Diagnosed with sarcoma? Let's share
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.
Thank you, and may God bless you with a miracle, and be blessed with a healthy wonderful life full of love. ♥️
I found what turned out to be liposarcoma tumors in my left groin. I had two tumors removed.
First tiumor was cancer, second was not. I have had 4 tumors removed from my left groin between 2010-2019. MD Anderson is watching a 5th tumor which did not grow last year. My next appointment is this October as I am on a yearly look and see. If you find out you have liposarcoma find out what kind as there are 4-subtypes. Prayers coming your way.
You have been through so much and I admire your courage and strength. Sarcomas are so rare . I take my husband to the University of Miami. I am trying so hard to connect with anyone who has Chrondrosacroma of the skull. Have you ever come across anyone with that ? We already had two surgeries and now it has has come back more aggressive and he has already had radiation the first time . We see an oncologist who specializes in Sacromas on June 20th . I am very worried and scared 😢
Hi @bicycle3, you were on my mind today and I was wondering how you are doing. How is chemo going and managing the side effects of loss of taste and fatigue?
Hi @marysue1953, I believe @mp01 also has the same type of sarcoma - rhabdomyosarcoma.
When were you diagnosed? What treatments?
@lb21ann, I not a doctor, but my understanding that a lipoma is a non cancerous (benign) lump that forms due to an overgrowth of fat cells. Lipomas are not cancer. Cancerous tumours of the fat cells are called liposarcomas.
It sounds like you might need to get clarification if you have a lipoma or lipsarcoma. Or a second opinion.
@chris1848, worrying about cancer returning can drive one crazy, especially when looking at statistical odds and over-analyzing. Sounds like it might be time to focus on NED (no evidence of disease).
It can also help to talk with others. You might appreciate this discussion:
- Ewing's Sarcoma: Where are you in your journey? https://connect.mayoclinic.org/discussion/ewings-sarcoma-1/
Hey Anna, you might also wish to follow the
- Adolescent & Young Adult (AYA) Cancer Support Group https://connect.mayoclinic.org/group/adolescent-young-adult-aya-cancer/
Anyone on Trabectadin (Yondelis) chemo for their sarcoma?
I was diagnosed at the end of February 2023. I had my femur, knee replaced. I also had part of my tibia redone.
I have had a lot of post operative issues.
I will admit that I am having mental and emotional issues with my new norm. I'm having trouble dealing with what my life will be from now on
I've always been the one people leaned on, it's hard for me to now realize that I have to lean on people. That I'm not the same person. That there are both physical and mental changes in my life.
I know I need help. That I need to talk to someone. I'm just not sure who.