonville again. Here's the number: http://mayocl.in/1mtmR63
You can self-refer or ask your doctor for a referral.

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Thank you for your help, I’ll try that route, I so appreciate. Bonnie Fitzgerald-Bernstein

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