Living with colorectal cancer - Meet others & come say hi

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/

@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 🤗!

@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

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?

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?

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?

@komalkochar, how is your father doing?

This is my first diagnosis.

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

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.