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.

christine49 | @christine49 | Feb 11, 2023

I was diagnosed with Leiomyosarcoma in 2014. I am now 73 years old.
It was in my left breast therefore had a mastectomy and reconstruction. I have had 18 contrast dye CT scans. I am due to have my last in
October 2024 (ten year watch).
Has anyone had experience with getting to the 10 year mark and if so did you stop the CT scans?
It’s so important to find Sarcomas early I’m not clear if I should continue the scans after my 10 year mark.
If you have any knowledge and can comment I’d appreciate it.

gtreece | @gtreece | Feb 10, 2023

Thank you for taking the time to reply to my emails. Some background on me, I am 59 had total hysterectomy in 2020. Tumor stage was 1B and estrogen sensitive. Put on Letrozole generic for Femara. Blocks body from making estrogen, even with my ovaries removed. Not sure why your doctor did not want you to not take estrogen blocker. May have been something other than menopause. Doctor forewarned me there was little evidence that it would work to stop a reoccurrence. But I was willing to take that chance. There are some tough side effects and many people stop because of them, but I hung in there and made some lifestyle changes to help with the side effects. Dr. has since told me to not continue due to a mass coming back. If you have Uterine Leiomyosarcoma, radiation therapy is not used according to doctor and some research articles. I am also told radiation may make the tumors grow, so CT scans are given as minimally as possible. That is why I will inquire if I can get MRI instead? But I read that each type of scan gives different information. I am trying to learn the language in the research articles I am reading through scholarly internet searches and taking lots of notes, I hope this gives you some information. You just have to keep asking and be the best advocate for yourself.

Terriebikes | @bicycle3 | Feb 10, 2023

In reply to @bicycle3 "Trying ebulinin" + (show)

answer "no"

luna6922 | @luna6922 | Feb 10, 2023

In reply to @gtreece "Thank you for taking the time to reply to my email. Did you or do you..." + (show)

Hello. So glad to hear from you. My drs never mentioned to me anything about an estrogen blocker but I'm going to ask. I was told to stay away from hormone treatment being in menopause. As to the mri. I got one directly after my operations but again there was no mention re ct scans and radiation. I know the mri are much more difficult to get approved thru my health insurance so we resort to ct scans every three months. It is challenging to know the right questions to ask ...

gtreece | @gtreece | Feb 9, 2023

In reply to @bicycle3 "started new chemo yesterday, erubilin" + (show)

Wishing you the strength and best outcome in your treatment

gtreece | @gtreece | Feb 9, 2023

In reply to @bicycle3 "yes" + (show)

Thank you for taking the time to reply to my email. Has not spread to lungs as revealed by recent PET scan.

gtreece | @gtreece | Feb 9, 2023

In reply to @luna6922 "Hello. I have the uterine leiomyosarcoma as well. Full hysterectomy in 2021. In 2022 removed a..." + (show)

Thank you for taking the time to reply to my email. Did you or do you take an estrogen blocker? Do you know anything about doing a MRI rather that CT scan to avoid the radiation? Keep up the good fight.