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.

gemmalt | @gemmalt | Feb 24, 2023

In reply to @bicycle3 "I have spots on my lungs. I have had 4 radiations and now eribulin chemo." + (show)

Keep strong, they wouldn’t give a Dad radiotherapy as he also has diffuse pleural thickening (from asbestosis) so have only offered Trabectedin he starts next week - I will also look into eribulin but I’m not sure if that’s approved in the UK
Take care and stay positive ❤️❤️

sonshine161 | @sonshine161 | Feb 24, 2023

After removing my left lung which has a large tumor, i was diagnosed with sarcomatoid carcinoma. They also found the cancer is ALK positive. I have begun treatment with Alecensa, used in ALK positive metastasized lung cancer. I hope it works.

amydunn | @amydunn | Feb 24, 2023

My grand daughter was just referred to an oncologist with them stating
There are two masses. The large one they believe is some type of malignant sarcoma (tumor in bone/tissue), And the smaller mass is a ganglion cyst. She’s 7, it’s as a result of an injury to her hand a year ago. I have no idea what I need to look into or prepare for.

Terriebikes | @bicycle3 | Feb 25, 2023

In reply to @zenbagel "Hi there, I was diagnosed with my first sarcoma in July of 2020. It was removed..." + (show)

Way too much for you to handle.
MAy God be with you all!

amydunn | @amydunn | Feb 26, 2023

In reply to @bicycle3 "Way too much for you to handle. MAy God be with you all!" + (show)

May God bless you and yours. I’ll keep you in my prayers.

joyismystrength | @joyismystrength | Feb 26, 2023

Hi. My husband was recently diagnosed with Epithelioid fibrosarcoma stage 4. He begins chemo on March 6th. I would appreciate any tips on how to best support him through this and how to deal with side effects etc. Thank you and God bless!

gemmalt | @gemmalt | Feb 27, 2023

In reply to @joyismystrength "Hi. My husband was recently diagnosed with Epithelioid fibrosarcoma stage 4. He begins chemo on March..." + (show)

Hi - good luck to him, can I ask which chemo he will be starting? Dad has dermal sarcoma and is starting on Trabectadin on 9th March, thank you and let’s all think positively ❤️❤️ Xx

joyismystrength | @joyismystrength | Feb 27, 2023

In reply to @gemmalt "Hi - good luck to him, can I ask which chemo he will be starting? Dad..." + (show)

Hi! Good luck to you all also! He is starting Adriamycin on March 6th.

brankad | @brankad | Mar 9, 2023

Hello,
I am diagnosed with MPNST. I had resection, chemo and x-knife radiation. Any experiences with this?

amydunn | @amydunn | Mar 11, 2023

In reply to @amydunn "My grand daughter was just referred to an oncologist with them stating There are two masses...." + (show)

Update stage 4
Roswell has been seeing an orthopedic doctor regarding a mass that showed up on her hand after a hand injury last may (She saw a dr. Right after the hand injury to make sure nothing was broken). We went for an MRI two weeks ago, and we were referred to a specialist at LEVINE CANCER INSTITUTE (Rare and complex). The doctor from LCI scheduled us for an ultrasound thinking it was vascular related.
Fast forward to Friday she was having extreme right knee pain with a fever. Saturday morning she still had extreme knee pain and wouldn't walk. I took her to LCH ED to get her evaluated. Her calcium level was extremelv elevated so she was admitted for fluids and Lasix. Since being here she is now on fluids, Lasix, calcitonin, potassium, magnesium and pain medicine.
She got an MRI of her pelvis and lower extremities, along with the biopsy of her hand. Mid scan the radiologist called her doctor to notify him of abnormal bone marrow pattern in all the scans.
Today we got the results and Roswell has
Rhabdomyosarcoma. She will need to have an echo, MRI of her chest, bone marrow biopsy/ aspiration, PET scan and a port put in, all which will happen sometime in the next couple days. All of these procedures are going to help them stage her cancer and find the best regimen of chemotherapy.
Our whole world has been turned upside down.