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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 have been fighting fibro sarcoma since 2017. So far I have had 8 tumors removed and have found 4 more. I'm so tired of surgeries and they are getting harder and longer to recover. They are in my left lower leg and because of last surgery I have to use a walker all the time or a wheelchair. There's been too much nerve damage. Waiting on Dr to let me know what we can do.
Thanks for doing this. It is great to speak with others who have experienced
the rare cancer. As I noted I have a synovial sarcoma. Operated in December 2019 at the same time I had a gastric hernia that was so large that my intestines feel in there. It was a mess. Just wonder if anyone else had the gastric nose tube during their hospital stay?
@mpd1919, all the best with your upcoming appointment. Were you recently diagnosed with sarcoma? What type? Is you upcoming appointment to discuss a treatment plan?
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1 Reaction@lunamay, so many surgeries. I can imagine they are getting harder to deal with and harder to recover from. The new tumors are also in your lower left leg?
Yes. They have all been between my ankle and mid calf. One at a time,then last year I had 3 at once. Now I have 4.
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1 ReactionI have. been diagnosed with a synovial sarcoma. Was operated and removed December 2019. I get CAT scan every six months followed by visit to my oncologist. Since it larger, I was told that it can reoccur. Constant worry about that. Any advice.
My 44 year old son had a large monophasic synovial leiomyosarcoma removed October 2022 followed by radiation. Recent PET CT found a new small tumor in his right axilla and left lung. He started chemotherapy 3 weeks ago about to start round two. It is the only solution. Has chemotherapy been advised in your case?
No, follow-up after surgery. Just CAT scans every 6 months and endoscopy and colonoscopy once a year. I'm 82.
No radiation, no chemo. I hope things stay that way. Thanks for asking.
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2 ReactionsI had chondrosarcoma in 2002 for two weeks. A lump on my sternum was growing, lump removed, lump was sarcoma growing in rib. pieces of 3 ribs and pieces of sternum removed, gore-tex patch sown on. no sign or symptoms since. last CAT scan was 2 weeks ago.
all I have to pass on is get that lump or bump that lasts more than a week looked at. My tumor was grade 1, very early.
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2 ReactionsSorry to hear that! Very lucky stage 1. Take care and good luck.