Diagnosed with sarcoma? Let's share

This round of chemo and radiation on top of an infection seem more challenging.

Hi @zamphiria, your cousin is in good hands at Sloan Kettering. If you would like to consider a second opinion at Mayo Clinic, you can find more info here: http://mayocl.in/1mtmR63

How is your cousin doing on immunotherapy?

Welcome @eokwuns, have you had surgery? Is additional treatment like chemo being considered? How are you doing?

Hi @erika42, you may wish to connect with others living with malignant peripheral nerve sheath tumor (MPNST) in this recent and active discussion:
– Malignant Peripheral Nerve Sheath Tumor https://connect.mayoclinic.org/discussion/malignant-peripheral-nerve-sheath-tumor/

How are you doing Terrie @bicycle3 ? Are you tolerating chemo okay?

Many tearful thx.

hello, my name is lisa. my son was diagnosed with synovial sarcoma in 1998. it was in his foot. he had previously had a sports injury in the foot. a large lump appeared and the rest is history. we took him to a university hospital and they recommended amputation of the foot. what a horrible decision for him. he was just 19 years old. when the amputation was done the dr said all the parameters seemed to be intact and gave him the chemo options. he opted out of the chemo with the option of very close follow ups. he has never had a reoccurance but they did say that if it did happen it would more than likely be in the lungs. it has been a long time and i thank the drs and the good Lord for his life.

Hello my name is Irene. I am the 1 in a million women who was diagnosed with an angiosarcoma caused more than likely by radiation from an earlier breast cancer radiation treatment. My breast cancer was about 14 years ago, so this was a big surprise. I was diagnosed with the angiosarcoma 2 years ago and had it removed from under my arm near the radiated area. Luckily I found it early enough however the doctors did remove parts of 2 ribs just to be careful. I then went through 6 months of hard chemo, all different types. Now, 2 years later another spot has appeared on the skin. It's very little and hasn't spread. I will go back to the operating room on Monday. My doctor told me it's not unusual that this can appear again on the scar of the last surgery. He has a colleague that was operated on 3 times for returning angiosarcoma and then it never came back, so I am so hopeful!
The crazy thing is I went through genetic testing a few years back and everything came back negative, but my father had a leiomyosarcoma. He had also received radiation and 12 years later was diagnosed with that. For this to be a rare cancer that has shown up twice in my family is leading me to believe maybe it is genetic, I am not sure.
I pray everyday I can beat this and so far God has put me in the right place to have it treated quickly each time.

Hello Lisa,
I am so glad your son is okay. What a horrific decision to have to make at 19. What a brave young man to go through that.
I am so happy he has not had a reoccurrence.
Blessings,
Irene

Hello,I'm Sarah. My mother was diagnosed with uterine leiomyosarcoma 6cm after hysterectomy, then radiation was done chemo was also suggested but PET ct was all clear without any abnormal mitotic activity so oncologist allowed to do only radiotherapy. Then followup CT were also clear without any metastasis. After 3 months she started coughing blood upon which CT was done again and soft nodules in abdominal region and lower lobe of lungs were identified with clear margins. Lung Trucut Biopsy was done and it was metastatic leiomyosarcoma. It was shocking news for all of us . Now she's having chemotherapy. And her oncologist is very hopeful that it can be diluted as it was diagnosed very early.
If there's anyone with similar experience please share it with me.