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2014 northeastern destination x ride
This ride is all about photographing colorectal cancer(diagnosed under the age of 50), Familial Adenomatous Polyposis(FAP) and desmoid tumor survivors for the 500UNDER50BEFORE5O & FACEiT Projects. I will also be capturing the sights along the way. The ride makes it start from Harpers Ferry, WV (one of my favorite places in the east), and will follow the Appalachian Trail to it's northernmost point in Maine.
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The primary objective of this chart review study is to evaluate the outcomes of subjects with Attenuated Familial Adenomatous Polyposis (AFAP) and Deleterious Familial Adenomatous Polyposis (FAP) who have not undergone surgical resection of the colon. A secondary objective of this study is to compare 1) the colonoscop
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Prevention of Progression of Duodenal Adenomas in Patients With Familial Adenomatous Polyposis
Duodenal carcinomas are the leading cause of mortality in patients with Familial Adenomatous Polyposis (FAP) who underwent prophylactic colorectal surgery. The purpose of this study is to determine wether celecoxib combined with ursodeoxycholic acid is an effective chemoprevention strategy to influence the progression of duodenal adenomas to carcinomas i
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ajin_ns
test
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A subset of APC mutation carriers shows a milder familial adenomatous polyposis phenotype (attenuated FAP) developing smaller number of polyps and colorectal cancer at an older age. It seems that a different mechanism to carcinogenesis is initiated according to the initial site of the germline mutation. The APC gene of a
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FAP hashtag for the community
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Hi all...does anyone take any supplements/vitamins that they feel has helped reduce size and number of polys. Has anyones doctor recommended ( or other wise not recommended)taking anything specific. I have read that turmeric, fish oil , B and D vitamins and maybe calcium can help reduce the overall growth of polyps. Thanks for any feedback.
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My daughter has been recenly diagnosed. We are researching the top places /and docs to treat FAP. Does anyone have any feedback on where to get most current and best rated treatment and care. She has only had a colonoscopy and multiple polys removed at this time and is waiting on further gentic testing. If this is not the right place on the site to ask questions like this..could someone guide me. Thanks for your help
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Community Mgr.
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
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catherine95
Thanks for your response. My daughter will be 20 next month. She is in the philly area but we would consider traveling even for a second opinion. I noticed in your list of physicians there was no one listed from Penn. I have been doing some research on my own and seem to only come up with Mayo , Cleveland clinic, and John Hopkins as what looks to appear as the places that see and specialize in alot of these types of conditions..Could you give me …Read more
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Wolfaleena701
Catherine I'm in south jersey ..Philly area. Did u find anyone at Penn?
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trishd
You should contact a university hospital near you. I had my surgery at UCLA. They should be a great resource.
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wsh_caps43
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!!
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Wolfaleena701
Hi Catherine I'm in Philly area did u find anyone at Penn?
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Background: I was diagnosed at 40 with duodenal cancer in December 2017. Also had a stomach full of polyps and colon with about 100. I had a whipple that removed my tumor, 1/2 stomach, 41 lymph nodes, gall bladder and 40% pancreas. A month later I had liver Mets. At 41, a genetic screen showed I had APC gene mutation and FAP. My last colonoscopy was in April, still had about 100, and they cleared out 14 precancerous polyps.
They have told m…Read more+ care 4+ hugs2+ thanks0+ prayers1+ care 4+ hugs2+ thanks0+ prayers1-
Aussie45
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-
jen325basile
I have contacted Stanford for a second opinion.
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CDuncavage
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.-
jen325basile
I would say within 6 months I was back to about 70% me. I can still eat most things, just less of it. My biggest advice is to get up and moving as soon as you can. I was walking with walker the next day, and reading the whipple FB board, a lot of people agree that helps with recovery. I also had things like bone broth (osso goods) on hand to get protein in the beginning. Afterwards, you have to limit fiber, so only cooked veggies or pressed …Read more
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Hi there.
I was diagnosed one year ago at 36 years old with FAP. My wife and I want to have a baby, but have had received mixed messages. My gi doc says go ahead and have babies and we will screen them. My colorectal doc sent me to a genetic counselor and now everything is as clear as mud. I feel that everyone is pushing me towards IVF with PGD but we don’t necessarily feel like that’s always the best answer.
Long story short, there is no …Read more
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Debbie Turner
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
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Debbie Turner
They thought he only had gastritis but his liver enzymes were elevated so that did a CT scan and he had 12 lesions on his liver, stomach, duodenum, and pancreatic cancer...he died just 8 months later. My daughter is 46 and has never shown any symptoms of the disease but they still won't rule it out so she is scoped regularly. In about 30% of people with FAP the mutation cannot be found. My sons and grandson were tested several times and the t…Read more
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daviskm1
Are you by any chance from Kentucky? There is a rather large group of people in the middle of the state that have FAP. That is where I inherited it.
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daviskm1
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
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allisonkami
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
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allisonkami
But many of those risks are also small. Desmoid tumors is the leading one, which I have no history of so far, and my GI doctor has told me that if I was going to have them, I probably already would. There is a risk of hepatoblastoma, but that's down around 1%. And we are at increased risk for several other cancers, all of which I am regularly screened for, and my children will be as well. I am comforted by the fact that with my children, we know…Read more
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allisonkami
In the end, if you decide to have children without doing IVF, you just have to accept that there are risks. But life is always full of risks; we just have the blessing and curse of knowing ours. Even the healthiest parents in the world are not guaranteed a healthy child, and even if you do IVF and screen for FAP, there is no guarantee that your child may not develop other unrelated health issues down the line. I think back to how easy it was maki…Read more
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jen325basile
I would like to mention I was told that Desmoid tumors are the second leading cause of FAP deaths. They might be benign, but do pose a risk and especially after surgeries. I understand what Allison was trying to say, and don’t negate that. Just wanted to add that Desmoids are not a “small risk”.
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Community Mgr.
jen325basile Out of curiosity, who told you that desmoids were the second leading cause of FAP deaths? I'm just curious about the changing landscape of FAP in providers' eyes since I was diagnosed in 2011 and told they were happy tumors I shouldn't worry about should I develop them (spoiler alert, as I predicted based on my risk factors, I did and I completely agree that they are far from an innocuous problem).
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jen325basile
I read this paper and then talked with my surgeon Dr. Hanson at Portland Providence that agreed.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3180149/
This quote:
Although benign from a histological viewpoint, a DT can display aggressive biological behavior characterized by infiltrative growth and a high recurrence rate after resection. DTs represent the second most common cause of death in patients with FAP.
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Aussie45
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
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Community Mgr.
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
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loz2323
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 -
jen325basile
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
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Community Mgr.
Hi jen325basile - While we're sorry to hear about your recent FAP diagnosis, we hope you'll find support for yourself and your son's FAP experience over on oneFAPvoice. Thank you for sharing your thoughts on this very difficult topic and being so proactive with your son to make sure he gets the care he needs! Don't hesitate to reach out if you want help finding information about FAP or just need a sounding board!
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I'm new here. Hello. I'm Laura. I am 34 and was diagnosed at 18. Kind of traumatic for me. We knew there was a chance it was FAP, but I was kind of hoping for something not as serious.
Now, 15 years later, I have fought with depression, suicidal thoughts, suicidal attempts, anger, frustration, hypochondria, being overweight, eating disorders... you name it.
I hate having this. I hate living with it. Somedays I don't notice it but then on day…Read more+ care 8+ hugs5+ thanks0+ prayers0+ care 8+ hugs5+ thanks0+ prayers0-
Community Mgr.
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
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I was diagnosed with Fap at age 37 in 2003. No family history of the disease, apparently mine was sporadic. In 2005 blood tests results stated that they could not find my mutation and that blood tests for my kids would be useless. I am just wondering if things have changed since then and if there might be a way now to find my mutation now so we can test my boys by blood work. I asked about repeating test but was told at the time my results would …Read more
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Frank Rider
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.
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Community Mgr.
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
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Wednesday
Thank you so much for this info! Yes I was tested for the APC and MYH mutations and thought at the time that surely there would be advancement in this area. I receive care at a medical University these days and will request an appointment with the genetic counseling as the one I met with previously is now retired. Thank you for the article, I will certainly read it and am sure to have more questions. My children were seen by a pediatric GI when I…Read more
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loz2323
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!
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Wednesday
One of my boys has been scoped with no findings so far but both will have to be scoped every year or two until we know for sure ...which probably means for life I'd guess.....blood tests won't do us any good unless they can find my mutation to compare. Hope you are doing well.....
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familial adenomatous polyposis and papillary thyroid cancer
I recently saw a 35-year-old man with a family history of familial adenomatous polyposis. A 39-year-old brother recently died from metastatic colon cancer. His mother and sister were also afflicted and have had colectomies. The patient himself has not had any colon polyps identified on colonoscopy. He has a multinodular goiter with several subcentimeter nodules. The largest nodule was ben
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I was diagnosed with FAP last month and facing 2-part surgery to remove the colon and rectum along with a mucosectomy. Can ayone share their experience with this exact surgery...recovery, post-surgery issues like incontinence? Thank you!
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polypsaplenty
I had the two-parter about 4 years ago. Basically, the first surgery is more physical in the recovery and it's a longer surgery. I think I was out of work for about 4-6 weeks. After the surgery, you'll have to get used to the ostomy bag, but just keep in mind it's temporary. It's a good opportunity to prepare for life w/ the J-pouch (if that's what you're getting) by monitoring your output, etc. Talk to the ostomy nurses -- they are li…Read more
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Wolfaleena701
Dear SLB3. Sorry to hear ur diagnosis..I am very new to all of this.. What is a mucosectomy?
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I have temporary ileostomy as of 7/20 and it is retracted (alot) and have not found what product and process works well they always leak. I changed bags becauase of leakage 9 times with 1 and 1/2 days. I average changing it twice daily. The longest one stayed success fully was 2 1/2 days. I would greatly appreciate to hear from people that had similiar problem and what worked for them. Some parts of my skin is doesn't even look like skin. It…Read more
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pouchsurgeon
Here comes and answer from a surgeon: it is a terrible Situation and Needs amending. I think that you have two options to make it work:
1. have the ileostomy amended, is a small surgery to fix it, you only do this from the Stoma site
If the pouch surgery went very well (ask your surgeon) early closure of the ileostomy after checking for healing of the pouch by xray exam is a viable Option. We are increasingly fashioning pouches laparoscopically…Read more-
Aussie45
I just talked to a leading stony nurse and she says the British are miles ahead of us in supplies and options. I had a lot of trouble all of a sudden with leakage.The solution was simply that I had changed enough that a concave connector was necessary.For the most part I was able to go 4-5 days with one bag --- awesome. I use the SENSURAMio 16716 and I cut my own so that I can match the size I need each time. I prefer the Smith and Nephew no-st…Read more
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Community Mgr.
Thanks pouchsurgeon for your thoughtful response.
cjpjrr3 As brought up by pouchsurgeon, it's worth discussing potential avenues with your healthcare team. Do you have an ostomy/wound nurse? For a few weeks in the middle of my proctocolectomy recovery, I too had trouble getting the bag to stay on for any prolonged period of time as the stoma seemed to retract as well due to my changing weight. I remember my homecare nurse was indispensable dur…Read more
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Young-Onset Colorectal Cancer: Earlier Diagnoses or Increasing Disease Burden?
Colorectal cancer (CRC) incidence and mortality in the United States have changed strikingly in recent decades. Overall, CRC incidence decreased by >30% from 1975 (59.5 per 100,000) to 2013 (37.9 per 100,000).1 CRC mortality similarly declined from 28.1 per 100,000 in 1975 to 14.5 per 100,000 in 2013—nearly a 50% decrease. Screen-eligible populations, particularly
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Young-Onset Colorectal Cancer: Earlier Diagnoses or Increasing Disease Burden?
Colorectal cancer (CRC) incidence and mortality in the United States have changed strikingly in recent decades. Overall, CRC incidence decreased by >30% from 1975 (59.5 per 100,000) to 2013 (37.9 per 100,000).1 CRC mortality similarly declined from 28.1 per 100,000 in 1975 to 14.5 per 100,000 in 2013—nearly a 50% decrease. Screen-eligible populations, particularly
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