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.

@colleenyoung

Hi @skullbasecancer4, you can see your previous post to @stin26 here: https://connect.mayoclinic.org/comment/832208/

How is your partner doing? How are you?

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My husband was doing better after surgery on Jan 9th. Though the last 10 days recently due having a spinal fluid leak and had to be in the hospital for 5 days with heavy packing in his nose and lumbar drain, he has been miserable.
. We pray 🙏 today when they final remove packing from his nose , he will get some relief . Now we hope the plug holds . We won’t know for 5 weeks . Then we will have to meet with oncologist. Going day to day . This was a major serious set back and complication. It has been extremely difficult for me to see him more miserable then after brain surgery . One day at a time . His tumor is rare , especially since it was in the skull.

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@colleenyoung

@phuds01, I'm tagging @winter23 @tynerlisa, who have a child with synovial sarcoma and @ellengrubb who herself has synovial sarcoma. You may also be interested in these discussions:
- Synovial sarcoma: Proton or conventional radiation after surgery? https://connect.mayoclinic.org/discussion/radiation-following-surgery-proton-vs-conventional-treatment/
- Synovial sarcoma: what treatments might I expect? https://connect.mayoclinic.org/discussion/synovial-surcoma/

Phuds, has she had her appointment at MD Anderson yet? What is the treatment plan?

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Thank you. I’ll check them out.

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Rhabdomyosarcoma Cancer in right thigh. Has anyone out there had this type?

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I went to a general surgeon for a mass/bump on the back of my upper left shoulder. He believed it to be a harmless lipoma & it was elective to remove it. I chose to remove & he ordered an ultrasound. It was removed as outpatient. The pathology took extra time yo come back. The doctors front desk staff called telling me it was a benign lipoma sarcoma & not to Google it due to it would scare me. They said he got it all but I would need to return every 6 months for 2 years. I returned February 2023. He stopped in the room for a short time and took a quick look. I don’t understand the term benign lipoma sarcoma. I assume it means it’s not cancerous. But it’s a sarcoma? Any thoughts on the diagnosis would be appreciated. Thank you

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Do anyone knows if Zantac Medication cause GIST CANCER

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@edcapellan

Do anyone knows if Zantac Medication cause GIST CANCER

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??

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It's been just over a year since I finished treatment for Ewings Sarcoma and they said there was no evidence of disease. I'm still constantly anxious that it's going to come back. Especially since with my age group and location, the overall 5-year rate was relatively low with a significant chance of recurrence. I remember when they initially found it I could not stop overanalyzing and researching. I spent countless hours looking at studies and articles but all that did was make me more anxious. How do you deal with all the anxiety?

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@lb21ann

I went to a general surgeon for a mass/bump on the back of my upper left shoulder. He believed it to be a harmless lipoma & it was elective to remove it. I chose to remove & he ordered an ultrasound. It was removed as outpatient. The pathology took extra time yo come back. The doctors front desk staff called telling me it was a benign lipoma sarcoma & not to Google it due to it would scare me. They said he got it all but I would need to return every 6 months for 2 years. I returned February 2023. He stopped in the room for a short time and took a quick look. I don’t understand the term benign lipoma sarcoma. I assume it means it’s not cancerous. But it’s a sarcoma? Any thoughts on the diagnosis would be appreciated. Thank you

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Hi
Not sure if you’ve seen my earlier post but my Dad had a ‘benign’ skin tag removed from his back...13 months later has multiple lung metastasis and now diagnosed as sarcoma (UPS). He is currently undergoing Trabectadin chemo. Please make sure you ask for a CT scan to check your lungs (or PET scan even better). I don’t want to scare you but this is the exact misdiagnosis that my Dad had - told it was a benign atypical fibroxanthoma but it is UPS which comes with a much worse prognosis. They will argue it is very difficult to distinguish between the two but please go for follow up and I wish you all the very best

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@gemmalt

Hi
Not sure if you’ve seen my earlier post but my Dad had a ‘benign’ skin tag removed from his back...13 months later has multiple lung metastasis and now diagnosed as sarcoma (UPS). He is currently undergoing Trabectadin chemo. Please make sure you ask for a CT scan to check your lungs (or PET scan even better). I don’t want to scare you but this is the exact misdiagnosis that my Dad had - told it was a benign atypical fibroxanthoma but it is UPS which comes with a much worse prognosis. They will argue it is very difficult to distinguish between the two but please go for follow up and I wish you all the very best

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Also for info below -

A lipoma is a non cancerous (benign) lump that forms due to an overgrowth of fat cells. You can get a lipoma anywhere on the body where you have fat cells. Lipomas are not cancer. Cancerous tumours of the fat cells are called liposarcomas.

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I was dx with angiosarcoma in the skin on my left cheek in Fall of 2012. I had cancerous tissue removed and 30 radiation treatments in Jan. of 2013. I had no reoccurrence until this year. It showed up adjacent to where it was before but closer to my eye and nose. Surgery gave clear margins except near lacrimal duct. I will have more tissue in that area removed next. Reradiation is off the table and I am wondering is any places are using adjunct therapies in my situation. CT and MRI show no metastasis to any other area.

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