Alex Powell

I am a senior on the University of Dayton Women’s Soccer Team. Four years ago, during my senior year of high school, I was diagnosed with an Aggressive Fibromitosis, aka a Desmoid tumor, in my right shoulder/chest wall. Finding my tumor was a complete accident. I had been having pain in my shoulder anytime I ran or moved my arm in a certain way, so I went to see my orthopedic doctor. Thinking I had torn my labrum, he had me get an MRI to be sure. We were all pretty shocked when I went back for my results and the MRI showed a softball sized mass in my shoulder. The next three days felt like a complete whirlwind. I met with a surgical oncologist the next morning and had a biopsy scheduled in same day surgery right after. Honestly, I had no idea what was going on at this time. I’m not sure why, but mass and tumor were not the same thing to me. In my mind, a tumor was cancerous and malignant, but a mass was benign and harmless. So when the surgeon doing the biopsy came in and explained how they were looking for cancer, I was so scared. The mass in my shoulder ended up being a Desmoid. These tumors are really rare. Only about two in a million people have one, and only a small portion of them are found in shoulders/chest walls. As a type of soft-tissue sarcoma, institutions and physicians aren’t completely sure how to classify these tumors. Most oncologists and researchers consider them to be non-cancerous, I consider them to be non-cancers as well. However, the American Cancer Society and other organizations classify all types of sarcomas as cancer. As an orphan disease, there is little to no research about Desmoid tumors. There is no cure, which means there are various types of treatments, many of which have no impact on many people with Desmoid tumors. 

In the past four years, I have had nine surgeries on my shoulder and 34 months of chemotherapy treatments. My first surgery was my only tumor removal. The first time I met my Oncologist, we went over different treatment options I had, including surgery, oral chemotherapy, IV chemotherapy, HIFU, hormone treatments, radiation, and many more. At the time though, it didn’t seem right to run poison through my relatively healthy body. The tumor just did not feel like that big of a deal to my family and I, we truly did not understand what was happening. A lot of that was probably shock, but we would NEVER have guessed what would happen over the next few years. We chose to do surgery, even though there was a 40-60% recurrence rate. Three months after the surgery, on my signing day, my oncologist called my mom to tell her my tumor had grown back to the size of a softball again. This is when I started chemotherapy. My next surgery was in May of 2016, right before my senior prom. My orthopedic doctor had been right about me having a labrum tear, so in hopes of decreasing some pain, they went in at this point and fixed it. In November of my freshmen year of college, I had my first scar tissue removal surgery to increase my range of motion. However, the chemo I was on at that point made my bones weaker and so during the surgery, my surgeon accidently broke my elbow. My UCL ligament (widely known for Tommy John surgery) had pulled a piece of bone off, called an evulsion fracture. I was put in an elbow brace and was not able to move my elbow for three months. However, because of the chemo I was on, my elbow was not able to heal and so after nearly six months of pain and very little progress, another MRI showed that my elbow was exactly the same as when it had been broken. No needless to say, the first scar tissue removal was kind of a bust. I ended up having three more scar tissue removal surgeries in hopes of “loosening” it up. The last major procedure I had, with a couple other surgeries scattered in-between, was a subscapularis lengthening procedure. I had lost a lot of my range of motion, but my external rotation was extremely limited. In doing this procedure, it opened up my external rotation enough so I could run normal and have a more normal functioning arm. All of these surgeries created so much scar tissue and pain and we were trying to fix a shoulder that had so many things wrong with it that one surgery led to another issue. 

My journey through chemotherapy started in the spring of my senior year of high school, about seven months after we first found the tumor. I started a targeted therapy typically used for breast cancer, in hopes of shrinking my tumor. After six months and no tumor regression however, the only viable option left was chemotherapy. Two days before I left for my freshman preseason, I started Pazopanib, a target chemotherapy. Pazopanib is an oral chemo medication, with some pretty harsh side effects. It makes all of the hair on my body turn white, almost clear really, and takes all of the pigment out of my skin. I literally get as white as a piece of paper and I have to dye my hair, my eyebrows, and my eyelashes every two weeks if I don’t want the white show. It also makes me extremely sensitive to the sun and I mean 

e x t r e m e l y sensitive. I get sunburned after five minutes outside and one time I got third degree “sun poisoning” burns on my lip in February (remember I go to school in Ohio, with some pretty rough winters). It makes my thyroid stop working and gives me extreme nausea, vomiting, and fatigue. The more “dangerous” side effects of this drug include increased healing time and bleeding, meaning if I was hit with a ball or something there is a higher chance of internal bleeding. These aren’t even all the side effects. After nine months of Pazopanib, my tumor had shrunk down to the size of a penny, almost 98% regression, so I was able to stop the chemo. However, about five months later I needed another surgery and my tumor had grown again, so I had to start the Pazopanib back up for three months. After this surgery, my oncologist put me on a drug called Hydroxyurea in hopes of keeping my tumor stable and it did just that! The Hydroxyurea kept my tumor stable for the most part, except it caused my white blood cell count to drop and when they happened I had to stop taking it for a couple weeks. This was happening fairly often and in that time, my tumor was able to grow, so this past spring, of 2019, I had to start the Pazopanib back up again. This was my third round of this awful drug, so I thought I knew what to expect and I was ready. I was so wrong. This round with Pazopanib was the complete opposite of the last two. Almost every side effect I had was either amplified or different than before. The biggest change however was the mental impact. The first two times I was on Pazopanib it impacted my mentally, giving me chemo-brain, sadness, frustration, and every other feeling that comes with this journey. This time however, the sadness and lack of motivation and incapacitating. I was diagnosed with depression and after only two months of the chemo, which means I had to stop taking it. I was placed back on the hydroxyurea and my oncologist said we would reassess in a couple months. 

I experience every possible side effect there is from every medication there is. Which then means I have to take more medications to ease the side effects of medications I am already taking to help side effects … if that makes sense. At any point in time I take anywhere from five to fifteen different prescriptions daily. Which then means I am taking more than thirty pills because many require multiple doses. This does not even include my vitamins and supplements. I take 12 different supplements to combat the various negative effects of the prescriptions and drugs.

I have tried everything to help with pain and range of motion. Dry needling, massage, cupping, ultrasound, laser, red-light therapy, cryotherapy, salt baths, Epsom salts, creams, rubs, pills, oils, and so so so so so so many more things. The weirdest things happen to me with all of these though, like one time our athletic trainer was cupping my back muscles and it tore my lat muscle!!!! How does that even happen??!!? Hahahaha, so crazy things happen to me. The most beneficial, helpful, and incredible treatment I have tried is neuromuscular massage therapy. It has given me more range of motion and pain relief than anything I have done. I would recommend it to anyone. It’s expensive, but I go once a week for an hour and it is incredible. I have been on opioid pain killers for almost four years, taking oxycodone, hydrocodone, percaset, tramadol, and methadone daily. (not all at the same time hahahhah different ones at different times) This massage though has helped me decrease my use of pain killers tremendously. 

This journey has been extremely difficult, challenging, and exhausting. It is hard enough to be a student-athlete all on its own, but adding a Desmoid tumor and chemotherapy treatments on top of it makes it so much harder. I am extremely thankful for my teammates and coaches for always making me feel like an important part of the team, even though I have not had much of an impact on the field at all. The support and love I have received from everyone at the University, from athletics to professors has been incredible and I am so grateful for this community. 

Go Flyers!

Click here to check out The Rare Disease Family Foundation, which was founded by Alex and her Mom.