My name is Chanéz, Im 24 female from pretoria South Africa.
On 8 September 2012, I went in for an operation as I had a pain in my upper thigh for about 3 years and the physio said it is a muscle, but the exercises did not make the pain go away. August 2012 I started to feel a lump in my inner thigh and thats when the doctor sent me for an MRI scan, they picked up a large (5x8) mass and i had to go for surgery. The doctor said it is 90% only a soft tissue growth, but they will do a biopsy while I’m in surgery. I woke up in ICU and was told it is Synovial Sarcoma.
To make sure it hadnt spread to areas close by I went for a sonar where they could not pick up my ovaries, so to the Gynocologyst I went. About 10 days after removing my Synovial Sarcoma I had the surgery to remove a ‘cyst’, but it turns out it was a ‘Teratoma’. Luckily nothing related to the Synovial Sarcoma.
So now I was sent to the Oncologist to find out that to do next… 6 weeks of radiation to my upper thigh. Not so Bad and it went by very quickly. So now I have to go for X-rays and CT scans of my chest and leg every 3 months for 2 years. All of the scans through these 2 years showed no recurrence. Now my checkups was moved to every 6 months. So in March I went for my first 6 month checkup, first the chest scan, which came back clean, and now a sonar of my upper thigh. They picked up a mass that was not on any of the previous sonar scans. I was sent for a MRI and there 2 tumors presented.
Back to step one… I had surgery to remove the tumors 8 April 2015 and it was on my vein and the other tumor into the muscle, so they removed both tumors and a piece of my muscle. The recovery time is longer due to the radiation I had in that area. So again to the oncologist, he was very negative an d basically said that there is nothing we can do now and we will just have to wait for a recurrence… That is not good enough!
I went to another oncologist for a second opinion, so there are 3 options, amputate the leg, in plant radiation or nano technology when the tumor recur in my leg. If it is in my lungs, i can go for chemo, but chemo has almost no effect on Synovial Sarcoma Tumors, meaning its bad news!
I feel so desperate and just like I cannot do anything! Any suggestions or advice or anything??