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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.

Lynne Marie | @lbrockme | Apr 9 6:31pm

I am so sorry you are having to face this. Proton therapy is very targeted and they have come a long way in treatments for most cancers over the last decade. I do know proton therapy can make you very fatigued, so prepare for that. Having someone to drive you to and from appts is helpful.
I found it helpful to have a list of my questions written down to take into my oncologist. Consider a second opinion from someone who has experience with this cancer if possible, or a large cancer center, Mayo etc.
Ask questions like
Length of treatment, Recovery time, food restrictions and Special accommodations required, how to build up immune system etc
Wishing you the best!

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Colleen Young, Connect Director | @colleenyoung | Apr 12 4:16pm
In reply to @helenjr "Actually, it turns out not to have metastasized at all! It’s a complicated story, but the..." + (show)
@helenjr

Actually, it turns out not to have metastasized at all! It’s a complicated story, but the tumor they found in my lungs is not the same cancer as the sarcoma and apparently treatable. It’s been a rollercoaster ride for sure. Thanks for your kind response. BTW, I will be treated with radiation for the tumor on my arm.

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@helenjr, is it a tumor or nodule in your lung? Is it a second primary?

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Colleen Young, Connect Director | @colleenyoung | Apr 13 2:48pm
In reply to @ericschisler "Hi. I was diagnosed with soft tissue scarcoma in the left atrium. Primary heart tumor UPS...." + (show)
@ericschisler

Hi. I was diagnosed with soft tissue scarcoma in the left atrium. Primary heart tumor UPS. Very rare. I am told only 100 cases occur each year, Started Immutherapy. May be doing shortly Proton therapy. Looking for advice. Thanks

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Welcome, @ericschisler. You may be interested in this related discussion to connect with others with UPS
Undifferentiated Pleomorphic Sarcoma
https://connect.mayoclinic.org/discussion/sarcoma-256d3d/

And this podcast
Proton beam therapy spares surrounding tissue when treating bone cancer https://connect.mayoclinic.org/blog/podcasts/newsfeed-post/proton-beam-therapy-spares-surrounding-tissue-when-treating-bone-cancer/

While not UPS of the heart, @me67 also had proton beam therapy for UPS.

Eric, what type of immunotherapy are you on? How is it going? Is this a recent diagnosis for you?

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ggarca | @ggarca | Apr 13 5:02pm

Hi everyone, just wanted to share some information about my journey with Kaposi Sarcoma. I grew up in Terceira Island, specifically near Lajes Air Base in Praia da Vitória, Terceira Island in the Azores, Portugal, before moving to Canada in 1977. I've been through 14 chemo treatments so far and although we’ve seen some improvement my oncology team wants to have me continue with the treatments.
Recently though, I’ve come across some articles and research about an unusual number of cancer cases in that area, possibly linked to chemical disposal practices near the US Army base. I believe the it’s US Airbase #65 which has been operating in the region. I grew up literally in the middle of the base. My entire family form parents to siblings have all had some sort of cancer, birth defects, there skin conditions and recently me. Has anyone else from that region, similar stories, or insights?
Thank you.

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Moderator
Colleen Young, Connect Director | @colleenyoung | 5 days ago

Great news. Mayo Clinic Connect now has a forum dedicated to sarcoma!

To all members @me67 @udderplace @brinys @deborahe @jeffk @Laydeewinx @sheila2005 @funkynotes @zshivaughn @jacobito @swstar @ggarca @markgventnor @tim59 @lhduvall @jspr422 @verena @dhellberg @scrowe200 @ksnozal @lunamay @casgarcia @oldsailor71 @nanee1 @skullbasecancer4 @mpd1919 @todr @janezum @bardona @kathifleming @newsha @joan450 @joe1955 @yellowdoggirl1 @mulkey518 @mimih @everythinglucky and the many of you I've missed.

I invite you to go to the new support group page here:
- Sarcoma Support Group https://connect.mayoclinic.org/group/sarcoma

Follow the group to include it in your daily digest and get notifications of new posts and activity. Here's how:
1. Go to https://connect.mayoclinic.org/group/sarcoma
2. Click "Follow"

That's it. To get more tips on starting a discussion, follow a group, setting preferences and more, see the Help Center https://connect.mayoclinic.org/help-center/

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