Diagnosed with sarcoma? Let's share

Hi @elcee
You are absolutely right - so many subtypes of leio and individual's situation and treatment plan and response will be definitely be different. Mine showed up on the outside of the uterus in 2016. My GYN thought it was a fibroid. Fast forward two years and my oncologist tells me that new growths AFTER menopause should be red flags. Interestingly, the tech who did my ultrasound in 2016 whispered to me that her mother recently died from a misdiagnosis and I should have a total hysterectomy and get rid of that "perdunculated fibroid." My GYN reprimanded her in front of me and later told me that she should be ignored because she was very emotional from the loss of her mother. In hind sight, the tech was right!

Two years later the tumor was HUGE and I felt it when I touched near my belly button. My husband had been in a traumatic car accident, so I actually didn't notice these changes until it was pretty far along.

I had NO typical symptoms because it was growing outside the uterus, so the oncologist I was initially referred to thought it was "a healthy crop of fibroids" and delayed my surgery for many weeks. Well, long story short, it turned out to be a 31 cm leiomyosarcoma with a mitotic rate that was through the roof. It was found in a fallopian tube, so they ordered a total hysterectomy. They had to remove it in three pieces. It also poked a hole in the peritoneal wall and wrapped itself around the descending iliac vein. I now have a graft for that vein because they couldn't remove the tumor from it. I suppose the tumor was drawn to it because it was a rich blood supply.

I met with 8 oncologists at various cancer centers and heard the same thing from 7 of them, The integrative oncologist that I located told me that "I would write my own story." And I suppose I have with his guidance. I had a molecular profile done and 8 gene mutations were noted. We've been working for four years to minimize/turn off those mutations and have done so for all but two, though they shift from time to time. Sometimes they show up; sometimes they disappear and others show up.
No one can explain why a tumor that big didn't metastasize, though I am grateful that it stayed put. One year later, I had a recurrence on the bladder, so went from IIB to III. But they removed it easily. It wasn't embedded at all. I was told it was "handing by a muscle thread."

I have been following the 9 healing factors in the Radical Remission book by Dr. Kelly Turner (now 10 factors in the updated Radical Hope book by the same author) and so far, I have been no evidence of disease since September 2019.

I follow a vegan no added sugar diet, take MANY supplements, including many medical herbs/mushrooms from Traditional Chinese Medicine, practice Qigong for 2 hours/day, meditate nightly, and try to stay positive. I have acupuncture monthly. My blood terrain is monitored every 4-6 months - 21 different parameters, and adjustments to my lifestyle are made.

I can't discount that there was something mystical in this whole equation - my case defies logic.

Hi @elcee, @amanzhou and @carlah, you may wish to join this discussion:
- Leiomyosarcoma: What can I expect now https://connect.mayoclinic.org/discussion/leiomyosarcoma-1/

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.

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.

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/?search=leiomyosarcoma+

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

@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?

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.

Mine are uterine (started in the uterus) Sarcoma.

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!

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?