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Cancer Realities: Outliving Your Prognosis
Undifferentiated sarcoma of the liver
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TimCarey posted:
I was diagnosed with undifferentiated sarcoma of the liver back in 1997, I was 12, I have been doing research on this lately and from what I have found is there is not much on this subject especially in the way of statistics and case studies. I am wondering if there is maybe a site that has more on this? possibly with my case on it and/ or statistics?
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worn1 responded:
Tim
Your cancer is so rare that is the reason for lack of information. I did find one group---very little activity-- on the cancer survivor network.
I will do some research on the web to see what I can find. Is there someone who can decipher the medical jargan or do you need the laymans terminology.
w
 
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TimCarey replied to worn1's response:
I appreciate that. I found the same site and saw the activity had basically stopped. I've been trying to research for about a week now and I feel like I'm stuck in a loop coming across the same sites over and over again. I was told that my case would be in a medical journal somewhere which is what I initially started looking for then noticed I couldn't find hardly anything on this disease at all. For the translation question I'm pretty good at finding out what the terms mean and understanding what is being said so whatever you find would be very helpful.

Thank You
 
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worn1 replied to TimCarey's response:

tim
have you checked out clinical trials and the refeences given at the end of articles you have read?

National institute of health

willl post what i find later today. off to an appoitment
w
 
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TimCarey replied to worn1's response:
I've kinda looked at them. I know the names of the doctors involved and figured their names would be part of the publishers name but have not found any yet that matched. If this is wrong please let me know and I will start from the beginning again and start looking closer at the references given.
 
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worn1 replied to TimCarey's response:
Tim
I am moving us back to the top I have asked some one to see if she can help
w
 
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TimCarey replied to worn1's response:
Thank you so much for your help on this. I do have one last resort if I cannot find anything and that is to go talk to the doctor that treated me back in '97. He is still at the same hospital and I am hoping if I cannot find anything I can go talk to him and maybe he will remember a little bit about my case since it was so rare.
 
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susiemargaret replied to TimCarey's response:
hello, tim and W --

this type of liver cancer is rare, yes, but there are many articles on various studies that have been conducted with respect to treatment -- check out http://www.google.com/search?sourceid=navclient&ie=UTF-8&rlz=1T4DMUS_enUS305US305&q=%28undifferentiated sarcoma liver%29 and http://scholar.google.com/scholar?q=(undifferentiated sarcoma liver)&hl=en&as_sdt=0&as_vis=1&oi=scholart -- so i'm a little confused about your previous messages.

however, i had one idea that you've probably already considered, but i offer it just in case not. have you contacted the major liver professional/education/advocacy organizations? i think they would be the fastest way to find specific info, because practically all of them have sections on "education" or "resources" or the names of medical people who would know how to find what you are looking for (see PS). the ones that seem most likely to me are --

-- the american liver foundation, http://www.liverfoundation.org/downloads/alf_download_892.pdf ;

-- the american association for the study of liver diseases, http://www.aasld.org/Pages/Default.aspx ;

-- the natl liver foundation, http://www.nlfindia.com/index.asp ; and

-- the european assn for the study of the liver, http://www.easl.eu .

tim, if you can provide info that is a little more specific (where were you treated, for instance? what technique did they use to treat you?), it will be much easier to find the particular info you are after.

tim, i didn't understand your reference to the names of study authors being part of "the publisher's name." if by "publisher" you mean the title of a professional journal, you will do best trying to get a copy of the journal. you may have to go to a medical school library for this if it is not accessible on the internet.

tim, you say that you know the names of the study authors. you might want to "google" the lead one or two authors, see where they are now (university? govt agency? private practice? whatever?), and try to write to them directly.

i wish i could be more helpful. i hope you can find what you are looking for. if there is any other way i can help, please let me know.

-- susie margaret

PS -- some organizations require joining before you can get access to the site. my suggestion for those is to use the "contact us" link and try to ask your Q directly instead of going thru the membership routine.
 
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worn1 replied to susiemargaret's response:
Thank you susiemargaret
w
 
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TimCarey replied to worn1's response:
Thank you, Here is what I know about my case. It was 1997, I was 12, Checked in january was in for 6 weeks straight undergoing a vigorous routine of chemotherapy. I do not know the types used or program used. after the initial 6 weeks i was in and out for chemo treatments. June of '97 I under went surgery for removal and had one final round of chemo in july. This was all done at saint francis in tulsa under Dr. Kirkpatrick.
 
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TimCarey replied to TimCarey's response:
Also the information I have found seems to be different everywhere i look. The only thing that they all agree on is how to get rid of it. All the other statistics are different and only one that i have seen says they came to the hospital for what seemed to them at the time to be acute appendicitis. I had mine for 3 full months before I was able to see a doctor about it because my family did not have insurance
 
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worn1 replied to TimCarey's response:
Tim
what exactly are you looking for? you have the name of the doctor,hospital and the mode of treatment. You are still alive which is a miracle from what I have read.

w
 
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TimCarey replied to worn1's response:
I would like to know accurate statistics. I would like to find my case in particular so I know the details about what they did. I'm trying to write a book about it and some of the details are a bit hazy it being that it happened 14 years ago now. I want to write this book so I don't forget anything that happened and put it out there so people know you can make it past this as well
 
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worn1 replied to TimCarey's response:
Tim
1)Your best source of information is the doctor who treated you. He can tell you every thing you want to know and he knows where to find the paper he wrote. I am only guessing but you most likley would need permission to use his paper in your book. He may also be able to help you with where to find the stastics you want.
2)You also know the hospital so you should be able to obtain your medical records.
w


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