Hi, Does anybody else have Atypical Lobular Hyperplasia? I had MRI which showed something suspicious and biopsy has diagnosed it as Atypical Lobular Hyperplasia. I don’t really know what to do for the best. I’m having a mastectomy for extensive low grade DCIS and am starting to thnk should have bilateral to remove any element of risk from the ALH. Can anyone help?
According to Susan Love’s Breast book (Pages 203-205) it says that if we refer to ‘in situ’ (both ductal and lobular) as ‘pre-cancers’ then atypical hyperplasia can be referred to as ‘pre-precancer’ so that sounds re-assuring.
Apparently there haven’t been a lot of studies on the significance of atypical lobular hyperplasia but recently a study was undertaken by a Dr David Page (presumably in the US) on 252 women who had been diagnosed by a surgical biopsy. 50 of the people studied went on to develop invasive cancers which were on the same side as the ALH 75% of the time but that it took on average 14.8 years to show up. It says that the lesions do not progress rapidly and often they do not progress at all. It also goes on to say that what ALH means depends on how it was diagnosed. If it was found on a core biopsy then there is a 20-25% risk that there may be an in situ or an invasive cancer next to it. However, if ALH was found during a larger surgical biopsy then you can be more confident that the whole area has been removed. Most surgeons agree that the best program is close follow-up so that any in situ or invasive cancers are found. It says that close follow up is 6 monthly physical examinations and yearly mammograms.
If you have DCIS in one breast and ALH in the other and have been biopsied it might be as well to ask to have another mammogram or MRI on the breast with ALH to see whether the biopsy has removed all of the ALH rather than have a bilateral which might be unnecessary.
Hope this information helps.
Best wishes to you.
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