Has anyone refused rectal cancer surgery due to concerns about getting a stoma b...

This is such a difficult situation, and it's completely understandable to have concerns about living with a stoma. Many people in this community have faced similar fears and decisions about rectal cancer treatment options. The good news is that temporary stomas are often successfully reversed, though it's wise to be prepared for all possibilities. Consider connecting with others here who have experience with stomas - many find that their quality of life concerns were greater beforehand than the reality turned out to be. What aspects of this decision are weighing most heavily on your mind right now?

I was diagnosed 6 years ago with stage 4 colon cancer. I received chemo and radiation. It has not returned to the original site so i opted out of surgery because i did not want a colostomy bag. It has since returned to my lungs and that’s my current battle. I am greatful that i did not get the bag.

Thank you so much for sharing, Joe! I'm so very sorry that cancer has returned to your lungs. It doesn't seem that surgery would have prevented that, though, six years later? I don't really see how, or understand how they know it's the same cancer -- couldn't it just be a new, unrelated cancer? I am so glad for you that you had those 6 years without a bag, and am wishing you the least painful and most successful treatment for the lung cancer!

I cancelled my first surgery date for the colostomy at the last minute. I brought the topic up with my oncologist first and he didn't even comment. Then when I saw the surgical oncologist he jumped on the ID and ran with it scheduling for the next Monday. Didn't have a good feeling about all if it, mainly wanted info about the procedure didn't want to go from frying pan to the fire and two weeks later had the procedure done. For me it was a big mistake as I suffer from a rare neuropathic pain disease complicating everything. There are pros and cons, you need to discuss with someone the pros and cons. Because my tumor who I named George, Mine is a permanent one, even if c they manage to shrink it because it's right on the rectum and sphincter, both internal and external when surgery is done to remove the mass I will no longer have a rectum, it's pushed into the vaginal area as well. You need to get nan honest evaluation, I also have a Foley, double nuisance.

I chosen the bag after chemo and had it for 3 months ,it’s definitely a challenge but it’s manageable compared to not being alive , Just manage what you eat not too much I never had a bag explode but close to it and I worked on my off week from chemo so you can do this if it’s going to help you ,stay strong you got this

Thanks so much to all of you! If I was 100% sure the bag would be temporary, I might consider surgery, but of course they can't guarantee that. And I've read reports that even if they are able to reconnect the "plumbing", it never works the same for the rest of your life (!) Too bad none of us have a crystal ball ... sigh!

my care team has planned Radiation/low dose chemo 25 treatments then 4 months of chemo with a pump. then new scans before they possibly do any surgery. they think they can get rid of it without surgery. I have stage 3 rectal just below my colon.

That sounds very promising! Thanks so much for sharing. Praying for your smooth path to NED (No evidence of disease :) 🙏🏻

Hello! Yes, I chose not to do the surgery. Let back up a little. I was diagnosed in April of 2025. They started with immunotherapy. It worked really great for a while. First MRI showed it shrunk 1/3 % away. The next 6 treatments the MRI showed no shrinking. The surgeon took my case to a tumor board and they said surgery was my only option. I asked to be put on Flo-Fox chemo. I have had 4 treatments and just had an MRI done and it is shrinking again. But this chemo is the worse thing I have ever dealt with. This is my 3 time fighting cancer. I did not want to wear a bag the rest of my life. Talk to the doctors and ask for options and then pray. God will help get us through this.

Thank you so much for sharing, Debbie. Yes, I am praying for both of us..🙏🏻

Hi Karen! I also am being treated at MSK. I originally had two masses (one was 3/4 blocking and invasive) however pathology from biopsies was inconclusive of confirming cancer. MSK did a ESD to remove the mass (7 hour procedure) through a colonscopy for further testing. They found that it did contain adenocarcinoma so they have given me multiple options. The high risk features in the pathology with small vessel involvement and potential unclear margins in submucousal layer/muscle layer have labeled me anywhere for Stage 1-3a (I have one lymph node on MRI that was .6cm versus .6cm in normal). We are going chemoradiation route to hopefully cure without surgery. Has this option been provided to you?

Hi Briana & Everyone, So, after my second MRI, which showed that both lymph nodes had shrunk by 50% during the last 6 weeks (without any treatment) and clean sigmoidoscopy, the team at MSK now feels that it is possible that what was thought to be cancer in the 2 lymph nodes and wall (resulting in the Stage 3b Rectal Cancer diagnosis) was actually residual inflammation from the polypectomy/removal of large cancerous polyp during my colonoscopy. So they now feel I should wait 4 months and then have another MRI before thinking about pursuing any treatment. Then if that one looks good, continue with MRI's, sigmoidoscopies and blood tests every 4 months, CT scars every 9 months and annual colonoscopies. If the next MRI looks bad, however, then I do not know what next steps would be, except that I would still plan to refuse surgery. (Thank goodness I did not opt for the immediate surgery option they gave me initially!!!) Of course, right now I am just so very thrilled and grateful for this totally unexpected and miraculous 4-month reprieve, and the amazing possibility that all the cancer was removed with the polyp! I truly believe in the power of prayer. I have been praying nonstop, and will continue to pray for all of you! 🙏🏻❤️

Diagnosed with rectal cancer in ‘23. Removed polyp and came back 6 mo later. 3a. Radiation and chemo followed. All good until lymph node discovered in my meso rectum. Said I needed a permanent bag. Got 5 second opinions and they all said I needed the surgery. Finally my radiologist said lets do SBRT targeted rads on the node. So far so good! He saved my rectum!! I did have a met on my lung but removing my rectum would not have stopped that from happening! Had SBRT on it and no evidence of cancer so far! Every case is different, so talk to as many doctors as you can before you make a decision! Pray, pray, pray!

I want to add I have a friend that did a temporary and is now 13 years cancer free! Just make sure how much of the rectum they are taking. The location of your tumor determines the success of reconnecting everything. I would get second opinions from other surgeons as to what kind of success you would have. They said they could not reconnect mine with success. I would have incontinence the rest of my life.

Thanks so much, Kay T! That is wild! SO glad you didn't listen to the 5 second opnions! For now,I am just praying nonstpp that my upcoming MRI will be clear & that they indeed got it all out in the polypectomy!!! 🙏🏻🙏🏻🙏🏻

I had the surgery and had the bag for 3 months and they reconnected me without issues .The bag isn’t a lot of fun but it’s not that bad considering. And initially my oncologist said I was stage four, but after they took the tumor out, the surgeon took the tumor out and after the biopsy was early stage two and that was 4 1/2 years ago. I did my blood work just two months ago and all my numbers are perfect. I’m due for a CT scan and a colonoscopy in a couple months.