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Sep. 27, 2019

TOPIC: Featured News, Patient Stories, Patients & Members

Voices of Rare Cancer: Nicole’s story

Posted by Laura Mullen

My name is Nicole and I was diagnosed with Stage 3 sarcoma cancer in July 2017 at the age of 27. It was bizarre being diagnosed with cancer in the first place, but to be diagnosed with a cancer I had never heard of was even more odd. It took me a solid month before I could even say and pronounce that I had been diagnosed with “undifferentiated pleomorphic sarcoma,” for lack of remembering the full name. Sarcoma occurs in less than 1% of the population each year and doesn’t have a specific point of origination. It can be found in the soft tissue or within the bones. Oftentimes, sarcoma do not cause symptoms until they have spread, so I considered myself very blessed that we found it when we did. 

The discovery of my sarcoma was considered a “misfinding,” as I was having my gallbladder checked and a tumor the size of a racquetball was found resting on my pancreas in the scan that was taken. No symptoms and nothing showed up in my blood work. By the grace of God, it was found.

I was diagnosed in Colorado but due to the rarity of sarcoma and the procedure that I would need (the Whipple procedure), it was recommended by my surgeon that I would be treated in Texas at a cancer center in Houston, MD Anderson Cancer Center, where they specialize in sarcoma. So, my husband and I packed up our lives and moved down to Texas for me to be treated at the end of July 2017. I’ll never forget showing up for the first time to the cancer center in July. I learned that July is “Sarcoma Awareness Month.” At the beginning of July, I didn’t even know what sarcoma cancer was. By the end of the month, I was fully aware and knew it would change my life forever.

Being diagnosed with a rare disease can feel a lot like being on an island at times. My primary care doctor, the radiologist who found it on my first scans in Colorado, and my general surgeon had never seen a sarcoma before. It’s quite terrifying when your doctors aren’t familiar with the disease that you have, adding in that I’m a young adult and none of my friends have had cancer before.

When I went to MD Anderson, my island became a small village. We were surrounded by medical staff and people who knew sarcoma very well and we were surrounded by people from all over the world that would go there to be treated for it. It felt less lonely as we met others who understood the journey well. 

My team knew what to do as I was scheduled for six rounds of a specific chemo regimen called “GemTax,” radiation, followed by the Whipple procedure (a major open surgery). But anytime cancer and intense medicine are presented, we never know how our bodies will react. After my first round of treatment, I developed a blood clot and my liver levels started spiking after the 4th cycle so we stopped chemo. Then radiation was deemed unsafe so I moved onto the Whipple procedure.

On December 13, 2017, I became cancer free. The surgeon went in to remove the cancer and begin the procedure, but nothing was to be found anywhere. It had disappeared as strangely as it had arrived. It was a miracle and I have been cancer free ever since. 

The healthcare experience has provided challenges for us. We tried to come back to Colorado after treatment and flew back every 3 months for follow up scans. After a year and a half of doing this, we decided we wanted to be closer to the cancer center in Houston to help with long-term side effects that have occurred, so we made the move back to Texas. We are looking forward to the Integrative Medicine Program that the cancer center provides to help with the chronic back issues and lingering fatigue that I battle every day. The overall experience has had many ups and downs, but ultimately, I am so thankful to be alive and rejoice in the truth that I have another day on earth to live and love.

There is a lot of work to be done in the future for sarcoma, yet I am optimistic and hopeful. With 50+ sub-types within this already rare disease, research, education, and creating awareness are key to assisting financially for this disease as well as the research and development needed to treat and find a cure. My healing was miraculous, so I truly believe that anything is possible. And the doctors and staff that I have been treated by are passionate and dedicated to this cause. I am so thankful that such wonderful people step into a tough spot on behalf of those like me who need it the most. We will fight until we find a cure for sarcoma!

I think it’s important to share my story for several reasons. The first being that there is hope even when you’re diagnosed with a rare disease. Hope that someone will be able to understand and help you, hope for community, hope for a cure, hope for a life beyond the disease. The second is that disease can happen at any time, no matter how young or old you are. I share this because it’s time to start living now. We spend so much time on our phones looking down or watching others live out their lives on social media that we forget we have a precious gift of life around us: look around and be the one living your life. It took cancer for me to learn this lesson, so please learn from me and start living life today. 

Third, I am honored to share my story to help create awareness for sarcoma cancer. In 2018 I was informed that there were only 44 sarcoma oncologists in the entire country! We need more medical doctors to help treat this disease and more awareness all around for research and development and education. And lastly, I wanted to share my story because sharing it helps me heal and connect with others. Being diagnosed with cancer is a traumatic event and the more I talk about it and connect with others, the more I can process, heal, grow, and help others like me who might feel like they are alone or on an island. I am here to say that you’re not alone.

My greatest hope is that through sharing my story that you feel known and loved. That even amidst any fears you may experience, the fire that may feel like it’s burning out is ignited back to flame giving you the strength to fight. Keep going and we will keep fighting for you through prayer, communication, fundraising, and promoting research and development!

God bless you today and always!

Nicole, www.SparklySurvivor.com

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