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?

Hello Everyone,

I thought you might be interested in viewing this video by Mayo Clinic gastroenterologist and medical oncologist, Dr. Frank Sinicrope, M.D., about Lynch syndrome:
– Understanding Lynch Syndrome https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/

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@travelgirl

@brettb83 @sockwelljames @shilo @michelle74 @dgaravaglia @merpreb
Having been diagnosed with 2 cancers myself within 2 weeks time span. I completely understand the toll it takes on us mentally.
It takes some time to get through the initial SHOCK . I know I went into shock. I couldn't believe what I was being told. Especially since I had zero symptoms. It took a while o go through the Shock stage.
Then I went through the How could this happen stage? I went searching for answers. Thinking about everything I did in life, and everything I put in my mouth. Trying to figure out, what the hell, could I have done to cause me to get 2 cancers. I became obsessed searching for answers. I think I wore myself out doing this? I still have no answers just possible causes.
Then I went to the acceptance stage.Now what would be my best course, to keep these cancers under my control? Do I change my eating habits? Do I work out more? What can I change in my lifestyle to keep me non systematic?
This is the hardest stage for me. Cause I think about how I was before cancer ? I only had 2 bad habits Coffee, and an on and off smoker. I was always watching what I ate before cancer. I worked out 4 days a week. Lifted weights. I was not a junk food eater.
Going through these stages drains you mentally.
It has been slow going getting back to normal, Talking to others like me on Mayo Connect has helped me a lot to calm down. I think also time has helped me to realize I'm going to be Ok.
I try and do things that make me happy. .
Worrying and Stressing over the fact that I have Cancer is draining..
You need get involved go out be around people. Try and take walks and enjoy the little things in life.
I know I find myself doing things I never dreamed of.
Mayo Clinic describes what it takes to cure people.
It is called FAITH, AND HOPE WHICH EQUALS HEALING..
Without Faith there is No Hope and without Hope there are NO Cures to heal.
We all need to Keep Faith which give us Hope, and Hope will Heal us .
This will give us the ability to be Cancer Warriors, of which we already are.. 🙂
God Bless you All…
Jackie

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@travelgirl
Hi Jackie. Thank you for your encouraging and uplifting post and, for me personally, grounding and calming post. I’ve been freaking out recently, as well as going through the stages of bereavement in record time! Having completed treatment for HER2 Positive breast treatment 3 months ago, on 14 February I received a colon cancer diagnosis. After glancing around my consultant’s office in search of a punching bag (unfortunately none!), I asked “what were the odds of that happening?” Apparently, it’s sheer coincidence and bad luck; totally unrelated to my breast cancer. Thankfully, it hasn’t spread to my liver or lungs. However, I won’t know until after my resection surgery on 14 March whether or not the cancer has spread to the lymph nodes and if I’ll have to undergo chemo. Having faith, and fingers crossed, that it hasn’t and I won’t 😊. I beat the breast cancer and I can beat the colon cancer 🤗!

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@deirdrebrownw
I am so happy my post was uplifting and encouraging for you. When I write on here I do hope that others find my story inspiring and it helps them.
I absolutely understand the feelings you been having. I been there and done that. I never hyperventilated in my life expect for the day I was told I had cancer. So get what you are going through. It takes time to realize you are not dying and its a bad disease that we have to fight and try to cure.

Has your Dr mentioned having you tested for Lynch syndrome? You may want to have them test you for that? I was tested I do not have it. Lynch Syndrome can cause us to get more than one cancer. If you are positive Doctors will watch you like a hawk..

Where is your colon cancer located? Have you had a Pet Scan?

When I had my Pet scan the only area that lit up, was the area where my lymphoma was found. They removed my Cecum with a total of 12 inches of my colon. Plus 20 lymph nodes. The lymph nodes were clean of colon cancer but did have some lymphoma cancer cells.

The resection surgery was not bad. Easier than when I had a partial hysterectomy a few years prior.

Can you keep me posted on how your surgery goes? If you have any questions, or need some uplifting words of encouragement. I am here please send me a message.

I will be praying all goes well for you, and your surgery is a success.

God Bless you my friend,
Jackie

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My father started with Colorectal stage 2 cancer in Jan 2018. Then he went through chemo & radiation which shrinked the size to 5% remaining, so he was cauterized for the remaining part which didn't help. So APR Colostomy successfully was performed on Aug 2018. From Sept 2018 – Jan 2019, he was going through Chemo. But then, on Jan 23 2019, PET CT full body revealed metastatic skeletal lesions.
Anyone experienced colorectal cancer spreading to bones and surviving for more years than predicted? What was the treatment plan followed?
Any special diet which can be followed or any homeopathy or ayurvedic treatment?

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Hi. I just found out yesterday that I have stage 4 colon cancer that has spread to my liver. I thought I was a healthy 59 year old. I am having a pet scan to see if it is else where. I don't know where to start with things. Any recommendations?

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@tucsonfunnyfarm

Hi. I just found out yesterday that I have stage 4 colon cancer that has spread to my liver. I thought I was a healthy 59 year old. I am having a pet scan to see if it is else where. I don't know where to start with things. Any recommendations?

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Hi @tucsonfunnyfarm, welcome to the group. I'm sure that you must be reeling from the new of stage 4 colon cancer. You're not alone. Other members like @brenz @komalkochar @sc1218 and @tressa are living with stage 4 or caring for someone living with stage 4. You might be interested in these discussions too:
– Immunotherapy – Keytruda for colorectal cancer https://connect.mayoclinic.org/discussion/immunotherapy-keytryda/
– Talking Frankly about Living with Advanced Cancer https://connect.mayoclinic.org/discussion/talking-frankly-about-living-with-advanced-cancer/

Tucsonfunnyfarm, is this your first diagnosis of colon cancer or is it a recurrence of cancer?

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@komalkochar

My father started with Colorectal stage 2 cancer in Jan 2018. Then he went through chemo & radiation which shrinked the size to 5% remaining, so he was cauterized for the remaining part which didn't help. So APR Colostomy successfully was performed on Aug 2018. From Sept 2018 – Jan 2019, he was going through Chemo. But then, on Jan 23 2019, PET CT full body revealed metastatic skeletal lesions.
Anyone experienced colorectal cancer spreading to bones and surviving for more years than predicted? What was the treatment plan followed?
Any special diet which can be followed or any homeopathy or ayurvedic treatment?

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@komalkochar, how is your father doing?

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@colleenyoung

Hi @tucsonfunnyfarm, welcome to the group. I'm sure that you must be reeling from the new of stage 4 colon cancer. You're not alone. Other members like @brenz @komalkochar @sc1218 and @tressa are living with stage 4 or caring for someone living with stage 4. You might be interested in these discussions too:
– Immunotherapy – Keytruda for colorectal cancer https://connect.mayoclinic.org/discussion/immunotherapy-keytryda/
– Talking Frankly about Living with Advanced Cancer https://connect.mayoclinic.org/discussion/talking-frankly-about-living-with-advanced-cancer/

Tucsonfunnyfarm, is this your first diagnosis of colon cancer or is it a recurrence of cancer?

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This is my first diagnosis.

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Anybody with colon cancer with peritoneal spread here. I am 37 year old with colon cancer which had extensive peritoneal spread. Underwent surgery 2 month back and now am on postoperative chemotherapy. Keeping my fingers crossed. I need at least 35more years to live.. Hehe.. Anybody with such disease

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@shiwalika

Anybody with colon cancer with peritoneal spread here. I am 37 year old with colon cancer which had extensive peritoneal spread. Underwent surgery 2 month back and now am on postoperative chemotherapy. Keeping my fingers crossed. I need at least 35more years to live.. Hehe.. Anybody with such disease

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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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@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

Liked by shiwalika

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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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