Connect
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?
Like
Helpful
HugInterested in more discussions like this? Go to the Sarcoma Support Group.
Connect
I 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.
-
Like -
Helpful -
Hug
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!
-
Like -
Helpful -
Hug
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?
-
Like -
Helpful -
Hug
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
-
Like -
Helpful -
Hug
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.
-
Like -
Helpful -
Hug
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?
I have surgery on Mar 6 for an undifferentiated Pleomorphic
Sarcoma. Staged intermediate.
-
Like -
Helpful -
Hug
2 ReactionsI would suggest looking for a European clinic. There are many clinics that specialize in cancer treatment who take international patients and are very good at what they do. Some have interpreters who can help with the technical language of medicine. They are not inexpensive but often much less expensive than the clinics in the USA. There is a group in Germany that can refer potential patients to clinics that specialize in the specific type of cancer that you need to have treated. I have also heard that there are excellent and very affordable cancer doctors in Turkey. I hope you find what you need to get well.
-
Like -
Helpful -
Hug
3 ReactionsI live in Algeria (North Africa). I do not think that I can afford treatment in America. I have information that the costs of treatment in America are high.
-
Like -
Helpful -
Hug
1 Reaction