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September 30, 2021

TOPIC: Patient Stories, Voices of Rare Cancer, Patients & Members

Loneliness, Connection and Mesothelioma: Tamron’s Rare Disease Story

Posted at September 9, 2021 09:30 am by Rohan Narayanan

I was diagnosed with peritoneal mesothelioma in 2007 as a 21-year-old new mother. When the doctor told me I had peritoneal mesothelioma, I didn’t know what it was. I was overwhelmed with shock and confusion with so many questions about this rare disease and how little information seemed available. Mostly, I felt alone. Feeling alone when faced with a diagnosis of a rare disease… Read More

September 30, 2021

TOPIC: Patients & Members, Patient Stories, Voices of Rare Cancer

Timing and Access: Katherine’s Rare Cancer Story

Posted at September 9, 2021 08:30 am by Rohan Narayanan

I was a healthy 27-year-old with no underlying risk factors when I was diagnosed with appendix cancer. 

One evening, I started cramping in my abdomen. I thought nothing of it until the intensity increased and I could barely sit upright or walk. I called my primary care provider and she recommended I go to the emergency room, as it could be appendicitis. I was nervous to go,… Read More

September 30, 2021

TOPIC: Featured News, Patients & Members, Patient Stories, Voices of Rare Cancer

Rare Cancer Day 2021: Bryce’s Clear Cell Sarcoma Story

Posted at September 9, 2021 08:00 am by Maia Craig

Bryce was able to get diagnosed with clear cell sarcoma (CCS) quickly. He tries not to think about it but finds it virtually impossible because he knows that there is no cure. Originally, his primary care physician thought the mass could be a desmoid tumor but once the CT scan and MRI came back as inconclusive, she recommended for… Read More

September 24, 2021

TOPIC: Patients & Members, Patient Stories, Voices of Rare Cancer

Still Rare After 50 Years: Andrea’s Rare Cancer Story

Posted at September 9, 2021 09:00 am by Rohan Narayanan

One month after his 35th birthday, my father, Kenneth, died of leiomyosarcoma (LMS). The journey was quick. He coughed up blood and it brought him into surgery. Massachusetts General Hospital diagnosed him, and he died in another hospital closer to my hometown five months later. 

As a child, I had no capacity to understand nor grieve his death. At 35, the same age he was when he passed, I began to grieve and I have not stopped. I am 55 now and I realize his… Read More

September 17, 2021

TOPIC: Patients & Members, Advocacy, Patient Stories, Voices of Rare Cancer

A Message to Chondrosarcoma Patients: Shayna’s Rare Cancer Story

Posted at September 9, 2021 09:00 am by Rohan Narayanan

Shayna had advanced metastatic chondrosarcoma, and her disease progression defied many expert opinions and expectations. In 2015, Shayna was misdiagnosed with scoliosis, and nine months elapsed before she was accurately diagnosed. She was prescribed physical therapy and exercises, which were ineffective in reducing her pain. Early detection is needed in diagnosing chondrosarcoma, and we found a lack of information available about the disease. 

Other false assumptions and misinformation were communicated… Read More