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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.

luna6922 | @luna6922 | Sep 7, 2022
In reply to @colleenyoung "Hi @me67 @udderplace @brinys @deborahe @jeffk @Laydeewinx @sheila2005 @funkynotes @zshivaughn @jacobito @swstar, I'd like to invite..." + (show)
@colleenyoung

Hi @me67 @udderplace @brinys @deborahe @jeffk @Laydeewinx @sheila2005 @funkynotes @zshivaughn @jacobito @swstar,
I'd like to invite you to the new discussion group for people living with sarcoma. What type of sarcoma have you been diagnosed with? Are you currently in treatment or finished with treatment?

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Hello. I have been diagnosed with leiomyosarcoma last summer 2021 at Northwestern Memorial in Chicago.
I had a total hysterectomy. I am w the University of MN now after dealing w a mesothelioma expert while taking care of my Dad. Now last month found a spot in my lung. I'm currently being treated at the University of Minnesota but am not confident. I guess just confused. I want a second opinion. Do I need to ask the dr to refer me to Mayo and if so is there a dr that specializes in leiomyosarcoma? You all sound so brave. My brother says there is a treatment at mayo that called high intensity focused ultrasound (HIFU) that works on some cancers. Would this work on mine? I appreciate your time. Christine

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wretired2000 | @wretired2000 | Sep 6, 2022

My husband had a sarcoma that we saw on his tongue and extended into his throat. We went to Dana Farber in Boston. They said it came from radiation that he had 9 years ago in his throat. The good news that I will share with you is now his sarcoma is gone. He was treated with radiation and Avelumab (Bavencio). He does now have other issues that he is dealing with. His E N T scopes him monthly to check his throat. He has been cancer free for over a year.

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barney1520 | @barney1520 | Sep 5, 2022

Ya I’m worried this is just a temp fix. In the long run. This crap will win sooner or later. Ugh.

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vivianfromaz | @vivianfromaz | Sep 5, 2022

Barney, we have an extremely rare and dangerous disease. Mine is sarcoma of the soft tissue and first appeared on my back around the shoulder blade. I've had surgeries chemo, radiations. Keep asking your doctor. Why so many? Are there alternatives? (Fewer treatments?) It's a lot to take in especially at the beginning. Sorry I can't be of more help.

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barney1520 | @barney1520 | Sep 4, 2022

Hello I’m Barney
1 Aug 22 I was diagnosed with angiosarcoma in my neck. Iv head surgery to remove all the lymph nodes and any sign of a tumor from my neck. Still recovering from surgery. I have been told I need 30 rounds of proton therapy for my neck. But no chemo at this point. Now if the cancer is removed why would I need 30 rounds of proton. That seams a bit much. With this being such a rare cancer I can’t find a whole lot on it. Does anyone know where to find more info or can help me out. Thank you.

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vivianfromaz | @vivianfromaz | Aug 19, 2022
In reply to @whpsurvivor2022 "I was diagnosed with high grade de-differentiated liposarcoma in May 2017 in the upper right chest..." + (show)
@whpsurvivor2022

I was diagnosed with high grade de-differentiated liposarcoma in May 2017 in the upper right chest wall. Following 2 surgeries to both remove the mass and rebuild my chest I have been living cancer free for five years.

Last week a lump was identified on my right femur. I met with my surgeon and we have scheduled an MRI for next Monday.

I am a wreck.

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Yes times like these are very difficult. I have sarcoma diagnosed 2018 and have been in constant treatment. Find a supportive and loving friend! Hugs!

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whpsurvivor2022 | @whpsurvivor2022 | Aug 18, 2022

I was diagnosed with high grade de-differentiated liposarcoma in May 2017 in the upper right chest wall. Following 2 surgeries to both remove the mass and rebuild my chest I have been living cancer free for five years.

Last week a lump was identified on my right femur. I met with my surgeon and we have scheduled an MRI for next Monday.

I am a wreck.

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2 replies
sanzbozo | @sanzbozo | Jul 7, 2022
In reply to @colleenyoung "@sanzbozo, I want to add my welcome along with @damlady2 and @vivianfromaz. I hope you saw..." + (show)
@colleenyoung

@sanzbozo, I want to add my welcome along with @damlady2 and @vivianfromaz. I hope you saw their posts to you.

Have you heard from Barnes? How are you both doing?

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No we have not heard from Barnes yet. Eldon was supposed to have a PET scan yesterday, and they had to cancel due to his high sugar. He has 20% of his pancreas left, and as a result of that, is a type 1 diabetic. Luckily, we got another one scheduled on the 18th of July.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 7, 2022
In reply to @sanzbozo "My partner of 17 yrs had a malignant nerve sheath tumor on his right arm in..." + (show)
@sanzbozo

My partner of 17 yrs had a malignant nerve sheath tumor on his right arm in 2021. We first noticed a lump about March of 2021 and thought it might be a Lipoma, we watch Pimple Popper, and it grew pretty quick which I Googled and did not like what I kept seeing. He has VA and Medicare is now 61 will be 62 this August. He had a biopsy in August of 2021, which required 13 staples. After the staples were removed, the tumor started coming out the site of the biopsy! It was unreal. He began radiation in Oct. which to me was too long to wait while this thing was growing out of his arm. He completed 26 days of radiation, had a surgery to remove on Dec 22 2021 what was left of the tumor, only to have it come back. On the 4th Feb. of 2022 he had to have his right arm and shoulder amputated. I'm trying to be brief and clear at the same time, so bear with me. I took him to the ER on June 6th for high blood pressure and high blood sugar, they ran a lot of tests and saw nodules in his lungs. A later biopsy showed it was cancer. We went to see an oncologist on June 24th Friday , we had a surgical one not a regular one at this time, and he told us it was stage 4 sarcoma. This oncologist said he was not familiar with this type, and will be sending us to St Louis which is 4 hours one way. Eldon is my husband's name, I'm Marie. He is in pain pretty much all the time. We are waiting for a PET scan appointment and a date for a doctor at Barnes Jewish Hospital. That's where we are at now.

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@sanzbozo, I want to add my welcome along with @damlady2 and @vivianfromaz. I hope you saw their posts to you.

Have you heard from Barnes? How are you both doing?

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vivianfromaz | @vivianfromaz | Jun 30, 2022

Dear Marie and Eldon, Yes, it's terrifying and a very stubborn cancer. I also have stage 4 sarcoma and highly recommend hospital that specializes in sarcoma. We keep you in our prayers and wish you a good outcome in St. Louis.

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