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.

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?

REPLY
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

REPLY
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

REPLY
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

Jump to this post

Hugs received and Erica, thank you bunches.
God bless

REPLY
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

Jump to this post

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.

REPLY
3 replies
yellowdoggirl1 | @yellowdoggirl1 | Jan 1 9:44am
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

This is so hard when a young person has this. My daughter in her 30's had a sarcoma, phyllodes tumor, in a breast. The rarity of it means little research has been done. I send my best wishes for you and for her.

REPLY
todr | @todr | Jan 1 9:41am

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

REPLY
1 reply
janezum | @janezum | Dec 31, 2023

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

REPLY
3 replies
kathifleming | @kathifleming | Dec 30, 2023

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

REPLY
4 replies
verena | @verena | Dec 18, 2023
In reply to @liv38556 "I replied on this conversation thread once before I think. I’m Lois V. Married 43 years..." + (show)
@liv38556

I replied on this conversation thread once before I think. I’m Lois V. Married 43 years with 2 grown children. I was dx’d with a soft tissue Sarcoma in 2021 on my left thigh and had it removed by a Surgical Oncologist at Vanderbilt Hsp in Nashville TN. We don’t live nearby to any Mayo hospitals. It seemed to stem from a dog bite I had 10 years prior. Vanderbilts RedCap team approached me about wanting me to be a part of a sarcoma study for 6 years. I agreed. They have sent me questions and they recently drew 5 vials of blood from me. A medical oncologist I saw after this wants me to have a Pet scan. I haven’t had it done yet. Has anyone heard of a mobile unit Pet Scan?

Jump to this post

I just had a PET scan done in a mobile unit. No problem. The hardest part was getting up the 5 steep steps but they do have a little elevator if need be. Inside it was a little cramped but comfortable. Great I had technicians who work in the unit all the time so they knew what their patients need - like a blanket ( I live in a cold climate).

REPLY
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