In the very back of my file cabinet lies some seriously sacred territory – the many files documenting my brother’s medical history before sarcoma, records reflecting his fight against sarcoma, and his death certificate. I don’t know why I have kept these papers 7 years later, except to say that I thought they may help someone else needing research info, fighting an insurance appeal or filing for disability…or for assisting in the preventive care of Alan’s 3 children as they grow up. And then I must admit there was the emotional pain of shredding the papers that defined the most devastating chapter in my life, and deciding that it was easier on my heart to let them stay put.

I made the decision to pull out these files today in honor of Sarcoma Awareness Month, because I know in my heart that I do have an important story to tell you and a valuable lesson to impart. And what monumental thing did I learn after the loss of my brother, you ask? Awareness can potentially save your life, and the lack of it may kill you.

Like so many young people suddenly stricken with sarcoma, my brother Alan was a healthy young adult. However, his first “bolt out of the blue” health crisis came not from sarcoma, but from renal cell carcinoma in 2000. Alan had some unexplained and sudden back pain. He got it checked out quickly, and to his utter shock he had a malignant mass in his right kidney. Alan had his kidney immediately removed and had no further treatments, because there was no evidence of metastatic disease. Our family felt so grateful for this outcome and breathed a huge sigh of relief. But what we didn’t know at that time was that the ultimate enemy was waiting in the wings — and would strike without abandon.

Alan began to have regular oncologic visits and scans of his abdomen and pelvis after that 2000 diagnosis to monitor for reoccurrence or metastases of renal cell carcinoma. All was well with his cancer status…until it wasn’t at all. The new oncologist wrote this in his report 9 years later, in July 2009:

“I had the pleasure of meeting Mr. Stoller today for further recommendations regarding the role of adjuvant radiation therapy in the management of pleomorphic rhabdomyosarcoma of the right upper extremity, status post resection with evidence of biopsy-proven lung metastases. He is a charming 46-year-old gentleman who had a mass in the right upper extremity for approximately 10 years. This had been deemed to be a lipoma. However, after bringing this to the attention of one of his other physicians, the prompted an MRI on May 28, 2009. This revealed a 5.4×5.8x10cm inhomogeneous mass….”

What I will NEVER understand was why there were no physician notes about a significant lump on his bicep that was present THE ENTIRE 9 YEARS POST KIDNEY CANCER. Was anybody concerned about its mere presence in the backdrop of having had renal cell carcinoma? Were these oncologists familiar with sarcoma and what to look for? Was there such a complete lack of awareness on the part of every physician that saw my brother during that decade that no red flags were raised?

Let my brother’s tragic passing remind you to know your body, to question something that doesn’t seem right, to insist that your doctor take a thorough look, and to relentlessly be your own advocate. May it serve as a startling reminder that lumps, swelling, and pains need to be checked out thoroughly. And I mean THOROUGHLY. A two-second palpation of a lump on the arm of a cancer survivor doesn’t suffice as a lipoma diagnosis, in my humble opinion.

I will never know if Alan’s death would have been prevented if his physicians had been more thorough in their approach to his longstanding arm lump, or if he had insisted on a resection or biopsy 10 years prior to his sarcoma diagnosis. But what I can say with certainty was that the epicenter of this tragedy was a blatant lack of sarcoma awareness on everyone’s part. So I hope you’ll send this story to everyone you love with a mysterious lump, swelling or pain and implore them to take action. I hope you’ll share our foundation’s sarcoma awareness content on Facebook and Twitter not just during July’s Sarcoma Awareness Month, but throughout the year. It is my sincere prayer that we can work together towards a smarter tomorrow regarding sarcoma awareness. Many lives will depend on our diligent voices.

With love, light and hope,

Susan

The Paula Takacs Foundation for Sarcoma Research | Charlotte, NC 28271 | (704) 516-5113