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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.

Profile picture for suemarie3
suemarie3 | @suemarie3 | Sep 6, 2023
In reply to @carol4623 "Hello, I have been diagnosed with Solitary Fibrous Tumor. I had a painless “bump” near the..." + (show)
Profile picture for carol4623 @carol4623

Hello, I have been diagnosed with Solitary Fibrous Tumor. I had a painless “bump” near the center of my back which was believed to be a cyst. Upon removal, the bump was sent to pathology for analysis. It was still a bit unclear, so the tumor was then sent for NGS TESTING. I was then given this diagnosis. There is very little information on this condition as it’s fairly rare. Does anyone have a similar story? If so, how are you doing now?

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I too had a solitary fibrous tumor of the central nervous system.
Craniotomy on Feb 28,
Removed tumor from brain, pathology determined it was malignant, 6 weeks of daily radiation.
PET scan - no metastasize.
MRI - shows small aneurysm-to be watched.
Feeling good now, daily 2-3 mile walk, yoga, and eating healthy.
Fingers crossed, PET and MRI every 3 months.
The 3 F’s get me thru this now- FAITH, FAMILY, FRIENDS.
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suemarie3 | @suemarie3 | Sep 5, 2023

I had a solitary fibrous tumor of the CNS, WHO grade 3 .
Craniotomy on Feb 28, 2023
6 weeks of daily radiation.
Will have a MRI and PET scan in a couple weeks to see if the tumor is gone or shrunk.
Much anxiety.

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Colleen Young, Connect Director | @colleenyoung | Sep 4, 2023
In reply to @katie2023 "I was found to have two very rare Uterine Sarcomas with B-HCG marker: leiomyosarcoma (1 in..." + (show)
Profile picture for katie2023 @katie2023

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?

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Hi @katie2023, you may be interested in joining this discussion:
- Endometrial stromal sarcoma (ESS): What treatment did you get?
https://connect.mayoclinic.org/discussion/ess-cancer/
And exploring the discussions related to leiomyosarcoma https://connect.mayoclinic.org/search/discussions/

If you would like to request a second opinion with Mayo Clinic experts, you can get started here: http://mayocl.in/1mtmR63

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Profile picture for Colleen Young, Connect Director
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Colleen Young, Connect Director | @colleenyoung | Sep 4, 2023
In reply to @carol4623 "Hello, I have been diagnosed with Solitary Fibrous Tumor. I had a painless “bump” near the..." + (show)
Profile picture for carol4623 @carol4623

Hello, I have been diagnosed with Solitary Fibrous Tumor. I had a painless “bump” near the center of my back which was believed to be a cyst. Upon removal, the bump was sent to pathology for analysis. It was still a bit unclear, so the tumor was then sent for NGS TESTING. I was then given this diagnosis. There is very little information on this condition as it’s fairly rare. Does anyone have a similar story? If so, how are you doing now?

Jump to this post

@carol4623. I'm sure you've already seen this information about solitary fibrous tumors from Mayo Clinic, but just in case:
- Solitary fibrous tumor https://www.mayoclinic.org/diseases-conditions/solitary-fibrous-tumors/cdc-20395823

You may also wish to connect with @suemarie3 here:
- Solitary fibrous brain tumor WHO Grade 3. https://connect.mayoclinic.org/discussion/solitary-fibrous-brain-tumor-who-grade-3/

Most solitary fibrous tumors are not cancerous. Has it been determined if your tumor is malignent or benign? What are the next steps?

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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.

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2 replies
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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)
Profile picture for Dream.catchr @mickeyambrose49

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.

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Mine are uterine (started in the uterus) Sarcoma.

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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)
Profile picture for janetamyshapiro1956 @janetamyshapiro1956

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

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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!

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Profile picture for katie2023
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?

REPLY
1 reply
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bardona | @bardona | Sep 3, 2023

Anyone diagnosed with secondary angiosarcoma of the breast?

REPLY
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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

REPLY
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