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Old 09-16-2004, 12:38 PM   #1
michele u
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I have wondering lately about how they can give people "prognosis's". I sent my dr a email asking him this ?. I don't understand why they can tell you how long you will be disease free on the number on lymph nodes involved. For instance a person with 3 positive nodes, it could either be in the blood stream or not. Same with a person with 30 positive nodes. It could be in the blood stream or not. My ? was, if there is no evidence of disease at say like 2 years for both people, then whey will the person with 30 pos nodes have such a worse chance of being disease free years out? He told me it was because they don't have anything more to use as a marker say that who will be alive in 5 or 10 years. But then when you look up the stats the person with more nodes with have a greater chance of not beating it. Can anyone else shead light on this?
Oh and another little motto of mine now is:
This may be the last chapter of life,
but it sure isn't the last page!! (i made that up)
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Old 09-16-2004, 03:29 PM   #2
Kristen
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Michelle,
I was wondering the same thing. If you look up Genentechs web site, they say how her2 is more aggressive and has a poorer prognisis with Metastatic bc, because that is all they have a label for.
Then you hear from somewhere, and it is in posts that the higher the grade the better response, but not at genentech? They tell you about on going or closd studies but you can not find any data on them, I hope the link Joe provided that they will be listed.
Where does the info come from. It's not being reported by the company that makes it... Are they individual studies from out sourcing? I know I was told at the beginning that I have a 50% chance of this not coming back. My radiologist said from what she has seen is IF it comes back it is usually within 2 years. She didn't mention node involvement. Who really knows. Remember we are the ones the study is being done on and all the results are not in. But it is frustrating.
My breast surgeon told me that er/pr positive if caught early had a 76% chance of a cure and it would rise to 90% if the individual attends one support group meeting. They can run studies on that but they can't tell us anything.
I like your motto, but it's not the last chapter, it's just one chapter in your life, and when you are NED other chapters will open up. I know you know that, your too positive not to. Hope this makes sense as this is done in the early am, another sleepless night. take care k
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Old 09-16-2004, 11:45 PM   #3
Rozebud
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Michele - I think that what they are saying is that if they could predict who would have a recurrance and who wouldn't, they would be much farther down the path of a cure and individualized treatment. They don't know why some people recur and others don't. Only that statistics show that if you have certain characteristics (e.g. larger tumor or more lymph node involvement) that stats show more people don't survive. My onc won't give me a prognosis. I only learned my related stats by doing a lot of research and looking at the Mayo site, which was IMO like asking several onc's their opinions. And that's all they are - broad brushed opinions.

I kind of view myself as someone that is planning on making the next round of stats better so that future patients have a better prognosis because I (and all of us) are in the "make it" group.
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Old 09-17-2004, 12:11 AM   #4
michele u
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you all are so right. I already think it is a miracle that i had 34 pos nodes and didn't have it anywhere else at dx. Then i made it to my one year anniversary NED. God has given sooo many miracles already i hate to think i deserve another(but if he's willing to give one i won't turn it down!) ANd i was told also that higher grade tumors might repsond to chemo better because they are growing faster and the chemo will get them while they are replicating.
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Old 09-17-2004, 12:35 AM   #5
JoJo
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Michele, I just saw a nurse practitioner for a follow up appointment yesterday. She was subbing for my regular nurse pract, when she was away on vacation. Since I saw her only once before my appointment, I was curious to hear what input she had on prognosis.

She's been taking care of cancer patients for years, I think she's in 50's or 60's. Anyway, some patients worse than mine have been around for 5-7 years under her care. She also told me she recalled that there was a patient, also whose cancer was worse than mine, was able to stay around for 15 years, under my regular nurse pract's care. Each case is very unique & individualized.

Remember I'm stage 4 recurrence, with 17 positive nodes at original diagnosis. My oncologist won't give me a prognosis, too.
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