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.

nanee1 | @nanee1 | Jan 1 12:46pm
In reply to @janezum "Good morning and warm wishes to all on this site. My 15yr old God-daughter has been..." + (show)
@janezum

Good morning and warm wishes to all on this site. My 15yr old God-daughter has been diagnosed with stage 4 Osteosarcoma. I wondered if there are any others in a similar position.

kindest regards Jane

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I was diagnosed with leiomyosarcoma several months ago. Grade 4. It is sad for this to happen to a young person. I can tell you what helped me. When I got the news that it was such a rare cancer confirmed by Mayo Clinic. I went to bed & cried. I then realized that that would not work. I would need to have a positive attitude & positive thoughts. I asked for prayers from those that were so inclined & positive thoughts from others. I designed a mean looking cartoon character I named Chemo Carl to fight the cancer. He is an English Bulldog wearing a pink cape & pink boxing gloves. I tell him to get in there & beat the crap out of the cancer cells. I am a religious person so I depend on Jesus to help me through this. My Oncologist & the infusion nurses are thrilled with my attitude. Guess what! My third scan showed tht the cancer had been contained & had not spread. I have my forth scan the 30th. I am looking forward to more good news! I hope this helps.

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3 replies
kathifleming | @kathifleming | Jan 1 11:45pm
In reply to @kathifleming "Hi, My name is Kathi Fleming, I lived in Texas for 30 years yet moved back..." + (show)
@kathifleming

Hi,
My name is Kathi Fleming, I lived in Texas for 30 years yet moved back to Albuquerque 7 years ago as my Dad was diagnosed with stage 4 breast cancer. After surgery and chemo he's been in remission for years. Resently a bumped surfaced which has been diagnosed as a sarcoma tumor.
My Dad is 87 and still goes to work. It gives him purpose. My Dad, Dr Charles Fleming is a therapist and his heart has always been for those who are hurting, confused and less fortunate.
I am soooo not ready to loose him.
Any comforting advice would be appreciated . . . .
Prayer would be even more appre

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Hugs received and Erica, thank you bunches.
God bless

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kathifleming | @kathifleming | Jan 1 11:46pm
In reply to @kathifleming "Hi, My name is Kathi Fleming, I lived in Texas for 30 years yet moved back..." + (show)
@kathifleming

Hi,
My name is Kathi Fleming, I lived in Texas for 30 years yet moved back to Albuquerque 7 years ago as my Dad was diagnosed with stage 4 breast cancer. After surgery and chemo he's been in remission for years. Resently a bumped surfaced which has been diagnosed as a sarcoma tumor.
My Dad is 87 and still goes to work. It gives him purpose. My Dad, Dr Charles Fleming is a therapist and his heart has always been for those who are hurting, confused and less fortunate.
I am soooo not ready to loose him.
Any comforting advice would be appreciated . . . .
Prayer would be even more appre

Jump to this post

Much, much thanks!
God bless

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Lynne Marie | @lbrockme | Jan 3 3:57pm
In reply to @kathifleming "Hi, My name is Kathi Fleming, I lived in Texas for 30 years yet moved back..." + (show)
@kathifleming

Hi,
My name is Kathi Fleming, I lived in Texas for 30 years yet moved back to Albuquerque 7 years ago as my Dad was diagnosed with stage 4 breast cancer. After surgery and chemo he's been in remission for years. Resently a bumped surfaced which has been diagnosed as a sarcoma tumor.
My Dad is 87 and still goes to work. It gives him purpose. My Dad, Dr Charles Fleming is a therapist and his heart has always been for those who are hurting, confused and less fortunate.
I am soooo not ready to loose him.
Any comforting advice would be appreciated . . . .
Prayer would be even more appre

Jump to this post

Praying

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 8 5:58pm
In reply to @kathifleming "Hi, My name is Kathi Fleming, I lived in Texas for 30 years yet moved back..." + (show)
@kathifleming

Hi,
My name is Kathi Fleming, I lived in Texas for 30 years yet moved back to Albuquerque 7 years ago as my Dad was diagnosed with stage 4 breast cancer. After surgery and chemo he's been in remission for years. Resently a bumped surfaced which has been diagnosed as a sarcoma tumor.
My Dad is 87 and still goes to work. It gives him purpose. My Dad, Dr Charles Fleming is a therapist and his heart has always been for those who are hurting, confused and less fortunate.
I am soooo not ready to loose him.
Any comforting advice would be appreciated . . . .
Prayer would be even more appre

Jump to this post

Hi Kathi, wow, your dad sounds like someone we all don't want to lose. It's hard to lose a parent, no matter what age.

What type of sarcoma does he have? What type of treatment is being recommended?

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verena | @verena | Jan 9 9:23am

I am finally starting radiation therapy this week! It seems to have taken forever to set up. I feel I have some grasp on relevant information of what to expect but if folks have something they want to share some wisdoms, that would be great. Or just send good vibes theRT will work well. Thanks.

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verena | @verena | Jan 9 9:26am

I am finally starting radiation therapy for my upper thigh Myxosacroma this week! It seems to have taken forever to set up. I feel I have some grasp on relevant information of what to expect but if folks have something they want to share some wisdoms, that would be great. Or just send good vibes the RT will work well. Thanks.

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newsha | @newsha | Jan 9 9:34am

Hi Everyone! I'm 40 years old and was diagnosed with Clear Cell Sarcoma in November. I started radiation last friday and so far it's going well, totally painless and easy (hoping I still feel this way at day 25 lol). Mine is in my hand. I will have to have surgery in March to remove my tendons, then another surgery to reconstruct them, I'll also have a skin graft. I'm definitely nervous about the surgeries, hoping I will have normal function of my hand after. But honestly I don't even care that much, I just want to LIVE! I'll also need a biopsy done in the lymph node in my under arm to make sure it hasn't spread. I was told this type of cancer spreads to your lungs, so I'll also have a CT scan of my lungs as well. I'm doing my best to continue with life as normal as possible for now. Sending everyone here lots of love. Stay strong!

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 9 4:49pm
In reply to @janezum "Good morning and warm wishes to all on this site. My 15yr old God-daughter has been..." + (show)
@janezum

Good morning and warm wishes to all on this site. My 15yr old God-daughter has been diagnosed with stage 4 Osteosarcoma. I wondered if there are any others in a similar position.

kindest regards Jane

Jump to this post

Hi @janezum, I think @danielad may have some experience to share with you. Her grandson also had a diagnosis of osteosarcoma.

@nanee1, I love that you designed Chemo Carl. I wonder if you would mind posting a picture of him. I bet it would inspire Jane's God-daughter.

Jane, how is your God-daughter doing? What treatments will she have?

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 9 4:51pm
In reply to @todr "MPNST. Tumor removed from mediastinum and completed 32 radiation treatments. Now waiting for scans scheduled for..." + (show)
@todr

MPNST. Tumor removed from mediastinum and completed 32 radiation treatments. Now waiting for scans scheduled for January 26th.

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Hi @todr, welcome. You might wish to join the members in this related discussion:
- Malignant Peripheral Nerve Sheath Tumor
https://connect.mayoclinic.org/discussion/malignant-peripheral-nerve-sheath-tumor/

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