Is anyone here on the Wait and Watch program instead of surgery?
Please I need help with making a decision for Wait and watch program or surgery to permanently remove my rectum and given a permanent stoma. I have had an excellent response from chemoradiotherapy but surgeon still insist on doing a surgery. Apparently there's a 30 percent reoccurrence chance of cancer. Please anybody with this experience or information or anything should help me with this please please 🙏
Interested in more discussions like this? Go to the Colorectal Cancer Support Group.
First question?
Did you have complete pathological response (no signs of cancer with colonscopy, ctdna blood test and MRI)
I had complete response four years ago and love the resultss with no surgery.
You must continue regular MRIs every 6 months and yearly colonoscopy for 5 years
I recommend a ctdna blood test to check for residual cancer
Get a second opinion, some doctors are very uncomfortable with watch and wait ( read will not do)
https://www.mskcc.org/news/how-watch-and-wait-approach-may-help-people-rectal-cancer-preserve-their-quality-life
article on watch and wait
https://www.nejm.org/doi/full/10.1056/NEJMoa2200075
article on ctdna testing
This is quite a tough decision and very much on the edge of current debates on rectal/colon cancer treatment. I have had many conversations about this with both onc surgeons and onc chemo docs. The main study they all use is the OPRA study from MSK. (https://www.mskcc.org/clinical-updates/rectal-cancer-response-to-total-neoadjuvant-therapy-predicts-organ-preservation-and-survival-outcomes).
"Patients who pursued a watch-and-wait strategy were followed at frequent intervals with digital rectal examination, flexible sigmoidoscopy, MRI, carcinoembryonic antigen testing, and CT imaging as previously described. (15) The median follow-up for patients who pursued organ preservation was four years. (1)"
There are a number of factors that drive a person's "eligibility" for watch and wait detailed in the study, including all negative scans, and tolerating very aggressive surveillance. For me, its a 3 month rotation of CT, MRI or sig flex so I have something just about every month. I also have the Natura blood test that took a DNA sample of my tumor, then tests for that in my blood. I was positive when I presented, has been zero for moth than 18 months now.
My surgery, if we did it, was intended as a reversible stoma (3 - 6 months). My tumors were a bit higher in the sigmoid area, not low, which makes the procedure not as tough in terms of recovery.
My next sig flex is the end of this month. Every time we worry. With the surgery/bag, you might not worry as much for each test. The surgeons want to be sure the patient losing part of your rectum but has no sign of disease on pathology is a "success."
I did have CRR, and CPR on all my scans, with no sign of disease.
My last treatment was radiation/chemo Feb of 2024.
Very hard choice. My doctors told me "Five to ten years from now we will probably have a test to sort who is best for W&W and who is not. Right now we might be over-treating a lot of people, but we can't predict outcomes and risks well enough."
They "recommended" surgey for me, but also indicated W&W was an option. That is what I am doing now.
@evo I hope you saw the helpful experiences and information that @daledales and @michaelfromsf shared. How are you doing in your decision making?
I understand all too well the difficulty regarding APR. I have had all my Mayo physicians and the tumor board say for "cure" that is what I need to do. I am 77 and not a fan of major surgery at this stage without any metastases, no concrete evidence of any cancer at this time in lower rectum, I feel good, take dance fitness class and walk 1-2 miles most days. My cancer took a year and a half to find as it was inside a large tumor upon which they did an transanal resection. I was unable to complete the full chemo/radiation course as a result of a stroke-like reaction to an infusion. However, the tumor got much smaller and I was told I had a Near-complete response. I have read the MSK report and, 3-4 months post treatment, there was no change in size of the tumor. I go back in early April for another set of scans. I may be forced to have the surgery at some point, but I just cannot justify it now. They cite markers in the scans that point to the likelihood the remaining tumor contains cancer still. After study of all the tests, I have decided to wait and see. Good luck. I will cross my fingers for you.
I had a diagnosis of colon cancer. The cancer was removed in June 24. I am on wait and watch maintenance now to receive CT and MRI every 6 months. I pray no more cancer is found. I have a colostomy.
I forgot to add, I have a hernia under the colostomy. I did not plan a reconnect at 80 as I am doing well with the colostomy, not may have to have a hernia surgery. Anyone have a hernia surgery and still be able to keep the colostomy? I just feel the reconnect major surgery I don’t want to do. Thanks
I am hoping to undergo 'watch & wait', I am 33 and was diagnosed with T4b rectal cancer.
Thank you all for taking time to share your experience and I am glad you guys are here when we need. But atm I cannot justify why I should have my rectum remove when there's no evidence of cancer after doing both radiotherapy and chemo. Right now I have ask for a deep tissue biopsy to be taken under sedation so finger cross hopefully I get no cancer. Pray for me guys I'm 40 and want a quality life for my kids