Demi’s Sarcoma Story: Soft Tissue Sarcoma, Desmoid Tumor, AYA Cancer
Demi shares her desmoid tumor soft tissue sarcoma story which began with a diagnosis at just 19 years old. She details undergoing surgery, radiation, chemotherapy, both IV and oral.
In her story, Demi highlights how she managed being an AYA (adolescent young adult) cancer patient, dealing with hair loss, and the support that helped her the most. Thanks for sharing your story, Demi!
- Surgery & Radiation
I wish I had someone back then who would’ve told me, ‘This is gonna suck.’
Everyone gave me a sugar coated version. When I used to talk to my cancer friends, I would say, ‘This is going to suck so bad, but it’s okay. It’s only temporary.Demi D.
What were the first symptoms
The first time I was diagnosed, I was 19. I was living off at college in Louisiana. It was the first time I had ever moved off. I lived at home my freshman year, and I moved away for sophomore year.
I was working out, going to school, and just pushing it pretty hard. I was so incredibly tired all the time. I would come home and sleep so much. I thought I was just doing too much.
I got a personal trainer and was really in tune with my body for the first time ever. One day, I was looking in the mirror, and I noticed this knot in my right hip.
I didn’t tell anyone for a while. I had taken preventative shots for HPV, so I thought it may have just been that.
The bump was still there after a while, and I told my friend who was visiting. My friend worked for my dad, who is a physician.
She said, “If you don’t tell your parents about this, I’m going to tell your dad at work.” So, when I went home for Christmas, I told my dad.
He felt it. He had no idea what it was. I went to see a general surgeon the next day. This was before Christmas.
Ultrasound and biopsy
They did an ultrasound that day. I went back to Louisiana afterwards because I had to work, and I was planning on coming home before Christmas.
My parents showed up at my work and said they were taking me to MD Anderson the next day and that they wanted to go to dinner.
I said, “No, why don’t we go back to my apartment and y’all tell me what’s going on.” I had my needle biopsy at MD Anderson, and I got the results after Christmas.
How did you get diagnosed
I waited for what felt like forever to get my results back. I felt like I waited an eternity. We went back up there. The doctors were so calm and positive.
They made me feel like it wasn’t going to be a big deal. I was just going to have this surgery and if they didn’t get clear margins, I would just have a little radiation, no big deal. Everything was going to be fine.
They gave me the diagnosis and treatment plan at the same time. They told me my odds of having to do radiation weren’t that high.
When I wound up having to have radiation, I was disappointed, but I didn’t get scared. My doctors made me feel so comfortable.
Surgery & Radiation
Describe the surgery
I was diagnosed on December 28th, and I had my surgery on the 1st or 2nd of January. It was all so fast.
I don’t remember much of the prep for surgery because it was years ago, but I remember life after surgery really well. I was so nervous before surgery.
My surgeon was so nice. He asked me to wear panties that I would be okay with him cutting off but that covered the same area as a bikini would. He knew I was concerned about scarring and being comfortable in a swimsuit, so he did a great job.
I was so nervous about how my body was going to look after surgery. I was so young. I didn’t know what was going to happen. I felt like I was just going through the motions. I didn’t deal with my emotions until way later.
After surgery, I had drains in me. They actually let my dad remove my drains since he was a physician instead of having to drive all the way back to Houston for that.
The drains were so uncomfortable because they were in my right hip. I couldn’t wear pants hardly because it was just so uncomfortable. I couldn’t sit down easily. Every time I got up, I felt like my incision was going to come open.
Describe the radiation
They got everything out in surgery, but they didn’t get clear margins, so that’s when I did radiation. I started that about a month after surgery.
I had to be in Houston for that. I came to live in a fully furnished apartment provided by the Sarcoma Foundation. My mom and I stayed there for six weeks.
Radiation made me so tired. Every single day afterwards, I would just go home and sleep. My skin also burned. It turned black and was raw for a while.
They gave me prescription cream for that, and that took care of it. I can barely tell now that I had radiation. ”
During the actual radiation, they would let me pick what music I wanted to listen to. I just used it as my time to meditate and unwind. I prayed and reflected a lot during radiation.
When did the cancer come back
Everything was good. I went back for a three-month check up. Everything was great. I was clear. I was on these three-month check ups for a while. I was back in college in my hometown.
A year after I had finished my radiation, my cancer came back in the same spot. This time, radiation and surgery were not options. I couldn’t have any more radiation in that spot.
They couldn’t remove anything else in that spot surgically because of the potential for muscle loss.
They decided to put me on Tamoxifen, which is used for breast cancer. I did that for a month or two. It didn’t do anything whatsoever.
Describe the IV chemo regimen
They put me on Adriamycin and Dacarbazine, which are two IV chemos. I had nine rounds of that. I couldn’t tolerate both of them, though, so we stopped Dacarbazine after three rounds. It was a 21-day cycle.
I would get it on day 1, and on day 21, I was supposed to go back and get another infusion, but it was never only three weeks. My counts were just never ready.
I did the IV chemo for almost a year. Everything was good. I was continuing scans throughout the entire process.
The cancer wasn’t shrinking, but it was losing circulation. The cancer was dying. We were having pretty good results, but I reached my limits on Adriamycin.
Switch to oral chemo
A few months later, I was doing a three-month check up. I started oral chemo, and I’ve been on that since October 2013. I take it twice a day every day. This has been the best thing that’s ever happened to me.
My cancer never shrunk when I did the IV chemo. Now, it’s shrinking or going down every time I go in.
Any side effects from the oral chemo
I get some weird bone and joint pain sometimes. It’s hard to explain. I feel like I have arthritis one day, but then it’s fine the next. They get inflamed, but then they go down.
Other than that and fatigue, there’s nothing bad about this one. I would take this over IV chemo any day. Now I’m at six-month check ups.
Can you talk about hair loss
I cut my hair to a bob before I started chemo. My mom talked me into it.
She didn’t want it to be as hard when it all fell out. It didn’t really bother me because I’d had short hair before.
I remember when it would start falling out. Every time I would get out of bed, there was hair on my pillow.
We went down to the barber shop in the hospital. I was just ready to shave it off. I think it was freaking my mom out too.
Is there anything you wish you would’ve known before treatment
I wish I had someone back then who would’ve told me, “This is gonna suck.”
I went through this, and I have great cancer friends now. I went through this before I met them though, and no one was really real with me about it.
Everyone gave me a sugar coated version. When I used to talk to my cancer friends, I would say, ‘This is going to suck so bad, but it’s okay. It’s only temporary.’
Dealing with being a young adult with cancer
I remember being 22 and seeing all my friends at the beach or at college, and here I was. I was just the sick girl. I got very angry. I just wanted to know when it was going to end for me and when I was going to be able to live my life again.
I’m not angry anymore, but I also never talk about it. It’s almost like this part of my life never happened.
Can you talk about your support system
It’s so important. The people I have surrounded myself with have always remained constant. They all know me. They know what I need and what I need to do. They hold me accountable and support me.
My boyfriend is very on top of it. He makes sure I take my medicine and vitamins and stay healthy.
They love me and hold me accountable. I can hold myself accountable, but it’s nice to have other people there to do it, too.
People offering their time to me was so important to me. A phone call, a text, or a visit meant so much. You don’t have to bring anything, but just come hang out. That meant so much to me.
Message for someone going through their own diagnosis
I wish someone had told me this isn’t going to be easy. So, this is not going to be easy. If you fight hard and take one step at a time, you will get through this.
I learned so much about my health through this. Learn and do what you’re supposed to do. Trust your doctors.
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Desmoid Tumor Stories
Alicia B., Desmoid Tumor, Stage 4
Cancer details: Rare, <3% of all soft tissue tumors, more common in women
1st Symptoms: lump found in right armpit
Treatment: Chemo, radiation, targeted therapy, clinical trials, surgery, including forequarter amputation