12.21.18
I've been trying to find a blog or some support groups for this rare disease. I wasn't able to so I decided to create my own. I'm very curious to see if people will find me through this. I'd love for it to be a way to exchange and support with others.
A bit about me. 40 year old female living in nyc. When I first got my diagnosis, I was so confused. As a New Yorker the only GCT I know is Grand Central Terminal, a large train station.
So what is GCT? My basic understanding is it is a rare type of sex cord stromal ovarian cancer. Ovarian cancer itself is rare, making up 3% of cancers. GCT is 2% of that 3%. The main ovarian cancer most people have heard of falls into epithelial. The mortality prognosis for GCT is fairly good. The problem is it is a recurrent rare disease so there's not a lot of data on how to treat it, and it often recurs. So I may be dealing with this as often as every year to every few years. More in-depth info here: https://www.google.com/amp/s/amp.cancer.org/cancer/ovarian-cancer/about/what-is-ovarian-cancer.htm.
A bit about me. I have always been a two-fer. Whenever I've taken personality tests, Myers Briggs, dating tests, you name it, I always get a result that says I am 2% of the population. This was no different.
So last year I was freezing my eggs and did not get a good result. Went through 2 rounds and only got 3 eggs total. My doctor thought it was bc my endometriosis from before (I had it during college) was back and suggested surgery.
Fast forward. During surgery in December 2017 when the surgeon opened my ovary to clean it out, she said there were "grape" like things that came out. She and the doctor didn't know what it was, and one doctor manually held my ovary shut while the other one tried to find a pathologist during the holiday season. That was how I got diagnosed with gct.
The recommendation is to take out the left ovary. However given I was already 40, didn't have many years left to have a kid, and it was a slow growing benign tumor I chose to keep it in and heavily monitor it.
So my scans and blood were clear in February and May. Then in November during Thanksgiving I had an ultrasound done. They then called me back to get an mri done. They saw some inflammation in my left tube. My doctors said they needed to take my left ovary and tube out - a salpingo oophorectomy- a very cute sounding make to taking out the ovary + falllopian tube. I was fine with it since I had asked for more time and knew it was now time. The MRI was clear and everyone expected we'd just take out the left and that would be it.
Wrong. When they went in there was tumor everywhere. They ended up having to take out both ovaries, my uterus, part of my bladder, colon, omentum. I woke up barren, and then they told me I had cancer and needed chemo. I was so confused and in shock. Honestly, it was the barren part that bothered me most. I knew there was a possibility to cure the cancer, but no amount of money in the world could buy me new ovaries and a uterus.
So this is how this whole ordeal began.
I've been trying to find a blog or some support groups for this rare disease. I wasn't able to so I decided to create my own. I'm very curious to see if people will find me through this. I'd love for it to be a way to exchange and support with others.
A bit about me. 40 year old female living in nyc. When I first got my diagnosis, I was so confused. As a New Yorker the only GCT I know is Grand Central Terminal, a large train station.
So what is GCT? My basic understanding is it is a rare type of sex cord stromal ovarian cancer. Ovarian cancer itself is rare, making up 3% of cancers. GCT is 2% of that 3%. The main ovarian cancer most people have heard of falls into epithelial. The mortality prognosis for GCT is fairly good. The problem is it is a recurrent rare disease so there's not a lot of data on how to treat it, and it often recurs. So I may be dealing with this as often as every year to every few years. More in-depth info here: https://www.google.com/amp/s/amp.cancer.org/cancer/ovarian-cancer/about/what-is-ovarian-cancer.htm.
A bit about me. I have always been a two-fer. Whenever I've taken personality tests, Myers Briggs, dating tests, you name it, I always get a result that says I am 2% of the population. This was no different.
So last year I was freezing my eggs and did not get a good result. Went through 2 rounds and only got 3 eggs total. My doctor thought it was bc my endometriosis from before (I had it during college) was back and suggested surgery.
Fast forward. During surgery in December 2017 when the surgeon opened my ovary to clean it out, she said there were "grape" like things that came out. She and the doctor didn't know what it was, and one doctor manually held my ovary shut while the other one tried to find a pathologist during the holiday season. That was how I got diagnosed with gct.
The recommendation is to take out the left ovary. However given I was already 40, didn't have many years left to have a kid, and it was a slow growing benign tumor I chose to keep it in and heavily monitor it.
So my scans and blood were clear in February and May. Then in November during Thanksgiving I had an ultrasound done. They then called me back to get an mri done. They saw some inflammation in my left tube. My doctors said they needed to take my left ovary and tube out - a salpingo oophorectomy- a very cute sounding make to taking out the ovary + falllopian tube. I was fine with it since I had asked for more time and knew it was now time. The MRI was clear and everyone expected we'd just take out the left and that would be it.
Wrong. When they went in there was tumor everywhere. They ended up having to take out both ovaries, my uterus, part of my bladder, colon, omentum. I woke up barren, and then they told me I had cancer and needed chemo. I was so confused and in shock. Honestly, it was the barren part that bothered me most. I knew there was a possibility to cure the cancer, but no amount of money in the world could buy me new ovaries and a uterus.
So this is how this whole ordeal began.
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