PATIENT STORY: Brianne Simpson

Brianne Simpson

Another addition to our series of interviews with those affected by sarcoma. You can read all of the stories here.

I remember my first introduction to Brianne. It was a picture of her leg. Nice to meet you, Brianne.  (She'd included the picture of her leg with one of her very first Facebook posts.)

That was months ago and I've since learned that my first impressions were correct - she is strong, proud, and going places. I've also learned that there is so much more to Brianne. She cares deeply for others, she is open, she is vulnerable.

This is Brianne's story . . . 

How old are you?

I’m 19 and will be 20 in January.

Where do you live?

Ottawa, Illinois. I live at home with my mom, dad, little sister, and three dogs.

Tell us a little about yourself.

I’m not married and I don’t have kids – well, unless you count my puppy. I have three dogs, two boys and one girl. I love them to death!

I’m a full-time student at the local community college. I’m majoring in Early Childhood Education with Special Education and Clinical Psychology.

What is your sarcoma diagnosis?

Synovial sarcoma in my right knee.

In what year were you first diagnosed?

I was diagnosed on December 20, 2012.

Have you had surgery, chemotherapy, radiation treatments, something else?

I had surgery to remove my cancer and then I underwent 33 radiation treatments.

What is your prognosis?

It’s good. They were able to remove all visible signs of the cancer from my knee when I had surgery. The radiation I had after was to make sure everything bad stayed away. As for right now, I’m in remission, and I’m thankful for that every day.

"You can't give up hope when you're fighting against something like this."

What is your biggest piece of advice for someone who is newly diagnosed with sarcoma?

Wow . . . that’s a loaded question. I’d have to say the best pieces of advice I have is to always have faith. You can’t give up hope when you’re fighting against something like this.

There are going to be days when you feel miserable, but if you can keep your hope and faith, and put yourself into a good mood, it will make things easier and help you get through it.

And another thing . . . don’t be afraid to ask for help. The people who love you want to be there for you.

How are you feeling today?

I’m feeling pretty good today. I finished my treatments in April, and I’ve been recovering since then.

My leg has healed. The mental part of things is what I have the most trouble with lately. I’ve had a few scares while I’ve been in remission, but things have come out clear for me so far.

Tell us your diagnosis story.

My story started a few years before I found out about the cancer. I fell a few times between 2009-2012. I went to the doctor and they all told me I’d be fine. I used crutches and went to physical therapy like they told me, but my leg never got completely better.

So, finally, in 2012, my family and I started pushing the issue. We went to a knee specialist near our town and they told me I was fine and that things were in my head and told me to take ibuprofen. I did what they said for a while before going back and telling them it wasn’t any better.

They finally ordered an MRI and then things really took off.

I had 4-5 MRIs in a week and was then sent to an orthopedic oncologist specialist seventy-five miles away in Chicago. At that time, they still didn’t think I had cancer. I had a few appointments with the specialist and a biopsy was scheduled.  The biopsy was a failed attempt because even after they numbed my leg, I could feel everything they were doing.

The decision was made to remove the mass. I had surgery on December 20, 2012, and that was the day I found out I had cancer. My oncologist/surgeon came in and explained that it was a cancer called synovial sarcoma.

I don’t think I realized what that meant at the time. After the doctor left the room, I asked my mom, “Does that mean I have cancer?”

I remember looking around at the family that had come with me to the hospital – my mom, dad, and two of my aunts. I could tell they had all been crying, and that scared me because I’d rarely seen them cry.

I remember thinking that I didn’t want to lose my hair. And then I remember thinking that I didn’t want to die. I was too young and had too many plans.

I was scared. Terrified. But I tried not to let it show. I wanted to be strong for my family. I wanted to be strong for myself.

Brianne (R) with her younger sister
"We never talked about the worst-case thing that could happen with her around"

What about your sister?

She was 11 at the time of my diagnosis. It’s hard to tell what she really thought about it. I’m not sure she fully understood. We didn’t lie to her – my parents explained to her that I was sick and that it was serious. I think we all sheltered her from it as much as possible because it scared her. We never talked about the worst-case thing that could happen with her around.

She was always trying to help me when I couldn’t do something for myself. She’d make me laugh by doing something dorky.

I feel guilty because I was getting so much attention from everyone and she wasn’t getting as much as she used to. She’s the baby of the family.

She never once complained about the lack of attention. Not even when I had to miss her first basketball game for an appointment. She said it didn’t matter and there would be other games.

My sister is a trooper. She’s a good kid, and I love her so much. I never forget to hug and kiss her goodnight anymore.

"I had to face reality; I was a cancer patient."

Tell us about the radiation treatments.

Radiation is when things got real for me. Up until that point, I could pretend that I didn’t have cancer. After I started radiation treatments I had to face reality, I was a cancer patient.

I went to radiation five days a week for 6.5 weeks. My days got to be pretty routine: get up, head to radiation, go home, get ready and go to school, go to work, and then pass out from exhaustion. There were times that I couldn’t go to work and some days I would miss school and sleep all day.  Radiation sucked.

I met some amazing people at radiation. There was an older couple there every day at the same time I was there. They call me their adopted granddaughter now and I love them.

What side effects of treatment have you had?

I was exhausted. I hated to get out of bed most days, and I missed so much school. I was in my first year of college and I was lucky that my teachers were as understanding as they were.

My leg burned something fierce because of the radiation. The treatments split my freshly healed surgical scar open and burned the heck out of my leg. The pictures my mom took to document everything are gruesome.

"I fought for my life and won."

You have scars. Tell us your philosophy about them?

Ahh. My scars. I love my scar. It isn’t something I’m ashamed of. It’s big, and it’s ugly, yes. But it’s part of me and it tells a story.

I fought for my life and that scar is proof.

I don’t mind that people stare at it when I wear shorts. I like when people ask about it. I’d rather that they stare and then ask about it rather than stare and awkwardly look away when I catch them.

I get a lot of looks at school. I can feel when people’s eyes are on me, but I’ve gotten used to it and I’m not self-conscious of my scar like I thought I would be. It’s my battle wound.

I fought for my life and won. Why be ashamed of the evidence of that fight.

And what about your emotional scars? How are you doing?

The anxiety, depression, post-traumatic stress disorder (PTSD), that’s what’s been tricky for me. The PTSD isn’t something I’ve been diagnosed with. But to be honest, after cancer, I don’t think you need a psychologist to tell you that you have it. You just know you do.

I’ve considered seeing someone, but that kind of thing is expensive and I don’t have insurance. I’m don’t get nightmares, but I get the overwhelming emotions of fear and helplessness. It can get in the way of everyday things sometimes and it can change my attitude and point of view in a second.

It’s hard to deal with. But I have to. I won’t let it rule me.

I toughed it out by myself for awhile, but around the time of my scans, I get such bad anxiety, it’s not possible to hide. They know I get scared and stressed and anxious. I take anxiety medicine at night to help me sleep when I need it.

I think this kind of thing probably gets better with time. But for me, it’s all still fresh.

More recently, my other leg has begun to bother me, which causes all kinds of panic and anxiety. It’s hard to sort my emotions. I’m not sure how much of it is psychological.

Was (or is) your life on hold while you work through your illness?

My life was definitely on hold. But at the same time, I was always trying to push forward. I didn’t want my life to stop completely so I continued working throughout most of my treatments – only taking a leave of absence when I just couldn’t do it anymore.

I continued with school, too. Even though I missed a lot of classes, I pushed through and I’m proud of myself for that.

A lot of my emotional relationships went on hold, though. I was afraid to make new friends because quite a few of my old ones had stopped talking to me. They didn’t know what to do with me, or what to say, so they said nothing and disappeared.

It’s gotten easier to make friends. Though I still get that look when they find out I was sick.

What is the funniest/strangest question you’ve been asked about your illness?

People asked me a lot why I didn’t look sick. They assumed that because I hadn’t lost my hair, and because I looked healthy, that I wasn’t sick. They didn’t understand that just because I was trying to smile and be happy and positive, and because I looked healthy enough, that I was really sick and exhausted and had no energy for anything.

What is your hidden talent?

They call me the Child Whisperer. Haha. I’m really good with kids. I love working with them, and teaching them, and being around them. They’re so sweet and just perfect.

After we'd completed the interview, Brianne had an MRI to look at the trouble with her left leg. Here's what she told me. "The MRI results came back, and it isn't cancer. I have a torn meniscus in my other knee now . . . I'm just thankful it isn't something more serious."

Keep in mind that Brianne's story is just that - her personal story. Nothing here is meant to be medical advice (see your own doctor for that) and the attorneys like me to remind you that her views are not necessarily those of Sarcoma Alliance.  (Though we do believe in being thankful for good test results.)