Anyone else with sarcoma that originated in the brain?

Posted by Monica Rose @monicadinslage, 2 days ago

I’m 36 and was recently diagnosed with CIC-rearranged intracranial sarcoma. It is an extremely rare and very aggressive type. I had a craniotomy July 2025 for a full resection and will be starting proton beam therapy soon at Mayo. Anyone else with sarcoma that originated in the brain? There’s not much research on it and apparently radiation and resection is the primary treatment. It sounds like it doesn’t typically respond to the standard Ewing’s sarcoma chemo treatment regimen and recurrence after radiation is common.

Interested in more discussions like this? Go to the Brain Tumor Support Group.

Colleen Young, Connect Director | @colleenyoung | 2 days ago

Hi @monicadinslage, welcome. I added your discussion to the Sarcoma support group as well as the Brain Tumor support group. It sounds like you have a unique and rare situation. You will be in good hands at Mayo Clinic. I'm so glad that you are able to travel there for proton beam therapy.

How is your recovery from surgery going? When will you be traveling to Mayo Clinic and which location?

Monica Rose | @monicadinslage | 2 days ago

Thank you! I’m doing ok post-surgery, having lots of side effects from meds and also been having seizures that have been hard to control. Good days and bad days for sure! I’ll be going to Rochester, not sure exact dates but within the next couple weeks!

Colleen Young, Connect Director | @colleenyoung | 2 days ago

In reply to @monicadinslage "Thank you! I’m doing ok post-surgery, having lots of side effects from meds and also been..." + (show)

I'm assuming this might be your first visit to Mayo Clinic. You will find some helpful travel tips and how to prepare in the Visiting Mayo Clinic support group here: https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/

If you're bringing your family, you can even find tips on activities for kids and more.

I'm sorry to hear about the seizures. That must be unsettling (to say the least), not knowing when they might happen, etc. While @karinav4236 has a different type of brain tumor, she started this discussion that you might wish to read or comment on.

- Diagnosed with Meningioma: Worried about another seizure https://connect.mayoclinic.org/discussion/diagnosed-with-meningioma-on-011325/

I'm also tagging @maraissteyn, who I believe may have a similar experience with a brain sarcoma that she posted about here:
- Was diagnosed with gliosarcoma while taking part in a sporting event https://connect.mayoclinic.org/discussion/was-diagnosed-with-bliosarcoma-while-taking-part-in-a-surfski-qualifyi/

Monica, let me know if you have any questions so I can help get you connected with members like you.