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.

erika42 | @erika42 | Dec 4, 2022

Hi everyone. I was diagnosed in September with a malignant peripheral nerve sheath tumor on my lumbar spine. I completed 5 weeks of radiation a week ago, then had an MRI a few days ago which showed the tumor is a few cm larger than it was in Sept. Surgery is next but I have to wait for the skin on my back to heal from the radiation and also need a pacemaker because of a low heart rate.

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2 replies
Terriebikes | @bicycle3 | Dec 5, 2022
In reply to @erika42 "Hi everyone. I was diagnosed in September with a malignant peripheral nerve sheath tumor on my..." + (show)
@erika42

Hi everyone. I was diagnosed in September with a malignant peripheral nerve sheath tumor on my lumbar spine. I completed 5 weeks of radiation a week ago, then had an MRI a few days ago which showed the tumor is a few cm larger than it was in Sept. Surgery is next but I have to wait for the skin on my back to heal from the radiation and also need a pacemaker because of a low heart rate.

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Prayers to you and yours.
It is so disappointing to see cm increase!!!

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rggj | @rggj | Dec 6, 2022

I am sorry for what you are going through. Believe me, you are at the right place. I was diagnosed with Pleomorphic Liposarcoma in 2017. Because of the rarity of my condition I was referred to Rochester Mayo. Their ability to diagnose, confer, communicate and treat is nothing short of amazing. I wish you all good fortune going forward.
One day at a time!

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amybr | @amybr | Dec 7, 2022

I am writing for my husband. He has been diagnosed with Spindle Cell Sarcoma on his sacrum & right side sciatic nerves. He has had 5 rounds of chemo & it has shrunk significantly & now they want to do surgery. We just found out yesterday that they want to remove & replace his sacrum. This has affected his right side & they let us know that he will be able to keep his leg now but will have alot of numbness & will also have to have 2 bags for his bladder & colon. We have lots more questions for them but would like a 2nd opinion from Mayo. Trying to contact someone today.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 7, 2022
In reply to @amybr "I am writing for my husband. He has been diagnosed with Spindle Cell Sarcoma on his..." + (show)
@amybr

I am writing for my husband. He has been diagnosed with Spindle Cell Sarcoma on his sacrum & right side sciatic nerves. He has had 5 rounds of chemo & it has shrunk significantly & now they want to do surgery. We just found out yesterday that they want to remove & replace his sacrum. This has affected his right side & they let us know that he will be able to keep his leg now but will have alot of numbness & will also have to have 2 bags for his bladder & colon. We have lots more questions for them but would like a 2nd opinion from Mayo. Trying to contact someone today.

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Welcome @amybr. This must sound all so frightening to remove and replace the sacrum, and potentially the loss of a limb.

To help you both prepare the ostomies for bladder and colon, you may also wish to join the discussions in the Ostomy support group:
- Ostomy support group https://connect.mayoclinic.org/group/ostomy/

To get started with getting a second opinion at Mayo Clinic, you'll find everything you need here: http://mayocl.in/1mtmR63

You can contact Mayo Clinic by phone and speak directly with a coordinator. Or fill out some information using the online form and request a specific time to be called back by the coordinator.

I'm so glad that his cancer responded well to chemotherapy and that the cancer shrunk significantly to allow surgery to be possible.

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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???

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2 replies
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!

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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!

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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.

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1 reply
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!
❤🙏❤🙏🙏❤🙏❤🙏❤🙏

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