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.

luna6922 | @luna6922 | Feb 8, 2023
In reply to @gtreece "My name is Gloria. I am diagnosed with Uterine leiomyosarcoma. In 2020 I had a stage..." + (show)
@gtreece

My name is Gloria. I am diagnosed with Uterine leiomyosarcoma. In 2020 I had a stage 1B tumor removed from uterus. I also had a complete hysterectomy. The tumor was estrogen sensitive so I was placed on Letrozole. The side effects have been challenging. Two and a half years in a mass was found through a CT scan. Pet scan reveled no spread. Tumor was removed laproscopically. Tumor was located on right side attached to lower branch of aorta. Genetic study to be conducted. So far I am told only treatment is to remove tumors as they appear. Not sure what questions to ask the medical professionals or how to advocate for myself effectively. I read conflicting information with what my oncologist is telling me, "that radiation and chemo are not effective for this type of cancer" but see trials with chemicals and radiation therapy. Would like to know and understand more about treatments why they work or why not. Also want to know if continued use of Letrozole will be effective in some way. Appreciate any information/advice you may have about this issue.

Jump to this post

Hello. I have the uterine leiomyosarcoma as well. Full hysterectomy in 2021. In 2022 removed a tutumor from my lung. I have been told the same information. I have follow up ct scans every 3 months and hope each time that I have clear scans. With all my research and w my drs I find the the same information you have. That I need to remove the tumors are they come up. If I learn anything new I'll post to you.

REPLY
1 reply
gemmalt | @gemmalt | Feb 8, 2023
In reply to @posi9 "Although rare, Sarcomas seem to be becoming more prominent. I had radiation induced Angiosarcoma of the..." + (show)
@posi9

Although rare, Sarcomas seem to be becoming more prominent. I had radiation induced Angiosarcoma of the breast in 2019 (age 60) with a reoccurance in 2021........... Both required surgeries only. Unfortunately, the cancer has metastasized to the lung. .......so now it’s the waiting game for the lung biopsy. THE WAITING IS THE WORST ESPECIALLY WITH SUCH AN AGGRESSIVE CANCER. Prayers to all.

Jump to this post

Oh dear...my Dads resulted from a skin tag misdiagnosed as benign (should have been diagnosed as undifferentiated pleomorphic sarcoma). Sorry to hear it’s metastasised to lungs - let me know how you get on, Dad has the same xx

REPLY
Terriebikes | @bicycle3 | Feb 9, 2023
In reply to @posi9 "Although rare, Sarcomas seem to be becoming more prominent. I had radiation induced Angiosarcoma of the..." + (show)
@posi9

Although rare, Sarcomas seem to be becoming more prominent. I had radiation induced Angiosarcoma of the breast in 2019 (age 60) with a reoccurance in 2021........... Both required surgeries only. Unfortunately, the cancer has metastasized to the lung. .......so now it’s the waiting game for the lung biopsy. THE WAITING IS THE WORST ESPECIALLY WITH SUCH AN AGGRESSIVE CANCER. Prayers to all.

Jump to this post

I have spots on lungs.
New chemo yesterday, erubilin

REPLY
Terriebikes | @bicycle3 | Feb 9, 2023
In reply to @gtreece "My name is Gloria. I am diagnosed with Uterine leiomyosarcoma. In 2020 I had a stage..." + (show)
@gtreece

My name is Gloria. I am diagnosed with Uterine leiomyosarcoma. In 2020 I had a stage 1B tumor removed from uterus. I also had a complete hysterectomy. The tumor was estrogen sensitive so I was placed on Letrozole. The side effects have been challenging. Two and a half years in a mass was found through a CT scan. Pet scan reveled no spread. Tumor was removed laproscopically. Tumor was located on right side attached to lower branch of aorta. Genetic study to be conducted. So far I am told only treatment is to remove tumors as they appear. Not sure what questions to ask the medical professionals or how to advocate for myself effectively. I read conflicting information with what my oncologist is telling me, "that radiation and chemo are not effective for this type of cancer" but see trials with chemicals and radiation therapy. Would like to know and understand more about treatments why they work or why not. Also want to know if continued use of Letrozole will be effective in some way. Appreciate any information/advice you may have about this issue.

Jump to this post

started new chemo yesterday, erubilin

REPLY
1 reply
Terriebikes | @bicycle3 | Feb 9, 2023
In reply to @gemmalt "Was this for metastatic sarcoma that has spread to lungs?" + (show)
@gemmalt

Was this for metastatic sarcoma that has spread to lungs?

Jump to this post

yes

REPLY
1 reply
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)
@luna6922

Hello. I have the uterine leiomyosarcoma as well. Full hysterectomy in 2021. In 2022 removed a tutumor from my lung. I have been told the same information. I have follow up ct scans every 3 months and hope each time that I have clear scans. With all my research and w my drs I find the the same information you have. That I need to remove the tumors are they come up. If I learn anything new I'll post to you.

Jump to this post

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.

REPLY
1 reply
gtreece | @gtreece | Feb 9, 2023
In reply to @bicycle3 "yes" + (show)
@bicycle3

yes

Jump to this post

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

REPLY
gtreece | @gtreece | Feb 9, 2023
In reply to @bicycle3 "started new chemo yesterday, erubilin" + (show)
@bicycle3

started new chemo yesterday, erubilin

Jump to this post

Wishing you the strength and best outcome in your treatment

REPLY
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)
@gtreece

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.

Jump to this post

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 ...

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