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    • Trekkie Monster

      Check all advice with your medical team! Plus, quoting medical sources (HON code requirement)   08/25/2015

      Here at Ostomyland we are a patient run community - meaning we have learnt what we know as a result of being the patient and 99% of our members have got no medical qualifications whatsoever, and so any support replies are usually based on personal experience or friends/family-members personal experience. As a result Ostomyland strongly recommend that all members should check the accuracy of any support/health advice they have been given here with a member of their own medical team (GP, ET/Stoma Nurse/ Surgeon etc) BEFORE acting on it. This is for your own safety, as all our bodies are very different, and what works for one might not for the other, and for another it might even be dangerous! Ostomyland is not responsible for the content of the posts made, each member is responsible for their own posts. So if you ever did get any duff advice (unlikely, but could happen one day....) then blame the person who posted the message, and not Ostomyland. We are proud to be HON code certified and work very hard to meet the requirements of their principles. As such, and as requested under principle 4 of the HON code guidelines we must ask that members of the forums please quote sources for any medical information they give which is not based on personal experience.   Thanks.
Narkor

Ostomy Decision - 3 weeks to decide

3 posts in this topic

Hi everyone,

I just joined. Currently my status is I have had a polyp removed and it is undifferentiated, and tumor budding is present. It is stage 1 adenoma carcinoma, a common cancer. The polyp was intact and it was removed.

The colorectal surgeon at our general hospital is recommending removal of 10cm of my rectum. 5cm above and 5cm below where the polyp was found.  Unfortunately there is only 4-5cm too close to my anus so it means if I make the decision it is an ostomy bag for life.

I am very concerned and troubled by the decision I have to make. The way it has been explained to me is that my macro cancer cells CT and MRI tests are all negative.

The surgery is recommended as the polyp had two out of four markers that make it a high risk aggressive cancer I am dealing with. There is a 20% to 30% chance they did not get all the micro cancer cells which are undetectable in any test. In order to prevent the 20-30% chance there are undetectable micro cancer cells from moving to my lymph nodes then liver and lungs, is to perform the surgery. This will reduce the 20-30% to 3%.

I am struggling with a decision that is based on statistics more than facts. The fact is I do not have cancer. I might get cancer from micro cells if they were not removed fully.

Has anyone faced this type of decision before and how did they come to terms it? I am a 46 year old male, with 0 health issues and have not had a cold flu or any sickness since 2015.

I have till Nov 22, 2017 to decide, and I am leaning towards not doing it, but still unsure. I am currently researching life with an ostomy bag but really scared of what I am reading. Not sure what other info you may need but let me know. Thank you.

 

Edited by Narkor
extra explanation

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"20% to 30% chance they did not get all the micro cancer cells which are undetectable in any test. In order to prevent the 20-30% chance there are undetectable micro cancer cells from moving to my lymph nodes then liver and lungs, is to perform the surgery. This will reduce the 20-30% to 3%."

Okay, Please consider this and discuss with appropriate medical personnel if you are so inclined.

Removal of colon 5 cm from both sides of where polyp was removed reduces cancer risk from 20 to 30 percent to but 3 percent.  Presumably, the 5 cm was chosen because after that each cm more is statistically insignificant for its effects when compared to the adverse other effects of that removal. 

Thus, can a standard normal curve be fitted to the 10 cm interval, polyp removal site on centre?  If so, you may find the statistical risk of leaving the absolute minimum on the anus side to keep a functioning sphincter and anus acceptable.  Now, this will, no doubt, be a very delicate operation requiring a highly skilled colorectal surgeon but, if it were me, I'd be asking the questions.  Note as well that, again statistically, the operation to remove sphincter and anus carries with it a 10 percent chance of rendering you impotent.

Tough call.  You need to pull in all available resources to make your most informed decision.  As to the qualitative factors, well, I had my total colectomy at about your age and I've learned not only to live with it but to flourish - Life is good.  Good Luck.

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So glad that I took the time to analyze and respond (on November 1st) to Narkor's desperate plea in a timely manner so that he would have some help in making his decision by November 22nd - His last visit here was November 1st so he likely hasn't even read it.  Unfortunately, not the first such happening... Maybe the time has come for me to re-evaluate whether such is worth my efforts, general approval rating percentage (Likes to Posts ratio) notwithstanding ...

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