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advice needed for colerectal surgery

I need advice from someone who has gone through this: for the last 10 yrs my doctors have kept me cancer free, recently i saw a genetic doctor and she says i have been very lucky so far, i have attenuated fap and it is recommended that i have surgery to remove my entire colon. as of 1998 i am cancer free, however i was told that relying on colonoscopies was not a garantee to stay this way, she said for all she knew i could have cancer now, worried because i have been sick and my iron is low, im bruising easily , in chronic pain in bowels, and think there might be a blockage somewhere. waiting on colonoscopy again, (which im tired of going for), and she also said that i could have polyps that moved up my gi tract, as i havent had a gastrocopy in 10 years, so now i am worried, did i leave this go to long. i did the genetic testing to protect my kids, my little one is in the most danger from this, however was told they may not find the gene that i have. so my question is this, if right now i am still cancer free, do i have the surgery or not. this is my question to answer but how bad is the surgery and was this the right choice for you? i was also told that i will not stay cancer free and she was surprised i have so far.

i want to remain cancer free, but need advice please...
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Avatar universal

I cannot offer you any advice on the advisability (or otherwise) of undergoing colon surgery but if you do decide to go ahead with this operation then about six years ago I underwent a total colectomy - but for torrential diverticular bleeding.  In response to another Medhelp patient's question, I posted my experience on:-

http://www.medhelp.org/posts/show/523166

You may like to have a look at this and maybe print it off to show your specialist/surgeon to see whether he/she agrees with my observations.  Total colectomy operations can sometimes be performed laparoscopically in which case the post-op trauma might be less.

Do come back if you have any questions.

Oh - another observation - my surgeon told me that if the total colectomy had been performed because of the presence of FAP then the chance of eventual rectal cancer is increased by 17%.  Ask your specialist/surgeon about that one too.

regards
Morecambe
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Avatar universal
thanks for the info, that surgery sounds aweful, but then again so does colon cancer....still taking my time to make this decision as it looks to be a huge one.
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Hi, we have FAP in our family, my husband died from it at 32, my son was diagnosed at 16 and had his colon removed and we lost him to a Desmoid Tumor (another facet of FAP) at age 31.  My youngest son was diagnosed at 12 had his colon removed and is 39 now.  He has several polyps in his duodenum which they have been watching for years.  They normally don't become malignant in this area but can. My grandson was diagnosed at 10, and we lost him last year at the age of 18, also to a Desmoid. You are fortunate in that you have the attenuated form of FAP, where once polyps start developing there are few and can be removed via colonoscopy in the beginning.  I assume you are scoped yearly?  If they have not found any polyps, or your colon is not carpeted with them (which it will be one day) then I would NOT have the surgery to remove your colon at this point.  I do hope you've been having yearly scopes since 1998!  This is your only way of watching to see when they polyps will develop, and they will.  My daughter is 38 and has yearly colonoscopies and so far since she has not presented with any polyps so they are feeling that she did not inherit the mutation of the APC gene.  By the way the mutated gene was never found in our family, not even in my son and he has FAP, so now they are thinking in cases like ours that it is another gene causing the APC to malfunction. I hope you have really resarched FAP because it involves a lot more than just the digestive tract.  My children never liked being scoped yearly but it is the ONLY way to watch the colon, and whomever told you differently did you a real disservice!  I've worked with 4 geneticits across the country in an effort to keep my remaining grandson safe. I stay on top of this disease like crazy.  Educate yourself, and I don't know how old your children are but infants born into a family where one of the parents has FAP, they can be born with pediatric live cancer (Hepatoblastoma) or develop it by age 5. Also, they normally start scoping children at age 8, but I'm sure you know this. Please feel free to write me, I've had way more experience with FAP then I care to remember.  Take care......
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Avatar universal
If you have no polyps, or only a few, I would continue with the scopes and watch them.  Attenuated FAP normally doesn't turn cancerous until the late 40's to 50's. Even if you have your colon removed this does nothing if you do have polyps higher up in the intestine, so the logic behind your geneticist is confusing.  But once you reach the point where there are too many to remove via colonoscopy and of course you are older, then you MUST have the colon removed.  Remember everyone's experience is different when it comes to this surgery.  I do wish you all the best and know that you're dealing with a serious condition here, one not to be taken lightly.
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Avatar universal
i have many many polyps in my colon( rectal transverse ascending) after 10 yrs now i am full , md's only took out the big ones and left the others there. they had said in 1998 that there was too many and would take several hours to remove them and that he wasn't going to waste his time, yeah this was a surgeon, and alot are atenomous, tublivillous and tubular. and screening was every 2 yrs not yearly, so now it would take several colonoscopies to take them all out. because of all this geneticist said to have surgery. because there are so many polyps she said that some could be missed. and cancer would start. im aware that cancer can start in other areas and polyps could already be higher up, dont know where else they can go. i am 40 now this started when i was 28 yr old
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Avatar universal
Normally when there gets to be so many, removing the colon is the only way to insure that they get them all. Plus, they will just keep multiplying at a very rapid rate. An endoscopy done with a side view would determine if you have poyps in the small intestine. But polyps that develop in the small intestine/duodenum normally don't turn cancerous, but they do watch them closely with an endoscopy done yearly.  Polyps can grow large enough to cause a blockage. My son is 39 and has been without his colon since he was 12 and has a J-Pouch.  He is a marathoner, ultrathoner, mountain biker, speed hiker and competes in jujitsu.  He is married but has chosen not to have children due to the disease.  He does not have a special diet at all.  He has learned what foods make him have more BM's and avoids those, but otherwise eats everything.  He has 2-3 BM's a day. My brother-in-law was diagnosed with colon cancer at 38 and died the same year.  This is when we learned that FAP was in the family.  Back then it was called Gardners Syndrome and was considered an Orphan Disease.  Two years later my husband was diagnosed with colon cancer and died 8 months later.  Then my sons, and grandson were diagnosed with it.  I lost my son to a Desmoid, as well as my grandson.  These are part of FAP, but very rare.  They will need to monitor you for one after your colon is removed, please make sure they do this! Surgery is what can trigger their growth.  With all I've seen and have learned about FAP, if I were you, I'd have the surgery, it's time.  I know it's scary, but you need to think of your future and all you love and who love and need you. The worst part is the many BM's right afterwards, but this can be controlled with medication and avoiding the trigger foods.  My boys and grandson only had a few foods they had to avoid.  Your life will be normal and without the constant worry.  You will have no limitations as to what you can do.  I would find out if they plan to do the key hole surgery, it's less invasive.  But my boys and grandson did very well after their surgeries.  Your attitude makes a big difference.  I hope this helps you, and please feel free to write any time.  I wish you all the best and do take care.
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Avatar universal
Wow this is scary stuff,im glad i don't have full blown fap, but any cancer risk is not good either,  do you know what would make them do the tranditional surgery over laparoscopy one? i will have an endoscopy done at the same time as my colonoscopy just waiting on a colerectal surgeon apparently my gastroenterologist just up and left the province. nice eh...glad im not still waiting for him to call me. im leaning towards surgery, but still not 100% as i dont have cancer at this point that i know of.dont want to jump into this too early and then find out it wasn't necessary.i am reading and learning all i can to make an informed decision, and i am taking this seriously. i want to be around for my kids and boyfriend for many years to come.

thanks for all the info....
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Avatar universal
Do educate yourself because you do have full blown FAP, there's no such thing as having part of it.  If you wait until they find cancer, you'll be waiting too long.  It's inevitable and with so many polyps you are playing a dangerous game with your life.
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i thought afap wasnt as bad as having fap, this is what i understood anyhow, i know this is serious and i will continue to read about it.
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It is a milder form of FAP.  Your geneticist is your best resource because many physicians don't keep up with this.
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Avatar universal
I wound up seeking advice from a total of 5 geneticists across the country who were all in agreement with their advice and knowledge.  Whereas doctors vary a lot with how to approach this. I wish you all the best and take care!
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