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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.

sallymc | @sallymc | Mar 14 9:15am
In reply to @jkrause3 "have you had your surgery yet - Mine is scheduled for May 5th - I was..." + (show)
@jkrause3

have you had your surgery yet - Mine is scheduled for May 5th - I was told 7 to 10 days in hospital because of the flap - not looking forward to the hospital stay

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Yes. I had a pretty big tumor but was only in hospital 3 nights then rehab for a week

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jkrause3 | @jkrause3 | Mar 14 2:41pm

can I ask where the tumor was located

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arlin | @arlin | Mar 18 7:54am

My husband has been diagnosed with undifferentiated Pleomorphic February 2024 and received 24 Radiation sessions

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1 reply
jkrause3 | @jkrause3 | Mar 18 1:25pm
In reply to @arlin "My husband has been diagnosed with undifferentiated Pleomorphic February 2024 and received 24 Radiation sessions" + (show)
@arlin

My husband has been diagnosed with undifferentiated Pleomorphic February 2024 and received 24 Radiation sessions

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I have a Mycoid Liposarcoma of the Right Calf and I am scheduled for 25 Radiation Treatments - so far I have completed 12
Some fatigue ut generally feeling good - no pain
I am also in a Pre-Surgical trial for Physical Therapy to determine if this will help in the recovery after surgery

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kenroy | @kenroy | 2 days ago

I had fibroblastic soft tissue sarcoma.Dr shawtz at Vanderbilt removed a 13.5cm tumor from my leg. I have lost most of the feeling in my leg. I donated the tumor to the mayo clinic and did a12 week fitbit cancer study.im doing an mri and cat scan next mouth.no one in my family has had cancer

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Moderator
Colleen Young, Connect Director | @colleenyoung | 1 day ago
In reply to @kenroy "I had fibroblastic soft tissue sarcoma.Dr shawtz at Vanderbilt removed a 13.5cm tumor from my leg...." + (show)
@kenroy

I had fibroblastic soft tissue sarcoma.Dr shawtz at Vanderbilt removed a 13.5cm tumor from my leg. I have lost most of the feeling in my leg. I donated the tumor to the mayo clinic and did a12 week fitbit cancer study.im doing an mri and cat scan next mouth.no one in my family has had cancer

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Welcome, @kenroy. I moved your message about fibroblastic soft tissue sarcoma to the Sarcoma support group here: https://connect.mayoclinic.org/group/sarcoma/ where you can meet others with soft tissue sarcoma.

I'd be interested to hear more about the Fitbit study you did.

Did you have any treatment after surgery? How are you doing now?

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kenroy | @kenroy | 1 day ago

I'm ok the hospital gave me a fit bit to wear for 12 weeks I was getting a Weekly report I haven't heard anything since the study ended I believe they want me to do it again in a year the case was forwarded to Dr.andrew folpe at the mayo clinic think you for reaching out

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