Diagnosed with sarcoma? Let's share

Hi Vivian, welcome. I'm tagging @kristennursepatient @suzanneb @zaruhi @cali2007 and @erikahamilton, who also have Ewing's Sarcoma.

Vivian, You mention that your sarcoma is "most like Ewings". Do you have a rarer type of sarcoma that acts similar to Ewing's sarcoma? What treatment are they doing for the lung nodules?

Hi, I am fighting a Sarcoma most like Ewings, though I am a woman over 65. I have stage 4 currently in treatment for lung nodules. Help me connect?

What a difficult and painful journey for you and your husband in many senses of the word. Thank you for sharing your story. Sarcomas can be very tricky to diagnose.

Your loss is very new and raw. I invite you (if you wish) to join the discussions in the Loss & Grief group here: https://connect.mayoclinic.org/group/loss-grief/

Epithelioid angiosarcoma is a highly aggressive endothelial cell malignancy and it can start anywhere in the body. Is there anything that you have learned during this journey with your husband that you'd like to tell someone who may be newly diagnosed with an angiosarcoma?

In Oct 2017, my husband was diagnosed with lung cancer when a very small tumor was found during a routine preventative lung scan. He attempted to have surgery, in Dec 2017, to remove the lower lobe of his lung that contained the cancer, but due to too much scar tissue in his lungs that made it impossible to do without completely opening him up. The surgeon felt with the tumor being such a small size that radiation would be a better option, and the more complicated and more major surgery would be performed later, as a last resort, if needed.

His radiation treatments began Jan 2018, went great, and the already small lung cancer tumor had shrunk to more than half it's size and was still continuing to shrink. We both thought, "Yep, he's going to beat this lung cancer, and all will be great." He just, out of the blue one night, started complaining of severe abdominal pain in late August. A catscan done in ER revealed a large mass on each of his adrenal glands. The hospital immediately suspected lung cancer metastasis, but a biopsy would be needed to confirm that. My husband was admitted to the hospital, released, and readmitted 2 days later for abdominal pain, and ended up with pneumonia, as well.

When he was released the 2nd time, we got the biopsy scheduled for Sept.2018. It took forever for them to get back with us with the results. (All the while my husband is having aterrible abdominal pain and is declining rapidly .He how also had a mass in iis mouth too

m
aking it terribly painful for him to attempt to eat).
On Oct 4th When they did finally call us they said that it's Not lung cancer metastasis as they had originially thought, but as of that time they still had no idea what it was. They said they'd now run out of tissue due to the massive amount of testing they'd done already. They said they needed an entire lymph node to try to figure it out without running out of tissue again. He had surgery on Oct 5th to provide them with an entire lymph node. October 18th he ras diagnosed with Epitheliod Angio-Sarcoma and a hospice referral. He died 6 days later. on Oct 24th

Creedyfly, you have no idea how great it is to hear stories like this. Thank you for returning after 18 months to share this news with everyone. To be "easily walking 3 miles" after surgery and radiation (other?) for myxoid liposarcoma of the thigh, wow! Just wow! Congratulations.

What do you wish you had known about this journey that you'd like others with liposarcoma to know?

Just some feedback of incredible support and treatment I have received from my Mayo Team: 18 months later and I am easily walking 3 miles on a weekend! I am so appreciative of the surgeons at Mayo!

I'd be happy to pass on what we've learned. No chemo or therapy, they took clear margins and feel like they got it all. He's still getting 3 mo scans and so far, so good! He is doing well. with constant therapy and learning his prosthesis. Of course there's still times of frustration and missing his leg. Mostly that he can't do what he wants. He was always very active. However, he'll get there!

@dancingreendog Welcome back to MayoClinicConnect, a community forum where we share advice and information! And I just love the name you chose!
How have you and your husband been doing since his surgery? Has he had to have chemo or radiation therapy?
I’ll bet that you have lots of helpful advice that you can give others. Will you be willing to share?

This is us. My husband (Marty) was diagnosed with Chondrosarcoma in August of 2019. Two weeks later he had an external Hemipelvectomy. I'm Michele and it's nice to have another connection to other Sarcoma warriors.

I don’t know much about that type. Mine was under my arm and was attached to the connective tissue between two ribs