Diagnosed with sarcoma? Let's share

Welcome @amybr. This must sound all so frightening to remove and replace the sacrum, and potentially the loss of a limb.

To help you both prepare the ostomies for bladder and colon, you may also wish to join the discussions in the Ostomy support group:
- Ostomy support group https://connect.mayoclinic.org/group/ostomy/

To get started with getting a second opinion at Mayo Clinic, you'll find everything you need here: http://mayocl.in/1mtmR63

You can contact Mayo Clinic by phone and speak directly with a coordinator. Or fill out some information using the online form and request a specific time to be called back by the coordinator.

I'm so glad that his cancer responded well to chemotherapy and that the cancer shrunk significantly to allow surgery to be possible.

I am writing for my husband. He has been diagnosed with Spindle Cell Sarcoma on his sacrum & right side sciatic nerves. He has had 5 rounds of chemo & it has shrunk significantly & now they want to do surgery. We just found out yesterday that they want to remove & replace his sacrum. This has affected his right side & they let us know that he will be able to keep his leg now but will have alot of numbness & will also have to have 2 bags for his bladder & colon. We have lots more questions for them but would like a 2nd opinion from Mayo. Trying to contact someone today.

I am sorry for what you are going through. Believe me, you are at the right place. I was diagnosed with Pleomorphic Liposarcoma in 2017. Because of the rarity of my condition I was referred to Rochester Mayo. Their ability to diagnose, confer, communicate and treat is nothing short of amazing. I wish you all good fortune going forward.
One day at a time!

Prayers to you and yours.
It is so disappointing to see cm increase!!!

Hi everyone. I was diagnosed in September with a malignant peripheral nerve sheath tumor on my lumbar spine. I completed 5 weeks of radiation a week ago, then had an MRI a few days ago which showed the tumor is a few cm larger than it was in Sept. Surgery is next but I have to wait for the skin on my back to heal from the radiation and also need a pacemaker because of a low heart rate.

What is the best treatment after surgery for ossifying fibromyxoid tumor.

I was just diagnosed with ossifying fibromyxoid tumor.

Wish I did.
I think you are at the best in research.
I use Doxil chemo and radiation.
And mental psych therapy.
Art therapy, and religious group therapy.

Hello, My 30yo cousin has extraskeletal osteosarcoma. It originated in her leg, but then metastasized to at least 4 other areas of her body because of her lymphatic system. She underwent radiation to the original area in her leg and followed with chemotherapy, but by then it was found in the other locations. So now the doctors at Sloan Kettering are taking her off the chemo to do radioactive immunotherapy, which she says is to keep it out her vital organs for as long as possible.
Does anyone have any recommendations for doctors to give 2nd opinions or knowledge of any clinical trials that could her?

My mom has no treatment plans yet. We haven't even heard from her doctors since surgery. I have a phone call into them, though.