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Well mine first started about 11yrs ago. My dad was told he had colon cancer and so older brother(the middle one) decided to get a colonoscopy. He came back and told us that he had a rare disease called Familial Abdominal Polyposis (FAP) and so my oldest brother and I decided to get checked as well. Thank god my brother didn’t have it but I did. A few weeks later they removed my colon. Yup the whole thing and reconnected my small intestine to do what the large intestine did. All was fine or so I thought until October  20th of 2008 I was feeling off at work all day and after throwing up I decided to go home early thinking I was coming down w/the stomach flu. My 2nd daughter was 2 months old and sleeping in a crib in our room so I decided to sleep in the guest room so as not to get my wife and daughter sick. Then it hit me. I have never felt that much pain in my life. It was like getting stabbed w/hot knives in my stomach. I was rushed to hospital and after an emergency CT scan they saw something but kind of chalked it up to a lot of cancer. My now oncologist Dr. Dennis Casiato thought it might be desmoids but wasn’t sure. So he faxed the biopsy to a Dr. He knew in Milan Italy and when it came back a few days later he was right and it was desmoids mixed w/FAP it was called Gardner’s Syndrome. So from there I was again disconnected and in the hospital for 19 days and had a bag for 1yr. I was put on chemo which I did for 2yrs weekly, and a daily TPN medication for extra calories for a year as well. They put a Hickman port in my chest one entry for blood and chemo and the other for my medication that I had to do daily for 17hrs per day (FUN) Well the chemo and TPN did not like each other so I was in and out of the hospital in 2009 10 times for a week at a time for staff (sp) infections. After I was reconnected I no longer needed the TPN but was still doing chemo for another year . I would have PET scans every 3 months to see what the tumours were doing. Oh I almost forgot the tumours killed off my left kidney and started to do the same to the right side so I now have a stent to keep it open because the tumour started attacking that side as well. I’ll have it for the rest of my life and every 3 months I have to get it replaced. So back to the story. From the scans the tumours were shrinking thank god but not enough to stop the chemo so we pressed on. The chemo that I was on was Methotrax and Vinblastin (sp) and every scan I had the tumours were shrinking. Then my eyes were bugging me so I went to the eye Dr to have them checked and he told me that I have Cataracts. So I decided at 38yrs old that enough was enough. So I stopped doing chemo in January of this year. Since then I have had 2 PET scans and the tumours are still shrinking :o) Still doing the scans. Actually have another one in September to see what’s going on. So that’s it I think. Oh I forgot every time I had an infection they had to remove the Hickman out of my chest so I had 4 of those and 5 arm ports. Fun Fun Fun hahahahah. Thank you for reading my story it helps to talk about it to others. I hope this helps :o)


It was a week away from having my son in January 1997. I went for a scan and they found a lump and said it was attached to the baby’s head so I needed to go into hospital to be induced. My son was born and they discovered the lump wasn't attached to my son but to me. I was treated for fibroid and had injections every month for 6 months to reduce the size so they could remove it. After the 6 months I had a scan and it had not reduced in size so I was taken into hospital to have the operation. They removed it and then biopsied the lump and found out it was a Desmoid tumour. They said that should be the end to it but not for me, roughly 6 months later it came back and my consultant informed me he couldn't carry out another operation; he would need to put me in contact with someone in London. I was to see Prof Thomas at the Royal Marsden in London. I had my appointment and he said no problem he would remove it for me so the operation took place. Within a year the tumour had come back so it was another operation, this time they had to replace the lower part of the abdominal wall with mesh. So I thought right get over this operation and I will be ok! But no, it came back roughly 6 months later so another operation was carried out and reconstructed of the upper abdominal wall was replaced with mesh. I was going great having my check-ups every 6 months and nothing I was clear. Yes I was very happy, but then around 5 years ago I found a lump on the neck area so went for  a check-up, the Prof said there was no way it would go from your tummy area to your neck and he did a biopsy and the results were just what I didn't want to hear. Yes it was another tumour, so he removed it for me and I had to have another of my 3 monthly appointments and it was going good. Then a year went by and they found another lump so it was another operation for me. I was free from this until august last year when I had a lump which was from just below the jaw area and went across to the left hand side shoulder and a small golf ball size tumour by my spine. I had the operation last august and when I was being operated on there were 3 tumours; one each side of the neck and one on the spine. I had 2/3 of the plexus muscle removed and it took me till now to totally recover from it. I have been having 3 monthly checks and when I went in April for my check the prof said he was so happy with me he would see me in 6 months and I thought great, it looks like I could be getting somewhere, so I was over the moon . Then in July I wasn't feeling too well and I was in a lot of discomfort around the neck area and my arm. So I contacted the hospital to see if I could have an appointment to be checked out. Two weeks later I had my appointment only to discover it had come back, I was told that this is the last operation he can do for me and I have decided on radiotherapy after the surgery. I am totally gutted; they say this is benign tumour and not cancer but the amount of problems this causes to people! So it’s just fingers crossed for me that when the Prof removes them on the 30th august they don't come back. That is the basic story of the problems I have been through. I was checked for FAP/GARDENERS as well only to find out have that I have that as well, and for the last three years I have been having checks on that too. There are polyps in the colon and I need to have the colon removed but due to the surgery on my tummy with the mesh they are unable to operate so that's another problem for me to deal with. So all they can deal with at the moment is the FAP and the results show my two brothers have it but my sister has been very lucky she hasn't got the faulty gene. My two children as also been checked and they do not carry the faulty gene either so it was a great relief to hear that.


I vividly remember that sunny and brisk morning last November, standing out in front of the Art Museum, looking at my family gathered together as Team Horan for the 1st Annual Running for Answers Race. It was an emotional moment; a stark reminder of just how far I'd come. It had been almost a year since my most recent surgery to remove my desmoid tumors, and here I was, tumor free and ready to race.

I was first diagnosed with a desmoid tumor in my left chest wall in the Fall of 2005. I'd been in a very minor car accident returning home from graduate school, and a few days later I noticed a lemon-sized lump on my rib cage. After many appointments with various specialists, tests, and a biopsy, I finally had a diagnosis. But it left more questions than answers. I'd never heard of this tumor. Was it cancer? How do you treat it? Will it come back?

I ended up having major surgery in November of 2005 to have the tumor removed. Along with the tumor, four of my ribs, some muscle, and part of my diaphragm were removed as well. The tumor had come very close to my lungs. Surgery was a success-my margins were clear and the tumor was gone. Yet a year later the tumor had come back with a vengeance. I now had two tumors that were slowly growing and causing me an increasing amount of pain.

I spent the next few years monitoring the growth of my tumors with my oncologist, and trying to manage the near-constant pain. I was frustrated that I never felt fully healthy; I just wanted the pain to go away and I wanted to be normal like everyone else. I didn't want to feel embarrassed to wear a swimsuit where people could see my scars.

My second surgery was in November of 2009 at Memorial Sloan-Kettering in New York City. Once again, the surgery was a success and the margins were clear. The recovery period was nothing short of excruciating. More bone, muscle, and tissue were removed, along with my entire old scar, so my skin was stretched very tightly. I never would've gotten through any of this without the unwavering support of my husband, family, and friends. They have been there for me through all the physical and emotional ups and downs of fighting this disease, and they continue to support me every day.

I'm proud to say that I have been in remission since that second surgery. And I'm currently 7 ½ months pregnant with a baby girl! The pregnancy hasn't been easy-because of all the muscle loss, scar tissue, and reconstruction, it's been very painful for me. But every bit of pain is worth it. I feel so lucky to be healthy enough to be pregnant at all.

- Sue

I was diagnosed in May 2011 with a desmoid tumor on my brachial plexus at the age of 26.  For about six months before I found the tumor I had experienced pain an tenderness in my neck and right shoulder.  I assumed that is was due to stress; I was finishing law school and studying for the bar exam at that time so I really didnt think much of it.  Then the pain got worse, it would keep me up at night.  I had shooting pains down my arm all the way into my fingers.  The pain was so strong at times that it would cause me to catch my breath. One morning I was massaging the sore area and that is when I felt the lump, just above my collar bone on the right side of my neck.  I immediately called the Dr. and they rushed me in for an examination and MRI.  The MRI showed a solid tumor located on my brachial plexus.  I was set up for an emergency biopsy.  The biopsy showed that it was not malignant and the pathology report called it aggressive fibromatosis.  At that point my Dr. admitted he could do nothing for me because he did not know anything about these types of tumors.  I did my research and learned that it was best to try and find a Dr. that at least had sarcoma experience, so I went to IU Cancer Hospital here in Indianapolis where I met with an ENT Oncologist and a Nero-surgeon.  They wanted to remove the tumor immediately, the Dr. explained that he could not rule out cancer until he was able to get a larger portion of the tumor.  That was one of the scariest times in my life, I was in a lot of pain, I was scared and I had no idea what was happening to my body.  My tumor was surgically removed on June 6, 2011.  However, because of its location they were unable to remove the entire tumor, so there were remnants left behind.  After having my tumor removed I met with a radiation Dr. and a medical oncologist.  I personally made the decision to try drugs before doing the radiation.  I had an MRI done in August and showed that the tumor was back,  so I am currently taking sulindac which is an NSAID that has been shown to stop tumor growth in some people.  I have to have another MRI in November to determine if it is working.  If it has not worked then I will have to decide between radiation and anti-estrogen because the Dr.s have made it clear that I cannot have repeated surgeries because if I do I will begin to lose function in my right arm.  Unfortunately,  as I sit here the shooting pains have started again, although they are different than the shooting pains I had before I can't help but think that maybe the medicine isn't working so what am I going to do now.  This seems to be a constant concern for those of us who suffer with these tumors.  We are always wondering if and when the tumors will return but we just have to keep on moving forward and hope for the best.     

- Heather