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.

Dream.catchr | @mickeyambrose49 | Sep 1, 2023

In reply to @elcee "Gu, I am recently diagnosed with Leiomyosarcoma. I am interested in chatting with others who are..." + (show)

Would you mind sharing what leiomyosarcoma is? Is it in the bone? How did you know you had it. What were your symptoms. The possible chondrosarcoma(still need biopsy to confirm) I have in my femur is large 10cm x 2.2cm and was only accidentally found on a bone scan because my oncologist wanted to show me the breast cancer I have did not spread so she ordered a bone scan. I understand a chondrosarcoma is generally not breast cancer that has spread and I am thankful for that and really thankful that I kept bugging my doctor with the fact that I just did not feel well. I’m curious if you physically felt sick before being diagnosed.

dbmenger | @dbmenger | Sep 1, 2023

In reply to @amanzhou "Here, I just want to help my brother-in-law. My brother-in-law has been diagnosed with High-grade sarcoma..." + (show)

Hi! Nine years ago I had a spindle-cell sarcoma and my upper right lung lobe removed. Little bugger looked like a cigar butt in the X-ray.
The PET scan had shown two but the surgeon found only the one (luckily it hadn’t moved to the lymph nodes so no radiation or chemo.
My six-moth CT scan showed a growing node in my upper left lobe so I have another CT scan next week. Sigh. If it’s another sarcoma it’ll be same song, second verse as to treatment, I imagine.
My oncologist says these are very rare (no autographs, please) and that they usually reoccur within a year. My pulmonologist isn’t worried so I’m looking on the bright side.
I’m still here and feeling fine. Whatever it is my doctors and I will deal with it. I’m blessed I have had a fairly easy time of it compared to the warriors I see in my oncologist’s office!

elcee | @elcee | Sep 1, 2023

Hi (Not Gu Lol) to all who have responded. Very nice to hear from some people who are 5 year suvivors. Congratulations! Gives more hope than reading the leiomyosarcoma sites! Regardless, I am definitely learning that there are many different types of sarcoma, and even different situations with the subtype leiomyosarcoma so every individual's situation and treatment plan and response will be different. I became aware of mine when I fell during an excercise class and found a very painful lump and pain in my clavicle the next day. After several months of being misdiagnosed and therefore being treated inappropriately I finally found an orthopedic provider who ordered the appropriate testing (CT scan) which found the growth in my clavicle which caused my clavicle to break. After many more tests--mote CTs, MRI, PET, biopsy and some type of genetic blood test I was diagnosed with leiomyosarcoma. Primary site inable to be determined. Leio is a cancer of the smooth muscles and bone. Stage 4 (advanced) None in my lungs, some on liver and a few other muscles in various locations. Not cure able but treatable. Not eligible for surgery and did not want to delay chemo by doing radiation, so I began chemo and have had 2 treatments so far. Hoping to actually shrink it instead of just keeping it from spreading. Time will tell how my body responds.

janetamyshapiro1956 | @janetamyshapiro1956 | Sep 2, 2023

My neice as diagnosed with synovial sarcoma three years ago. She is now thirty. Did the t cell trial at MD Anderson. Looked like a miracle for a few months, then it was bag. Tumors are around heart and lung. She went back to Israel with her parents over a year ago and has been on low dose chemo, in and out of the hospital every other week. She recently had another T cell trial which apparently failed because my cousin, herbfather wrote me last night that scans show more tumors and others grown. The doctor told him she only has a few months. Anyone have anything we haven't done or thought of.? The doctors last year at MD Anderson told her she only had a few weeks to live, but the low dose chemo in Israel showed that wasn't true. If only AI was faster in changing all this.
Any ideas are greatly appreciated. Thanks

bardona | @bardona | Sep 3, 2023

Anyone diagnosed with secondary angiosarcoma of the breast?

katie2023 | @katie2023 | Sep 3, 2023

I was found to have two very rare Uterine Sarcomas with B-HCG marker: leiomyosarcoma (1 in 100,000) and Endometrial Stromal Sarcoma (1 in a million). Lucky me. I’ve done surgery, it came back or never fully gone as my HCG never gone back to normal. PET showed it’s all over “residues” as it was found in nodes after biopsy from Hysterectomy. I’m now looking into the 9 common things people with radical remission have done and the “breathing 42 mins before sunrise” has really reversed my lung deterioration symptoms as it started to itch/cough and I have to sleep seared. I am also using the music and spiritual cleansing or meditation techniques too. I’ll be venturing on alternative meditation or repurposing drugs through Care Oncology promoted in Jane Mclelland’s book on How to Starve your Cancer. All the meanwhile, I’m waiting for more lab results (Next Generation Sequencing) and for UCSF to give me a second opinion. I’m about to explore Mayo Clinic and Sloan Kettering too but not sure how significant their opinions be for these very rare types of cancer. Anyone have advice on using any other place for second opinion or experience with this type of cancer?

katie2023 | @katie2023 | Sep 3, 2023

In reply to @janetamyshapiro1956 "My neice as diagnosed with synovial sarcoma three years ago. She is now thirty. Did the..." + (show)

Check out books: Radical Remission by Kelly A Turner, PhD (very inspiring stories of people who had stage 4 and survived) with description of common things the 1000 survivors all do. Good luck and continue to find peace and joy!

katie2023 | @katie2023 | Sep 3, 2023

In reply to @mickeyambrose49 "Would you mind sharing what leiomyosarcoma is? Is it in the bone? How did you know..." + (show)

Mine are uterine (started in the uterus) Sarcoma.

mywimb569 | @mywimb569 | Sep 3, 2023

I’m hoping to learn more abt synovial sarcoma. My young adult nephew has been diagnosed. It originated in his arm. He did rounds of chemo and after was in remission. Now he has areas in his lungs. Radiation treatments did not help.