Diagnosed with sarcoma? Let's share

@mhils Hi how are you doing with the SFT? Is the SFT's at bay?

SOLITARY FIBROUS TUMOR, WHO GRADE 3.
In the frontal lobe. They removed the tumor. I will be going for radiation soon. My left side is numb. Going through physical therapy to move around. I have no idea what to expect. Am I scared? A little. I am at peace and have excepted whatever happens. But I will fight this. Very rare indeed

Linda

Hello,
I am living with a form of soft tissue sarcoma called solitary fibrous tumor (formerly called Hemangiopericytoma). In 2005 a mass was removed from my head in 2005 (then considered then considered “locally destructive.). Lump was initially dismissed by my primary care physician as a cyst (no tests ordered), I was told to call back if I wanted it removed. Six momths later I asked for this, a tumor was found and removed by Peter Black at Brigham and Women’s in Boston. He ordered 30 brain MRIs as a precaution and to prevent recurrence. Well it came back 15 years later and I was diagnosed again with a Stage 4 no cure metastasis, this time tumors in hipbones, left shoulder and 2 in the lung. Currently being treated at Dana Farber here in Boston with pazonapib and have a had few rounds of radiation too. I am doing ok but open to clinical trials for a possible cure some day, presuming that sarcoma specialists at Mayo share this information with Dana Farber practitioners? There is always hope.

We have shared experience.

We have shared experience.

My mom is diagnosed with sarcoma and boy has it been a ride. It happened out no where. She was originally misdiagnosed twice. We immediately went to MD Anderson. They scheduled her for surgery but the tumor was too big. The surgeon open her up and closed her cause he wasn’t comfortable giving her surgery. After that she was placed on chemo. MD Anderson is NOT the hospital everyone thinks it is. All that it matters where you starts has been a complete nightmare! My mother always was diagnosed with sarcoma. MD Anderson supposed to have one of the best sarcoma teams out there. My thoughts is why wasn’t my mom originally scheduled with a sarcoma doctor. If you don’t research, and is new to this. They will put you with any doctor. She finally got the surgery. The dumb doctor kept her off Chemo for 3 months! She has sarcoma. You must act quickly or it will grow. We go to the doctor. They placed her with a new doctor. Finally, with a sarcoma doctor. She comes in the room. Break the worst news saying the cancer has popped back up in 5 different locations and the last doctor shouldn’t have kept her off Chemo that long with this form of aggressive cancer. She started Chemo. 1 of the tumors is not responding. The doctor is placing her on a new Chemo, but I feel the doctor is ready to give up on my mom’s case and the cancer is only in her pelvis. She doesn’t want do another surgery because she said the tumors will grow. They don’t want do radiation because location of the tumor. We are currently at the point of switching doctors and taking control of her case and her life! We can’t afford a conservative doctor at this point and hiding her don’t care attitude with a big smile.

I’m venting my frustration cause my mom is totally unmotivated. She was a nurse so she knows what to do. I have to research everything for her, and I’m almost becoming very annoyed. I’m so disappointed with MD Anderson on so many levels. Anyone, going through this. Learn your cancer. Be your own advocate. Don’t expect anyone to do it for you. Your doctors will give on you, and any form of negativity. Get rid of them. You will lose hope through their negativity and sometimes hope is all you have to hold on to. This is your life!. It tears down your caregiver and they are trying to support you in this long journey, but if you’re not motivated, how can they keep the motivation. I’m on so many forums trying to gained the support and knowledge for her and she’s not on one. I beg her to join so she can educate herself. I wish she was passionate about this cancer as when she was passionate about her career.

I don’t want to lose my mom it’s been just her and I for so many years. I can’t imagine my life without her. I know the time will come one day but she’s only 72. She was a young 72 before this happened. The doctors talk about how healthy she is in spite of the cancer. I know I sound selfish. I’m just frustrated.

I'm a fibroblastic sarcoma cancer Patient in remission 8 months had it ten year there was a mass in my leg 14 cm when your diagnosed with cancer it hard to make it back mentally I'm 53 and I'm not OK im sorry for your sorrow I lost myself it's a hard road back

My name is Melissa Stonebrook and I was recently diagnosed with Dermatofibrosarcoma Protuberans (DFSP). I have surgery scheduled in 2 weeks for a re excision of the area on my left shoulder. I know this particular sarcoma is rare and wanted to know if there is some literature that can be recommended for me to read.