My Story...Clear Cell Sarcoma

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My Story...Clear Cell Sarcoma

Postby Rachel R » Sun Feb 26, 2012 12:33 pm

I am new to this support group and just wanted to post my story.

Back in 2001 a small pea size lump formed on my left index finger. During a regular physical I brought it up with my family doctor. He simply brushed it off as a ganglion cyst and he told me it may just go away on its own. So I dismissed it.
Two years later I went in for another physical and the lump had grown. Not much, but there was a noticable difference. I had a different doctor this time and asked her to take a look. She simply told me it was a ganglion and I could leave it alone or could come in to get it drained. At this point in my life I did not have insurance and couldnt afford any kind of procedure. She assured me that it was cosmetic and would not cause problems. So, I dismissed this slow growing growth again.
As time went on and a visit to yet another doctor, I was told it looked like a ganglion and I could get it removed or drained. I was married by this time and had wonderful insurance but the doctor did tell me that insurance more than likely would not cover it because a ganglion cyst is cosmetic and unless it caused pain the bill would come out of my own pocket. So of course, I let it go.
As the years passed the small pea size lump had now turned into the size of a grape. It had finally after all these years become quite painful and had moved close to my knuckle to the point that I could not bend my finger. I had finally had enough and made an appointment to see my family doctor and just do whatever I needed to do.
March 2011, I go into the room and the doctor looks at it and says that the best way to handle it is to pump it full of steroids. She said it will shrink it down and hopefully disappear within a few weeks. She asked if it was something I would be interested in and of course I agreed. I was in so much pain, anything sounded good. She said before she gives me the shots, she wanted to get a second opinion on it to make sure it was the right thing to do. The advisor then looks at it, says she doesn’t like the looks of it, thinks it’s infected and sends me to a hand specialist.
A week later I go to the hand specialist. He looks at it and says "wow, impressive! I’ve never seen one that big before!" He thought maybe it was calcium deposits.
He sends me for x-rays and after looking at the slides he is pleased it’s a loose mass and not affecting my bone, muscle or tendons. He assures me it IS NOT cancer because this type of cyst and its location is common.
We set a date for April 2011 to finally have this mass removed!
After surgery he tells me it’s exactly what he thought it would look like and everything went well. I’m set to come back in a week to get the stitches removed.
The day that changed my life.....I walk in, excited to get my first glimpse of a normal finger that I have not seen in 10 years. He walks in and says, "Did anyone drive you today?" I was only getting stitches out so I drove alone. He sits down next to me and says he had just gotten the pathology report in and he was so sorry but he was wrong and that it was actually a cancer called clear cell sarcoma. He explained that it was very rare and out of his 40 years in his practice he had only 1 other patient with this type of disease. He wrote it down, told me to research it. Set me up with an oncologist and x-rays of my lungs, told me I was going to be ok, and sent me on my way.
After driving home in shock and scared, the questions just ran through my head. Why me?
I did what he asked when I got home and researched it, big mistake! I have never seen so much negativity in my life. Some of the things I was reading was that I could possibly not survive past 5 years after first being diagnosed. My world was shattered! How could this normal benign lump (originally thought to have been) turn into a very rare and dangerous cancer?
My first visit to the oncologist was a week later where the x-rays on my lungs were clear and they scheduled me for many test and scans to rule out that it had spread.
A PET scan, MRI of my hand and brain, CT scan, and lots of blood work were in the weeks to come. Thanks to many prayers, everything came back normal! On another note though, we still needed to get clear margins from my first surgery but there was no way to tell for sure if the cancer was still there. (Microscopic cells may have still been lingering)
The decision was made in June that the best way to get clear margins was to amputate my finger and part of my hand. I was crushed, but would do whatever I had to.
This leads up to today where I’m recovering and learning how to get along with 9 fingers. The surgeon did a great job and I’m doing very well! We have currently turned to alternative medicine in hopes to keep lingering cancer cells away and being able to grow. The Dr I found has put together what he feels is a very comprehensive supplement regimen for my situation. He does not promise that the cancer will never return but he is hopeful this will help fight the cancer. Also my diet will have to change. (Mostly organic and natural foods.)
Rachel R
 
Posts: 1
Joined: Fri Feb 24, 2012 10:59 am
Location: Myerstown PA
Cancer Diagnosis: Clear Cell Sarcoma
Relationship To Patient: Self

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