I Have Desmoid Tumor

A Desmoid Tumor anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Desmoid Tumor. You're not alone. 108 People

    I Got One Too

    Hi all been battling this thing for many years, I started a public awareness page on face book simply called Desmoid what is it ? this group is open and has ties to private groups if you so wish to vent to others suffering without the world seeing your private issues
    lenny1065 lenny1065
    51-55, M
    Sep 30, 2013

    Just Was Diagnosed Today!

    Rec'd the news that the mass in my left rectus abd wall is in fact a desmoid. Still reeling from the news and any advice is greatly appreciated.
    DaniinPA DaniinPA
    5 Responses May 7, 2013

    I just got diagnosed with a desmoid tumor in my

    left rectus muscle in my abdomen. I have no idea what to expect. I guess I'm look at other people stories to help me deal with what about to go through.
    dracofly83 dracofly83
    31-35, F
    Oct 12, 2014

    My daughter has a desmoid tumor

    that is slowly taking her life,we were told mid April there was nothing more could be done,but I tried anyways and it was too late,its so frustrating and sickening to see her suffer and question and cry and ask me to help her when I can do nothing,it has been hell for us and Id...
    Paige7604 Paige7604
    51-55, F
    Dec 6, 2015

    My Chest Wall Desmoid & Pregnancy

    My desmoid was discovered in 2008 when I noticed a lump in my neck . After scans and biopsies I was told it was a desmoid tumour and it needed to be removed as it was 13cm long stretching from the base of my neck to the top of my lungs. It was a long surgery and I ended up having...
    Kisherwood Kisherwood
    36-40, F
    Jul 17, 2013

    Desmoid Tumor

    Hi i'm jen from Cleveland OH, I am treated the Cleveland Clinic Taussig Cancer Center. I am 20 years old and its been 7 years dealing with Desmoid tumors. My first tumor I was in 8th grade and grew right on my left hip. The pain was unbearable. I would hit it on every door knob...
    jmbosk16 jmbosk16
    18-21, F
    1 Response Mar 12, 2012

    I was diagnosed with FAP in 1997

    and diagnosed with 2 intra-abdominal desmoids in 2001. After 4 surgeries, 1 was surgically removed because it killed it's own blood supply and became gangrenous and ruptured my small intestine. It nearly killed me. The other one is just being monitored. I see a surgeon in...
    mandystone mandystone
    36-40, F
    2 Responses Mar 10, 2014

    I was just diagnosed with a desmoid tumor in my

    pelvis. It took me a journey through orthopedists to get to this diagnosis and am waiting to hear from the oncologist's office as to when I will be seen there. I am learning that is a lot of what medicine is about, lol tests and waiting. I'm scared, frustrated, in pain and...
    DaisyMe1975 DaisyMe1975
    41-45, F
    2 Responses Jul 15, 2014

    My Story I was recently diagnosed with desmoid

    tumor this past summer in the abdomen. I was reading through posts of other people who also had this tumor as I'm aware this tumor is very rare. I first noticed the lump and the pain followed after. The pain comes & goes. My first thought was to get rid of this tumor, but the...
    Laydeel Laydeel
    26-30, F
    2 Responses Dec 16, 2013

    Right Mesenteric Quadrant (abdominal)- Desmoid Tumor

    My name is Tammy and my story basically starts in 2009 when I was diagnosed with diverticulitis. It would not heal and therefore 12 inches of my colon was removed. Then I got a hernia from that surgery and it had to be repaired. Starting in February 2011, I started feeling a...
    ttellis1 ttellis1
    Aug 9, 2012

    Hello, My Name is Jennifer Buckle; I am a

    French 24 year old student with a Desmoid Tumour in my right leg since 2011. I am writing to you today because I have decided to dedicate my masters’ subject (in visual arts) to Desmoid Tumours and the mental impact the pain has on patients. My project is to show, through...
    jenniferbuckle jenniferbuckle
    26-30, F
    Nov 13, 2014

    Desmoid And Chemo

    Where to start? I was diagnoised with the desmoid tumor when I was 24 back in 2007. I felt a small lump in my arm at the end of 2006 and went to 3 doctors who all said it was fatty tissue. Frustrated, I finally told my family doctor I wanted it removed. He sent me to a plastic...
    nszostek nszostek
    1 Response May 28, 2010

    Desmoid Tumor in Hip

    I recently (December 2010) underwent surgery for 10cm desmoid tumor removal of the left hip. Three portions (most of my gluteius maximus, medius and tensor fascial lata) were removed. I was not aware of other alternatives. thankfully MRIs have confimed no reoccurence. l`ve...
    twilso32 twilso32
    31-35, F
    2 Responses Aug 14, 2013

    UK Patient With Recurring Fibromatosis Tumors

    Easter 2011 was told had a large solid mass in right side. Four worrying weeks of mostly waiting various scans and biopsy resulted in diagnosis of a fibromatosis of approx 10x 12x 15cm. It was excised in July and weighed an impressive kilo and looked rather like a roast beef...
    Millsi Millsi
    Mar 24, 2013

    Two Desmoid Tumors And Counting.......

    I was 25 when I had my first Desmoid Tumor removed. It was in my upper right thigh. The dr told me about an 1" scar, I woke up with a 14" scar. He told me I would be fine after I healed. I have had nothing but pain since. I told him before the first surgery my hip hurt all the...
    talisaburnett talisaburnett
    26-30, F
    8 Responses Sep 17, 2010

    Chemo Pain Overtime

    After going for allot of chemo round my body start to fill like it giving up My body fill cram with allot of pain even went I'm not moving allot , mostly around shoulder and back. My last chemo was 2009 but this is the first time the side effect last this long So tell me guys...
    Djnen Djnen
    31-35, M
    Oct 5, 2013

    Newly Diagnosed With Chest Fibromatosis/ Desmoid Tumour

    Firstly thank you all for sharing. Not surprisingly, it's tough finding people with Desmoids. I was diagnosed with fibromatosis, last Thursday (Sept 22nd, 2011), and still trying to get my head around the diagnosis. My tumour, I have called Daisy, is in my pectoral minor muscle...
    colourfultraveller colourfultraveller
    46-50, F
    4 Responses Sep 29, 2011

    My Long Battle With Desmoid Tumor

    nine years. nine long years. I've been living with my desmoid tumor for nine years. It has been a struggle every single day. I am overall a very positive person with an immense love for life. However, my optimistic personality is slowly fading away because I am tired. I am tired...
    krystleberrigan krystleberrigan
    3 Responses Oct 26, 2011

    Recently Diagnosed With A Desmoid Tumor

    Two weeks ago, I was diagnosed with a Desmoid Tumor in my right inguinal area. Two years ago, I noticed a dime sized bump in my groin;I thought that it was a hair bump, but, after trying everything to get rid of it - I forgot about it. Soon, I began to get fevers, longer sick...
    neenameena1 neenameena1
    Sep 9, 2013

    I'M 27 And Have Desmoid Tumors In My Left Calf

    Hi I'm meghan I'm 27 I was diagnosed with desmoid tumors in my lower left calf when I was 25. I've done so much research and I've tried 3 different drugs. I started with surgery and dr. Removed to tumor wrong. It spread through calf and caused 4 tumors to grow back in the matter...
    Meg23DTfight Meg23DTfight
    26-30, F
    1 Response Feb 17, 2013


    I have recently been diagnosed with a desmoid tumor in my abdominal muscle. I am seeing my local hospital's sarcoma specialist next week, and surgery is scheduled for the end of the month. In May or June 2013, I felt a small lump in my abdomen, just under my left ribs. I didn...
    smw72 smw72
    36-40, F
    3 Responses Oct 12, 2013

    My Struggles With A Desmoid Tumor

    The year 2005 was when it all started. I was in 5th grade playing basketball, and whenever someone bumped into my arm, it caused severe pain. People rarely ever listened to me; they all thought I was faking it. I had been dealing with this intense pain for two years. I wish I...
    conroc conroc
    18-21, F
    4 Responses Dec 8, 2012

    Hello everyone, I recently found out

    that my son who is 11 has a Desmoid Tumor. My heart is shattered. I'm scared to death. I just wish is was me instead of him. How do yall get through it everyday? What can I do to help him..I'm not familiar with this and his doctor said they removed it from surgery last week...
    SabrinaandXavier SabrinaandXavier
    31-35, F
    2 Responses Jun 30, 2015

    My beautiful son who is 14 was just dingoes

    with Desmoid tumor's in his right lower leg
    scarriemom scarriemom
    41-45, F
    1 Response Mar 17, 2014

    Desmoid Tumor Since 13 Yrs Old

    WOW!! I had no idea they actually had a site about the rare tumor that has completely destroyed my life since I was 13. Now I will say after 4 surgeries...(2 being extremely major) I have had a great attitude towards it all until recently where I decided the best thing to do was...
    deleted deleted
    4 Responses May 31, 2012

    I was diagnosed in may withvan abdominal

    desmoid, likely caused by previous surgery in pregnancy. The surgery was successful but I did get a really bad infection 4 weeks post op. I am doing ok but do have bouts of really struggling with my moods. I have noticed in the last couple of days thats my stomach muscles are...
    darlomummy darlomummy
    36-40, F
    Oct 13, 2015

    Due To Non Experience I Lost My Husband

    My Husbands Dr. didn't Know what the to diagnose him with and he found out way to late t to save his life. he got so bad he had a football size tumor in his stomach and went to the emergency room to finally be diagnosed. he went home to decide his 50% chance to live. the...
    dyza10 dyza10
    66-70, F
    2 Responses Sep 2, 2013

    I Have Desmoid Tumors

    hi i am a 45 year old woman when i was 32 i was diagnosed with a desmoid tumor of the right deltoid muscle i had surgery followed by a big dose of radiation  and then tamoxifen for 5 years. my doctor said if it stayed gone for 5 years i never had to worry about it again...
    kitkat9162 kitkat9162
    Jun 20, 2009

    Desmoid Tumor And I

    Hi, I'm pleased to be here to share with you my story, I come from China, Search find a doctor information found in this site, my story begins in 2004 talking about, when I was 14 years old, accidents are traumatic start lameto walk, his family showed me a lot of hospitals all...
    Cherry132 Cherry132
    Mar 22, 2013

    My Desmoid Tumors Have Gone Out Of Remission After 8 Years...

    Alright....after being in remission for an extremely long time (over 8 years) I found out last Monday that they are growing again! Currently the one by my left ovary has doubled in size..not sure about the others yet...I am very very scared! The one they radiated on that sits...
    deleted deleted
    1 Response Apr 15, 2013

    I was diagnosed with a desmoid tumor about 2

    years ago. I found a lump above my breast and drs said it was a hematoma. I went in for surgery to remove it but when drs opened me up it wasn't draining. They took a biopsy of it since I was already opened and it came out to be a desmoid tumor. So far I have undergone 14...
    Mauidoodle Mauidoodle
    36-40, F
    1 Response Apr 25, 2014

    Found Out 4 Days Ago

    I've had this huge tumor on the back of my neck since 2010.thank god for long hair! I was out of work due to a car accident in2009 which caused me to have 8 screws and 2 rods put in my neck. Well I finally landed a job and received insurance. The part of tumor was removed 3...
    Michibell Michibell
    41-45, F
    2 Responses Aug 24, 2013

    Retropectoral Desmoid Tumor

    I have a retropectoral desmoid tumor. It is interposed between the pectoralis major and minor muscles. The tumor follows the medial-lateral plane between the muscles and reaches toward midline. In May/2008 - Dec/2008 I had seven cycles Chemotherapy (doxorubicin/DTIC). But since...
    queendd1980 queendd1980
    1 Response Jul 3, 2010

    My son who is 13 years old has been dealing

    with this since he was 9 or 10 years old. We have tried radiation, 4 different chemos, 2 different types of pill form medicine, and he has had a long road with this when we thought everything could be going well he started complaining of numbness in his arm got another MRI and...
    wannie2428 wannie2428
    36-40, F
    2 Responses Jan 15, 2014

    Week 2 After Surgery To Remove Desmoid

    Friday the 13th, I had a huge Desmoid Tumor removed from my groin area under local anesthetic. It was a terrible experience. To add insult to injury, my disability hasn't come through and I'm hurting for money. My roommate had to pawn her mother's wedding ring to pay the rent...
    neenameena1 neenameena1
    Sep 29, 2013

    December 2012 Was Diagnosed With A Desmoid In The Mediasternal Line.

    I was due to go in for a pre op. on the 20/5/2013 but on the night of the 19th I ended up in hospital with an appendisitis. Operation for desmoid persponed. I now think that the desmoid was buying more time and it was my body's way of saying you need to investigate more. My...
    Bertiez8 Bertiez8
    2 Responses May 24, 2013

    The last 2 weeks of my life have been the most

    stressful i have dealt with. I'm a happy, positive 24 year old with a beautiful family. Last Monday I woke to major abdominal pains and shrugged it off to the weekend of a few beers, so i slept on it. Little did i know, going to the doctors the next day, i was sent straight to...
    Hayley1990 Hayley1990
    26-30, F
    Oct 25, 2014

    Does anyone have helpful tips to help with

    Desmoid tumor? Foods, medicines, therapy, surguries... I'd like to hear of things that have had a positive effect on your tumor. Thank-you!!
    moi26 moi26
    41-45, F
    1 Response Feb 22, 2015

    My Desmoid Tumor Story

    About a year and a half ago I discovered a lump in my breast. I went to the doctor and the confirmed there was something there. The day before my 31st birthday I had my very first mammogram. After multiple tests I underwent surgery to remove the lump. I was later diagnosed with...
    KatyElizabeth81 KatyElizabeth81
    36-40, F
    2 Responses Oct 3, 2013

    Inoperable Desmoid Tumor

    Hi, I'm 30 year-old woman. My tumor was diagnosed 5 years ago.They couldn't remove it  from my stomach in surgery. Since then I've taken Tamofen. It has helped and all the symptoms (throwing up and such) have almost vanished and the tumor is getting smaller, slowly but...
    masu79 masu79
    3 Responses Aug 27, 2009

    In Short ... I Feel Like Crying

    I believe I have a desmoid tumor on my left rib. I was diagnosed while pregnant with my 3rd. It started small but now it's about 11 cm and I'm small and petite :(. Just wondering if anyone has tries pdt or cryoabalation or proton therapy ... Or anything aside from surgery. I'm...
    alternativehealth alternativehealth
    31-35, F
    1 Response Oct 14, 2013

    Desmoids Stink!

    Hi.  My name is Tiffany, and I have Gardner's Syndrome, (FAP with desmoids, osteomas, and lipomas).  I had a complete colectomy, with ilial anal pull-through / j-pouch creation in 1991.  This surgery produced a desmoid on my abdominal wall in 1993, and I had it...
    tntpower42 tntpower42
    31-35, F
    2 Responses Dec 19, 2009

    Desmoid Tumor On Brachial Plaxis

    I am 26 and in May of this year I found a tumor in my neck. It was diagnosed as a desmoid tumor and within a matter of weeks it was surgically removed. However, because of where it is located the doctors were unable to get clean margins, therefore, it is likely to return. The...
    hfalks hfalks
    6 Responses Aug 9, 2011
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