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.

broadwaystar64 | @broadwaystar64 | Sep 27 7:19am

In reply to @kenc "We have shared experience." + (show)

@kenc I am sorry u are both going through this. you are a good daughter

broadwaystar64 | @broadwaystar64 | Sep 27 7:15am

Hi I am a women in my early sixties who was diagnosed with carsosarcoma in March 2025, I went through a complete hysterectomy along with the removal of 5 lymph nodes. Underwent 6 rounds chemo and 3 radiation . we thought we got it all. at the end of my chemo treatment I asked for a cat scan, then pet scan . I just had a surgery to remove my ileac lymph nodes and looks like I have rhabdomyosarcoma . When I look up that diagnoses it states it can be caused by chemotherapy or radiation. I am not sure of my teams plan yet just found out . I thought it was for me to have more chemo. I try to be positive with this diagnosis, I do have faith. If anyone has had a similar diagnosis I would be eager to talk with you.

jennbelle | @jennbelle | Sep 1 5:21pm

In reply to @kenc "We have shared experience." + (show)

I hope all is well.

kenc | @kenc | Sep 1 4:29pm

In reply to @jennbelle "My mom is diagnosed with sarcoma and boy has it been a ride. It happened out..." + (show)

@jennbelle

My mom is diagnosed with sarcoma and boy has it been a ride. It happened out no where. She was originally misdiagnosed twice. We immediately went to MD Anderson. They scheduled her for surgery but the tumor was too big. The surgeon open her up and closed her cause he wasn’t comfortable giving her surgery. After that she was placed on chemo. MD Anderson is NOT the hospital everyone thinks it is. All that it matters where you starts has been a complete nightmare! My mother always was diagnosed with sarcoma. MD Anderson supposed to have one of the best sarcoma teams out there. My thoughts is why wasn’t my mom originally scheduled with a sarcoma doctor. If you don’t research, and is new to this. They will put you with any doctor. She finally got the surgery. The dumb doctor kept her off Chemo for 3 months! She has sarcoma. You must act quickly or it will grow. We go to the doctor. They placed her with a new doctor. Finally, with a sarcoma doctor. She comes in the room. Break the worst news saying the cancer has popped back up in 5 different locations and the last doctor shouldn’t have kept her off Chemo that long with this form of aggressive cancer. She started Chemo. 1 of the tumors is not responding. The doctor is placing her on a new Chemo, but I feel the doctor is ready to give up on my mom’s case and the cancer is only in her pelvis. She doesn’t want do another surgery because she said the tumors will grow. They don’t want do radiation because location of the tumor. We are currently at the point of switching doctors and taking control of her case and her life! We can’t afford a conservative doctor at this point and hiding her don’t care attitude with a big smile.

I’m venting my frustration cause my mom is totally unmotivated. She was a nurse so she knows what to do. I have to research everything for her, and I’m almost becoming very annoyed. I’m so disappointed with MD Anderson on so many levels. Anyone, going through this. Learn your cancer. Be your own advocate. Don’t expect anyone to do it for you. Your doctors will give on you, and any form of negativity. Get rid of them. You will lose hope through their negativity and sometimes hope is all you have to hold on to. This is your life!. It tears down your caregiver and they are trying to support you in this long journey, but if you’re not motivated, how can they keep the motivation. I’m on so many forums trying to gained the support and knowledge for her and she’s not on one. I beg her to join so she can educate herself. I wish she was passionate about this cancer as when she was passionate about her career.

I don’t want to lose my mom it’s been just her and I for so many years. I can’t imagine my life without her. I know the time will come one day but she’s only 72. She was a young 72 before this happened. The doctors talk about how healthy she is in spite of the cancer. I know I sound selfish. I’m just frustrated.

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We have shared experience.

jennbelle | @jennbelle | Sep 1 11:57am

In reply to @kenroy "I'm a fibroblastic sarcoma cancer Patient in remission 8 months had it ten year there was..." + (show)

I know it is. You go through so much. I’m gave you are in remission.

ctflyr | @ctflyr | Sep 1 11:56am

In reply to @vmecstone59 "My name is Melissa Stonebrook and I was recently diagnosed with Dermatofibrosarcoma Protuberans (DFSP). I have..." + (show)

Hello...this site from Mayo may be a start...tap the link or copy and paste to your browser.
https://www.mayoclinic.org/diseases-conditions/dermatofibrosarcoma-protuberans/symptoms-causes/syc-20576872

vmecstone59 | @vmecstone59 | Sep 1 10:15am

My name is Melissa Stonebrook and I was recently diagnosed with Dermatofibrosarcoma Protuberans (DFSP). I have surgery scheduled in 2 weeks for a re excision of the area on my left shoulder. I know this particular sarcoma is rare and wanted to know if there is some literature that can be recommended for me to read.