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In Dilemma of surgery decision. Please Help
Last year April, 2024 I did both chemoradiotherapy for 6wks and 4Rds of preventive chemotherapy to shrink a tumour very close to my anus so surgery was ruled out. Now it has shrink to nearly a complete response but surgeon still wants to give me a permanent stoma because there's a tiny residue left behind even though the biopsy from it confirm No cancer cells but surgeon still wants to do surgery because he thinks cancer might lying deep underneath the scar tissue. Both Mri and CT scans show no cancer so I am worried because I want to follow the Wait and Watch procedure but surgeon thinks cancer will come back so surgery is needed but what if I do surgery and biopsy confirms No cancer again 😢? That means I will have to live a stoma for no reason. And for clarification I am not worried about the stoma. Any Help from people with this experience will be deeply appreciated. TIA.
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You need to get a second (maybe even third) opinion from a regional cancer center.
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I haven’t had to make such a decision and I agree with you. For peace of mind about the best way to go, I would definitely get at least one more opinion, from a major cancer hospital.
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1 ReactionHere is part of my reply to another thread on a similar issue:
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).
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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" surgery for me, but also indicated W&W was an option. That is what I am doing now.
I started with an occult tumor (also known as unknown primary), stage IV so have been in palliative care since the beginning. The tumor fell apart, & they were not able to remove everything. It was also in many lymph nodes. I have been told that it is a matter of where, & when the cancer returns, not if it returns. Because of that, I have decided I will not have a bowel resection/removal. In my case it would be permanent, while waiting to see where the cancer metastasizes.
Long way to say, surgery depends on a lot of factors. Only you can decide.
I have been treated twice since 3/21. I am not able to withstand the treatment again. Hoping for a long healthy stretch!