1. < Sarcoma
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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.

Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 9, 2019
In reply to @sherirp "Thanks so much for your reply! I am seeing a breast surgeon today and will know..." + (show)
@sherirp

Thanks so much for your reply! I am seeing a breast surgeon today and will know more about my sarcoma team. I know we can beat this!

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Hi @sherip how did the consult with the breast surgeon go? How are you doing?
@zazu, how are you? Did you ever consider genomic testing?

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2 replies
sherirp | @sherirp | Nov 9, 2019
In reply to @colleenyoung "Hi @sherip how did the consult with the breast surgeon go? How are you doing? @zazu,..." + (show)
@colleenyoung

Hi @sherip how did the consult with the breast surgeon go? How are you doing?
@zazu, how are you? Did you ever consider genomic testing?

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I have started aggressive chemo treatment first, then planning mastectomy in January. They will do genomic testing when I have surgery. I am currently doing well but just started chemo a few days ago.

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1 reply
zazu | @zazu | Nov 9, 2019
In reply to @colleenyoung "Hi @sherip how did the consult with the breast surgeon go? How are you doing? @zazu,..." + (show)
@colleenyoung

Hi @sherip how did the consult with the breast surgeon go? How are you doing?
@zazu, how are you? Did you ever consider genomic testing?

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I had my surgery 2.5 years ago. I am slowly feeling better. From what I understand, I am cancer free. If I get recurrence, then genomic testing would be done.

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creedyfly | @creedyfly | Dec 17, 2019

In July 2019, I was diagnosed with a Myxoid Liposarcoma in my right thigh (just above the knee). I completed the five weeks of radiation and was impressed with the professionalism and individual care provided by the radiation oncology department. Other than fatigue and the burn appearance to the leg (that really appeared two weeks after the completion of radiation), the radiation had minimal other side effects. The radiation worked well to minimize the impact of the tumor prior to surgery. Now two months following surgery (that was very impressively performed by the Mayo teams), I wonder how others with invasive leg surgery (particularly if there are others with functional flaps) worked through rehab. Chris

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 17, 2019
In reply to @creedyfly "In July 2019, I was diagnosed with a Myxoid Liposarcoma in my right thigh (just above..." + (show)
@creedyfly

In July 2019, I was diagnosed with a Myxoid Liposarcoma in my right thigh (just above the knee). I completed the five weeks of radiation and was impressed with the professionalism and individual care provided by the radiation oncology department. Other than fatigue and the burn appearance to the leg (that really appeared two weeks after the completion of radiation), the radiation had minimal other side effects. The radiation worked well to minimize the impact of the tumor prior to surgery. Now two months following surgery (that was very impressively performed by the Mayo teams), I wonder how others with invasive leg surgery (particularly if there are others with functional flaps) worked through rehab. Chris

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Welcome to Connect, @creedyfly. I'd like to introduce you to @kathythornjohnson and @godsgotthis, who also have myxoid liposarcoma. I hope they will return to share experiences with you.

In the meantime, back to you Creedyfly. Have you started rehab? What concerns you about rehab with composite functional thigh flaps?

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2 replies
mkgarrity | @mkgarrity | Dec 17, 2019

The coccus I’ve unit of centracare in St Cloud has benn very helpful. In particular, the exercises to increase my visual space borders This involves using thumb tracking excercises.

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creedyfly | @creedyfly | Dec 23, 2019
In reply to @colleenyoung "Welcome to Connect, @creedyfly. I'd like to introduce you to @kathythornjohnson and @godsgotthis, who also have..." + (show)
@colleenyoung

Welcome to Connect, @creedyfly. I'd like to introduce you to @kathythornjohnson and @godsgotthis, who also have myxoid liposarcoma. I hope they will return to share experiences with you.

In the meantime, back to you Creedyfly. Have you started rehab? What concerns you about rehab with composite functional thigh flaps?

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Really interested in the length of time to regain ability to walk and be less dependent? I am still no weight bearing for at least 30 days.

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1 reply
Lisa Lucier | @lisalucier | Dec 24, 2019
In reply to @creedyfly "Really interested in the length of time to regain ability to walk and be less dependent?..." + (show)
@creedyfly

Really interested in the length of time to regain ability to walk and be less dependent? I am still no weight bearing for at least 30 days.

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Hi, @creedyfly - I'd like to tag other members in this discussion who may have input on invasive leg surgery (particularly if there are others with functional flaps) and rehab, especially regarding the length of time to regain the ability to walk and be less dependent. Hoping @udderplace @kathythornjohnson and @godsgotthis will return and share any experiences they've had with leg surgery. Though this member talked about leg surgery for a different type of sarcoma, @boostar also may have some thoughts, as may @wsh66. I'd also like you to meet @merpreb.

creedyfly, wondering what your rehab has entailed thus far?

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1 reply
creedyfly | @creedyfly | Dec 24, 2019
In reply to @lisalucier "Hi, @creedyfly - I'd like to tag other members in this discussion who may have input..." + (show)
@lisalucier

Hi, @creedyfly - I'd like to tag other members in this discussion who may have input on invasive leg surgery (particularly if there are others with functional flaps) and rehab, especially regarding the length of time to regain the ability to walk and be less dependent. Hoping @udderplace @kathythornjohnson and @godsgotthis will return and share any experiences they've had with leg surgery. Though this member talked about leg surgery for a different type of sarcoma, @boostar also may have some thoughts, as may @wsh66. I'd also like you to meet @merpreb.

creedyfly, wondering what your rehab has entailed thus far?

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None yet. No weight bearing at this time.

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julie010 | @julie010 | Feb 25, 2020
In reply to @jeffk "Hello Deb, I hope that this note finds you in great health! My wife and I..." + (show)
@jeffk

Hello Deb, I hope that this note finds you in great health! My wife and I were at Mayo on Monday for my first full year annual check-up and I am delighted to report that I ma totally cancer free, the reconstruction sight looks pristine and there has been no shrinkage at the sight as well. I am exercising and running and having the time of my life with our grandchildren. I look forward to hear of your progress and wish you well. Your fellow survivor and thriver, Jeff

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I'm so glad to hear this news! Thank you for sharing your information -- as a new patient, I greatly appreciate it. Wishing you all the best.

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