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 could explain the type of pain I was in, whenever anyone hit in my arm, I would instantly start crying. I had never felt anything that hurt so badly in my life. My parents finally realized that there was a problem, so we went to see an arm specialist. I had an x-ray done on my arm and it didn’t show anything. The doctor noticed that my arm could not do certain motions, so he scheduled me for a MRI. About a week later, we got a call back from the doctor. I was to go see an oncologist at the University of Minnesota. We were sent to a cancer center, me being only 12 at the time, I had absolutely no idea what was going on. Sitting in a waiting room with people who had been through chemotherapy scared me beyond belief. When my mom and I met with the doctor, he came in with the MRI scan and said I had a tumor. He was unable to figure out if it was cancerous or not by the scan, supposedly he was usually able to tell, but I was told that he would be able to tell once he had a look for himself. The oncologist said I had to have a bone scan, a CT scan, and a PET scan before I had a biopsy. Once we left the doctors office, my mom was instantly in tears and I was in shock, I had no clue what was going to happen and why it had to be happening to me.

After the scans, I had a biopsy on my shoulder. It was only supposed to take an hour, but instead it took two and a half. Once the biopsy was done, the doctor met with my parents and told them he was still unable to tell if my tumor was malignant or a benign tumor. About a week later, we had a meeting with the oncologist again, and I was told that my tumor was a benign tumor. My tumor was in my rotator cuff connected to my subscpularis muscle and hitting all of my nerves. The doctor told me that if he were to try and take out the tumor, I would have an 80% chance of losing full movement in my arm. Otherwise, we would just watch it, and I would be in physical therapy to try and get full movement back in my rotator cuff. I decided to just keep a close eye on my arm and do physical therapy.

I then had a MRI every 3 months for a while, then every 6 months, and finally every year. I was in physical therapy for 5 years and the tumor had kept growing with me. It wasn’t until the end of 2011, when I was a senior in high school, when we went back to have a visit with the doctor and my symptoms had been getting worse. I told the oncologist that I was unable to sleep at night and I had lost significant movement in my arm. I am a runner and eventually I was unable to move my arm while running. So many things had been going on due to this tumor. I realized my tumor started off the size of a penny, and then grew to the size of a golf ball after five years. We then decided that it was necessary to get my tumor removed. An arm specialist was assigned to help reduce the chances of me losing full movement in my arm.

The surgery was four hours long and they removed 80% of my subscapularis muscle and transported one of my pectoral muscles into its place. After the surgery, they took a part of the tumor in for a biopsy, and I was diagnosed with a desmoid tumor. This type of tumor is a very rare type of tumor. The best way to describe it is, basically cancer within itself, it cannot spread to the rest of the body, but it grows at a rapid pace. I was sent into physical therapy right after the surgery. After about a month of physical therapy, I was tumor free, I had more movement in my arm than I had in over five years. Then, after about two more months of physical therapy, I felt my symptoms creep back in my shoulder, which scared me to death. I had a MRI three months after my surgery, and we found out my tumor had not only grown back, but it grew bigger than what it was before.

I was then sent in to meet with my doctor to find out the news. I was told I could just keep living the way I was and gradually lose more and more movement in my arm and lose full movement when the time comes, or I could seek treatment for it. I have always tried to keep a positive attitude about everything I’ve been through; but at this moment, I was not only scared, I was terrified. I met with an oncologist who treats people. I had many options to choose from, going from chemotherapy through the IV, to pills, to radiation, to many other things. I decided to try chemotherapy through the IV. I surgically got a port put in, and was told that I would be going to treatment for a year, once a week for six months, and then once every other week for six months. I was on two chemotherapy drugs, methotrexate and vinblastine.

I never knew how hard it would be to go through chemotherapy until I got a month into treatment. My senses have gotten worse, I got sick from certain smells, lost my appetite, was always tired, never felt good throughout the week, and in general I was getting sicker and sicker. I started throwing up through my treatments, and not just throwing up a couple of times, but every time I came in, I couldn’t stop puking and got very sick. The nurses there were fabulous, the nicest people you could ever meet, and same with all the doctors. They tried their best to prevent me from getting sick from the chemo. But I got sicker and sicker as the time passed. The last time I did IV chemo I was so sick I couldn’t walk, I was then admitted into the hospital to stay over night.

The next day, my parents and I sat down with the doctors to figure out a new plan because the side effects had gotten the worst of me. I decided to try a chemotherapy pill, which was called sorafenib. At the time, I was on over five different pills, including my chemotherapy pill. After about a week of using this chemo drug, I started get red splotches over my face, and I thought it was normal because I was told I could get rashes as a side effect. The next day, I got little bumps on my legs. Throughout the next couple of days, I had a rash practically covering my body. My feet became so swollen I was not able to walk on them, my hands were so swollen I couldn’t move them, and even my lips swelled up to about three times their normal size. I also started to lose my hair, which was one of the side effects of the drug, which was very difficult to see your own hair starting to fall out. Thankfully, I was home for the weekend from college, so nobody had to see me. I went into the doctor’s office about two days later, and they said it was one of the worst allergic reactions they have ever seen.

I got off of those pills immediately and waited about a week just to get everything out of my system. I started up on the next pill called Gleevec; I am currently on this drug as of right now. After about two months, my rashes from my allergic reaction had gone away. I had a MRI scan after the IV chemo and my tumor had not grown. Right now, I have no idea what will happen next. I’m on this chemotherapy pill and also pain pills because my pain has increased over the months. My movement in my arm has decreased to the point where I cant even put my hair up. The doctors don’t think this chemotherapy drug is working to kill off this tumor. The next move might be to try out radiation therapy, just to see if that will kill the tumor, otherwise I have absolutely no idea what’s next. Throughout this process, I have gone through over 16 MRI’s, a bone scan, CT scan, PET scan, over 15 chemotherapy treatments, numerous blood draws, two surgeries, and list goes on.

This whole experience has most definitely been the hardest thing I have gone through in my life and may be the hardest thing I will ever have to go through. It was amazing to see all the little kids who were going through chemotherapy always having a smile on their face, even though they have been through 10 times as many things I have been through. All I know is to always stay positive through everything I’m going through, and always have a positive mind. I hope one day, they find a cure for this type of cancerous tumor, so that nobody has to go through this. Everyday, I will keep fighting until they find a way to kill off this tumor. It’s amazing just to look back and see everything you have been through and notice how strong you were throughout the process. The best way to get through this is to always have a smile on your face, and to just know everything is going to be okay and work out for the best.
conroc conroc
18-21, F
4 Responses Dec 8, 2012

I am 54 and just found out from a old 2006 biopsy that I have Desmoid tumor so I am getting ready to go for my first appointment. Really kind of scared of what they may find.I've had tumors on my arms, legs, and ribcage that I can feel.And I know my thyroid is large enough that I can't breathe if my head isn't turned just right.

i stumbled upon your post and could not believe how similar our experience is to one other. we even think alike, write alike, and so on! you can read about my story at krystleberrigan.blogspot.com and im sure we both can agree it helps writing about it and sharing your journey. i'm currently finally tumor free after 11 years of battling desmoid tumors in my left leg after a car accident......

Sad wish there was a cure ur story is similar to mine I was little too with the doctor explaining the way to remove it but at the end they just won't remove it they are scare if it were remove it could grow much bigger mine is at the abdomens which is worse well good luck and fill happy till there is a cure

I had never heard of this till I read your story.I wish you all the best & hope everything works out for the best for you. Stay strong & please do keep smiling. Its contagious & may just make someones day. :-)