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Old 02-05-2009, 07:23 AM   #7
Lien
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Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
I'm in a similar situation, and here in the Netherlands 5 years is the norm. I talked to my surgeon about it in Sept. and he said the at the end of 2009 they expect to see the results from a trial looking at prolonged AI use. There seem to be preliminary results that show a benefit after 5 years. As you are so young, I think prolonged AI use could be beneficial.

About everybody eventually succumbing to cancer: I don't believe that for a moment. I know of several women who survived their cancers for over 20 or 30 years and died of other causes.

Why would a doctor say something like that? What good does it do? Does it make anyone feel better? Does it improve your QOL? Does it change your prognosis? Does it change your treatment choices?

Osteoporosis is a serious illness and can be lethal. Complications after a fracture can cause a chain reaction, which may lead to death. So do take it seriously. Having said that, I remember reading somewhere that many women who experience boneloss in the first two years of AI use, seem to stabilize after those two years. Indeed, my dexa scan showed no change last fall. I am not on any kind of bisphosphonate, as I have severe jaw problems already, and don't want to exacerbate them.

Now about deciding whether you should continue using an AI: perhaps you could ask your doctor to run your stats through Adjuvant, to see what your residual risk of recurrence after 5 years would be. There's a calculator for those who have been on Tamoxifen for 5 years, and s/he could use that. It's not perfect, but it could give both of you some idea of what your odds could be. If your risk is low, and your dexa scan shows significant boneloss, you may decide that the additional effect of prolonged AI use is not worth it.

I hope you find your answers soon. Let me know if I can be of help in your decision making process. I know it's scary to not do anything to keep the beast at bay!

Jacqueline
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Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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