A Sarcoma Survivor Community – Seven Years Strong by Vicki Shapiro
It’s hard to find inspirational stories of soft tissue sarcoma survivors when soft tissue sarcoma accounts for only about 1 percent of all human cancers. While I didn’t know a cancer-free sarcoma survivor during my treatment, I held tight to the knowledge that my doctor had patients who overcame sarcoma. This knowledge gave me strength and hope during my fight because the statistics and stories of sarcoma don’t provide the best odds.
Today, sarcoma patients in San Antonio and the surrounding area can meet regularly with sarcoma survivors. A core group of survivors and their families meet on the second Tuesday of each month in the UT Health San Antonio Cancer Center library from 7 to 8 p.m. Newly diagnosed cancer patients and their caregivers come to ask questions and meet sarcoma survivors who are cancer-free 5+ years. Many survivors and their family members choose to keep coming during and after their treatment. Doctors, physician assistants, medical staff and other community volunteers visit and share their knowledge. Most importantly, the Sarcoma Support Group is there so no one has to fight sarcoma alone.
Here are some thoughts from sarcoma survivors and caregivers in the support group.
Get a second opinion if your first doctor says let’s wait and see. Sarcoma is not always diagnosed correctly, sometimes leading to delays in treatment or worse. If you think you have an issue and your first doctor is not doing anything, don’t wait. In my case, an MRI with contrast was able to show the tumor and the spider-like capillaries feeding it. Others have gone through treatments for an incorrect diagnosis before learning they have sarcoma.
Once diagnosed, start treatment immediately. The best success rates are with those survivors who can treat and remove the sarcoma before it spreads to other areas.
It’s OK to ask for help. Sarcoma treatments can feel brutal at times. Many going through sarcoma talk about having to let go of control and learn humility in order to gracefully accept the help of others.
Don’t obsess over reading stories on the internet. Ask your medical team questions and join a support group.
As with other cancers, many sarcoma survivors and families find strength and hope in their faith.
You cannot go completely back to the way you were before cancer. Your cancer fight is both a physical and an emotional journey for you and your loved ones. After the sarcoma was removed, many of us needed time and support to come to terms with our new life. I broke or fractured a bone every year for five years as I pushed too hard on my weak leg and bones brittle from chemo.
Life can be even greater after cancer. As with many cancer survivors, we have a greater appreciation for things, and we slow down, focusing on making memories with loved ones. Many find a purpose in their cancer to help others and to do things they may have put off earlier. We are so inspired by our fellow sarcoma support group member and osteosarcoma survivor, Allan, who bicycled 7,052 miles in a four-month journey last year from San Antonio up to Canada and back, proving you can still accomplish amazing feats after having sarcoma. To learn more about Allan’s 7,000+ bicycle ride, click here.
Vicki Shapiro is the 2015 American Society for Radiation Oncology (ASTRO) Survivor Circle Award recipient. Each year, ASTRO gives the Survivor Circle Award to a cancer survivor who has dedicated his or her time and energy to helping their local community in the city where ASTRO is holding that year’s Annual Meeting.
