Barb Soyka is getting ready to celebrate the 10th anniversary of her diagnosis with stage IV retroperitoneal LMS!
In 2010, Barb learned that she had a football-sized tumor encapsulating her left kidney. She was initially misdiagnosed by no less than 3 pathologists (all lacking LMS experience) as having kidney cancer with sarcomatoid tendencies; it took a year and a half for her to receive the correct diagnosis.
Barb’s original tumor ruptured during removal. She has subsequently had hundreds of tumors in a variety of areas, including her kidneys, retroperitoneum, large and small intestines, psoas muscle, spleen, liver, pancreas, diaphragm, and abdominal cavity. And she has received many treatments, including four cancer surgeries and a total of 29 months of gem/tax chemo (12 of those months adjuvantly).
The treatments worked, and Barb is delighted to say that she is currently NED. She has learned that she is stronger than she thought she was and tries to focus on “the now”; meditation and therapy sessions with a psychologist who specializes in cancer patients have been helpful for her. She has helped the LMS community by contributing tumor specimens to research and encourages others to do the same.
Barb has some valuable advice for anyone diagnosed with LMS:
- In order for hope to thrive, you need to feed it well! Seek out advice on coping from fellow LMSers. YOU are the person most invested in your own survival.
- Form your team of medical specialists: oncologists, surgeons, psychologist or licensed social worker, nutritionist, primary care doctor. Be sure to go to a sarcoma specialist.
- Research your options and get second opinions whenever possible; be a well-informed patient.
- Seek out a therapist before you think you “need to.”
- Read long term thriver stories to uplift your spirits.
- Focus on right now; don’t let your mind live in a future full of fear or get stuck in grieving for your old life.
- Know that it’s okay to end toxic relationships that you may have tolerated in your life before LMS. Be kind to yourself.
Happy anniversary, Barb–may you have many, many more!