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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.

nanee1 | @nanee1 | Feb 3 5:15pm
In reply to @casgarcia "Would love a pic of chemo Carl. He also has leiomyosarcoma that started in the muscle..." + (show)
@casgarcia

Would love a pic of chemo Carl. He also has leiomyosarcoma that started in the muscle under his right arm. His tumor grew to 900 grams in 3 months, explosive growth, treated with surgery and radiation in October 2022. It has resurfaced in his right axilla and there is a suspicious lesion in his left lung. Started chemotherapy this week. He is 44 years old. I retired in Merida, Mexico. When he was diagnosed he didn't have health insurance so he flew to Merida where he got FAST skilled excellent medical care. Now he has BCBS Florida insurance and it looks like we'll be able to use it here to defray the cost of chemotherapy.

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Let me know if you receive the picture of Chemo Carl.

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nanee1 | @nanee1 | Feb 3 5:23pm
In reply to @casgarcia "Would love a pic of chemo Carl. He also has leiomyosarcoma that started in the muscle..." + (show)
@casgarcia

Would love a pic of chemo Carl. He also has leiomyosarcoma that started in the muscle under his right arm. His tumor grew to 900 grams in 3 months, explosive growth, treated with surgery and radiation in October 2022. It has resurfaced in his right axilla and there is a suspicious lesion in his left lung. Started chemotherapy this week. He is 44 years old. I retired in Merida, Mexico. When he was diagnosed he didn't have health insurance so he flew to Merida where he got FAST skilled excellent medical care. Now he has BCBS Florida insurance and it looks like we'll be able to use it here to defray the cost of chemotherapy.

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I just wanted to let you know that my latest scan also showed that my cancer is still contained. Chemo really did a good job for me. Oncologist switching me to pills as soon as the Insurance approves. Keep a positive attitude, no negative thoughts allowed. Keep me informed.

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1 reply
ksnozal | @ksnozal | Feb 4 8:15am

Thanks for starting this Colleen. When I was diagnosed with my Sarcoma, there were only 29 diagnoses in the world, today it’s around 120, but that’s still a very small number. With the disease being so rare and new, we have limited data and treatment options.
The Sarcoma I have is Metastatic Gastrointestinal NeuroEctodermal Tumors. I posted a message about this disease a few weeks back to see if anyone else out there has it. It would be nice to be connected with other patients that have it or other Sarcoma survivors as well. Kris

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2 replies
skullbasecancer4 | @skullbasecancer4 | Feb 5 9:30am
In reply to @ksnozal "Thanks for starting this Colleen. When I was diagnosed with my Sarcoma, there were only 29..." + (show)
@ksnozal

Thanks for starting this Colleen. When I was diagnosed with my Sarcoma, there were only 29 diagnoses in the world, today it’s around 120, but that’s still a very small number. With the disease being so rare and new, we have limited data and treatment options.
The Sarcoma I have is Metastatic Gastrointestinal NeuroEctodermal Tumors. I posted a message about this disease a few weeks back to see if anyone else out there has it. It would be nice to be connected with other patients that have it or other Sarcoma survivors as well. Kris

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Hi. My husband was diagnosed 27 years ago with a chondrosacroma of the skull had surgery and radiation but it returned this past year . He had surgery again but could
Not get it all because it was to close to curated artery and can’t do radiation and chemo . We just wait to see what happens next . It more aggressive this time . He is scanned every 6 months . We go to the the University of Miami for all treatment . Where do you go ? How do you feel? I have been trying to connect with other s, who had his type too, but it’s impossible. I wish you only the best and what type of treatment and or surgies have you had . He is 57 now .

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nanee1 | @nanee1 | Feb 11 10:36am
In reply to @nanee1 "I just wanted to let you know that my latest scan also showed that my cancer..." + (show)
@nanee1

I just wanted to let you know that my latest scan also showed that my cancer is still contained. Chemo really did a good job for me. Oncologist switching me to pills as soon as the Insurance approves. Keep a positive attitude, no negative thoughts allowed. Keep me informed.

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I also am wondering if anyone has been treated with Voltrient for their sarcomas? It seems complicated and also many side affects.

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markgventnor | @markgventnor | Feb 12 10:10am

Thanks for the information. Great to share with others who been in the same situation.

I am looking to connect with someone who has/had a Synovial Sarcoma. I was operated in 2019 and had it removed. Because of the size, I was told it was large and could reoccur. Any information is appreciated.

Thanks,
Mark

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1 reply
casgarcia | @casgarcia | Feb 13 9:33am
In reply to @markgventnor "Thanks for the information. Great to share with others who been in the same situation. I..." + (show)
@markgventnor

Thanks for the information. Great to share with others who been in the same situation.

I am looking to connect with someone who has/had a Synovial Sarcoma. I was operated in 2019 and had it removed. Because of the size, I was told it was large and could reoccur. Any information is appreciated.

Thanks,
Mark

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My 44 year old son had a huge monophasic synovial sarcoma surgically removed in October 2022 followed by 6 weeks of daily radiation. He was followed with PET CT every 4 months. Negative in September 2023 but positive for a new tumor in his right axilla and left lung in January 2024. Chemotherapy was advised and started 2 weeks ago. This is a rate cancer, 1 to 3 per million, but very susceptible to chemotherapy. Hoping for the best. So far, so good. He is being treated in Merida, Yucatan, Mexico where costs are 30 to 70% less but the medical expertise is excellent and personal.

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1 reply
markgventnor | @markgventnor | Feb 13 1:56pm
In reply to @casgarcia "My 44 year old son had a huge monophasic synovial sarcoma surgically removed in October 2022..." + (show)
@casgarcia

My 44 year old son had a huge monophasic synovial sarcoma surgically removed in October 2022 followed by 6 weeks of daily radiation. He was followed with PET CT every 4 months. Negative in September 2023 but positive for a new tumor in his right axilla and left lung in January 2024. Chemotherapy was advised and started 2 weeks ago. This is a rate cancer, 1 to 3 per million, but very susceptible to chemotherapy. Hoping for the best. So far, so good. He is being treated in Merida, Yucatan, Mexico where costs are 30 to 70% less but the medical expertise is excellent and personal.

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I am so sorry to hear about you son. The surgery was bad enough and now this. I hope that he is tolerating the chemo and wish him the best. He is so young. I will be 82 in June. I feel good. Am scheduled for endoscopy and colonoscopy
in mid April. Last year I had a colon resection. Did not need anything after that as far as treatment, Stage one. I have a difficult time eating. I am never hungry. I worry about that.
How long will your son be on chemo? Please keep me informed of his progress. He will be in my prayers. Wishing him all good things for the future.

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mpd1919 | @mpd1919 | Feb 13 8:44pm
In reply to @ksnozal "Thanks for starting this Colleen. When I was diagnosed with my Sarcoma, there were only 29..." + (show)
@ksnozal

Thanks for starting this Colleen. When I was diagnosed with my Sarcoma, there were only 29 diagnoses in the world, today it’s around 120, but that’s still a very small number. With the disease being so rare and new, we have limited data and treatment options.
The Sarcoma I have is Metastatic Gastrointestinal NeuroEctodermal Tumors. I posted a message about this disease a few weeks back to see if anyone else out there has it. It would be nice to be connected with other patients that have it or other Sarcoma survivors as well. Kris

Jump to this post

I want to comment so I can come back to this post!
I stumbled across this post by my phone listening to me… I have a drs. Appt at the end of this month.

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2 replies
markgventnor | @markgventnor | Feb 14 1:00pm
In reply to @mpd1919 "I want to comment so I can come back to this post! I stumbled across this..." + (show)
@mpd1919

I want to comment so I can come back to this post!
I stumbled across this post by my phone listening to me… I have a drs. Appt at the end of this month.

Jump to this post

Hi! I am a survivor of a synovial sarcoma, very rare. I have to have CAT scan every 6 month and see oncologist after testing. Unfortunately, this cancer returns if it is above a certain size. Mine was above. So I am always worried when I have the testing. So far, I am good. Wish you the best.

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