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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.

lunamay | @lunamay | Feb 16 1:06pm
In reply to @colleenyoung "@lunamay, so many surgeries. I can imagine they are getting harder to deal with and harder..." + (show)
@colleenyoung

@lunamay, so many surgeries. I can imagine they are getting harder to deal with and harder to recover from. The new tumors are also in your lower left leg?

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Yes. They have all been between my ankle and mid calf. One at a time,then last year I had 3 at once. Now I have 4.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 15 8:05pm
In reply to @lunamay "I have been fighting fibro sarcoma since 2017. So far I have had 8 tumors removed..." + (show)
@lunamay

I have been fighting fibro sarcoma since 2017. So far I have had 8 tumors removed and have found 4 more. I'm so tired of surgeries and they are getting harder and longer to recover. They are in my left lower leg and because of last surgery I have to use a walker all the time or a wheelchair. There's been too much nerve damage. Waiting on Dr to let me know what we can do.

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@lunamay, so many surgeries. I can imagine they are getting harder to deal with and harder to recover from. The new tumors are also in your lower left leg?

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 15 3:39pm
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.

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@mpd1919, all the best with your upcoming appointment. Were you recently diagnosed with sarcoma? What type? Is you upcoming appointment to discuss a treatment plan?

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markgventnor | @markgventnor | Feb 15 12:40pm

Thanks for doing this. It is great to speak with others who have experienced
the rare cancer. As I noted I have a synovial sarcoma. Operated in December 2019 at the same time I had a gastric hernia that was so large that my intestines feel in there. It was a mess. Just wonder if anyone else had the gastric nose tube during their hospital stay?

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lunamay | @lunamay | Feb 14 6:44pm

I have been fighting fibro sarcoma since 2017. So far I have had 8 tumors removed and have found 4 more. I'm so tired of surgeries and they are getting harder and longer to recover. They are in my left lower leg and because of last surgery I have to use a walker all the time or a wheelchair. There's been too much nerve damage. Waiting on Dr to let me know what we can do.

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1 reply
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.

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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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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 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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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

Jump to this post

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 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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