1. < Sarcoma
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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.

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 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.

Jump to this post

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

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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
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.

Jump to this post

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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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 @fighter123 "SOLITARY FIBROUS TUMOR, WHO GRADE 3. In the frontal lobe. They removed the tumor. I will..." + (show)
@fighter123

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

Jump to this post

Welcome @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.

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ellengrubb | @ellengrubb | Jun 14, 2023

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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cas2800 | @cas2800 | Jun 15, 2023

@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.

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bossman122 | @bossman122 | Jun 15, 2023

I 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

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gina5009 | @gina5009 | Jun 16, 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.

Jump to this post

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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