Diagnosed with sarcoma? Let's share

Posted by Colleen Young, Connect Director @colleenyoung, Jun 21, 2017

Because sarcomas are rare, I would like to start a conversation to help connect people living with sarcoma or caring for someone with sarcoma.

As you know, sarcoma is the general term for a broad group of cancers that begin in the bones and in the connective or soft tissues (soft tissue sarcoma). There are many different types and sub-types of sarcomas, for example: angiosarcoma, chondrosarcoma, Ewing’s sarcoma, fibrosarcoma, gastrointestinal stromal tumor (GIST), Kaposi's sarcoma, leiomyosarcoma, liposarcoma, malignant peripheral nerve sheath tumor, osteosarcoma, pleomorphic sarcoma, rhabdomyosarcoma, synovial sarcoma and more.

Let's get to know one another. Why not start by introducing yourself? What type of sarcoma have you been diagnosed with?

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

Justin McClanahan, Moderator | @JustinMcClanahan | May 7 8:29am

This week's member spotlight features a member of the Sarcoma support group who many of you have crossed paths with. Learn more about @ctflyr his thirst to learn every day, sharing each moment with his life partner and making life an adventure🙂

Life is an adventure: Meet @ctflyr https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/life-is-an-adventure-meet-ctflyr/

Check out all the Member Spotlights here and follow the About Connect blog for future update: https://connect.mayoclinic.org/page/about-connect/

richardlion | @richardlion | Apr 13 6:22am

In reply to @richardlion "@richardlion also I shall call your representative in Lebanon to seek advice" + (show)

@richardlion unfortunately your representative in Lebanon dealing only in intercourse
diseases

richardlion | @richardlion | Apr 12 2:12am

In reply to @richardlion "@colleenyoung Thanks dear for caring. Nothing has been done yet, still waiting for tumor board decision..." + (show)

@richardlion also I shall call your representative in Lebanon to seek advice

richardlion | @richardlion | Apr 12 2:10am

In reply to @colleenyoung "@richardlion, if you would like to seek a second opinion at Mayo Clinic, you can submit..." + (show)

@colleenyoung Thanks dear for caring. Nothing has been done yet, still waiting for tumor board decision to find other solution like you suggested for stereotactic radiotherapy before operation. Thanks again

Colleen Young, Connect Director | @colleenyoung | Apr 11 2:38pm

In reply to @richardlion "Dears, I was diagnosed with Osteosarcoma in my left elbow 4 years ago. It affected my..." + (show)

@richardlion, if you would like to seek a second opinion at Mayo Clinic, you can submit a request here: https://mayocl.in/1mtmR63

How are you doing? Will you have surgery?

Colleen Young, Connect Director | @colleenyoung | Apr 8 6:16pm

In reply to @ofcourseitis "@sagan7 hi. I have it too." + (show)

@ofcourseitis, welcome. Have you been diagnosed with Kaposi's sarcoma? How are you doing?

ctflyr | @ctflyr | Apr 8 8:20am

In reply to @stacerph "My son has a malignant triton tumor, and he is starting chemo today. We are pushing..." + (show)

@stacerph Hello.....while your Son's situation is daunting, and at times overwhelming for you, him and your Family, there are many "success" stories out there, even under the most dire circumstances. As you and your Son may know, or will learn, statistics are not "one size fits all". Each person and their illness is unique and will have unique results. Rely on the Care Team assembled to help your Son, but don't be afraid to question or request clarification for any guidance you receive that raises doubts or uncertainty. BIGGEST HUGS to you and your Son on his care journey ❤️

stacerph | @stacerph | Apr 7 8:53am

My son has a malignant triton tumor, and he is starting chemo today. We are pushing to get him radiation also. The surgical resection had to happen first, because the tumor was so large. They got the whole tumor March 11, but no negative margins. It grew from his femoral nerve, and his pelvic CT shows possible residual disease or regrowth already. This tumor is also often unresponsive to chemotherapy. But he’s 22, and we’re hoping he responds.

tenacgal | @tenacgal | Apr 6 7:32pm

In reply to @scrowe200 "I have surgery on Mar 6 for an undifferentiated Pleomorphic Sarcoma. Staged intermediate." + (show)

@scrowe200
My husband just completed surgery to remove a 6" UPS in his brachial plexus. 12-hour surgery at MD Anderson with 5 teams of surgeons. Prior to surgery, he had 25 greys of radiation to kill the tumor. The pathology report came back with the tumor as 90% dead. It was well encased but due to location, zero margins. He will have CT every 3 months for next year and then every four months for the 2-5 years.
When he was first diagnosed with the UPS, he was accepted and enrolled in a Phase II Study called Apollo which included: Neoadjuvant Atezolizumab with Dozorubicin, Concurrent Atezolizumab with Pre-operative Radiation Therapy and Adjuvant Atezolizumab in Patients with High Risk Surgically Resectable Extremity and Truncal Soft Tissue Sarcoma. But unfortunately, after just the first treatment, his tumor doubled in size over 3 weeks. He immediately elected out of the trial and pivoted to radiation. Chemo tends not have much success for this type of cancer and we were talked into it by both the Vanderbilt and MD Anderson team. It is the recipe they like to try first. Both wish we had trusted our research and done radiation and then surgery. The delay caused the tumor to grow so much that he now has very little use of his right arm. Nerve damage by the tumor. Anyway, he is now doing Physical therapy and continuing immunotherapy with Pembrolizumab aka Keytruda drug which btw is billed to the insurance company for $35k each shot. He will have 18 total shots. Lots of side effects so I'm monitoring him closely.