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Thread: Any one have familial adenomatous polyposis?

  1. #11
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    I have FAP. Luckily/Unfortunately I was diagnosed at puberty because it runs in the family and the guidelines are first colonoscopy at puberty. At the age of 12/13 I had thousands of polyps. At the age of 21, I had genetic testing and a colectomy. Since then I have also had to have an ampullectomy due to adenomas found at the Ampulla of Vater. I am only 27 and my surgical history is more extensive than most people 3 times my age. This condition can be overwhelming due to the list of cancers it causes. My newest issue has been thyroid nodules with abnormal lymph nodes, a red flag for thyroid cancer in a person with FAP, female, and aged 28-30. Many physicians are not extremely familiar with this condition, so you have to be your own advocate. After my physician found my thyroid nodules, she consulted and endocrinologist who wanted to "monitor" my nodules with serial ultrasounds. I feel as if there is a time bomb in my neck. I found someone to biopsy the nodule and it came back as benign. I have difficulty with this because I have never had a biopsy result come back as benign. If anyone could help me with a few questions that I have, I would greatly appreciate it. I am currently looking for a physician that studies FAP patients. I would really like to send my genetic testing with my biopsy results to discuss the best course of action for my thyroid. The studies regarding thyroid cancer in relation to FAP are extremely recent, within the last 2 years. I am worried because the physicians I have been seeing do not know FAP. If someone could suggest a starting point I would love it, I am very overwhelmed. The colectomy and EGD I'm used to and my unfortunately is not new to anyone in my family. I am, however, the first person in my family to have adenomas at the ampulla area and thyroid issues. This is uncharted territory for me, and I'm scared.
    Regarding life after colectomy, I actually chose a hemi-colectomy, leaving a few cm of large intestine that has to be scoped every year, but is much more manageable. I take imodium on a daily basis and I will never have regularity, but I live an active life and rarely think about it. Until lately that is, I was started on Bentyl for my abdominal cramping. I am a nurse so I don't have the luxury of going to the bathroom as soon as I need to, the imodium has been very helpful in that regard. So I guess what I'm saying, Axion, grieve the diagnosis, but this is an extremely manageable condition. My only suggestion is, be your own advocate. As a nurse, I tell people to be educated regarding their own health; however, make sure you are getting accurate education. As a person living with FAP, I am trying to remain up to date with studies.
    So, please, if anyone can give me suggestions to follow up with my thyroid, I would be so grateful.

    -Nicole

  2. #12
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    Sarah
    It is amazing what you have overcome at your age! Thank you for sharing. Hearing other people discuss their condition forces me to deal with mine and realize that I have health issues, but I am lucky. I live a great life with an amazing husband. I can't let my health issues control me. I am a nurse, a wife, a daughter, a sister. I have FAP, but it cannot allow it to have me!

    Thanks,
    Nicole

  3. #13
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    familial adenomatous polyposis

    I have familial adenomatous polyposis since i was born but it was not found until i was 15 and i found it hard to find someone with it to understand me it is the reason why i started a blog to help someone with it and find someone to talk to because it seem to be a none talked about situation and i basically needed someone that i could talk to i have over a million and it is very heavy in my family would love to speck to anyone with this that need some one to speak to

  4. #14
    Hello Axion11, how's it going? My son has your the same situation as you.

  5. #15
    Super Moderator Top User po18guy's Avatar
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    Sadly, this thread is 7 years old and the most recent post was 4 years ago.

    I would recommend that anyone with this rare disorder visit the National Organization for Rare Disorders.

    Closing the thread to avoid any confusion.
    05/08-07/08 Tumor appears behind left ear. Followed by serial medical incompetence on the parts of PCP, veteran oncologist and pathologist (misdiagnosis via non-diagnosis). Providential guidance to proper care at an NCI designated comprehensive cancer center.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 ("innumerable") tumors, bone marrow involvement.
    08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
    02/09 2) Relapse.
    03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles, dose tapered.
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, stopped for lack of response. Watch & Wait.
    09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
    10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
    10/25/14 Clinical trial of Alisertib/Failed - Progression.
    01/12/15 Belinostat resumed/Failed - Progression. 02/23/15
    02/24/15 Pralatrexate/Failed - Progression. 04/17/15
    04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Stage IV-B a second time. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TREC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
    06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
    BMB reveals 5) 26% blast cells of 20q Deletion Myelodysplastic Syndrome MDS), a bone marrow cancer and precursor to Acute Myeloid Leukemia.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Moderate intensity Haploidentical Allogeneic Stem Cell Transplant receiving my son's peripheral blood stem cells.
    07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
    07/23-08/03/15 Marrow producing zero blood cells. Fever. Hospitalized two weeks.
    08/04/15 Engraftment occurs, and blood cells are measureable - released from hospital.
    08/13/15 Day 26 - Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin Graft versus Host Disease arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    11/2015 Acute GvHD re-classified to Chronic Graft versus Host Disease.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    12/16 Type II Diabetes, Hypertension - both treatment-related.
    05/17 Extracorporeal Photopheresis (ECP) begun in attempt to control chronic Graft-versus-Host-Disease (cGvHD.
    05/2017 Chronic anemia (low hematocrit). Chronic kidney disease.
    06/17 Trying various antibiotics in a search for tolerable prophylaxis.
    08/17 Bone marrow biopsy reveals the presence of 2% cells with 20q Deletion Myelodysplastic Syndrome, considered to be Minimum Residual Disease.
    12/17 Bone marrow biopsy reveals no abnormalities in the marrow - MDS eradicated. The steroid taper continues.
    01/18 Consented for Kadmon clinical trial of drug KD025, a ROCK2 inhibitor that is believed to help with chronic GvHD.
    03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
    09/18 Due to refractory GvHD, treatment with Imbruvica (Ibrutinib) or clinical trial of Interleukin2 being considered.

    To date: 1 cancer, relapse, 2 cancers, then 3 cancers simultaneously, 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), 5 salvage regimens, 4 clinical trials, 4 post-transplant immuno-suppressant drugs, the equivalent of 1,000 years of background radiation from scanning from 45+ CT series scans and about 24 PET scans. Having had both lymphoid and myeloid malignancies lend a certain symmetry to the journey.

    Believing in the redemptive value of suffering makes all the difference.

  6. #16
    Super Moderator Top User Baz10's Avatar
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    Even though the original post is 7 years old as such still provises useful current information access I have reopened this thread to allow direct input to the concerned FAP community.

    FAP is a precursor to developing more serious bowel problems , therefor should remain active to allow input.
    Barry
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2, current 8.1
    Prostate Cancer confirmed Gleason 3+Marginal 4.
    Active surveillance continues.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 7/09
    November 1 Vats Wedge section pathology Glomulated previous infection
    no Cancer.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

  7. #17
    Super Moderator Top User po18guy's Avatar
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    9,639
    Should it then be a sticky?

  8. #18
    Super Moderator Top User Baz10's Avatar
    Join Date
    May 2011
    Posts
    5,224
    Not necessarily po, as the original thread and responses do not contain specific medical information unlike DjinTionics.
    It is however useful that those having /dealing with FAP have somewhere to post.
    Barry
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2, current 8.1
    Prostate Cancer confirmed Gleason 3+Marginal 4.
    Active surveillance continues.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 7/09
    November 1 Vats Wedge section pathology Glomulated previous infection
    no Cancer.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

  9. #19
    Newbie New User
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    Oct 2018
    Posts
    1
    Hi! I am 27 years old and a year agщ first time i did colonoscopy. I had no symptoms, only low iron and hemoglobin. And so the doctor advised to check the intestines. I have a FAP. Doctors offer me a total colectomy, but I cannot agree with that, I am not so strong and therefore I check the intestines every 6 months. In my family, my mother had this diagnosis. I am very glad that I found you, since I am from Russia. And I haven't met anyone here with my diagnosis.

  10. #20
    Moderator Top User Fourlegsgood's Avatar
    Join Date
    Aug 2011
    Posts
    953
    Quote Originally Posted by Babycat View Post
    Hi! I am 27 years old and a year agщ first time i did colonoscopy. I had no symptoms, only low iron and hemoglobin. And so the doctor advised to check the intestines. I have a FAP. Doctors offer me a total colectomy, but I cannot agree with that, I am not so strong and therefore I check the intestines every 6 months. In my family, my mother had this diagnosis. I am very glad that I found you, since I am from Russia. And I haven't met anyone here with my diagnosis.
    I am sorry to hear about your condition. You will already know that it is not common and I hope you can get some information from this site.

    Nick
    Age 1/2 way to 120 plus 1. Symptom of blood in stools May 2011. Colonoscopy June 2011 confirmed rectal cancer. CT scan June 2011 showed no spread to other organs. Anterior resection July 2011 plus 50% bowel removed due to thickening observed during operation. Biopsy confirmed stage 2 in rectum only. Completed 8 cycles of precautionary capecitabine (4600mg Xeloda). Returned to horse riding 6 weeks post op, jumping 2weeks later and first competition 2 weeks after that. July 2012 - CT scan clear. June 2014 - CT scan clear. December 2014 - Colonoscopy clear. July 2017 - 6 year CT scan clear.

 

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