Just diagnosed: Surgery not an option, looking for hope

@vcsongradi My husband's story is so very similar and the hospitalist told me when he was diagnosed just 3 weeks ago with stage4 rectal with mets in surrounding lymphnodes and lungs, since his lymph nodes have been so very impacted, just like his lungs and prostate are so very cancerous, the state of his tissues would not go through surgery well. Described as paper, his tissues would tear and not heal healthily. If he starts hearing about ostomies, he will check out, and that would be a risk of having surgery I think.

I swore I would never wear a bag, but I did for four months after a temporary ileostomy following rectal surgery. It was not as bad as I had imagined. I also had six months of chemo that was also not that bad. The one thing I was dead set against was radiation which I was able to avoid by following the Prospect protocol. My top priority was preserving Quality of Life and I made that very clear to every oncologist I talked to. Cancer treatment is a very personal thing with a range of options. I encourage you to do lots of research, have thorough discussions with the medical professionals, and make informed decisions based on your shared priorities. Good luck.

@jaspithill1946 what's the Prospect protocol?

Under the Prospect protocol, in certain circumstances surgery is performed following chemotherapy, without any radiation therapy. There is an abundance of information available on the internet.

@jaspithill1946 I had 5x immunotherapy to shrink a large tumor (no mets)followed by surgery…the treatments actually zapped the cancer—all 36 nodes clean, scans clean, Signatera 0…this can happen with chemo as well..it made for a safer surgery for sure..every case is different…many people just want the tumor out asap- i originally felt that way, but am grateful for what my docs did for me, the way they did it.

@mjohnston, this must be so worrying for you. What treatment did the cancer team suggest? Did they also offer a referral to palliative care for symptom management? How are YOU doing?

@sbelyea must be nice to be rich. I could never afford such surgeries. Happy for you though!

@colleenyoung thank you for your message. Yes, we have palliative care. He is doing 12 rounds of Folfox chemo. Today is my first day back at work, my oldest son is caring for my husband while I am here. Today has been so hard, I'm not sure how long I can do this. Thank goodness I have friends bringing meals and my work is so very understanding. This is still my worst nightmare.

May want to get another opinion.

Husband diagnosis and prognosis nearly identical. Quality #1. After the first several cycles we settled in to living with cancer. Ups. Downs. Dosage reduction. No surgery. Nearly 4 years later playing golf and pickleball once a week. Snowbirds. We’ve relooked at what’s important and adjusted our lifestyle. Super grateful for caring oncology teams in two states. It’s so darn overwhelming at times. Just deal with today. Don’t look back. Don’t look too far forward. Best wishes!!