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.

mkoebs | @mkoebs | Oct 29, 2022

In reply to @ellengrubb "Thank you, Mona. I have just registered. I agree with you that sharing with family is..." + (show)

Yes. I’ve experienced the same. Your loved ones generally want to stay positive at all times. They mean well but can’t handle hearing about your fears or concerns. I’m more than happy to connect at anytime. Not sure if Mayo connect can coordinate or how to share my email address with you but I will if I’m able to figure out that process. Keep in touch.
Mona

ellengrubb | @ellengrubb | Oct 29, 2022

In reply to @mkoebs "Hi Ellen, I’m sorry to hear about your recent medical condition. I hope you’re getting the..." + (show)

Thank you, Mona. I have just registered.
I agree with you that sharing with family is difficult. I’m the first in the family with cancer. It’s hard to get a conversation going. They don’t know how to respond and I’m not sure if my sharing is helpful…so typically I don’t.

mkoebs | @mkoebs | Oct 29, 2022

Hi Ellen,

I’m sorry to hear about your recent medical condition. I hope you’re getting the medical care you need and your outlook is good.

Here is the link to the Memorial Sloan Kettering sarcoma support group application. It meets virtually once a month and is hosted by an MSK social worker. It may take a few weeks to be approved. I find it to be a helpful outlet and haven’t found another like it at mayo or in the Twin Cities. . Having metastatic sarcoma is very scary and I have found it hard to talk to my loved ones about it openly and honestly. That’s why a support group is helpful.
https://www.mskcc.org/cancer-care/patient-education/sarcoma-group
Let me know if you need anything else. I’m always willing to listen, talk and share. Sending you much love and support.

Mona

ellengrubb | @ellengrubb | Oct 29, 2022

In reply to @mkoebs "My undifferentiated sarcoma was removed from my knee and on my five year anniversary of being..." + (show)

Yes, I’d like the link. Thank you,

mkoebs | @mkoebs | Oct 29, 2022

My undifferentiated sarcoma was removed from my knee and on my five year anniversary of being cancer free several spots were seen in my lungs. I’ve had surgery to remove the two largest nodules a few months ago. Now just waiting anxiously until the next CT scan to see if other nodules have grown and can be surgically removed. I’ve joined a sarcoma cancer support group (virtually) hosted by Memorial Sloan Kettering and would be happy to share the link to application if you’re interested.

ellengrubb | @ellengrubb | Oct 28, 2022

Ellen here. I have Synovial sarcoma which started in my calf, was removed and am now showing a growing spot in the lower right lobe of my lung. Anyone else with Synovial sarcoma spreading to the lung?