I am sorry that you are going through all this. My family is an FAP family as well but, we do our own research. I don't care what the Dr.s have told you but your case is a special case. I have 6 children three of which have been diagnosed with FAP. We are living on Herbal supplements and ORGANIC food. The hormones in todays food only make FAP worse. Black seed, Flax seed, high levels of Vitamin C and other things are keeping EVERYTHING at bay.
We have found so many ways to reduce the polyps and some just fall off on their own. You need a NEW DR. My Dr. thought he knew it all about this and NOW he is taking my lead with his other patients. So much for his chiding and his pettiness. He comes to us for questions as well as a Dr who has been battling FAP most of his life. Polyps in the stomach and esophagus are the most least likely to turn into cancer. Sound like your family has been more of a science experiment for those Dr.'s than patients.
Also Having children is NOT a bad thing especially with Invitro. The Dr.s can chose which embryo that does not have the mutated Gene. (chromosome 5) and so long as that embryo lives... that's it, end of the gene. If a child doesn't have it than none of the children born to that one or it's later family will have that gene.
If my family listened to the Dr.s my sister-in-law and husband would DEAD by now. You need to have faith and RESEARCH, RESEARCH, RESEARCH!!!!!
Now ask you're children if you should have put them out of their misery before you even gave them a chance and see what they tell you! Life is precious and God will not give us more than we can handle. It's how we deal with EVERY moment that counts! And there is no such thing as a higher chance than 50/50, it's 50/50 no matter what. UNLESS YOU TEST THE EGGS AND/OR SPERM ur playing Russian Roulette . Waiting until you conceive and then testing is the worst way to go and also the most selfish.
35 years ago my husband was diagnosed with colon-rectal cancer (malignant polyps) after a two day episode of light rectal bleeding, he was 21 at the time. He was in fantastic health, no digestive issues whatsoever. He had a temporary colostomy and then reconnection surgery.We were told all is well, no worries. 4 years later, the polyps returned at the suture site and he had to have a permanent ileostomy (he wears a bag). Between the first surgery and the second we had 3 children and I was pregnant with the fourth when he had surgery. At that time the doctor told us what he had was FAP and that if we were wise, we'd save the baby I was carrying a world of misery if I just aborted it! What a horrible thing to say to a pregnant woman . . . or so I thought.
A few years down the road we learned that all our children had FAP, including the baby I was carrying at that time. They were all diagnosed through genetic screening. They have all had ileostomies and all now wear bags. The children as well as my husband have all suffered with long bone tumors, desmoid tumors, calcium stones in the gallbladder and kidneys. They've had stones in tear ducts, and saliva glands. They have polyps removed from the esophagus and duodenal on a routine basis (every 6 months).
My husband and oldest daughter have both had whipple procedures done and my husband can no longer ingest any food. He is on total parental nutrition, tube feedings. He is living on borrowed time. We have been told that there is no stopping the progression of FAP, that it is an ongoing/lifelong disease that will eventually take all their lives.
I love each and every one of my children more then life itself; but if I knew then what I know now . . . I would not have brought children into this world who must suffer with this illness.
Today a woman can undergo amniocentesis to learn if a child she is carrying has FAP and then has options on what to do.
I would never suggest to anyone with FAP or a partner with FAP to have children who run a stronger then 50/50 chance of having FAP. It is a horrible illness for someone to be afflicted with.
Gardeners Syndrome is FAP. It was once considered an orphan disease, but is now all the same. If you have FAP, you also have Gardners and run all the same risks. I lost a husband, a son, and recently a grandson to FAP, and would not recommend having children. Why would anyone want to have to put their child thru all the testing, surgeries, etc, that go along with this hideous disease?