Have taken Tamoxifen and having reoccurring ADH & ALH

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kjdalton
kjdalton Member Posts: 4

I'm new to this site and have a question. I took tamoxifen for 5 years after being diagnosed with ADH in 2001; I
have since had two more biopsies that have come back ADH & ALH - my
question is has anyone else taken tamoxifen for the 5 years and still
having reoccurring issues with ADH & ALH? My most recent biopsy was in Feb 2014.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2014

    I was diagnosed with LCIS over 10 years ago (a step further along the bc spectrum; a stage 0,  in-situ, non-invasive bc) and took tamoxifen for 5 years (I still take evista for further prevention). My understanding of the purpose of tamoxifen is to help prevent invasive bc;  I don't think it actually does much to prevent the pre-cancers themselves (ADH and ALH) or the in-situ non-invasive cancers (LCIS and DCIS), but I could be wrong. My main objective in taking preventative meds (tamox or evista) is to avoid anything invasive. Most of the literature says that the tamox has benefits that extend 5-10 years beyond when you finish taking it for 5 years. (so taking the evista may be overkill, but all my docs feel it's a good idea, so I stay on it for now.

    Anne 

  • Cometsmom
    Cometsmom Member Posts: 23
    edited March 2014

    Hi there, I hope you get some more answers about your issue regarding the tamoxifen. I just had my second excisional for ADH (first dx in 2010 on the left and this February on the right).   My oncologist is recommending 5 years tamoxifen and in fact I'm seeing him tomorrow to discuss further.  My main question for him was going to be does it prevent ADH from recurring...unfortunately in your situation it didn't and that's the reason I think I'm going to pass on it.  How long after you finished the tamoxifen from 2001 did you have another recurrence of the ADH/ALH?  He explained benefits up to 5-10 years so I'm wondering how much time passed...I had hoped it would stop these areas from developing (and thus avoid another bx) but from what I've been reading, it doesn't. Sorry you are going through this again

    Lynn

  • kjdalton
    kjdalton Member Posts: 4
    edited March 2014

    Hi Lynn,

    I took Tamoxifen from 2001-2006 and my second diagnosis with ADH was in 2009 and ALH in 2014. My oncologist has now mentioned Evista - I haven't decided on that as of yet and I still have time as that I'm not post menopausal. Wish you luck on your appointment tomorrow.

    Kathy

  • kjdalton
    kjdalton Member Posts: 4
    edited March 2014

    Thanks for in information Anne - my oncologist has also mentioned Evista; I still have plenty of time to research - as that I'm not post menopausal. I was disapointed with the reoccurrances of ADH/ALH after taking the Tamoxifen but at least it wasn't BC.

    Kathy

  • Beesie
    Beesie Member Posts: 12,240
    edited March 2014

    Kathy, my understanding is the same as Anne's, which is that the purpose of Tamoxifen is to prevent ADH from developing further to become invasive cancer.  I don't know that Tamoxifen prevents the development of ADH itself.  

    It is also my understanding that 5 years of Tamoxifen is generally thought to work for about 10 years, although with less benefit over the last few years. The ATLAS study released last year showed that 10 years of Tamoxifen is more effective at reducing breast cancer recurrence risk than 5 years of Tamoxifen.  This is because the benefit of 5 years of Tamoxifen was pretty much gone after 10 years, whereas those who took Tamoxifen for 10 years continued to have benefit up to year 15 (which was as far as the study had gone at that time). This study was not done on high risk patients - it measured recurrence risk and mortality rates for those who already had been diagnosed with breast cancer - but I would bet that the results would be similar when it comes to breast cancer risk reduction.  

    So if you took Tamoxifen for 5 years starting in 2001, my guess is that you most likely are not getting any further risk reduction benefit from it at this time.  Probably not what you want to hear.

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