Diagnosed with sarcoma? Let's share

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 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.

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 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

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

Sorry to hear that! Very lucky stage 1. Take care and good luck.

I had chondrosarcoma in 2002 for two weeks. A lump on my sternum was growing, lump removed, lump was sarcoma growing in rib. pieces of 3 ribs and pieces of sternum removed, gore-tex patch sown on. no sign or symptoms since. last CAT scan was 2 weeks ago.
all I have to pass on is get that lump or bump that lasts more than a week looked at. My tumor was grade 1, very early.

No, follow-up after surgery. Just CAT scans every 6 months and endoscopy and colonoscopy once a year. I'm 82.
No radiation, no chemo. I hope things stay that way. Thanks for asking.

My 44 year old son had a large monophasic synovial leiomyosarcoma removed October 2022 followed by radiation. Recent PET CT found a new small tumor in his right axilla and left lung. He started chemotherapy 3 weeks ago about to start round two. It is the only solution. Has chemotherapy been advised in your case?

I have. been diagnosed with a synovial sarcoma. Was operated and removed December 2019. I get CAT scan every six months followed by visit to my oncologist. Since it larger, I was told that it can reoccur. Constant worry about that. Any advice.