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.

sandraspurses | @sandraspurses | Dec 12, 2024

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

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

susykdunn | @susykdunn | Dec 11, 2024

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.

kadie22 | @kadie22 | Dec 8, 2024

Leiomyosarcoma

megs14471447 | @megs14471447 | Nov 26, 2024

In reply to @colleenyoung "@megs14471447, this must be such a terrible shock to you and to your son. May I..." + (show)

49 but has decided not to have surgery and try trial drug

fionap | @fionap | Nov 26, 2024

In reply to @hopeful33250 "I appreciate the added information, @fionap. What type of follow-ups will you be having in the..." + (show)

Physio and 2 weeks rehab after surgery and then I presume 3 or 6 monthly MRIs. The first surgery was in 2016. No chemo or radio.

Colleen Young, Connect Director | @colleenyoung | Nov 24, 2024

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

@megs14471447, this must be such a terrible shock to you and to your son. May I ask how old he is? When is the surgery?

Teresa, Volunteer Mentor | @hopeful33250 | Nov 24, 2024

In reply to @fionap "Surgery in January. No pain." + (show)

I appreciate the added information, @fionap. What type of follow-ups will you be having in the future?

fionap | @fionap | Nov 24, 2024

In reply to @hopeful33250 "Hello @fionap and welcome to Mayo Connect. I see that you have been diagnosed with Chondro..." + (show)

Surgery in January. No pain.

megs14471447 | @megs14471447 | Nov 17, 2024

In reply to @richard515 "It is grim but the only way to stoop. It. I with I had had my..." + (show)

Thank you for your advice

richard515 | @richard515 | Nov 17, 2024

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.