Earlier this week I met with my oncologist to discuss the potential impact of the planned two stage colectomy on the desmoid tumours that I currently have.
I was aware of the risk that the two upcoming surgeries might cause existing desmoid tumours to grow or new ones to form. I was however surprised at my oncologists suggestion that I should strongly consider having a straight colectomy with a permanent ileostomy (bag) as this would effectively reduce my risk of developing new desmoids or causing existing ones to grow in half.
Although given that desmoid tumours are such a rare condition... i think only 900 of these tumours are diagnosed a year in the states there is simply not much data on them in terms of treatment or prevention. Fortunately the six months of chemo that I had to treat mine worked even though the oncologist does not understand the mechanism of why it worked... Frankly I couldn't give a damn how it works as long as it works. Which it did.
So I have a choice.
How much lower is the risk of desmoids? Great question... I would estimate the risk is about halved. And again not a lot of data on this at all. So not the most comfortable decision to make for a few reasons....
Lack of data: I like to weigh the pros and cons and to be able to quantify the risks. While I can look at pros/cons. It's near impossible to get a good handle on quantifying the risks due to lack of sample size.
If it aint broke don't fix it: I am a healthy person now; I have no symptoms. Most people when considering a permanent ileostomy either have some form of disease such as colitis, chrons, IBD or cancer OR they have suffered a trauma such as a car accident or a gunshot wound. I fit neither of these cases and I feel great day to day. And I get that this is a proactive operation designed to prevent future problems.
I don't have any tattoos: I have never gotten a tattoo for the fear that one day I might regret my decision. And with this decision of a permanent ileostomy which is great because it reduces the risk of agitating/creating desmoids is terribly permanent. There is no option to revert to the plumbing that I was born with.
And at the same time it is a comfortable decision for me to make:
My medical file is big enough: I have seen enough doctors and specialists to last a life time and as much as possible I would like to give this a rest and move on with my life. While a permanent ileostomy is not my first preference if it means only one surgery AND halves my risks of developing desmoids (which can be fatal) then this greatly increases my chances of being able to lay this stuff to rest and get on with the fun things in life of which there are many many many things.
An ileostomy ain't all that bad: I have spent the last couple days doing research and talking with people who have or have had them and from what I understand it is an adjustment AND one that once made will not interfere with all the things I like to do... hiking, biking, running, yoga, swimming, camping, skiing etc... AND yes there is an adjustment period.
So with this in mind I am about 95% set on a permanent ileostomy. My surgery date is still set for December 1st. I have an appointment next week with my surgeon to review this proposal (switching from a j-pouch to a permanent ileostomy) and hopefully at end of day Wed will have the surgeon's buy-in and will still be good to go for December 1st. Fingers crossed!
Okay off to work.
I was aware of the risk that the two upcoming surgeries might cause existing desmoid tumours to grow or new ones to form. I was however surprised at my oncologists suggestion that I should strongly consider having a straight colectomy with a permanent ileostomy (bag) as this would effectively reduce my risk of developing new desmoids or causing existing ones to grow in half.
Although given that desmoid tumours are such a rare condition... i think only 900 of these tumours are diagnosed a year in the states there is simply not much data on them in terms of treatment or prevention. Fortunately the six months of chemo that I had to treat mine worked even though the oncologist does not understand the mechanism of why it worked... Frankly I couldn't give a damn how it works as long as it works. Which it did.
So I have a choice.
- Two surgeries and live a life with a j-pouch which means no external bag and 4-8 bowel movements a day AND a higher risk of desmoids OR
- One surgery and living with a permanent ileostomy with a lower risk of stirring the hornets nest of desmoids.
How much lower is the risk of desmoids? Great question... I would estimate the risk is about halved. And again not a lot of data on this at all. So not the most comfortable decision to make for a few reasons....
Lack of data: I like to weigh the pros and cons and to be able to quantify the risks. While I can look at pros/cons. It's near impossible to get a good handle on quantifying the risks due to lack of sample size.
If it aint broke don't fix it: I am a healthy person now; I have no symptoms. Most people when considering a permanent ileostomy either have some form of disease such as colitis, chrons, IBD or cancer OR they have suffered a trauma such as a car accident or a gunshot wound. I fit neither of these cases and I feel great day to day. And I get that this is a proactive operation designed to prevent future problems.
I don't have any tattoos: I have never gotten a tattoo for the fear that one day I might regret my decision. And with this decision of a permanent ileostomy which is great because it reduces the risk of agitating/creating desmoids is terribly permanent. There is no option to revert to the plumbing that I was born with.
And at the same time it is a comfortable decision for me to make:
My medical file is big enough: I have seen enough doctors and specialists to last a life time and as much as possible I would like to give this a rest and move on with my life. While a permanent ileostomy is not my first preference if it means only one surgery AND halves my risks of developing desmoids (which can be fatal) then this greatly increases my chances of being able to lay this stuff to rest and get on with the fun things in life of which there are many many many things.
An ileostomy ain't all that bad: I have spent the last couple days doing research and talking with people who have or have had them and from what I understand it is an adjustment AND one that once made will not interfere with all the things I like to do... hiking, biking, running, yoga, swimming, camping, skiing etc... AND yes there is an adjustment period.
So with this in mind I am about 95% set on a permanent ileostomy. My surgery date is still set for December 1st. I have an appointment next week with my surgeon to review this proposal (switching from a j-pouch to a permanent ileostomy) and hopefully at end of day Wed will have the surgeon's buy-in and will still be good to go for December 1st. Fingers crossed!
Okay off to work.