Alicia’s Stage 4 Desmoid Tumor Soft Tissue Sarcoma Story

Alicia shares her stage 4 desmoid tumor sarcoma story, diagnosed when she was only 15 years old. She details undergoing extensive treatment, including surgery, radiation, chemotherapy, targeted therapy, clinical trials, and an amputation surgery.

In her story, Alicia also shares navigating how to ask for help during such a difficult time, the support that helped the most, and the transition to survivorship. Thanks for sharing your story, Alicia!

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

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You don’t have a choice when you get sick. Cancer doesn’t say, ‘Are you ready?’ It just happens.

The biggest decision you have is how you respond and what your attitude is going to be. You choose that every day.

I have tried to always remain positive, loving, and kind. It’s not always easy, especially when you’re in pain, but it will get you through.

Alicia B.

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Tumor growth

With this type of tumor, it doesn’t metastasize through your blood, so it doesn’t affect the rest of your body the way most cancers do, but since it’s in a connecting tissue, it can spread through different parts of your body that way. 

For example, my tumor started in my armpit. That’s when it was found in 2010. Six years later, when it was the largest it ever got, it was in my shoulder, arm, breast, neck, and chest, too. 

When it was first being treated, it wasn’t being treated like cancer. It was treated as a benign tumor. It shaped the way I was treated the first couple of years. 

Treatment

Treatment decisions

I had three different occurrences, or it helps to think of it that way anyway. The first time I found the tumor, the doctor just wanted to remove it surgically. They said they would take it out, and I should be good. 

I wasn’t seen by an oncologist at that time. My doctor was a surgical oncologist who dealt with sarcomas, but it was approached differently than a lot of other people’s cases. 

Describe the first surgery

That first surgery was definitely a big surgery. The amount of tumor they took out and the way they cut was a lot. That area lost function pretty much.

I never got full mobility back. That was the beginning of the area really starting to break down.”

I recovered from surgery, I thought it was gone, and I was living my teenage life when I noticed the bump coming back again.

Second occurrence

We did the same thing, except they did surgery and radiation. I was finally in a cancer center. I realized I was dealing with cancer then.

We dealt with it, and I thought it was gone by the time I ended high school. 

Third occurrence

That’s when I decided to pack up my things and move to Texas. I was a freshman at Texas A&M. When I was down there, I lived away from my family.

Luckily, my sister was there with me as a kinesiology major. It was during my first semester of school that I had the same sinking feeling, and I knew something was wrong in that area. 

Treatment for third occurrence

It was two years later when I found it the third time. That tumor ended up growing for four years. I went through a long laundry list of different treatments.

I did chemo, targeted therapy, clinical trials. Basically, I did every possible option except surgery. Surgery was the last option.

They were saying that if it came to surgery, it would be a massive one, so we were holding off. 

Reaction to the treatments

The tumor was about the size of a watermelon at this point, and none of the treatments or trials were really working. I didn’t have much mobility at all.

There was a lot of pain. I was on narcotics and had been since I was a teenager. My body reacts negatively to them. I tend to get really nauseous. 

The pain became unbearable, and that’s when a lot of mental health issues popped up. I didn’t even want to be alive because I was just in so much pain.

The last trial I was on was a drug therapy and chemo, and it destroyed me. I looked at my mom, and I said, ‘I can’t do this anymore. I need another option.’

Amputation Surgery

The decision to pursue surgery

That’s when I got in touch with my surgeon again. I liked her a lot. I told her, “We need to do something because nothing is working.” Surgery was the next best option. 

I remember at the first appointment, they said, “Surgery will include the removal of the tumor, your arm, your shoulder, six ribs, your breast, part of sternum, and part of your neck.”

It was very shocking to hear. I drove back to College Station and spilled everything to my best friends. I didn’t know what to do. 

It took months to make the decision. It wasn’t easy, and I didn’t decide it lightly. It took so much sitting and reflecting. Eventually, I came to the decision that surgery was my option.

I immediately knew it was going to be the hardest thing I’d ever done. Thankfully, I had an amazing team both medically and personally. 

Going into the surgery, I felt confident about my decision, it was still terrifying. I had no idea what was going to happen. I had been right-handed my whole life. The thing is, though, that arm was in a lot of pain and lacked almost all function anyway.

It wasn’t like I was losing a healthy arm. All I cared about was getting the tumor out of my body. All I could think about was waking up without it. 

Taking a break from school

One of the hardest things about it was taking a year off of school. Life was moving around me, but I was stuck. I wanted to do certain things, but I couldn’t.

That was the beginning of trying to face my abilities and learning what it means to feel capable. 

Mental and emotional recovery from surgery

I started healing, I became a real human again, and I started doing real, human things like the dishes and taking care of my cat.

That’s when the second wave of reality hit me. I realized how different my life was, but I knew I could rally again. 

I learned to accept that I was never going to be the same again. I had to work to accept a major change in myself, and it was a dramatic change.

Reflections

How has survivorship been?

It’s been years. I still feel like I’m healing and recovering, but at the same time, I surprisingly feel as healthy as I ever have. I practice yoga a lot these days, and I can bend in some fun ways.

I can do things that a lot of other people can’t do. I can put my leg above my head with no problem. Other people can’t do that. I’ve started to understand that everybody has different abilities. 

In some ways, we all have some disability. For some people, it might hardly exist, but everyone’s got something.

My disability is challenging but empowering. I’ve been inspired by some people, and I hope I can do that for others. 

I have a full-time job. I’m trying to just live my life. Every single day, I’m reminded of what my body has been through. It’s hard to think about that tumor and it being the reason I only have one arm, but that surgery saved my life.

This option, living one-handed, will always be better than being dead. I’d take that deal any day. I try to appreciate every day. That makes me a happy person and keeps me positive.

Cancer sucked, and it’s the worst thing that’s ever happened to me, but it taught me things that I would never have learned otherwise. 

Have you found it difficult to ask for help emotionally?

With fear, it’s hard because I dealt with a lot of it on my own because I knew it was going to affect the people around me, too.

I’ve spent my whole life just trying to find a balance of things I’ll carry alone and things I’ll let other people help me carry.

When you’re dealing with heavy stuff, you feel alone in it. When the emotion starts to weigh down on me, that’s when I have to open about it even if I don’t want to.

I know that sharing will help, and I know that people want to help. In some ways, I think I hurt people around me because I didn’t tell them things. It’s all a balance.

Finding support within the cancer community

Talking to the other young adult cancer survivor and meeting him was so helpful. He’s the one that told me to go to MD Anderson. I probably would’ve found them on my own, but the fact that a suggestion from him changed a lot of things for me is neat. 

With a lot of the young adult cancer survivors, I’ve gotten so much support and experienced so much connection. In my job, I see a lot of cancer survivors. Because of our common experience, we relate to each other.

That human connection is one of the most important things for me. Hearing somebody say, ‘I get that,’ is so impactful. 

»MORE: Join other patients and caregivers on The Patient Story Instagram

Advice for someone who has been diagnosed

When you’re dealing with something like this, it’s overwhelming. When I thought about the reality of my tumor, it was just too much because I was thinking about everything that had happened already and might happen. 

I have found the most peace in moments when I am present. If in the current moment, I can be happy, that’s what I hold on to.

I get stressed out about the future, and I’m usually prepared, but you can’t do that with cancer because there are a lot of unknowns. 

You can’t stress about the past or the future. You just need to focus on the present and be positive about what you have.

I could spend all day focusing on the things I can’t do and the things that frustrate me, or I would spend all day thinking about the things I can do and things that make me happy. 

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Desmoid Tumor Stories