Diagnosed with sarcoma? Let's share

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.

@colleenyoung

@mar4, what did you learn from your appointment with your doctor today? Do they think it might be a new sarcoma forming? Any tests ordered?

Jump to this post

@mar4.

My PC doctor examined the area and does not think it is a Sarcoma. However, she wants me to have some X-rays of the area and go from there.

REPLY

I'm so fortunate to have a lot of energy, but it is hard. I work full time, am an only child with zero family around here. Two of my children are in college, so I only have one at home in high school. They are taking it pretty well, I guess. We have had a lot of tragedy, so quite frankly, we handle things like champs. My dad passed away 5 years ago from Flu B. My mom always helped with the children, so I've had to learn alternate ways to get my son home from school, etc... I certainly do not like these kinds of surprises any more. And 2 different kinds of rare cancer..????? I'd rather hit the money lottery than this one. Here is a pic of my youngest son (he was just in the musical Cinderella) and my daughter (she goes to Ball State) and me (first grade teacher).

REPLY
@stephanie27

I'm so fortunate to have a lot of energy, but it is hard. I work full time, am an only child with zero family around here. Two of my children are in college, so I only have one at home in high school. They are taking it pretty well, I guess. We have had a lot of tragedy, so quite frankly, we handle things like champs. My dad passed away 5 years ago from Flu B. My mom always helped with the children, so I've had to learn alternate ways to get my son home from school, etc... I certainly do not like these kinds of surprises any more. And 2 different kinds of rare cancer..????? I'd rather hit the money lottery than this one. Here is a pic of my youngest son (he was just in the musical Cinderella) and my daughter (she goes to Ball State) and me (first grade teacher).

Jump to this post

treatment plans?

REPLY

my friend reminds me to keep up the pace but to set the timer to remember to take couch breaks

REPLY

Anyone else getting doxil chemo?
5 days of radiation?
other successful treatments?

REPLY
@bicycle3

treatment plans?

Jump to this post

My mom has no treatment plans yet. We haven't even heard from her doctors since surgery. I have a phone call into them, though.

REPLY

Hello, My 30yo cousin has extraskeletal osteosarcoma. It originated in her leg, but then metastasized to at least 4 other areas of her body because of her lymphatic system. She underwent radiation to the original area in her leg and followed with chemotherapy, but by then it was found in the other locations. So now the doctors at Sloan Kettering are taking her off the chemo to do radioactive immunotherapy, which she says is to keep it out her vital organs for as long as possible.
Does anyone have any recommendations for doctors to give 2nd opinions or knowledge of any clinical trials that could her?

REPLY

Wish I did.
I think you are at the best in research.
I use Doxil chemo and radiation.
And mental psych therapy.
Art therapy, and religious group therapy.

REPLY

I was just diagnosed with ossifying fibromyxoid tumor.

REPLY

What is the best treatment after surgery for ossifying fibromyxoid tumor.

REPLY
Please sign in or register to post a reply.