All 4 of us siblings (ages between 30-42) took dna test and submitted to promethease. Two brothers did 23andme and my sister and I did ancestry.com All 4 of us had a possible miscall for the very rare cancer gene for familial adenomatous polyposis. Exact same magnitude of 6.5 and said possible miscall. There is no colon cancer in our family and other than our 63 year old parents having had a few polyps removed over past 25 years, there are no colon issues as well. I’m 42 with 5 kids so a bit panicked by the possibility of this being a true finding. My doctor said she isn’t concerned and doesn’t think I should worry since it’s very rare for me to have this gene at 42 and not know it. She suggested I take a clinical genetic test to ease my mind, but I’m curious if It is possible for all 4 of us to have the exact same miscall when using two different companies for the dna test? I’m most likely going to do a clinical genetic test just to make sure for the sake of my kids but still curious if there are any other cases like this out there
The greatest challenge for rare disease research is getting the word out to potential patients. This disease is hereditary and, if left untreated, can progress to cancer. Please help get the word out. http://canprevent.com/faptrial
Pretty much the title.
I don't have cancer yet, just hundreds of polyps in my colon. I have a few months before I have to do the big surgery. I would like to use this time to look into some non-traditional remedies for FAP, if they even exist. I'm honestly very scared of this surgery and how it will impact the rest of my life, I'm only 30.
I've never been a big marijuana enthusiast, so I really don't know much about it, cbd, or many of the other ways of using it. I'm doing some research on my own, but I figured I'd ask this community if they have heard of any stories or have any personal experience with marijuana in any form helping cure this disease.
Thanks.
My wife went for an eye exam and the eye doctor told her about what he found, CHRPE or "bear tracks". Little tiny black specks in her retina that have to be seen under a microscope. Eye doctor told her she needs to set up an appointment with a GI doctor to have a colonoscopy.
She goes to the GI doctor and he is in the midst of arranging her colonoscopy in ten days from now. We are told that people with CHRPE in the eye are highly likely to have FAP, familial adenomatous polyposis. People with FAP are guaranteed 100% to have colon cancer early in their life. She is 35 years old.
If FAP is diagnosed, she has to have a colectomy within the year. If it isn't diagnosed, we are safe.
I haven't eaten since Tuesday, I've emotionally broken down and cried way more than she has. My stomach hurts, I'm nauseous and I can't sleep. The physical shaking and tension in my muscles is pure hell.
I'm not sure if this is the right forum or place, but I have nowhere else to go and I hurt and it's so much grief it's almost destroying me.
I just wanted to tell someone or know if anyone has experience with FAP.
What is FAP? not the kind you might be thinking of that rhymes with slap, but F-A-P Familial adenomatous polyposis is an inherited condition that causes nearly a 100% lifetime risk to have colon cancer. Other complications of FAP may include duodenal cancer, sarcomas such as desmoid tumors, brain tumors, hepatoblastoma, benign features including numerous sebaceous cysts, stomach polyps, pigmentation on the retina (CHRPEs), osteomas, and sometimes extra or missing teeth. About 1/5000-1/10,000 people have FAP.
FAP typically runs in families, but can also be due to a new mutation. In my case, I am at least the 4th generation affected. At the age of 8, I began developing benign sebaceous cysts. At the age of 17 I had accumulated hundreds of colon polyps - all were precancerous, and a few which were very early stage cancer (in situ). I had my whole colon removed at age 17, wore a bag (ostomy) for 3.5 years, had surgery again at age 20-21 to have a J-pouch. At age 20 I was found to have 3 abdominal desmoid tumors - one of which is/was wrapped around a main artery.
A genetic mutation in the APC gene has been identified in my family. I have at least 15 relatives who also have FAP. My grandmother, who also has FAP, is 79 years old and just might be the oldest living person with classic FAP.
I am a female, age 28, born with and living with FAP, AMA.
I'm writing a research paper on Familial Adenomatous Polyposis (basically like a form of colon/rectum cancer) and I'm completely stuck. I have information but don't know how to synthesize it. Tips or help?
I am very new to posting anything, but I would like to take the time to figure this out in order to help someone in desperate need. I just moved from California to my brother's place in Texas. He showed me a flyer that had been passed around his work with little to no donations (besides my brother, and few other generous hearts). I love the people of reddit and figured this would be the BEST place to get the ball rolling.
Her name is Makenna Woody and is the daughter of my brother's coworker. Details to her situation are in the photo below.
It is Christmas time and I very much understand that everyone has many expenses to deal with, but hearing this story about this little girl broke my heart. She has already gone through many horrible procedures due to this illness. We hope so much that she will be able to enjoy the traditional seasonal celebration that she very much deserves!
As of now, $990 of the $3000 has been generated and has been open for donations since late October. Let's get this little girl the help that everyone should get! Again, Thank you so much for your time redditers. Let's make this happen!
The main donation page is here and the flyer that was being passed out is here.
Please help in any way you can. Every dollar adds up! (I personally have no income yet, so this is the next best thing I could come up with). If you're able to donate, I would like to personally thank you in a pm. If you can't donate, I would also like to personally thank you for reading this far and wish you the merriest of season! Please spread the word!
Hi, I’ve been hovering here since november after a gigantic approx 10cm polyp was found, and 30+ others. This subreddit was full of posts encouraging people to get checked, and they inspired me to get checked too.
My giant polyp was largely removed endoscopically but there was a suspicious portion remaining with a slightly more dysplasia-like surface.
One thing led to another, and 2 weeks ago I had a total proctocolectomy to solve both the polyp problem and the large polyp problem. Total figure came to 124 Polyps.
Histology has come back, stage 1 rectal adenocarcinoma, a tiny focus of it in the remaining polyp.
This as some may know, is a very favourable outcome for bowel cancer, and it’s exactly why screening is so so important. Get. Yourself. Checked. It’s scary to get investigated, but you cannot lose in the long term by getting answers. If you’re anything like me it might just save your life.
Healthy 69yo man had a delicious meal from a food cart vendor selling "catch of the day" ceviche on his last night of a vacation in Mexico. Flew back the next day, just in time for the horrendous diarrhea to set in. I saw him after 4 days of symptoms in urgent care, ordered a GI PCR panel (god bless those things) with the following results (https://imgur.com/a/uVHN0rR). In the words of my med student, "Wow, he just won at poop BINGO!" Indeed.
2 days later, he's feeling much better since starting oral vancomycin 125mg PO QID and azithromycin (per ID recs). He even ate some toast this morning.
I hope all of you are lucky enough to get a vacation to a warm sunny place soon, but remember to cook all the delicious fecal matter-infused food you eat.
Allo,
J'emménage dans un 'gros' bloc en juillet et j'ai réalisé que mon apparte est loin en titi de l'entrée et que tout est barré. Y'a un portique et c'est tout. Est-ce que Intelcomm laisse le colis à lentrée et avez-vous déjà eu des mauvaises expériences?
Je me demandais si je n'utiliserais pas plus tôt l'Adresse d'un parent qui habite dans une maison.. ca me fait 20 min de char à aller chercher le colis (je commande souvent) mais bon.. Je voudrais votre expérience.
Et une boite postale peut être mais des fois ca des grosses boites faque pas sure que la boite postale...
EDITH: Un gros merci. Je connaissais pas Flexidelivery de Poste Canada. C'est magique ! :) J'ai justement à commandé un truc d'entrainement je vais utiliser ca pour voir comment ca marche.
Encore merci Air Qc!
J’ai commandé il y a plusieurs semaines un téléviseur sur une plateforme en ligne européenne (mais non française), la commande a bien été payée, je n’ai cependant pas reçu de téléviseur, mais une dizaine de colis volumineux à mon nom et mon adresse, mais qui ne contiennent pas de téléviseur.
J’ai immédiatement informé le livreur, le vendeur et le transporteur pour leur signaler qu’il ne s’agissait pas du produit que j’avais commandé et que je n’avais toujours pas reçu mon téléviseur. Je n’ai obtenu aucune réaction du vendeur et le transporteur m’indique qu’ils sont à la recherche du colis sans succès depuis une dizaine de jours.
Quelles sont mes droits concernant cet incident de livraison ? Puis-je me débarrasser de ces colis à mon nom moi-même ?
Le vendeur ou le transporteur peuvent-ils me réclamer les colis qui m’ont été livrés ? Suis-je en droit de demander des indemnités s’ils veulent récupérer ces colis ?
Sachant que :
• Je n’ai toujours pas reçu le produit que j’avais commandé il y a plusieurs semaines, et je n’ai toujours aucun délai de livraison ou de remboursement.
• Le stockage des colis non demandés bloque une pièce entière de mon domicile.
• J’ai dépensé beaucoup d’efforts physiques pour réceptionner, entreposer, et photographier les différents colis et étiquettes présentes sur les colis pour documenter la situation.
• J’ai par là même fourni beaucoup de temps et d’effort à m’occuper de ces colis, à communiquer avec le vendeur et le transporteur et à documenter la situation.
Notamment, l’article L121-12 du code de la consommation est-il pertinent dans ma situation ?
Est interdit le fait d'exiger le paiement immédiat ou différé de biens ou de services fournis par un professionnel ou, s'agissant de biens, d'exiger leur renvoi ou leur conservation, sans que ceux-ci aient fait l'objet d'une commande préalable du consommateur. […]
Je vous remercie pour votre aide.
Possible miscall rs786203020 from ancestry? I uploaded data from ancestry into Promethease and said “ familial adenomatous polyposis “ magnitude 6.5. I’m 42 with no colon cancer in my family history I’m wondering how to find out if this is a miscall since I have 5 kids that I’m now concerned may have inherited this gene if u really do have it. I’ve put a message into doctor about a clinic medical genetic test and or colonoscopy a few years early. Just curious if there are other miscall for this one
