Diagnosed with sarcoma? Let's share

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?

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.

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.

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.

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.

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.

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

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

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 .

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