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Diagnosed with sarcoma? Let's share

Sarcoma | Last Active: 2 days ago | Replies (808)

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@elcee

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.

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Replies to "Hi (Not Gu Lol) to all who have responded. Very nice to hear from some people..."

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.