Diagnosed with sarcoma? Let's share

Posted by Colleen Young, Connect Director @colleenyoung, Jun 21, 2017

Because sarcomas are rare, I would like to start a conversation to help connect people living with sarcoma or caring for someone with sarcoma.

As you know, sarcoma is the general term for a broad group of cancers that begin in the bones and in the connective or soft tissues (soft tissue sarcoma). There are many different types and sub-types of sarcomas, for example: angiosarcoma, chondrosarcoma, Ewing’s sarcoma, fibrosarcoma, gastrointestinal stromal tumor (GIST), Kaposi's sarcoma, leiomyosarcoma, liposarcoma, malignant peripheral nerve sheath tumor, osteosarcoma, pleomorphic sarcoma, rhabdomyosarcoma, synovial sarcoma and more.

Let's get to know one another. Why not start by introducing yourself? What type of sarcoma have you been diagnosed with?

Interested in more discussions like this? Go to the Sarcoma Support Group.

kadie22 | @kadie22 | Dec 8 9:38pm

Leiomyosarcoma

susykdunn | @susykdunn | Dec 11 6:22pm

I'm sorry I just recently saw this response. I'm doing well- had surgery and proton therapy in late 2022. I have had no recurrence to date but am having a lot of trouble emotionally with learning to live with the ups and downs of the scans as a part of my life.

sandraspurses | @sandraspurses | Dec 12 10:11am

In reply to @kadie22 "Leiomyosarcoma" + (show)

Leiomyosarcoma...34 year survivor. Now dealing with scarring and blockage on my femoral artery from the radiation.

skullbasecancer4 | @skullbasecancer4 | 5 days ago

In reply to @cindibarre "I have no symptoms or discomfort at all." + (show)

Hi
Just wanted to see how you’re feeling ? My husband has a chondrosacroma in the skull is non - resectable . Have they mentioned the medicine called Ivosidenib . Just wondering…. Take care 🙏

skullbasecancer4 | @skullbasecancer4 | 4 days ago

In reply to @megs14471447 "49 but has decided not to have surgery and try trial drug" + (show)

May I ask what trial drug are you trying ? The doctors are suggesting Ivosidenib , since his is not operable for a Chondrosacroma of the skull .

richard515 | @richard515 | 3 days ago

In reply to @skullbasecancer4 "May I ask what trial drug are you trying ? The doctors are suggesting Ivosidenib ,..." + (show)

Ivosidenib requires patient to have the mutation of the IDH1 gene. Success for leukaemia and bile duct. Cancer. It did not work for me sadly. Chondrosarcoma pretty much everywhere.

ayjay | @ayjay | 2 days ago

diagnosed with soft tissue sarcoma and had successful surgery in thigh

brenda4usc | @brenda4usc | 1 day ago

I was diagnosed in September with Sarcoma T3 N0 in my thigh. I thought I had a “Frozen ITBand” from too much physical activity, a sports injury, and within a month had a mass on the thigh the pain increased, so I was relieved to find out via needle biopsy of the diagnosis. I chose to start with Radiation Therapy to shrink the mass and then after approximately three weeks of rust and recovery, I will go through orthopedic oncology surgery to have the remaining mass removed. Things look positive for keeping my leg and I want to be educated on how to proceed.

ayjay | @ayjay | 1 day ago

In reply to @brenda4usc "I was diagnosed in September with Sarcoma T3 N0 in my thigh. I thought I had..." + (show)

It sounds as though you will have a very positive outcome! I too had thigh surgery and it went well. Best of luck!

verena | @verena | 17 hours ago

In reply to @brenda4usc "I was diagnosed in September with Sarcoma T3 N0 in my thigh. I thought I had..." + (show)

I, too chose radiation first for my Myxofibrosarcoma stage 2b in my thigh, then surgery after 4 weeks of recovery, mostly for my skin but I also had fatigue, from radiation. My surgery was this March with clear margins. Looks like you have a treatment plan, that is the most important first step. Best of luck to you.