ADH Question..Is risk affected by amount of ADH?

Options
shabby6485
shabby6485 Member Posts: 679

Hi girls,

 Been looking for any studies or information regarding "amount" of ADH and risk.  I found some information on "minimal" ADH but not sure how this affects risk.  

My biopsy said I had a microfocus of ADH near biopsy site. I posted a question on John Hopkins Breast Site and was told a microfocus is less than minimal ADH.  Not sure how that translates into risk.  I am being monitored every 6 months now but than I think I am going back to yearly.

My 6 month mammo is next week.   Thank you!

Comments

  • shabby6485
    shabby6485 Member Posts: 679
    edited January 2011

    Thanks, Anne.  I have been going every 6 months.  Actually last time, they only did the affected breast.  On monday, I assume it will be back to both.

    I had an excisional done after the ALH was discovered.  It was B9 with a MicroFocus of ALH. So, I will see what happens on Monday.

     I am very anxious.  I really despise this whole process.  It seems like 6 months just flies by and I am right where I started from.

    What did you BS recommend in regards to the ALH?  They really didn't make a big deal out of my  ALH either.  Obviously, every doctor approaches it differently as can be seen by these threads.

    Scary stuff, huh?

    Best regards 

  • bdavis
    bdavis Member Posts: 6,201
    edited January 2011

    I am chiming in... I am still very confused by the whole ADH diagnosis... I was diagnosed 11 years ago and was told to just watch it. I had a biopsy at the time and the ADH was on the path report (the biopsy was just fibroids)... then for 6 years I had yearly mammograms and met with the surgeon yearly and the gyno yearly... Now this year, after yearly mammograms, ultrasounds etc, I have cancer. So of course I question if I could have done more 11 years ago. My oncologist said I could have taken tamoxifen, but that was never suggested to me... and even now with my cancer pathology report it mentions hyperplasia, so I asked my surgeon and oncologist again, and they say not to worry... plus I will be taking tamoxifen for that. 

  • Jenna1961
    Jenna1961 Member Posts: 71
    edited January 2011
    Amount of ADH - elusive entity indeed.

    Based on core biopsy and imaging, how do you know how much is there? In my opinion, only a lumpectomy/excisional biopsy with clean margins can determine the amount of atypia.  In a three year old lump, I had only traces of atypia in one sample:" ...a single terminal duct lobular unit at the end of one core ". No action was taken.  Obviously, the sample was too small - because after six months the excisional biopsy showed DCIS, all margins positive and mastectomy 6 cm+ DCIS etc etc.

    As Beesie said, we should not look to other members' cases when making decisions. Mine is a drastic one and represents a small percentage - most never develop into cancer. But, there is a risk and I don't see why would anyone agree to have abnormal cells that reproduce and mutate. There might not be a rush, but I would not experiment with those mutations. Many DCIS also do not ever become invasive but no one wants to keep them, of course.

    Here is from the Mayo clinic: "Atypical hyperplasia is generally treated with surgery to remove the abnormal cells and to make sure no in situ or invasive cancer also is present in the area. Doctors often recommend more frequent screening for breast cancer and strategies to reduce your breast cancer risk."  That means that depending on your personality you may start having Tamoxifen to further reduce the breast cancer risk (which I would not do, assuming that all ADH was removed).

    Jenna
  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2011

    anne--sometimes (but not always) an excisional biopsy is recommended after ALH to make sure nothing more serious is in there along with the ALH. Perhaps you could ask your BS why he is not recommending one for your situation. I had one following a finding of LCIS on stereotactic core biopsy, but that is because LCIS is often found along with invasive bc. (I'm not sure how often ALH is found with invasive bc). The general recommendation for ALH/ADH is just yearly mammos and twice yearly breast exams, unless there are other significant risk factors such as family history. (then the addition of tamoxifen is sometimes recomended.)

    Anne

  • vmudrow
    vmudrow Member Posts: 846
    edited January 2011

    Just my 2 cents, but I was diagnoised with ALH January 2010 and the oncologist absolutely wanted me to take Tamoxifen for 5 years.  I would also have to have MRIs every year, which would probably mean more biopsies (I had already had 5)  With my strong family history and not wanting to take Tamoxifen, my surgeon agreed that I was a good canidate for nipple/sparing masectomies.  Had surgery in May, exchange in Oct. and couldn't be happier.  No cancer, no worry and no Tamoxifen.  Good luck to everyone....Take time and make the right choice for you!

  • leaf
    leaf Member Posts: 8,188
    edited January 2011

    This study does NOT look at the risk of subsequent invasive breast cancer (after excision) in people who get ADH (and nothing worse) on their core biopsy.  But it does correlate the extent of ADH with the risk of DCIS **at  excision**. http://www.ncbi.nlm.nih.gov/pubmed/19095574

    Note: This is a small study.

    This study, as with the other, found the extent of ADH correlated with the risk of something worse *on excision*. http://www.ncbi.nlm.nih.gov/pubmed/20173103

    This paper doesn't deal with the microscopic extent of ADH as seen on a slide of core biopsy, but of surgical margins on excision. This paper said clean margins were NOT associated with subsequent risk of breast cancer.  Only 1 out of the 155 ADH patients in this study went on to get invasive breast cancer in a mean of 26 months (range 0-119 months). None of the women with unknown or positive ADH margins went on to have malignancy. http://www.ncbi.nlm.nih.gov/pubmed/16978959  

    This is a rather short term study (mean of just over 2 years), and one can always ask for a bigger study, but it implies dirty margins of ADH were not associated with increased invasive breast cancer risk.  However, that  conclusion is based on comparing 1 to 0, which is very tenuous statistically.

    If this study correctly estimates the risk of ADH to subsequent invasive cancer (when the ADH area was excised), then these kind of studies would be very hard to do, since the number of women who get breast cancer is so very low (<1% over 2 years.)  You'd need a much larger study to actually get ideas about the risk of ADH, with or without information about ADH extent.

    All these studies are small, with subject sizes <=200 or so, and the number of people who subsequently get DCIS or invasive much, much smaller.

    I can't find studies that look at extent of ADH (after surgical excision) and long term (>=5 year) DCIS or invasive breast cancer risk.But I haven't looked at all the Pubmed references.  You are free to try :-).

  • tj1961
    tj1961 Member Posts: 3
    edited January 2011

    Anne:

    I too have a diagnosis of ALH.  I had two stereotactic biopsies because I had two different areas of concern.  I got a second opinion on my pathology.  Both path reports reported  ALH.  My first opinion said ALH  and monitor with mammograms.  My second opinion noted that in one of the samples my ALH was associated with microcalficiations and recommended that site have an excisional biopsy.  My BS said excisional for both.  I just had the procedure and am waiting on the path.  I feel like I have a better piece of mind now- and by the way I will be getting a second opinion on this path too.  I would recommend for your piece of mind to do the same, your doc can send it the Mayo clinic, Vanderbilt, Standford  or somewhere else for a second opinion. Or get another opinion from another BS.  Good luck- uncertainty is no fun!

  • tj1961
    tj1961 Member Posts: 3
    edited February 2011

    Anne 1962:

     My mother is a bc survivor. She was diagnosed at 56, post menapausal.   I also have second degree relatives on both paternal and maternal side an Aunt and two cousins, whether they count or not is unclear.  I also have dense breast tissue. My first path just continues to show ALH.  I will let you know what the second opinion says and what my dr. says.  Good luck to you too.  tj1961

  • tj1961
    tj1961 Member Posts: 3
    edited February 2011

    Anne 1962:

    I am a firm believer in second opinion regardless.  I have had second opinions before and have gotten better options on other health issues.  ALH and how to manage it is very controversial.   It could give piece of mind or new ideas.  My excisional biopsy path did show something a little different.  I don't know what exactly it means yet or if it will change how I manage or monitor my risk.  The original path said ALH.  The excisional biopsy path said ALH with ductal involvement.  I meet with my Dr. later this month.  BTW the first surgeon I met with said surgery wasn't necessary and I should just to chemo prevention drugs and he didn't believe my family history was important.  I went with the opinions of the Dr. and the pathologist. 

Categories