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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 was diagnosed with Leiomyosarcoma in May of 2021. I had surgery in July that removed a stage 2 tumor that involved my IVC vein in which they put a graft instead. I lost my right kidney, they took part of small intestion, and small bowel. After the surgery I started bleeding internally, and needed 7 blood transfusions.
In remission since recovery, but now the most recent CT scan shows a new growth in my liver. I had a biopsy this week, waiting for results to see what happens next...
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3 ReactionsI too had a solitary fibrous tumor of the brain.WHO grade 3
6 weeks of daily radiation.
Finished rad. On Ma 15.
PET scan yesterday…. No metastasized to any other places!
MRI scheduled for June 28 to see if tumor is gone/shrunk.
Trying to eat healthy, walk and do yoga. And pray.
Tumor is rare and not much info about it.
Would love to connect with someone who has had this type of tumor.
So uncertain about my future.
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3 ReactionsThank you for your reply and sharing your experience with me. You've made me feel better and given me more confidence about having radiation treatments. Much appreciated.
I am not familar with your type of tumor, but I had a DERMATOFIBROSARCOMA in 1988. It was removd with a wide recission and a rotator flap to fill up the whole left in my leg from the surgery. It was necessary to take wide margins to guarantee all of the tumor had been removed. At first they had thought about inserting radiation sticks, but later decided against it. I can thankfully say there has been no recurrence and I am now 92 years old. I hope you will have equally good results, and remember Life is Good, and enjoy every moment you have been given.
God Bless you
Gina5009
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1 ReactionI have esophageal cancer that spread to my collar .No surgery or radiation.
Two cemo'sand a cocktail for 6 treatments at every other Wednesday. 9 down 3 to go
Probably will need something else because the Doctor said it will be about two years
@darmenta1122 My Daughter has a mass removed from her back on May 5th 2023. Tests results came back positive or Alveolar Soft Tissue Sarcoma. She is scheduled for MRI and CT scan on Friday the 16th. I am trying to get her to the Mayo Clinic or MD Anderson. Can you tell me where your sister is being treated and what type of treatment they are doing? We are looking for a specialist in Sarcoma. They said she will need a second surgery to go in and make sure all the bad tissue has been removed as well as tack out good tissue around the infected area.
I have Synovial Sarcoma which started with a small bump on my calf. After having it removed and radiated, all looked good until it returned a year later. It had metastasized to my lung. Because of my age (75) and unlikely cure or help with chemo and other drugs - as well as side affects, I decided to go on palliative care and chose quality of life. I’m in good shape, feel fine and quite a lot of energy. I’m enjoying my family and making memories.
My biggest concern is loneliness.
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3 ReactionsWelcome @fighter123. While solitary fibrous tumors are rare, @suemarie3 also joined very recently and has a similar diagnosis, but in the brain not the lung. I encourage you to start a new discussion in the Cancer Support Group about solitary fibrous tumors. Here's how:
1. Go to the Cancer support group https://connect.mayoclinic.org/group/cancer/
2. Click Start a new discussion
3. Enter a question or topic and add your message and mention @suemarie3 to join you.
SOLITARY FIBROUS TUMOR, WHO GRADE 3.
In the frontal lobe. They removed the tumor. I will be going for radiation soon. My left side is numb. Going through physical therapy to move around. I have no idea what to expect. Am I scared? A little. I am at peace and have excepted whatever happens. But I will fight this. Very rare indeed
Linda
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3 ReactionsWelcome, @dlish16, you might also be interested in this discussion:
- Diagnosis : pleomorphic sarcoma https://connect.mayoclinic.org/discussion/diagnosis-pleomorphic-satcoma/
You say you're reluctant about starting radiation. Are there specific things you're concerned about? Any questions you'd like to ask fellow members to help you prepare?