Diagnosed with sarcoma? Let's share

Welcome, @oldsailor71. Hearing from someone who has been there is encouraging. Reassuring that after surgery, you remain sarcoma-free for the past 22 years!

I have a very rare Sarcoma as well. It's called, Malignant Gastrointestinal NeuroEctodermal Tumors. When I was diagnosed in 2017, there were only 29 documented cases in the world. Most recently, I learned that number was about 120 cases worldwide. So it's still a fairly new diagnosis and unfortunately scientists/doctors don't have many answers for treating it since it's so rare and patients pass away rather quickly from it. I have been struggling to survive for 6.5 years now, but my body has gone through a lot and I'm not sure how much more treatment I can have because I'm so beaten up by all the treatments and the disease. If anyone else out there has this, I would love to connect with you! Kris

Wow! You have been going through so much. Just the name of this diagnoses is scary. I have a synovial sarcoma, one to three in a million get this rare cancer. For two years I went every 3 months for a CAT scan. This was in 2019. Now I go every six months since this is a reoccurring cancer. This, too, was in my gastrointestinal track. Was operated on in 2019 and growth removed. 2021 had colon cancer, operated and no further follow-up needed. Yearly endoscopy and colonoscopy. Advice: Stay positive! Don't worry about the past....stay present and be happy. Enjoy. Take care of yourself.

I am 27 years old. I was diagnosed in 2023 with grade 1 chondrosarcoma at the level of the pelvis (pubic bone). They told me that surgery must be performed before radiation therapy,I saw several surgeons, but they refused to perform it due to its difficulty. The only one who accepted the operation postponed it for six months. I do not know what I will do.

That is terrible. I don't know where you live? You may have to travel to a Cancer hospital.

Hope things work out for you.

I live in Algeria (North Africa). I do not think that I can afford treatment in America. I have information that the costs of treatment in America are high.

I would suggest looking for a European clinic. There are many clinics that specialize in cancer treatment who take international patients and are very good at what they do. Some have interpreters who can help with the technical language of medicine. They are not inexpensive but often much less expensive than the clinics in the USA. There is a group in Germany that can refer potential patients to clinics that specialize in the specific type of cancer that you need to have treated. I have also heard that there are excellent and very affordable cancer doctors in Turkey. I hope you find what you need to get well.

I have surgery on Mar 6 for an undifferentiated Pleomorphic
Sarcoma. Staged intermediate.

Hello @scrowe200 and welcome to Mayo Connect. I am glad that you found this forum as you approach this rare cancer diagnosis and surgery. How are you doing with this? Is this your first cancer diagnosis?

Yes. I hve never been ill.
I'm doing fine so far. Lots of energy as usual and taking care of my husband
who has had a stroke-8yrs ago.