Newly a caregiver for my spouse with stage 4 colorectal cancer

Hi. I’m going through almost the same. My husband is stage 4, in his early 50’s. with a teenage child. This disease is terrrible but I read that a lot of people are still here after extensive treatments. Life won’t be ever be the same before this terrible disease. But in my situation I put all my faith and trust in the hands of god and just pray and pray. Your husband will be alright. There are a lot of new medications that are out at there. The best thing you can for your husband is to continue your support and demonstrate that you are strong and advocate on his behalf. Ask questions to his doctors and always go with him to his important appts. Let me know if you have questions. God bless your husband and your family.

Stage IV Colon cancer survivor now for 3 years. Keeping looking forward and keep positive thoughts. The journey is rough but you can do it. Stay strong.

Hello @twin71 and welcome to the Colorectal Cancer support group on Mayo Connect. I appreciate your post. It shows how you can survive Stage IV colon cancer and that is encouraging to so many people.

If you are comfortable sharing more about your experience, I would be interested to know a little more about your cancer journey. For example, what treatments did you receive, (such as surgery or chemotherapy) and have you needed to adjust your diet since your treatment?

I look forward to hearing from you again. Will you continue to post?

Yes, I will share my experience later this week when I have more time.

I originally was diagnosed with colon cancer 2C in 2019 for which I went into emergency surgery after a colonoscopy, followed by 8 months of chemotherapy. My oncologist in Wisconsin only did one scan and although I complained things didn’t feel right, he always said my counts looked good. 9 months later when I finally was convinced it wasn’t me just feeling something was wrong but I had a horrible feeling my cancer was back. I was diagnosed with stage IV Colon cancer non-curable. I felt like I had been given a death sentence. After a couple months of chemotherapy but a different kind, they referred me to Mayo as it was my only possible hope of remission. Dr Jin was/is my oncologist and made the treatment there possible. He recommended not finishing my last two rounds of chemotherapy because of the neuropathy and numbness in hands and feet. I had 4 weeks of radiation followed by a month of rest. July 26, 2021 I had a four hour surgery on lower back to take out part of S2 where cancer had spread. Two days later I had a 12 hour surgery in the colon and organs nearby that had been affected. I ended up with an iliostomy. I spent two weeks in the hospital but had the best nurses and doctors to help me through some of the toughest times. I went home with a catheter and iliostomy. After a month the catheter was removed and they thought I would be self-cath for the rest of my life. I am not but I don’t have the sensation of when I have to urinate. Thankful for good ol’ Depends but very humbling to wear them at my age. The iliostomy was reversed after 3 months and the following months were challenging with bowels trying to get back to normal. The following months I had PT that came to the home to help get some strength back for walking as well as using my fingers and helping with neuropathy and to get some of my numbess to go away. I have had numerous massages and acupuncture which seem to help the most with waking up my nerves. I am 3 years and 4 months in remission. Although I wish my walk was normal and my bladder and the numbness, I am glad to be alive. I am glad I kept pushing forward and positive.

@twin71,

Yours is an amazing story that indicates the importance of self-advocating for your health. Many people would have undoubtedly listened to the doctor rather than seeking another opinion when they felt that something wasn't right. It sounds as if this was a significant decision that led to your ultimate surgery and treatment.

It sounds as if Mayo Clinic was a very positive experience for you! I hope that I can invite you to share with others who are traveling this journey with cancer.

I definitely am open to sharing.

Hi, So very sorry you are going through this. I am in a very similar position with my spouse right now and have young children. It is a very isolating and scary experience to go through. Please let me know if you would like to connect and support each other.

Can a moderator help us share contact info? I can’t see how to send a direct message…

@lmhgator80 It’s hard to be a cancer patient. It’s hard to be a loved one of a cancer patient. I hope through this trauma you’re both a support for each other and able to communicate. I was diagnosed stage 4 appendix cancer in 2021. At the time I had a very low chance of making 2 years. I had a wonderful medical team. I didn’t need to research and self advocate because they were fabulous. If you and your husband are not comfortable with your team you should consider changing. Or at least get a 2nd opinion.

I’ve been very fortunate. Major surgeries, 6 months of Folfiri and Avastin then HIPEC + cytoreductive surgery + a peritonectomy.

Just examples of how treatments have improved. You need confidence your medical team is across them and weighing quality and quantity of life. I’ve been NED since May 2022 and off treatment. My cancer isn’t curable.

I hope you can find caregivers in similar situations to yours to char together. They know better than we cancer patients do what it’s like watching the fight 🙏❤️‍🩹