RA and Comorbidities: A New Rare Diagnosis

In all of my 11 years writing for RheumatoidArthritis.net, I never imagined I would write an article like this one. It's a difficult story to tell — of receiving a sudden and shocking new medical diagnosis on top of already battling against RA and several comorbidities. But if I can help anyone not feel alone, or feel empowered by sharing my story, I'm more than happy to do it.

I noticed my right leg looked bigger

The night of September 19, 2024 was hot and humid, thanks to a stretch of muggy weather that had descended upon Minnesota. I lay on my bed that Thursday night, wearing a pair of baggy green shorts, literally trying to chill out and ease my throbbing joints. At one point, I glanced down at my right leg and an odd thought came into my head: Is my leg fatter?

I looked closer and poked with my fingers at the leg in question. It was then that I discovered a hard lump, almost perfectly hidden, nesting in my upper right thigh muscle. What was it? A biking injury? A hematoma? A golf ball? I would find out soon enough.

Becoming a member of the 'C-Club'

In the early morning of Monday, October 7, I got a phone call that I was dreading might come. It was the provider who had performed a biopsy of the mass that was found in my leg.

My heart sank, and tears began to prick my eyes as I took the call, because I knew what he was going to say: It's malignant. Cancerous. Cancer.

I couldn't believe it. I thought for sure the tumor was going to be benign. Instead, I became an immediate member of the 'C-Club,' with an official diagnosis of myxoid liposarcoma.

Liposarcoma with no apparent cause

According to Johns Hopkins Medicine, sarcomas are rare cancers that develop in the bones and soft tissues of the body — including in the fat, muscles, blood vessels, nerves, deep skin tissues and fibrous tissues. My liposarcoma (sarcoma that develops in fatty tissue) is a 9.6 cm ball of fat, mucous, and tissue wedged in my inner, upper right thigh.^1,2

There is no known cause for this type of cancer. I asked my doctor if years of taking biologic medications for RA could have resulted in the tumor. He kindly but sternly said, "No. There's nothing you did that caused this."¹

He was also impressed that I found it before it grew a lot bigger, because I had no pain or other symptoms and the lump was easily hidden. Liposarcomas can grow into huge, fatty tumors if they're not detected early.²

Knowing my body better because of RA

Why did I find the lump on a random Thursday in September? I don't know. Luck? Intuition? Maybe both.

I'm not sure what made me notice that something looked a little "off" about my leg that night. However, I do think that being familiar with my body is a result of years of living with RA and other chronic illnesses. I'm grateful for having RA and comorbidities if they have helped or protected me in some way.

It's crucial to become our own best advocates

Living with a chronic illness often teaches invaluable lessons and prepares you for all sorts of situations, many which require strong awareness and vigilance regarding what's going on with your own body.

The healthcare systems we get thrown into are also not easy to navigate. They're complicated, confusing, and stressful, and it's crucial to become your own best advocate and learn how to handle them. If I were going into my cancer diagnosis and treatments totally blind, with no patient skills, I know my health outcomes would not be as good.

My goal for 2025 is to become cancer-free

Speaking of outcomes, my goal for 2025 is to become and stay cancer-free, with radiation treatment and surgery alone — no chemo! I've already completed 18 rounds of radiation, and the mass in my thigh is considered low-grade, stage 2. I won't know until after surgery when the entire tumor is removed and biopsied if there are any high-grade cells present.

If high-grade cells do turn up, then I will likely begin chemotherapy treatment. Again, I hope and pray that everything remains low-grade with a low risk of recurrence, and that I can heal and move forward with my life after radiation and surgery.

Treatment and recovery is challenging

Moving forward with cancer, RA, and other chronic conditions is not easy, of course. And I must still be in a state of shock, because I have a very hard time processing that all of this has happened in just a few months. Most days feel like a dream, or nightmare, that I'm slogging through, just trying to do the next best thing. One scan at a time. One radiation zap at a time. One more phone call or MyChart message.

There's also the bonus challenge of not being able to take my RA medications during treatment and recovery, which is concerning. I've already had one significant flare-up in my hands that I managed to calm down without taking prednisone. But my doctors are all positive and optimistic, and I'm being cared for at arguably the best place in the world: the Mayo Clinic in Rochester, MN.

I was already a fighter and survivor

It's impossible to put into words what it's like being a cancer patient now, similar to how it's difficult to describe what it's like living with the daily pain of RA. I know my fight against myxoid liposarcoma is going to continue to be hard, but I've been a fighter and survivor for decades, battling against RA and so much else.

I will fight and I will survive. Thank you for being part of the next chapter of my journey.