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.

tommie71 | @tommie71 | Jan 22, 2023

I go on Jan 23 to meet the team that hopefully will be able to tell me what the rest of my life will look like. The pet scan says soft tissue sarcoma. I’m going to Ou in Oklahoma City tomorrow. Since it’s so rare and not many places that seems to be the best. Kinda scared but have been reading as much as possible so I will know what to ask. I have thoughts of what I will do since I’m 71 female and wanting to spend as much time with my family rather than in hospitals. Any thoughts you have I would love to hear from you. Tommie

sonshine161 | @sonshine161 | Jan 21, 2023

In reply to @bicycle3 "Pray. Second opinion?" + (show)

Actually the surgery was performed at Brigham Womans Mass General where i received my second opinion. Oregon Health and Science , my first opinion. weren’t sure surgery was best

Terriebikes | @bicycle3 | Jan 21, 2023

In reply to @sonshine161 "Hi, I just had a left pneumonectomy on Nov 30. Upon further examination they tell me..." + (show)

Pray.
Second opinion?

Terriebikes | @bicycle3 | Jan 21, 2023

In reply to @barman "Thank you so much.. please do keep us updated." + (show)

Will do

mary64300 | @mary64300 | Jan 21, 2023

@sonshine161 you seem to be in very good hands, indeed.

zazu | @zazu | Jan 21, 2023

In reply to @sonshine161 "Thanks for your reply. I've been getting treated at Dana Farber. So you think I shouldn't..." + (show)

From what I’ve learned, Dana Farber is one of the top (if not THE top) sarcoma centers in the world. My tissues were sent there for pathology from Chicago

pb82 | @barman | Jan 21, 2023

In reply to @bicycle3 "Surgery 2021. Then chemo and radiation. The broken tibia, 2022, Dec radiation and chemo for spots..." + (show)

Thank you so much.. please do keep us updated.

mary64300 | @mary64300 | Jan 20, 2023

Second opinions are never a bad idea, i believe. To me, it helped me feel more in control to do something. I was on the fence, not knowing what to do but it is never a bad idea to get more informed.
It is not about questionjng a provider capabilities and knowledge. It is about finding your best chances against this disease.
Information, feeling like you can control a few things around you can help you too. Internet information is one thing but having another flesh and blood specialist talk with you is priceless.
Best that can happen, the second opinion agrees with the first one, and you can focus on healing 😊
Or you may have more choices availble to you for your care. I see that as a win win.

sonshine161 | @sonshine161 | Jan 20, 2023

In reply to @mary64300 "Hello Jeff. This is a long time to wait until May but your body may need..." + (show)

Thanks for your reply. I've been getting treated at Dana Farber. So you think I shouldn't wait until May?

Jeff

mary64300 | @mary64300 | Jan 20, 2023

In reply to @mp01 "Hi Mary 64300. Thank you for sharing your story. I heard other cancers, most people resumed..." + (show)

This is a very long and hard journey, since 2020. I understand the feeling of helplessness. It takes strength to keep going and at my stage i can only imagine.
My type of cancer also tends to recur often from what i read. Hence a “boosted” chemo treatment from the start.
But we never know so i prepare for the worse and hope for the best.
Thank you for the warm wishes. I will do my best like you do so well. Like you said, it is ultimately not in our hands.