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.

verena | @verena | Dec 12, 2023

In reply to @elcee "I was seen for leiomyosarcoma at Froedert in Milwaukee earlier this year. Expert clinicians. Hope they..." + (show)

I am going to St Luke's. My meeting with the entire Sarcoma team is Monday. I know it will be overwhelming. Thinking about how I am supposed to make decisions when I am still learning the language while at the same time really wanting action. None of us signed up for this.

elcee | @elcee | Dec 12, 2023

In reply to @verena "Hello, I was just diagnosed with a fast growing spindle cell myxosarcoma in my thigh. I..." + (show)

I was seen for leiomyosarcoma at Froedert in Milwaukee earlier this year. Expert clinicians. Hope they can help you

verena | @verena | Dec 11, 2023

Hello,

I was just diagnosed with a fast growing spindle cell myxosarcoma in my thigh. I am meeting with the sarcoma team in Milwaukee in a week. I had a chest CT today and a PET scan on Wednesday. This came so fast, I have not come up for air. I have not slept in days. I am not even sure what questions to ask. I am glad I found this group.

Colleen Young, Connect Director | @colleenyoung | Dec 4, 2023

In reply to @mimih "Just diagnosed with sarcoma in chest area" + (show)

@mimih, welcome. I second @everythinglucky's questions. What treatment has been suggested? How are you doing?

mulkey518 | @mulkey518 | Dec 3, 2023

In reply to @sdrichmond "Hello Everyone, My name is Scott. I live in north central NC. Diagnosed with angiosarcoma in..." + (show)

Hello Scott - this is Mulkey. I too was diagnosed with Radiation Induced Angiosarcoma of hte blood vessels in April 2023 as a result from receiving 6 weeks of radiation treatment from my 2014 Breast Cancer. The Surgeon said that the Angiosarcoma is a delayed effect of the radiation. I could not find any one who knew about this rare cancer. Also, I live in the DC metropolitan area and not many doctors have had experience with Angiosarcoma (soft tissue sarcoma). I was told by one Medical Oncologist that there are no studies or clinical trials for Angiosarcoma. I am scheduled to see the Medical Oncologist to go over the plan for Chemo but that is not scheduled until December 15th. He stated that he will be giving me generic meds for four (4) cycles running for 3 - 4 months.- but as of now, I don't know the name of the meds or anything else. I am trying desperately to find a doctor to get a second opinion. So I will include you Scott in my Prayers as well. We got to stay connected here,

elcee | @elcee | Dec 2, 2023

Has anyone heard of histotripsy being used as a treatment for sarcoma? I have leiomyosarcoma some of which is in my liver. Someone just mentioned histotripsy as an alternative to chemo but they were not real familiar with it either.

Dream.catchr | @mickeyambrose49 | Dec 1, 2023

In reply to @colleenyoung "Dream.catchr, how did your appointments go? What did you learn? How are you doing?" + (show)

Do you orthopedic surgeon said that it was either a bone infarct or an endochondroma but for now she just wants to watch it. I go back in January for more imaging and to see her again. They also have me set up to go to the cancer center for, my breast cancer follow ups. I was dx’d ILC and as we all know it is a sneaky cancer and often shows up later in other parts of a persons body so I will need follow ups. Mayo didn’t see where City of Hope saw multiple myeloma in my blood but they will monitor my blood as well because there was one thing in my blood that could be indicative of multiple myeloma. I just wait and wait. I almost lost my job on the hormone blockers so I have had to back off on those until I see the cancer center at Mayo in January. For now I’m trying something more natural and praying a lot. Thank you for asking.

EverythingLucky | @everythinglucky | Dec 1, 2023

Sorry to hear that. Do you have a treatment plan yet and a good support system in place?

mimih | @mimih | Nov 30, 2023

In reply to @colleenyoung "Hi @me67 @udderplace @brinys @deborahe @jeffk @Laydeewinx @sheila2005 @funkynotes @zshivaughn @jacobito @swstar, I'd like to invite..." + (show)

Just diagnosed with sarcoma in chest area

Colleen Young, Connect Director | @colleenyoung | Nov 22, 2023

In reply to @sdrichmond "Hello Everyone, My name is Scott. I live in north central NC. Diagnosed with angiosarcoma in..." + (show)

Welcome, Scott.
You may also be interested in joining this discussion:
- Is anybody dealing with an angiosarcoma?
https://connect.mayoclinic.org/discussion/angiosarcoma/
Having angiosarcoma so close to your eyelids must be hard. It's good to know you had treatment options to choose from. Has the chemo and radiation shown to be effective for you? How are you doing?