Diagnosed with sarcoma? Let's share

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

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.

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.

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/

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.

I have/had an epithelial synovial sarcoma on my knee. To attempt to remove it, surgeon did a full knee joint removal and replacement. This was followed by a program of radiation treatments. However, six months after the surgery ( three months since radiation) my knee is still swollen. How long should I have to wait before knowing if the sarcoma has been cured?

I too have Synovial sarcoma which started in my calf. I had it removed and radiated - 25 treatments. It healed quite rapidly. However, it returned in 18 months. Had it removed again and also found it matastisiiced to my lungs.
I’m 75 and decided not to do chemo or other chemicals because the cure rate is low and side affects poor. I’ve decided on quality of life and no treatments. I am doing some home immune therapy. It’s been 9 months since last surgery. I feel fine, plenty of energy and positive outlook on the whole situation.
The tumor began growing again in my calf and is getting painful to walk. But the quality time I’ve had with my family is well worth it.
I’m praying your knee surgery stopped the Scarcoma.
I also had both knees replaced in 2019. It took a while for walking to become normal, and I had to push through some pain…with success.

You have made a brave decision to avoid further treatment. I am 77 years old and I think that if I had to choose, I would make the same choice that you have made. For the record, the knee joint replacement would not have been necessary had it not been for the sarcoma. In fact the joint replacement was the easiest part of the whole procedure. I refer to it as the "unitended consequence" of the sarcoma. However, the hardware did make the radiation treatment a bit difficult.
In Coleen's introduction to this discussion group she mentions that Sarcomas are rare. I can endorse that statement. From the time I first visited my doctor with a swollen knee joint until the time that pathologists finally diagnosed my sarcoma it took over 6 months. At first they could not identify the "atypical" cells that they found in the first biopsy. Then, after a full open surgery biopsy one of 9 pathologists identified the sarcoma. Orthopedic surgeon with many years of experience had never seen one!

Dad has sarcoma metastasised to his lungs and is on 3 weeks Trabectadin with very little side effects (nausea which is controlled by anti sickness and he’s never actually been sick). Last CT showed shrinkage so it’s holding them back at the mo - just putting it out there x

You are very brave . I admire your courage and strength . My husband has a Chrondrosacroma of the skull. He has had two major surgies . The tumor came back after 27years. First time , he had radiation. This time they could not get it all, because it was to close to his curated artery . There is no treatment at this current time ,but wait and see until
next scan .