Hello
Yes I think chatting over the phone or email would be better, I have no problem emailing you my Path report. How do we get in contact with the person that can set this up???
This is the link for the CCS on the ladys foot....
http://faoj.wordpress.com/2008/03/01/cl ... oft-parts/ If for some reason it does not load, just google "Clear Cell Sarcoma Foot" It should be the first link that pops up.
It seems like every report that I read talks about Reoccurance, it seems that if this stuff comes back it is pretty bad.
The Oncologist measured it at 4cm on my MRI but when they took it out it was about 6.5cm and it was in 2 pieces. I have read that size of the tumor plays a huge role in prognosis, I have read that if the tumor is over 5cm it usually has spread of will spread. So I am a little concerned about the size of mine. But I am optomistic because my CT Scan was normal. I would assume that if the cells have been in my body for over 5 years I would have issues somewhere else in my body by now, but you never know. My Podiatrist is confident that he removed all of the tumor.
I am sure once my Oncologist gathers all of the information and views the Tumor, he will have a plan and an outlook for me. I am going to request a PET Scan and a Lymphnode biospy, it seems that these are very important. How has your insurance company been with the treatment and tests???? My oncologist did say that he has treated someone with Clear Cell but he said it usually occurs underneath the nail on the foot, which caught me by surprise because all of the reports that I read, mine fits the bill pretty well. It seems that this is so rare, not many people really know how to handle it. I do see the Oncologist on Monday and I am going in there with a bunch of questions.....I dont like talking to the doctors though, it seems like they answer in the politically correct answer and I just want to know what he is thinking, not what the books say....Who knows!
I have had two pathologists confirm it as Clear Cells Sarcoma, so I am pretty confident that it is. My Oncologist just wants to see everything himself so he can diagnosis it.
I did have warts on my big toe when I was younger, it never seemed to be an issue....i think I had one??? But I was young. I did not break anything when I hurt my toe, I just tweaked it. That is when I first noticed something, so I wonder if maybe the scar tissue from the injury morphed into this stuff or was it always there and I finally noticed it with that small injury..
I have not noticed anything different about my body since I have had this bump. I feel completely normal. I have always stayed in pretty good shape, I played College Baseball and since then I work out on a regular basis. I dont do much cardio, but I am in the gym about 3-4 times a week. It is driving my nuts now not being able to go to the gym becuase of this surgery. The doc still has me off my feet and on crutches.
I have never smoke cigarrettes, I do smoke a cigar from time to time. I do have a drink from time to time as well. I think this cancer is completely random, that is what is scary. My wife said couldnt you have used these odds to win the lottery and not get this crazy cancer.....it just seems so sureal. I dont like thinkig of myself as a cancer patient.,,it really ways on my mind.....
I never get sick, maybe once a year and that is just a cold. I cant remember the last time I had the flu???? My Grandfather had diabetes and my dad has high blood pressure and cholesterol. I do have Hypothyrodism, I take medication for that everyday, I found this about 5 years ago as well, but I know i had the bump before I started taking my medicine.
Where do you live now? We live in Michigan, just outside of Detroit. I am pretty sure I am German and Polish, but my ancestors have been in the states for many generations.
Feel free to send me any questions you ahve, I like talking about it....
Mike