Diagnosed with sarcoma? Let's share

Hello @nanee1

I'm sorry to hear that you are feeling so bad. I'm assuming that you are having side effects from the chemo. Is that correct?

If that is the case, you might consider talking to your doctor's office to see if there are medications available to help with the side effects.

What are the worst symptoms you are having right now?

Hello everyone. I am Khushi and have been operated for borderline malignant Phyllodes in the left breast in 2019 (without radiation ). It reoccurred in the same area ( local recurrence ) in feb 2023 and this time it was categorised as chondrosarcoma and osteosarcoma. We again did radical mastectomy and got the entire left breast removed , this time followed by 28 session of. Radiotherapy. The current PET scans of sept 2023 are showing spread in the lungs. Wanted guidance from all of you regarding personal experiences or recommendations of the line of treatment that we should opt as this is a third recurrence. What is the latest line of treatment adopted for such a disease and how can we tackle this in the best possible way. Lots of love and strength to all going through this.

I have leiomyosarcoma. I have a mass on my liver. The cancer has spread. I am in my 5th day after the chemo infusion. Pretty miserable. I don't know that I will continue the chemo. I am in my mid 80's. Trying to be positive & praying.

Thanks for the information.

Memorial Slian Kettering has a new trial but you have to have a certain mutation. Here is a link to all their trials for synovial sarcoma.
https://www.mskcc.org/cancer-care/types/soft-tissue-sarcoma/clinical-trials

I had my first surgery on August 11th. Right now there are no treatment plans in place. When the larger tumor was removed, the doctors had no idea what type of cancer I had. They first told me that I had stage 4 Lung Cancer. They had several multidisciplinary meetings trying to determine what type of cancer I have. I was diagnosed with cancer in June and had a needle biopsy (of the large tumor) in July. They couldn't determine the cancer type from the first biopsy so they decided to remove the smaller tumor. They just found out on Wednesday (9/27) what type of cancer I have. I see a specialist on Wednesday this week to hopefully discuss a treatment plan.

Hello @everythinglucky and welcome to the Cancer support group discussion on Mayo Connect. I'm glad that you found this forum. It is a great place to share your experiences and encourage others as well as be encouraged by the stories that others will share.

I see in your post that you have had one tumor removed. How long ago was that surgery? What type of treatment plans are being explored regarding the larger tumor near the heart?

I am 48 and was recently diagnosed with Synovial Sarcoma in my mediastinum. I am trying to learn more also. I was told this type of cancer is really rare and the location of mine is extremely rare. Blessings to you and your nephew.

I was recently diagnosed with Synovial Sarcoma. I had one tumor in my left lung and I have a large tumor in my mediastinum (near my heart). The doctors are trying to determine a treatment plan to remove the large tumor. The surgeon who removed the small tumor said that he would not operate on me to remove the larger tumor because the surgery would be too risky. I hope your niece get better with the treatments she is taking. I am in a waiting stage. I don't know if they are going to operate or give me treatments first. It took them three months to determine what type of cancer I had. Blessings to you and your family.

Here, I am with an update! Feeling, overwhelmed! I saw my oncologist at city of hope (COH) on Monday and she wants me to try the a fourth hormone blocker. Side effects are not something that I can live with and work. But that is the least of my worries right now I still away appointment with mayo clinic and little over two weeks from now for the huge 10cm x 2.2cm endochondroma which may actually be a Chondrosarcoma of my rt femor. My PCP and my oncologist fused to order an MRI for it and tell me I have to wait until I see mayo clinic. I have already waited a month. Two more weeks to go and hopefully I will have some answers as to what this thing is in my leg. On top of that when I saw my oncologist on Monday, she told me that my bloodwork revealed that I may have bone cancer. She said that she wanted to draw my blood again in two weeks and if it still looks like this, then she wants to do a bone marrow biopsy. It just seems as though my whole body is being eaten up by cancer and I am getting so tired of fighting it already because I can’t get anyone to listen to me or talk to me or see me. They just tell me I have to wait. And wait some more. Yet they tell me that cancer doesn’t wait. That is what the advertisement for COH on TV says cancer doesn’t weight, but they just keep telling me to wait. I almost feel like I am living in a Third World country because I can’t get a doctor to see me unless I wait and I certainly have no one to talk to about it. My oncologist at COH told me she could not speak to me about tumor in my leg and she did not want to share much information with me about the possibility that I might have bone cancer until she finds out for sure. So they just scare me and then send me home.