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Diagnosed with sarcoma? Let's share

Sarcoma | Last Active: 1 day ago | Replies (808)

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@mickeyambrose49

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!!

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Replies to "It’s been a long week. Pea sized mass (ILC) and 3 lymph nodes (1 cancer) removed..."

@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?