1. < Sarcoma
Moderator

Diagnosed with sarcoma? Let's share

Posted by Colleen Young, Connect Director @colleenyoung, Jun 21, 2017

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.

fighter123 | @fighter123 | Jun 13, 2023

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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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 13, 2023
In reply to @dlish16 "I was diagnosed with a malignant pleomorphic sarcoma in my left leg and had surgery and..." + (show)
@dlish16

I was diagnosed with a malignant pleomorphic sarcoma in my left leg and had surgery and a skin graft at end of March/ middle of April. Reluctantly beginning radiation therapy next week.

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Welcome, @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?

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dlish16 | @dlish16 | Jun 13, 2023
In reply to @colleenyoung "Hi @me67 @udderplace @brinys @deborahe @jeffk @Laydeewinx @sheila2005 @funkynotes @zshivaughn @jacobito @swstar, I'd like to invite..." + (show)
@colleenyoung

Hi @me67 @udderplace @brinys @deborahe @jeffk @Laydeewinx @sheila2005 @funkynotes @zshivaughn @jacobito @swstar,
I'd like to invite you to the new discussion group for people living with sarcoma. What type of sarcoma have you been diagnosed with? Are you currently in treatment or finished with treatment?

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I was diagnosed with a malignant pleomorphic sarcoma in my left leg and had surgery and a skin graft at end of March/ middle of April. Reluctantly beginning radiation therapy next week.

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2 replies
rhood1961 | @rhood1961 | Jun 13, 2023
In reply to @rhood1961 "I was diagnosed at the end of February 2023. I had my femur, knee replaced. I..." + (show)
@rhood1961

I was diagnosed at the end of February 2023. I had my femur, knee replaced. I also had part of my tibia redone.
I have had a lot of post operative issues.
I will admit that I am having mental and emotional issues with my new norm. I'm having trouble dealing with what my life will be from now on
I've always been the one people leaned on, it's hard for me to now realize that I have to lean on people. That I'm not the same person. That there are both physical and mental changes in my life.
I know I need help. That I need to talk to someone. I'm just not sure who.

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Thanks for the virtual hug.
It's surprising how much I need the virtual and real ones these days

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vazglo329 | @vazglo329 | Jun 13, 2023
In reply to @rhood1961 "I was diagnosed at the end of February 2023. I had my femur, knee replaced. I..." + (show)
@rhood1961

I was diagnosed at the end of February 2023. I had my femur, knee replaced. I also had part of my tibia redone.
I have had a lot of post operative issues.
I will admit that I am having mental and emotional issues with my new norm. I'm having trouble dealing with what my life will be from now on
I've always been the one people leaned on, it's hard for me to now realize that I have to lean on people. That I'm not the same person. That there are both physical and mental changes in my life.
I know I need help. That I need to talk to someone. I'm just not sure who.

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I've had same surgery and 3 spinal fusions now have to see oncologist for endometrial cancer. Hoping my body don't become weaker than what it is🙏🙏🙏

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rhood1961 | @rhood1961 | Jun 12, 2023

I was diagnosed at the end of February 2023. I had my femur, knee replaced. I also had part of my tibia redone.
I have had a lot of post operative issues.
I will admit that I am having mental and emotional issues with my new norm. I'm having trouble dealing with what my life will be from now on
I've always been the one people leaned on, it's hard for me to now realize that I have to lean on people. That I'm not the same person. That there are both physical and mental changes in my life.
I know I need help. That I need to talk to someone. I'm just not sure who.

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2 replies
gemmalt | @gemmalt | Jun 12, 2023

Anyone on Trabectadin (Yondelis) chemo for their sarcoma?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 8, 2023
In reply to @eyrar "Hi! I in my early 20s and being treated for sarcoma at Mayo (a tenosynovial giant..." + (show)
@eyrar

Hi! I in my early 20s and being treated for sarcoma at Mayo (a tenosynovial giant cell tumor). It’s certainly overwhelming, so I’m happy to have found this forum!

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Hey Anna, you might also wish to follow the
- Adolescent & Young Adult (AYA) Cancer Support Group https://connect.mayoclinic.org/group/adolescent-young-adult-aya-cancer/

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 8, 2023
In reply to @chris1848 "It's been just over a year since I finished treatment for Ewings Sarcoma and they said..." + (show)
@chris1848

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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@chris1848, worrying about cancer returning can drive one crazy, especially when looking at statistical odds and over-analyzing. Sounds like it might be time to focus on NED (no evidence of disease).

It can also help to talk with others. You might appreciate this discussion:
- Ewing's Sarcoma: Where are you in your journey? https://connect.mayoclinic.org/discussion/ewings-sarcoma-1/

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 8, 2023
In reply to @lb21ann "I went to a general surgeon for a mass/bump on the back of my upper left..." + (show)
@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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@lb21ann, I not a doctor, but my understanding that a lipoma is a non cancerous (benign) lump that forms due to an overgrowth of fat cells. Lipomas are not cancer. Cancerous tumours of the fat cells are called liposarcomas.

It sounds like you might need to get clarification if you have a lipoma or lipsarcoma. Or a second opinion.

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