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.

fionap | @fionap | Nov 16 1:08pm

In reply to @colleenyoung "Hi @fionap, I add my welcome. You may wish to connect with other members in this..." + (show)

I had a large chondrosarcoma in my pelvis removed in 2015. No symptoms at all. Discovered during other routine examinations. The superior pubic remus bone was removed and some of the abductor muscles. Clear margins. All fine to 2019 then x rays regularly thereafter. In July 2023 again no symptoms but as the result of a CT scan for possible diverticulitis it showed again. No x rays had show it! Biopsy in August 2023 showed recurrence of grade 1 slow growing chondrosarcoma.
Watch and wait. MRIs every 6 months. In the last 12 months it has started to grow again and I am planning surgery to debunk the tumor in February

To remove it totally would mean the loss of the hip joint which I will not consider

Does anyone else have a similar situation?

megs14471447 | @megs14471447 | Nov 17 1:14am

My son has chrondrosarcoma. Started in knee doctors want to amputate whole leg not sure about this

fionap | @fionap | Nov 17 11:54am

In reply to @megs14471447 "My son has chrondrosarcoma. Started in knee doctors want to amputate whole leg not sure about..." + (show)

I would get a second opinion if you can.

richard515 | @richard515 | Nov 17 3:03pm

In reply to @megs14471447 "My son has chrondrosarcoma. Started in knee doctors want to amputate whole leg not sure about..." + (show)

It is grim but the only way to stoop. It. I with I had had my right leg amputated with the first tumour. I had invasive resection. Lost femur and knee. And 3 quadriceps .

3 months later it had metastasised and there is no stopping it. There is no treatment. I now have 9 active tumours.
Early surgery is the only option. Please choose it for your boy.