Diagnosed with sarcoma? Let's share

My undifferentiated sarcoma was removed from my knee and on my five year anniversary of being cancer free several spots were seen in my lungs. I’ve had surgery to remove the two largest nodules a few months ago. Now just waiting anxiously until the next CT scan to see if other nodules have grown and can be surgically removed. I’ve joined a sarcoma cancer support group (virtually) hosted by Memorial Sloan Kettering and would be happy to share the link to application if you’re interested.

I was recently diagnosed with chondrosarcoma on my sacrum. I finally have an appt at Mayo on August 29th. I have lots of pain and really looking forward to working with the specialists there. I went through 5 different Dr's until I finally drove myself to the ER. They finally did a CT and found the mass. I knew for months that something was going on and finally someone listened. This could've been taken care of months ago. Instead I lived in severe pain for months. So happy my oncologist referred me to Mayo.

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.

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 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?

@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?

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!!