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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?
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I had a synovial sarcoma, rare cancer. Operated in 2019 and was in the hospital for two weeks. Long recovery, but I feel good. Have great difficulty eating or wanting to eat. No chemo or radiation required. However, this cancer does return. So far I'm good. But always waiting for bad news. Have CATscans every six months, see my oncologist every six months also. I am on no medication for cancer, just my regular stomach meds.
Hope all will be well.
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1 ReactionThank you for sharing. It seems that just talking to friends is so repetitive with no answers. Wishing you the best outcome with least suffering.
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2 ReactionsI was also diagnosed with leiomyosarcoma last year ans started chemo in August. It seems like everyone's situation is different and therefore treated different. I am 72 and was feeling great until my clavicle broke due to a tumor in the bone. Makes me stage 4. Seems like uterine is more common but I have no uterus so they have no idea where it started. Chemo caused shrinkage at first, then no growth which I am told is what they are hoping for in my case. Because it's already in the bone in my case there is no cure so I will be on chemo as long as I can take it. My next scan is due this week. Wishing you strength to cope and positive outcomes from treatment. I'm in Wisconsin.
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2 ReactionsI have Leiomyosarcoma. I’ve been through 6 treatments of chemo where the cancer shrunk 1 cm with 2 cm remaining. It started as a fibroid in the uterus. After 25 external and 5 internal radiation treatments there’s been NO change. So now back to chemo on 3/22/24. My treatments started July 21/23. 62 year old female, still working through all of this in Arizona.
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2 ReactionsYes for 2 weeks then skin graft sewn to wound and VAC back on. I think that is the protocol. I'm taking one day at a time! Thank you for your support!
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2 Reactions@scrowe200
So good to hear that you have a surgeon who is experienced in sarcoma. Hoping you have the best possible outcome! Will you be taking the wound VAC home to use on a regular basis?
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1 ReactionIt will be inpatient and maybe overnight. Longer if the wound healing VAC
Is late arriving only.
The surgeon is an Orthopedic Oncologist
With experience in sarcoma
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2 ReactionsI'd love to hear from you again post-surgery, @scrowe200. Will this be an in-patient or out-patient hospitalization?
Please post again when you feel up to it.
Yes. I hve never been ill.
I'm doing fine so far. Lots of energy as usual and taking care of my husband
who has had a stroke-8yrs ago.
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2 ReactionsHello @scrowe200 and welcome to Mayo Connect. I am glad that you found this forum as you approach this rare cancer diagnosis and surgery. How are you doing with this? Is this your first cancer diagnosis?