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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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Moderator
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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Moderator
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 | Apr 24 6:07pm

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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susykdunn | @susykdunn | May 17 8:11pm
In reply to @boston2006 "My daughter was diagnosed with myofibroblastic sarcoma in 2006. Amputation at mayo. Have never met another..." + (show)
@boston2006

My daughter was diagnosed with myofibroblastic sarcoma in 2006. Amputation at mayo. Have never met another patient with same cancer. Would love to connect with anyone who may have had same cancer.

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I’ve just joined this group- I was diagnosed w myofibroblastic sarcoma about 18 months ago. How is your daughter doing? I also have never met anyone with this type

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1 reply
buugii | @buugii | May 19 4:16am

Hi,
I am wrinting from mongolia... my name is Bulgamaa...( Buugii).
my son has osteosarcoma on his left hand. from dec.2022 .
We underwent a total of 12 rounds of chemotherapy and joint replacement surgery. In February 2024, the treatment was completed, and now, Every month giving regular tests, he returned to his normal life.

I am very happy to contact you... I would like to collect a lot of information about this disease and I will be happy to share what I know and feel with you.

Thank you , Buugii
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1 reply
richard515 | @richard515 | May 19 6:22am

I am Richard. I am 70. I have differentiated chondrosarcoma. Primary site right femur bone and soft tissue. I have 5 secondary tumours. Right humerus. 3 in the left femur and one left hip. I am on a clinical trial using Tibsovo to address the IDH1 gene mutation. Next PET scan on the 29th May. Keen to hear from anyone who knows anything . Thank you.

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debscan68 | @debscan68 | May 22 6:29am
In reply to @mickeyambrose49 "Good morning! My heart goes out to you. Ie been praying for you since I read..." + (show)
@mickeyambrose49

Good morning! My heart goes out to you. Ie been praying for you since I read your comments yesterday. I didn’t have time to respond but I haven’t been able to get you out of my mind. You must be terrified. Those things they want to do to you to save your life will also remove your quality of life? Is that how you see it?? I know sometimes it seems like we are backed in a corner and we aren’t given a choice. My first oncologist at City of Hope said to me when I told her I didn’t want to take hormone blockers (for breast cancer I had removed)“what are your options?” That was a slap in my face. I realtor I want to live I have to take them. I getting ready to start my 4th hormone blockers. I have bad arthritis and when I take the hormone blockers I become crippled. I limp and I can’t get out of my chair. I’m not a heavy person so it’s not my weight. It induces excruciating pain in all my joints. It’s aweful. So idk what I’m going to do. Now I’m faced with this possibility of bone cancer and I hear your story and I just can’t imagine how you must feel. I’m so sorry you are going through all this. You have had to make some life preserving decisions and I’m sure it’s not been easy. Do you have family and friend support? I’m curious what your symptoms were. What brought you to the doctor in the first place? You are right. . . . You are too young to be going through all of this. Did they say what causes it? You said it’s possibly genetic so maybe that IS the cause. The doctors I see just keep telling me “you have bad genes.” 🥲 I will keep praying for you.

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How are you doing? I haven't been on here in quite a while. I had a successful surgery and now I am learning to walk on my own again. (I can walk but with a walker most of the time.) I still have pain after 6 months but I will have to wait about 1 year or so to find out where the pain will actually be for life. Now to get through my scans every 3 months without any setbacks. The colostomy doesn't bother me a bit but cathing myself? That's another story...I HATE it. I can't even wear underwear anymore. I'm stuck with the adult diapers. I guess I shouldn't ever complain because my AWESOME surgeon/Dr. has given me my life. I will be forever thankful for everyone that was involved in my surgery and care. I met a lot of great people being in the hospital for 1 month and then moving on to rehab. I was so happy to go home and have come a long way since surgery.

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Moderator
Colleen Young, Connect Director | @colleenyoung | May 24 9:29pm
In reply to @susykdunn "I’ve just joined this group- I was diagnosed w myofibroblastic sarcoma about 18 months ago. How..." + (show)
@susykdunn

I’ve just joined this group- I was diagnosed w myofibroblastic sarcoma about 18 months ago. How is your daughter doing? I also have never met anyone with this type

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Welcome, @susykdunn. I'm tagging @boston2006 to make sure they see your question to them. I'm also mentioning @truk182 who has experience with myofibroblastic sarcoma.

Susy this is a recent diagnosis for you. How are you doing? What treatment(s) have you had?

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