Im so happy you made it girl. I was just diagnosed with MPNST 9 months ago. Chemo, radiation, surgery. Unfortunately, my tumor was in the area of my cheekbone, so I lost half of the upper jaw and hard palate 🤦🏼♀️ i heard only great things about the Mayo Clinic, I wish I was from the US so I could get sarcoma specialist to have a look at my case 🙏🏻
My brother had MPNST but it went undiagnosed too long . He also had the tumors in his lungs... I have NF1 which is related to MPNST and have a tumors which were "HOT" on a scan six months ago but are sitting on my spine so very difficult to biopsy. I had a follow scan a few weeks ago and go for the results in a few days.. Being middle aged works against me as opposed to finding this in my 20s but I am FAR from giving up. We shall see what the next step is. Thanks for sharing your story
Hi, My name is Jennifer, I also won. I was 26 and like you my Drs did not know what they were looking at. I had a biopsy and was told Everything was ok and I was fine, apparently they did not know what they were looking at and after sending my tumor out a week or so later I was given the news that I had an MPNST. My tumor presented its self in my great toe. My best option was to remove the big toe entirely. I do not hid my foot and I can walk just fine. Like you I am proud. I earned it and hearing your story and age and being able to relate makes me so happy. Happy that your able to say I won to. Thank you for sharing your story!!
Thank you for sharing your story with us Jennifer, we strive to connect with other young Sarcoma survivors and spread the word among the medical community to prevent further misdiagnosis. We are glad to hear you were victorious in the battle against sarcoma. Many blessings for you!
