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.

sauer01 | @sauer01 | Dec 13, 2022
In reply to @ellengrubb "Praying you’ll be blessed with positive experiences and interaction with friends and family. I too, have..." + (show)
@ellengrubb

Praying you’ll be blessed with positive experiences and interaction with friends and family.
I too, have soft tissue cancer - Synovial sarcoma in my calf. Had it removed and radiated. Am feeling great and at peace.

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Thank you
Please post your continued journey. I have liposarcoma. Bless you also.

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1 reply
ellengrubb | @ellengrubb | Dec 13, 2022
In reply to @sauer01 "Just found out today that I have a soft tissue sarcoma. Thank you for the positive..." + (show)
@sauer01

Just found out today that I have a soft tissue sarcoma. Thank you for the positive words.

Jump to this post

Praying you’ll be blessed with positive experiences and interaction with friends and family.
I too, have soft tissue cancer - Synovial sarcoma in my calf. Had it removed and radiated. Am feeling great and at peace.

REPLY
2 replies
sauer01 | @sauer01 | Dec 12, 2022
In reply to @bicycle3 "Many thx!!!" + (show)
@bicycle3

Many thx!!!

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Just found out today that I have a soft tissue sarcoma. Thank you for the positive words.

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1 reply
ajb1938 | @ajb1938 | Dec 11, 2022
In reply to @bicycle3 "Many thx!!!" + (show)
@bicycle3

Many thx!!!

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Amen & stay POSITIVE!
GOD BLESS!

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Terriebikes | @bicycle3 | Dec 11, 2022
In reply to @ajb1938 "God Bless! Offer all your pain, anxiety, fear & discomfort to Jesus for healing grace's to..." + (show)
@ajb1938

God Bless!
Offer all your pain, anxiety, fear & discomfort to Jesus for healing grace's to bless others.
FOR HE IS THE WAY, THE TRUTH & THE LIFE! BY DOING SO YOUR PAIN WILL BE LESSENED & YOU WILL BE COMFORTED!!!
AMEN!
YOU ARE NOW ON MY PRAYER LIST!

GOD BLESS!
❤🙏❤🙏🙏❤🙏❤🙏❤🙏

Jump to this post

Many thx!!!

REPLY
2 replies
ajb1938 | @ajb1938 | Dec 10, 2022
In reply to @bicycle3 "Yes. Could not remove the large tumor attached to hip. 15 Radiations and 4 monthly chemos...." + (show)
@bicycle3

Yes. Could not remove the large tumor attached to hip. 15 Radiations and 4 monthly chemos.
Resected bowel in many places. Ostomy bag takes time getting used to.
Back to yoga and a bit of swimming.
Radiation 4 times on growing tumors in lungs.
Now more monthly chemo.
The terminal part is scarey.

Jump to this post

God Bless!
Offer all your pain, anxiety, fear & discomfort to Jesus for healing grace's to bless others.
FOR HE IS THE WAY, THE TRUTH & THE LIFE! BY DOING SO YOUR PAIN WILL BE LESSENED & YOU WILL BE COMFORTED!!!
AMEN!
YOU ARE NOW ON MY PRAYER LIST!

GOD BLESS!
❤🙏❤🙏🙏❤🙏❤🙏❤🙏

REPLY
2 replies
Terriebikes | @bicycle3 | Dec 10, 2022
In reply to @ajb1938 "have been diagnosed with liposarcoma tumors in the abdomen- they are aggressive. The larger ones are..." + (show)
@ajb1938

have been diagnosed with liposarcoma tumors in the abdomen- they are aggressive. The larger ones are 13 and 8 centimeters & growing at 1 cm. per month.
Have been told that surgery is the only option & will lose the left kidney, spleen, and some intestines and likely end up with a colostomy bag. Have no pain, still eating normally. Pressure is growing in the abdomen!
Anyone have similar symptoms or has had surgery???

Jump to this post

Yes. Could not remove the large tumor attached to hip. 15 Radiations and 4 monthly chemos.
Resected bowel in many places. Ostomy bag takes time getting used to.
Back to yoga and a bit of swimming.
Radiation 4 times on growing tumors in lungs.
Now more monthly chemo.
The terminal part is scarey.

REPLY
1 reply
ajb1938 | @ajb1938 | Dec 10, 2022
In reply to @rggj "My Pleomorphic Liposarcoma presented itself just off of my spine, between the shoulder blades. It grew..." + (show)
@rggj

My Pleomorphic Liposarcoma presented itself just off of my spine, between the shoulder blades. It grew very quickly and unfortunately it took five weeks to get the diagnoses. I was in Florida when diagnosed and I wasn’t comfortable with the plan they had for it’s removal. I contacted my primary in Mankato, Mn. and I was quickly referred me to Rochester Mayo. Within one day they had a plan and surgery was performed to remove the tumor. Following the surgery it took ten weeks to healing the site before radiation and chemo could be performed. I was fortunate that it presented itself where it did. It was visible early and only minimally attached itself to the muscles in my back. It will be a journey , but believe me, you are in the right place! Mayo is the absolute best in my mind. I wish you good fortune in your journey. You can trust this institution!

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Thank you for your insight.
God Bless!

REPLY
rggj | @rggj | Dec 10, 2022
In reply to @ajb1938 "have been diagnosed with liposarcoma tumors in the abdomen- they are aggressive. The larger ones are..." + (show)
@ajb1938

have been diagnosed with liposarcoma tumors in the abdomen- they are aggressive. The larger ones are 13 and 8 centimeters & growing at 1 cm. per month.
Have been told that surgery is the only option & will lose the left kidney, spleen, and some intestines and likely end up with a colostomy bag. Have no pain, still eating normally. Pressure is growing in the abdomen!
Anyone have similar symptoms or has had surgery???

Jump to this post

My Pleomorphic Liposarcoma presented itself just off of my spine, between the shoulder blades. It grew very quickly and unfortunately it took five weeks to get the diagnoses. I was in Florida when diagnosed and I wasn’t comfortable with the plan they had for it’s removal. I contacted my primary in Mankato, Mn. and I was quickly referred me to Rochester Mayo. Within one day they had a plan and surgery was performed to remove the tumor. Following the surgery it took ten weeks to healing the site before radiation and chemo could be performed. I was fortunate that it presented itself where it did. It was visible early and only minimally attached itself to the muscles in my back. It will be a journey , but believe me, you are in the right place! Mayo is the absolute best in my mind. I wish you good fortune in your journey. You can trust this institution!

REPLY
1 reply
ajb1938 | @ajb1938 | Dec 9, 2022

have been diagnosed with liposarcoma tumors in the abdomen- they are aggressive. The larger ones are 13 and 8 centimeters & growing at 1 cm. per month.
Have been told that surgery is the only option & will lose the left kidney, spleen, and some intestines and likely end up with a colostomy bag. Have no pain, still eating normally. Pressure is growing in the abdomen!
Anyone have similar symptoms or has had surgery???

REPLY
2 replies
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