Diagnosed with sarcoma? Let's share

It’s been a long week. Pea sized mass (ILC) and 3 lymph nodes (1 cancer) removed jan 2023. Radiation in April 2023 but not to my lymph nodes. ??? After months of complaining that I don’t feel well and being told it’s the side effects of the hormone blockers my oncologist transferred me but ordered a bone and brain scan on my way out to prove to me that I don’t feel well because of the side effects of the AI. I finally got to see new oncologist Monday this week but she didn’t know why she was seeing me. I asked her to go over the bone scan done in June or July and she argued that the last oncologist had already gone over it with me. She finally reviewed my bone scan and with shock in her eyes and voice she said “you have a spot on your femor. I have to get you to X-ray. I’ll get the results to you rt away. They did the X-ray immediately. I didn’t hear anything Tuesday or Wednesday. So finally at 3pm wed I left a VM that I would like results of X-ray. At about 5pm a message popped up in the hospital portal stating that I have a 10cm x 2.2cm endochondroma with a large Chondrosarcoma with in it on my rt femor above my knee. I was devastated to learn this news through portal message where I could not ask questions . I had no idea what this was. I had to google what it was and found it is bone cancer. Google also told me I need a biopsy to confirm it. I’m awaiting an appt with ortho surgeon at Mayo but relying on my oncologists’ nurse to send the referral to them. I’m not thinking it will happen any time soon. I’m so sad I have been treated like this. And so scared of what the treatment might be because the majority of my pain has been in my hip for over a year. How do they remove that cancer? Scary thought!!

Praying 🙏

I was diagnosed with Leiomyosarcoma in May of 2021. I had surgery in July that removed a stage 2 tumor that involved my IVC vein in which they put a graft instead. I lost my right kidney, they took part of small intestion, and small bowel. After the surgery I started bleeding internally, and needed 7 blood transfusions.
In remission since recovery, but now the most recent CT scan shows a new growth in my liver. I had a biopsy this week, waiting for results to see what happens next...

I too had a solitary fibrous tumor of the brain.WHO grade 3
6 weeks of daily radiation.
Finished rad. On Ma 15.
PET scan yesterday…. No metastasized to any other places!
MRI scheduled for June 28 to see if tumor is gone/shrunk.
Trying to eat healthy, walk and do yoga. And pray.
Tumor is rare and not much info about it.
Would love to connect with someone who has had this type of tumor.
So uncertain about my future.

Thank you for your reply and sharing your experience with me. You've made me feel better and given me more confidence about having radiation treatments. Much appreciated.

I am not familar with your type of tumor, but I had a DERMATOFIBROSARCOMA in 1988. It was removd with a wide recission and a rotator flap to fill up the whole left in my leg from the surgery. It was necessary to take wide margins to guarantee all of the tumor had been removed. At first they had thought about inserting radiation sticks, but later decided against it. I can thankfully say there has been no recurrence and I am now 92 years old. I hope you will have equally good results, and remember Life is Good, and enjoy every moment you have been given.
God Bless you
Gina5009

I have esophageal cancer that spread to my collar .No surgery or radiation.
Two cemo'sand a cocktail for 6 treatments at every other Wednesday. 9 down 3 to go
Probably will need something else because the Doctor said it will be about two years

@darmenta1122 My Daughter has a mass removed from her back on May 5th 2023. Tests results came back positive or Alveolar Soft Tissue Sarcoma. She is scheduled for MRI and CT scan on Friday the 16th. I am trying to get her to the Mayo Clinic or MD Anderson. Can you tell me where your sister is being treated and what type of treatment they are doing? We are looking for a specialist in Sarcoma. They said she will need a second surgery to go in and make sure all the bad tissue has been removed as well as tack out good tissue around the infected area.

I have Synovial Sarcoma which started with a small bump on my calf. After having it removed and radiated, all looked good until it returned a year later. It had metastasized to my lung. Because of my age (75) and unlikely cure or help with chemo and other drugs - as well as side affects, I decided to go on palliative care and chose quality of life. I’m in good shape, feel fine and quite a lot of energy. I’m enjoying my family and making memories.
My biggest concern is loneliness.

Welcome @fighter123. While solitary fibrous tumors are rare, @suemarie3 also joined very recently and has a similar diagnosis, but in the brain not the lung. I encourage you to start a new discussion in the Cancer Support Group about solitary fibrous tumors. Here's how:
1. Go to the Cancer support group https://connect.mayoclinic.org/group/cancer/
2. Click Start a new discussion
3. Enter a question or topic and add your message and mention @suemarie3 to join you.