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.

Hi my name is Denna I have been diagnosed with sarcoma cancer in the belly tissues. Waiting to hear back from Mayo about what type it is. They are preparing me to start chemo. I go tomorrow to have my port put in. The waiting is the hardest of all.

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Profile picture for dlcrago @dlcrago

Hi my name is Denna I have been diagnosed with sarcoma cancer in the belly tissues. Waiting to hear back from Mayo about what type it is. They are preparing me to start chemo. I go tomorrow to have my port put in. The waiting is the hardest of all.

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@dlcrago ...Hello Denna....this all may be difficult to process given you don't know facts yet. It's surprising you are scheduled for chemo, but YOU don't have more information from Mayo about what you have.??!! Gather as much information from your Oncologist before treatment starts, so you can be prepared and know questions to ask. Don't be afraid to ask questions....ANY questions... and as many as you may have or need answers to. Knowledge is power and may help you cope with what you're facing. Best wishes in your treatment journey...❤️

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Profile picture for julmose @julmose

Hello,
My name is Julie.
In 2024 I was diagnosed with undifferentiated pleomorphic sarcoma. I guess they call it UPS. I had 25 radiation treatments over 5 week period to slow down the growth. I had surgery to remove it on December 3, 2024. It was huge and ugly and located on my left hip.
On 7/9/2026 I was diagnosed with Metastatic high-grade undifferentiable pleomorphic sarcoma. It was in my left lower lobe of my lung.
On August 3, 2026 I had the nodule in my left lower lobe removed.
I will get a CT Chest scan September 4, 2026.
So, this is where I am now. Waiting

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@julmose, welcome. How did the scan go last week? How are you doing?

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Profile picture for dlcrago @dlcrago

Hi my name is Denna I have been diagnosed with sarcoma cancer in the belly tissues. Waiting to hear back from Mayo about what type it is. They are preparing me to start chemo. I go tomorrow to have my port put in. The waiting is the hardest of all.

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@dlcrago, I add my welcome to @ctflyr's.

Have you started chemotherapy? How are you doing? What type of sarcoma do you have?

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Profile picture for fluttergord @fluttergord

I was diagnosed with Dediferentiated liposarcoma in July after 4 months of tests and scans. Then a 1 month wait to see an oncologist. Between the surgical oncologist and the radiation oncologist they have decided that radiation before surgery is my best option. I start 25 radiation treatments on mon. 24 of August. I am a 67 year old male in generally good health.my tumor is rapidly growing in the uper right quadrant of my groin just below belt line.

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@fluttergord
An update. I have finished the 25 radiation treatments. And am now healing for surgery. They will do a mri of groin, and a ct scan of lungs. Before my visit with the surgeon oncologist in a month. So far side effects have been limited to skin irritation and sensitive areas. Have not had to use pain killers at all. Now to keep my mind positive during the wait.

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A scan of my small intestine turned up a large tumor connected to my left kidney. It was initially diagnosed as renal carcinoma. My urologist operated and removed the tumor and the affected kidney. The tumor proved to be more extensive than anticipated and the surgery took eight and a half hours. The tumor was sent to Mayo for analysis and was determined by genetics to be a Dedifferentiated Liposarcoma, high grade, with osteosarcomatous differentiation. I've been referred to the Moffitt Cancer Center, which has a sarcoma department and sarcoma experts. I have my first appointments later this week.

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Profile picture for matt439 @matt439

A scan of my small intestine turned up a large tumor connected to my left kidney. It was initially diagnosed as renal carcinoma. My urologist operated and removed the tumor and the affected kidney. The tumor proved to be more extensive than anticipated and the surgery took eight and a half hours. The tumor was sent to Mayo for analysis and was determined by genetics to be a Dedifferentiated Liposarcoma, high grade, with osteosarcomatous differentiation. I've been referred to the Moffitt Cancer Center, which has a sarcoma department and sarcoma experts. I have my first appointments later this week.

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@matt439
Sorry to hear this. Hope the surgery got all of it. I was diagnosed with dedifferentiated liposarcoma from a biopsy on a lump in my right groin. In July. I have just finished 25 radiation treatments. Now healing up and to get new scans start of November. Then surgery to remove it and what ever it is attached to. Waiting is the worst part. Hope whatever they plan for you will keep it from returning.
Gord.

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Profile picture for fluttergord @fluttergord

@matt439
Sorry to hear this. Hope the surgery got all of it. I was diagnosed with dedifferentiated liposarcoma from a biopsy on a lump in my right groin. In July. I have just finished 25 radiation treatments. Now healing up and to get new scans start of November. Then surgery to remove it and what ever it is attached to. Waiting is the worst part. Hope whatever they plan for you will keep it from returning.
Gord.

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@fluttergord so the surgery I had missed the original liposarcoma that is blended with the fat on the left side of my body. It runs from just under my chest down to my pelvis. I'll be having another surgery to get it all and rebuild some of my diaphragm and colon. No chemo because it would likely destroy my remaining kidney and put me on dialysis.

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Profile picture for matt439 @matt439

@fluttergord so the surgery I had missed the original liposarcoma that is blended with the fat on the left side of my body. It runs from just under my chest down to my pelvis. I'll be having another surgery to get it all and rebuild some of my diaphragm and colon. No chemo because it would likely destroy my remaining kidney and put me on dialysis.

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@matt439
Best of luck, and hope all goes well. I am not looking forward to the results of the mri and ct scan they have booked for first week of November. Scared they will find more , but we have to push forward and pray they know what they are doing. It's so rare and always in different places, not sure the specialist have alot of experience. Keep in touch and I will do the same. Gord

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Profile picture for matt439 @matt439

A scan of my small intestine turned up a large tumor connected to my left kidney. It was initially diagnosed as renal carcinoma. My urologist operated and removed the tumor and the affected kidney. The tumor proved to be more extensive than anticipated and the surgery took eight and a half hours. The tumor was sent to Mayo for analysis and was determined by genetics to be a Dedifferentiated Liposarcoma, high grade, with osteosarcomatous differentiation. I've been referred to the Moffitt Cancer Center, which has a sarcoma department and sarcoma experts. I have my first appointments later this week.

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@matt439, welcome. You might be interested in this related discussion:
- Differentiated Liposarcoma: What treatments have you had?https://connect.mayoclinic.org/discussion/differentiated-liposarcoma/

How did your first appointment go? What is the treatment plan going forward?

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