Rare Cancer Thrivers: We May Be Few But We Are Mighty

“Sarcoma,” I repeated out loud to my surgeon after receiving my stage 3 diagnosis. “What is that?”

“Angry, aggressive, high-grade, and very rare,” he said back to me with compassion in his eyes.

I had a lot of questions. Without knowing where to go, I consulted “Doctor Google” and he has a LOT of differing answers - unsettling ones, at that. With mixed reviews and unstable answers there, I learned another difficult truth: A sarcoma specialist shared with me that there were less than 50 sarcoma oncologists in the country during the time of my diagnosis.

Being diagnosed with a rare cancer that less than 1% of people have, conflicting and confusing statistics online, and a limited number of oncologists to be seen by, I didn’t really know where to go, what to ask, or who could help me.

My surgeon recommended that I be seen at MD Anderson Cancer Center in Houston since they have a Sarcoma Department there. My husband and I were grateful for the guidance even though that was 1,000 miles away from our home in Colorado. We had the opportunity to move in with my parents that lived near the cancer center and temporarily relocated for me to receive treatment there.

As we told others about my diagnosis, we discovered that the rarity of the cancer was apparent in the many questions we received about it. There were only a couple of people we spoke with who had heard of it, and sadly, they had lost their loved ones to it. It was scary to say the least and we had wondered if I would be able to get through this.

It was isolating as a 27-year-old to be diagnosed with a rare cancer.

But when we arrived at the Sarcoma Center at MD Anderson, we found our place. The isolation we had experienced started fading away. We felt understood and began connecting with the medical team and other patients while in the waiting room each week. My husband was able to talk with other caregivers about their experiences as well.

We asked a lot of questions, spoke with a social worker who gave us a packet of resources, and connected with a local sarcoma foundation within the first couple of weeks upon arrival. 

We realized that the support system would be smaller than those for more common cancers, but support was available, intimate, and powerful.

As a rare cancer patient, I had found a voice. I had walked into a community whose presence I felt each day I was treated there. I wasn’t alone. Family and loved ones had walked alongside me asking lots of questions, and I finally had answers to share and work through with them.

When we moved back to our small town in Colorado after I had no evidence of disease, it was difficult to find events and support groups that met locally for my type of cancer. When I attended, not a single person had been diagnosed with my kind of cancer. I felt like an outsider within a group that I was supposed to belong to. I was partly understood, but not on the deeper level that I had hoped for.

I realized I might have to redirect my search.

I had to take a step back and look at the big picture: Since it was already a rare cancer and not everyone diagnosed with it was seeking out a support group, I decided to try a different way to connect with others. I sought out cancer support groups with members that had other aspects of life in common with me. I attended an unforgettable cancer conference for young adults where I united with other fighters around my age. I also had the opportunity to attend a faith-based retreat for cancer patients where we shared our stories, which was truly inspiring. It made me realize that there is more to me than my cancer diagnosis. I am grateful for those connections that I made and still have today.

One thing that fell in my lap was getting connected with a psycho-oncologist. A psycho-oncologist specializes in counseling patients and/or caregivers who have been affected by cancer. I met with my counselor for 6 months after becoming cancer-free and it was life-giving and life-changing to share my experience, feelings, and fears to have them met with encouragement, guidance, and hope.

I also started joining social media groups for my type of cancer and followed hashtags on Instagram that were related to rare cancer support. It has been amazing to be able  to connect with people in this way. I have made new friendships and followed accounts of people that had fought cancer before me and learned how they continually overcome obstacles and thrive today. I also started a blog and have had patients reach out to me that have never shared their diagnosis, have questions, or share ideas with me and we have been able to “digitally walk” together.

I had to make a choice early on to not compare my rare cancer to other cancers that are more common. All types of cancer need more awareness, education, and funding. And our voices and stories are worth being shared and heard to help further this cause. I am grateful for those who have pioneered new ways to help and inspire us in our time of need. Each one reminds us that we and our loved ones can pay it forward.

Rare cancer thrivers: We may be few, but we are mighty. And here in the IHadCancer Community, you are not alone, and you are loved. No matter how common or rare your cancer diagnosis may be, cancer is cancer and we are all in this together. We will continue to support each other through the ups and downs of life and find new ways to create a cancer-free world through research, our voices, and fundraising. 

I hope you feel supported and loved today!

Photo courtesy of the author.