1. < Sarcoma
Profile picture for Colleen Young, Connect Director
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.

Profile picture for skullbasecancer4
skullbasecancer4 | @skullbasecancer4 | Mar 23, 2023
In reply to @stin26 "Hi, I have chondrosarcoma of the skull base also. It was just discovered 6 months ago..." + (show)
Profile picture for stin26 @stin26

Hi, I have chondrosarcoma of the skull base also. It was just discovered 6 months ago and I'm starting to see that this is pretty rare. No surgery yet but I know it's coming. I hope you're doing ok and, if you're up for it, I'd like to ask you a few questions about your experience. No pressure though, I know it can be taxing answering questions.

Jump to this post

My husband had the same type of tumor removed 27 years and was in great health. Also had radiation. The tumor reoccured 27 years later . Last time it was a one this time 2/3 , which is
not great news for him
. But for the last 27 years he was in great health . Do you have any symptoms? He was operated on at
Jackson Memorial
Hospital twice now with an amazing team of doctors , if you need any help . They saved his life twice .

REPLY
3 replies
Profile picture for stin26
stin26 | @stin26 | Mar 20, 2023
In reply to @skullbasecancer4 "Chondrosacroma skull based. Just had second surgery for removal . First time it was level 1..." + (show)
Profile picture for skullbasecancer4 @skullbasecancer4

Chondrosacroma skull based. Just had second surgery for removal . First time it was level 1 and second Level 2 . Anyone have this?

Jump to this post

Hi, I have chondrosarcoma of the skull base also. It was just discovered 6 months ago and I'm starting to see that this is pretty rare. No surgery yet but I know it's coming. I hope you're doing ok and, if you're up for it, I'd like to ask you a few questions about your experience. No pressure though, I know it can be taxing answering questions.

REPLY
1 reply
Profile picture for sonshine161
sonshine161 | @sonshine161 | Mar 19, 2023
In reply to @sonnyfigueroa "Hi! My name is Sonny and I am a 49m living in Northern Nevada. I have..." + (show)
Profile picture for sonnyfigueroa @sonnyfigueroa

Hi! My name is Sonny and I am a 49m living in Northern Nevada. I have been recently diagnosed with UPS, undifferentiated pleomorphic sarcoma. I had surgery to remove a tumor the size of 5.2 cm in my right upper thigh area. I am scheduled to have a pet scan and an mri next week so they can determine the next course of action, surgery or radiation.
This is all scary for me and my family. I have a wife and 3 girls 12 and under.
Any kind of guidance or inspirational talk would be great! Thank you

Jump to this post

Try and get a 2nd opinion at a major cancer center such as MDAnderson, Mayo Clinic or Sloan Kettering. They see and treat so many more people with what you’ve got and their surgeons are more experienced. Good luck

REPLY
Profile picture for Terriebikes
Terriebikes | @bicycle3 | Mar 19, 2023
In reply to @bgrissom23 "Sonny, Be positive and may God bless and keep you and your family in perfect peace...." + (show)
Profile picture for bgrissom23 @bgrissom23

Sonny,
Be positive and may God bless and keep you and your family in perfect peace. 🙏🏾🙏🏾🙏🏾
I was recently diagnosed with Sacroma /leiomyosarcoma and start chemo next week at MD Anderson. Be encouraged, pray and know that it will work out for your good!
🙏🏾🙏🏾🙏🏾

Jump to this post

Keep us posted.
I have had 2 different rounds of 2 different chemos

REPLY
Profile picture for sonnyfigueroa
sonnyfigueroa | @sonnyfigueroa | Mar 18, 2023
In reply to @bgrissom23 "Sonny, Be positive and may God bless and keep you and your family in perfect peace...." + (show)
Profile picture for bgrissom23 @bgrissom23

Sonny,
Be positive and may God bless and keep you and your family in perfect peace. 🙏🏾🙏🏾🙏🏾
I was recently diagnosed with Sacroma /leiomyosarcoma and start chemo next week at MD Anderson. Be encouraged, pray and know that it will work out for your good!
🙏🏾🙏🏾🙏🏾

Jump to this post

Thank you! God bless you
I hope everything works out for you and your family. I have heard great things about MD Anderson.

REPLY
Profile picture for bgrissom23
bgrissom23 | @bgrissom23 | Mar 18, 2023

Sonny,
Be positive and may God bless and keep you and your family in perfect peace. 🙏🏾🙏🏾🙏🏾
I was recently diagnosed with Sacroma /leiomyosarcoma and start chemo next week at MD Anderson. Be encouraged, pray and know that it will work out for your good!
🙏🏾🙏🏾🙏🏾

REPLY
2 replies
Profile picture for sonnyfigueroa
sonnyfigueroa | @sonnyfigueroa | Mar 17, 2023

Hi! My name is Sonny and I am a 49m living in Northern Nevada. I have been recently diagnosed with UPS, undifferentiated pleomorphic sarcoma. I had surgery to remove a tumor the size of 5.2 cm in my right upper thigh area. I am scheduled to have a pet scan and an mri next week so they can determine the next course of action, surgery or radiation.
This is all scary for me and my family. I have a wife and 3 girls 12 and under.
Any kind of guidance or inspirational talk would be great! Thank you

REPLY
4 replies
Profile picture for amydunn
amydunn | @amydunn | Mar 16, 2023

Is there anyone who can give me information about the chemotherapy treatment involving Cyclophosphamide and the first few weeks of receiving it. What’s the norm if any what to look out for.

REPLY
1 reply
Profile picture for amydunn
amydunn | @amydunn | Mar 13, 2023
In reply to @gemmalt "Try and stay strong, I know how you feel as my Dad went from having just..." + (show)
Profile picture for gemmalt @gemmalt

Try and stay strong, I know how you feel as my Dad went from having just a benign small skin tag taken off his back in dermatology to having multiple sarcomas in both lungs - there are some good treatments out there though. I just try to stay positive (as hard as it is), sarcomas are so rare that everyone is so different and what may not work for someone may work for others - mind over matter is a big thing too - good luck with everything. Dad started Trabectadin chemo last week, it’s low toxicity and touch wood has had only slight nausea which has been controlled with anti sickness tablets. This seems a long term option if it manages to stabilise/shrink the lung sarcomas, fingers crossed. Let us know how you get on xx

Jump to this post

Good luck I pray for you and your family.

REPLY
Profile picture for gemmalt
gemmalt | @gemmalt | Mar 13, 2023
In reply to @phuds01 "Hello, my name is Lisa. My sweet daughter-in-law (Karla 27 yrs old) has just been diagnosed..." + (show)
Profile picture for phuds01 @phuds01

Hello, my name is Lisa.
My sweet daughter-in-law (Karla 27 yrs old) has just been diagnosed with synovial sarcoma. She is in the process of getting an appointment scheduled with MDAnderson Houston.

Jump to this post

Good Luck, she has age on her side which is a good thing xx

REPLY
View MoreView Less
Please sign in or register to post a reply.