Diagnosed with sarcoma? Let's share

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 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.

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...

Praying 🙏

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!!

Mickey
It's really hard when you are waiting to talk to docs about latest procedure. I had biopsy of growth on my left kidney on Monday and have to wait until next Tuesday to hear results and talk about what's next. I hope you get to talk to new doc about your xray results soon. Let us know what you learn?

@mickeyambrose49, I’m so sorry that you’ve had such a hard time with the doctors. Sometimes a change to a new oncologist is a good thing. The new doc brings a new perspective, but communication is vital in any relationship. When you talk with someone from the office, try asking, ‘what should I do if I don’t hear from you by X date/time’. Try to agree on expectations and backup plans. Sometimes getting to know the doctor’s nurse can be helpful in getting what you need.
It’s hard that it’s now the weekend, and you aren’t able to follow up with them on sending the scans and reports to Mayo. Call them first thing on Monday and ask what steps are involved. And ask if you are able to help speed the process along in any way? Ask when Mayo can expect to have the info, so you can follow up as needed. I agree that it shouldn’t be this difficult, but the reality is that managing complicated health systems with overworked staffs isn’t easy.
Knowing what you saw on the portal without additional details is difficult, and it’s normal for our minds to run wild. Try to take a deep breath and try to do things that have helped you get through difficult times in the past; get out into nature, watch a good movie to take your mind off things even for a little bit. Do you have a close friend or relative that you are comfortable talking to?

Thank you for your kind words. I have talked with my brother this morning and his wife and my husband too although he is going through radiation treatments rt now for prostate cancer. I try not to put too much on him. He’s had a rough journey but he is supportive. We are going to go to a movie and a few other things this weekend. I need a break from thinking about it . I work long hours so I really need city of hope to get those records to Mayo for me. I will call and message them Monday morning before I start working tho. Thanks again for your kind words. It means a lot. Do you know if they have a support group for Chondrosarcomas?

You have a lot on your plate right now. It's ok to feel overwhelmed, but I'm glad you'll be getting out to take your mind off of everything. Hugs to you, it's such a hard time.
I don't see a group specifically for Chondrosarcomas, but a search does show other posts, mostly in the Cancer group.

Thank you so much for researching this for me. I will definitely check out the cancer group . I appreciate you finding this information for me.