Hi Nick W. - Thank you so much for providing support to the community and sharing your story! We will be sure to encourage teen/young adult and parents of younger FAPers to connect with you here! Please continue to stop by and share about what is going on about your life, FAP-related or not since the community definitely benefits from hearing from you! And I spotted no typos (although I'm a millennial so there may be a bias).

Such a great idea! Thank you so much for spearheading down under. There is so much power to meeting others who can relate, especially in person.

Hi Debbie Camilleri - You ask a very important question. By treated, I am guessing you are referring to the surgical removal of the colon? If so, most literature seems to state a 42 year life expectancy if the colon is not removed. Unfortunately, as more FAPers are getting diagnosed earlier and (thankfully) living past the well known colon cancer risk, they are living long enough to experience some of FAP's extracolonic manifestations and we are…Read more

So sorry to hear about your car accident and about your siblings lack of involvement in your FAP experience. Do you have other family or friends that you've been able to talk to about FAP? You're always welcome to spark or join a conversation here! Hopefully we can make the journey feel less like a solo venture!

I was 68 when my FAP was discovered, despite family history....my sister was in her 40's when she knew something wasn't right they found nothing....so later had to have a section removed due to cancer...then has continued quite fine....her daughters and her colon removed at 40 and does regular stomach scans. My dad died at 56 but first surgery was in late 40's and it was active cancer ... I think you can do a lot to get ahead of the polyps b…Read more

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My mother and I have always had tresos B, not sure how much it helps. However we also make carrot celery and beetroot juices as often as possible, I believe that helps

I work with a naturopath and functional nutritionist to make sure I am on track with the best supplements and food plan to optimize my health, nutrient deficiencies, symptoms and inflammation etc. When I am out of sync I take about 30 supplement caps/liquids a day. My surgeries for stomach and colon removal have been canceled and polyps reduced in number and size.

I would look in your area or talk to someone at your gastro to see they have functional nutritionist there yet - some hospitals are finally making it a priority 🙂 but there are many that will work online/phone. There is supposed to be a good group at Cleveland Clinic. Dr Mark Hyman has a bunch of info about his clinic in MA online and he partners with Cleveland. My naturopath is in Vermont and doesn't work online.

Hi catherine95,
I have been taking AHCC a shiitake mushroom extract for the last 2 years + for ovarian metasteses, which initially shrank and have remained unchanged for that time. Also, the rectal polyps have become more quiet, so that instead of 20 polyps being removed every 4 months, this last visit the surgeon decided nothing was bad enough to need removal. AHCC is big in Japan, so if you just google AHCC you can read up about it and draw yo…Read more

Hi catherine95 - While we are glad you found oneFAPvoice, we're of course sorry to hear about your daughter's recent diagnosis. You are absolutely in the right place to ask questions like this and anything else related to FAP! Where are you located? Also, how old is your daughter? We actually have a list of healthcare centers and doctors who have experience with FAP in our people and places section here and at the tope, there's the option to f…Read more

You should contact a university hospital near you. I had my surgery at UCLA. They should be a great resource.

Hi catherine95!

Dr. Matthew Kalady at Cleveland Clinic is amazing! He and his staff are very thorough and caring. His nurse Gina and the scheduler Margaret O’Malley are equally as amazing. I have been a patient of his for a while and he is such a detailed doctor and describes everything in a way that is easy to understand. The clinic is also a very nice campus and is very accessible.

I hope this helps. Good luck to both you and your daughter!!

Hi Catherine I'm in Philly area did u find anyone at Penn?

Dartmouth has a good team ....especially if the pancreas is involved (DHMC. ...Lebanon, NH)

I was diagnosed this summer (live in NY) and researched for weeks to find the most knowledgeable doctors and surgeons in the United States. I have a team here in NY but I also fly to the Cleveland Clinic to see Dr. Carol Burke (GI) and Dr. Matthew Kalady (surgeon). Dr. Burke is the most knowledgeable, experienced FAP doctor I have come across. She is involved in many clinical trials and on the board of the hereditary colon cancer organization. T…Read more

Mayo Clinic in Rochester, hands down. There is a reason they are known as the best of the best. They did my grandma's and father's surgeries, mine, and my two brothers surgeries as well. They also saved my father's life after he had to have a second FAP related surgery that otherwise would have killed him. I wouldn't go anywhere else for treatment.

You are in a rough situation....can the liver be replaced .....there is a lot going on with liver donations as a piece will regrow. I had the colon removed when they did all the rest you had done ....it was one massive research trial and I was fortunate to have a very very amazing team and family so I recovered and am five yrs post op.....not that there haven't been some real challenges, but all is in the Lords hands....
I am so sorry the gene …Read more

Quick question as I am scheduled for my Whipple procedure in two (2) weeks, how was the recovery?
From the beginning of my FAP diagnosis, my colon was the first (1st) organ removed. Afterwards I had 3 inches of my small bowels removed two (2) years ago and now the Whipple Procedure for my noninvasive cancer in that area. You can live a healthy and long life as long as we can keep the polyps under control.

Hi. There is an FAP Forum on FB where many people from all over the world share their experiences with a wealth of knowledge. Geneticists are truly your best resource. You obviously have a spontaneous mutation of the APC gene with no family history. When I married my husband we knew nothing about FAP or it being in the family until my 38 year old brother-in-law was diagnosed with Stage IV colon cancer and died. By that time I had three babie…Read more

There may be no history of FAP in your family, but it is there. Have you done the scopes? Did they find anything? If it is just a few polyps, then you may have Accentuate FAP which normally has less polyps. The Cleveland Clinic is probably the foremost authority on this disease. I have it & had the ileo-anal jpouch surgery but as I has aged (67), the polyps have spread to my esophagus as well as my stomach. It's just a bad disease & wi…Read more

My case is similar to yours: my FAP is the result of a new mutation with me, so I have no family history of it as well. Regardless, whether you inherited the mutation or it originated with you, there is a 50% chance of your children inheriting it from you. If you would like a guarantee that your children will be free of this particular disease, IVF with PGD is your option.

That said, there are a lot of choices you could make based on that inform…Read more

You are facing a tough decision .....whichever way you decide to go DO NOT LOOK BACK and play the if only game. If you are not sure, don't. There is so much happening in research that I don't feel as strongly today as I did when my children were born in the 70's and FAP was not even a word....

Adoptions are wonderful and I don't know if the egg /sperm can be tested ahead or not yet. A lot of people have their head in the sand on this …Read more

Hi akress - Welcome to oneFAPvoice, Decisions around starting a family can be overwhelming and confusing in general but especially so when you add FAP into the mix so it's totally understandable that you have a lot of questions (and it's great that you've been asking them and consulting with different medical professionals). As mentioned above, the genetic counselor is a good starting point when it comes to family planning with FAP especially …Read more

Hi,
I too carry the gene. My long story short- I Went through PGD years ago 3 times (ended up with one embryo), we then split up. Didn’t use embryo. I now have a 3 year old who we created naturally and are unsure if he has the gene or not, and won’t find out until we need to know. There is a page on Facebook called OZ FAP gene support group. It’s very mixed some people have gone the PGD path and others haven’t, totally your choice and y…Read more

I just found out that I am FAP (APC gene mutation) at 41. I’m first one in my family and now have stage 4 duodenal cancer with liver Mets. I have two sons, once tested, my youngest (6 years old) has my gene mutation. I feel horrible that I gave him my bad genes. He now has to have a colonoscopy at 6 and reading boards a life of a lot of them. I personally would do IVF. FAP can cause liver cancer before they turn 5, etc. Maybe at a minimu…Read more

My two cents: My grandma had one child, my dad, who had FAP like her. My dad had 3 children, my brothers and I, and we all tested positive for FAP and had surgery by 9 years old. I do have a child and she is four. We chose to have her genetic testing done and get the results next week. I expect her to have it, as Mayo Clinic has said our gene mutation is strong. FAP wont prevent me from having future children, either. Just from my surgery to my y…Read more

Welcome Lauralynn1027 ! First of all, you are far from alone in your anger towards this disease. Sometimes there are days or even weeks where we can go about our lives without FAP front and center but frustratingly, it is a misunderstood lifelong disease that doesn't every quite go away, and even if its physical complications subside, there are still emotional ones plus endless precautionary medical appointments. When I first got diagnosed (at 2…Read more

Yes, I think it is worth re-exploring genetic testing for your kids. For starters, the MYH "brand" of FAP had barely even been detected by 2005 - only the more prevalent "APC coli" mutation. Second, there have been great strides in the cellular-level/genetic testing in the ensuing years. At a minimum I would at least seek input about your question from a genetic counselor.

Welcome to oneFAPvoice Wednesday ! I would echo Frank Rider 's sentiment about there being value in discussing additional genetic testing options with a genetic counselor and/or a hereditary GI cancer specialist. You are not alone in having FAP with an unknown mutation and research is continuously being done proposing potential new causative mutations (for example, here's an article a few years ago proposing further investigation into a potenti…Read more

I am 31 and also have FAP, it is throughout our family. In 2011 I was able to find out that I had a mutation in my APC gene which caused the FAP so I’m sure you can find out more information. Silly to think anyone says it’s a waste of time testing the kids!

Your genetic testing can absolutely be used to find the genetic mutation in your kids. The mutation will be the same in both parent and child if they both have the mutation. While family history is helpful, I'm confused why they wouldn't do testing. We just used my genetic testing to test my daughter for FAP. Have you looked into getting testing done at Mayo Clinic or Children's Hospital for your children? Mine was done at Mayo, my daughters b…Read more