Sep 9, 2017 09:32AM - edited Sep 9, 2017 09:51AM by leaf
Of course you feel scared and anxious. This post is NOT intended to encourage you OR discourage you from your plan of action. Each person is individual, and no one can tell you how you feel or what you should decide. I'm just trying to give you a feeling of the numbers.
Neither FEA or ALH are considered actual breast cancer. So normally these posts would go into the 'High risk for breast cancer' category.
Different studies differ, but the studies are often small. The ALH does put you at higher risk of breast cancer, but, in this study https://www.ncbi.nlm.nih.gov/pubmed/25639678 the FEA did not - people with both FEA AND atypical hyperplasia did not have any higher risk than those with atypical hyperplasia alone. (Almost half of the people in this study with atypical hyperplasia also had FEA.)
However, the number of people involved is small.
But the 'science' of breast cancer prediction is in its infancy. For example, in this article, unless you have a BRCA mutation or chest radiation TREATMENT (such as for lymphoma) or Big Time radiation exposure (such as near Chernobyl or Hiroshima), we are VERY POOR at predicting any one woman's risk of breast cancer, even in the normal population. https://academic.oup.com/jnci/article-lookup/doi/1... (This will give you some idea how poor we are at predicting any individual woman's risk of breast cancer in the modified Gail model, in this study. If a prediction model was absolutely USELESS, then the model would predict the correct individuals would get breast cancer 50% of the time, and the model would predict INCORRECTLY 50% of the time. In this study, the model predicted correctly almost 60% of the time and predicted INCORRECTLY 40% of the time.)
Now, they have MUCH less information about women with FEA or ALH or ADH than they do about women withOUT any particular risk factors (besides being a woman.)
The description 'high risk' is misleading. I have classic lobular carcinoma in situ, which, in spite of the name is NOT considered cancer either. LCIS is 'farther along the road' to breast cancer than ALH is (in other words, LCIS is a higher risk event than ALH, and probably less than half of classic LCIS women will EVER get breast cancer.) (For the record, I have ALH too.) For example, in this study, 698 women with atypical hyperplasia were followed a mean of 12.5 years; 143 developed BC https://www.ncbi.nlm.nih.gov/pmc/articles/PMC41676... So, just dividing 143/698 gives you about 20%. Now 20% is not the risk of DYING of breast cancer, its the risk of GETTING breast cancer (in this study, after an average of 12.5 years.)
For ANY plan of action, you need to examine both the risks and benefits of your plan. Then use BOTH your heart and head to make your decision.