My Sarcoma Story – Rick
Note: Rick’s story was shared by his daughter, Kristen.
My Dad and I were both diagnosed with cancer two weeks apart last July. At first for Dad it was a pancreatic tumor. Mine breast cancer. We always said we would skip to treatments together and be cancer warriors. His surgery took place at Johns Hopkins where he went to have 60% of his pancreas removed and his spleen. In addition they found a large strange growth attached to his stomach and in part of his small bowel. After his 6+ hour surgery the pathology report came back a week later that his pancreatic tumor was benign. However, the other peculiar growth took an additional 3-4 weeks. It had characteristics of several types of cancers and we could only get a vague answer as to what they found in his stomach that day. No urgency was expressed just that Dad should get in contact with the recommended oncologist to discuss treatments.
He came home about 10 days after surgery. Was home for about a month before he was admitted to Johns Hopkins because he was not improving. Several tests and they found a grapefruit sized abscess. After trying to scrape it out and make it smaller numerous times they found it wasn’t helping his health. Drs. performed a biopsy and a couple weeks before he died it was found that he had an extremely rare stage IV soft tissue sarcoma (myofibroblastic sarcoma). No knowledge about it. Not enough research. We were told only about 5 people in the U.S. get this a year and there is no cure. He had very little time. He was offered steroids and chemo at first then oncologist said he wouldn’t survive chemo and he should go into hospice. My Dad was very young, just 62. An extremely hard worker and athlete. We need so much more research!
Words of Wisdom:
Find that doctor that will go the extra mile. My Dad’s original surgeon was wonderful. He cleared everything out and had clean margins but it seems because doctors didn’t have enough knowledge about the strange growth it took to long to diagnose and my dad lost lots of time before his body started going downhill waiting on the pathologist’s findings. I think if we had gone to get a second opinion before things got worse and found that doctor that saw the urgency my dad might have had a chance or had more time with us. Stay on top of pathology reports. Go find that doctor who is willing to try to help your loved one. We didn’t find it and by the time we wanted to he was just too ill and his body started shutting down. Stay positive. Do not let doctors put negative thoughts in your head. Do not let them be negative. Yes, they are trying not to sugar coat things. But you need to believe and keep fighting. We kept fighting for answers and tests to help him which we think gave him a little more time but wish we had searched out that second opinion sooner. Don’t be afraid to tell doctors you want to try. But my family and I can’t express how important it is for funding more research. There is no knowledge about this rare disease. Absolutely unbelievable. No cure and because of that it seems doctors give up sooner than they would if they had more information and knowledge about these soft tissue sarcomas.
Role of the Sarcoma Foundation of America: The Sarcoma Foundation of America will now have a very special place in my family’s heart. We lost a true hero. An honest, hardworking Brother, Husband, Dad, and Grandpa. We want to keep his name alive and not allow this disease to silence the wonderful human being he was. What SFA has done for others by making this unknown killer known, sharing personal stories, funding research, etc. is a blessing to the future. We wear our yellow ribbons proudly and hope to hear of more sarcoma warriors turning into survivors by the help of SFA. We know their continued work families will be grateful for more birthdays, and more smiles. They save families from the horrible heartbreak we had to endure this past November. I wish we had known more and hope our story can help. Thank you SFA for letting us share our story and you will always be part of our family for many years to come.
We want to see an end to this incurable disease and know you are helping end that fight.