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.

mp01 | @mp01 | Jan 19, 2023

In reply to @bicycle3 "Sadly no" + (show)

No worries. I wouldn't want anyone to have what have.

Terriebikes | @bicycle3 | Jan 19, 2023

In reply to @mp01 "Hello. I'm 60 years old and was diagnosed with rhadomyosarcoma two years ago. I'm still under..." + (show)

Sadly no

Teresa, Volunteer Mentor | @hopeful33250 | Jan 19, 2023

In reply to @whpsurvivor2022 "I was diagnosed with high grade de-differentiated liposarcoma in May 2017 in the upper right chest..." + (show)

Hello @whpsurvivor2022

Several months ago you posted about a lump that was found on your femur. I was wondering how you are doing. Did the MRI determine the cause?

pb82 | @barman | Jan 19, 2023

In reply to @william2022 "Hello @barman I am a five year survivor of high grade dedifferentiated liposarcoma. Needless to say..." + (show)

Of course. And yep, I live in India. West Bengal to be precise. And thank you for sharing, we hope you are fine now. May I ask you when did you start its treatment and how are you now? Has it re-occurred?

mp01 | @mp01 | Jan 18, 2023

Hello. I'm 60 years old and was diagnosed with rhadomyosarcoma two years ago. I'm still under treatment as the tumor has jumped from one place to another. Is there anyone out there has the same diagnose as mine? I was told this is a very rare disease in older age because it's mostly only children.

william2022 | @william2022 | Jan 17, 2023

In reply to @barman "Greetings. I have been recently diagonised with dedifferentiated liposarcoma (which was found out through biopsy after..." + (show)

Hello @barman I am a five year survivor of high grade dedifferentiated liposarcoma. Needless to say this is a hell of an ordeal. May we (collectively) ask where it is that you reside currently? My diagnosis followed a biopsy and then 4 weeks of radiation followed by surgery 3 weeks later. In my case it was determined that there wasn't a chemotherapy that would be helpful but that was 5 years ago and there are some great advances that have been achieved in the interim. I agree with the group that you would greatly benefit from a high level sarcoma center at this stage and Mayo Clinic is at the top along with a few others.

mary64300 | @mary64300 | Jan 17, 2023

Hello. I have not posted in a long time. But i started adjuvant chemotherapy yesterday. 4 days every month for 6 months.
This was after a bilateral hysterectomy including lymphnodes and ovaries at the end of October 2022.
Diagnosis: Central PNET with neuroblastoma features. Stage IIIc1
My cocktail is CISplatin / Etoposide / Cyclophosphamide.

I learnt since my last post that this is not a sarcoma but was classified as such because of the rarity of the tumor. So i am not sure i qualify anymore to participate in this group 😅.
I have looked for C-Pnet with neuroblastoma references in adults and did not find anything so maybe this is my home 😂

I am still followed by the Gynecology oncology group. But they partner with a Neuro-oncologist because of the Central System type of tumor.
So far so good as of day 2, cycle 1.

I thank everyone who helped me when i was panicking, especially our moderators. And thinking of everyone involved in this long journey, sending positive vibes.
No need to go to the fair for emotional and physical roller coaster rides 🙂

pb82 | @barman | Jan 16, 2023

In reply to @bicycle3 "I had surgery in 2001, 2020 and 2021. The chemo was in 2020 along with 15..." + (show)

Thank you so much for your response!!
Please keep us updated with your health.. we'll be grateful.
Hoping for your soon recovery!!

Terriebikes | @bicycle3 | Jan 15, 2023

In reply to @barman "@bicycle3 glad to know that it is stable now. I hope you are doing well. How..." + (show)

I had surgery in 2001, 2020 and 2021.
The chemo was in 2020 along with 15 radiations on calcified liposarcoma on hip. Chemo was once a month for 4 months. then I broke my tibia so took a few months off.
Now I finished4 radiations on chest and 2 chemos.
The chemo does not show improvement so new erubilin is prescribed. Waiting for insurance approval.
In the mean time I have applied to see doc at Sloan Kettering, 6 hours away.
Waiting for answer.