atypical lobular hyperplasia plus risk factors

I have been diagnosed with ALH thru a fine-needle biopsy. This was my 2nd biop, first one 3 yrs ago showed normal calcifications. I understand that an ALH diagnosis is a risk factor for cancer and is usually watched. However, this is not my only risk factor. I'm over 50. I have dense breast tissue. I have a strong family cancer history (mother died of ovarian, aunt of leukemia, paternal grandmother of breast, niece survivor of bone cancer). I myself was diagnosed with thyroid cancer and treated with RAI in 2001, which according to studies increases my chances of developing breast cancer by 50%. Since I now have a number of breast cancer risk factors, more aggressive treatment seems to be suggested. I am seriously considering dual prophylatic mastectomies with reconstructive surgery. My doctor will not recommend the surgeries but will support my decision to have it. My questions, considering the numerous risk factors I had on top of this recent ALH diagnosis is dual mastectomies too extreme? If I wait and watch with regular mammograms how safe will I be from the possibility of future cancer development?

[CCF-RN,MSN-JS]

Dear terhen, Risk factors are certain variables in an individual that put a person at higher risk than those of the rest of the population.  These do not mean that its a foregone conclusion that a person will develop a certain cancer.  

Preventive mastectomies (surgical removal of both breasts) is a pretty drastic measure, and it's important to realize that this procedure doesn't completely eliminate the risk of breast cancer. No mastectomy can be guaranteed to get out all of the breast tissue.

What to do in your specific situation would need to be discussed in terms of your individual risk, risk of the procedure and the benefit expected in your individual case.

[terhen]

Thank you for your reply, who do I discuss my individual risks with? I explained my personal risks to you in my question, or maybe you didn't consider them to be risks? I am feeling very frustrated because your answer seems to be the answer I get from everybody - but it's not really an answer is it? Isn't there some medical professional who can discuss this with me in "black and white" instead of giving me vague answers, like you just did. I don't mean to sound ungrateful, I do appreciate you taking the time to read and answer my question, it just didn't help much.

Please just try to answer this one question, on a scale of 1 to 5 - are the risk factors I listed in my original question - (5 factors total) - enough to make the possibility of my having future breast cancer; #1 being very small and #5 being very great?

[surgeon]

I'll give you an answer: please note I'm not the official answerer for this site. I'm a surgeon who has done lots of breast cancer care. I answer here because I like to: most likely you'll not get a second reply from the nurse, because that seems to be the way it works.

Atypical lobular hyperplasia (I assume you meant you had some sort of core needle biopsy, rather than a fine needle -- a fine needle is like a blood-drawing needle, which gets a number of cells to look at, but not a large pattern. It would be hard to make the diagnosis of ALH by fine-needle) is less of concern than atypical ductal hyperplasia. It is a possible precursor to lobular carcinoma in situ, which, unlike ductal carcinoma in situ, is considered also more of a precursor to cancer than actual cancer. So it's really 2 levels removed from cancer, and is not an absolute precusor at that. Meaning, it's not at all clear that ALH would necessarily lead to LCIS, nor would LCIS necessarily lead to invasive lobular cancer. So, in fact, with ALH most people would recommend regular followup, but nothing more. Of the cancer history you mention, the only one that's of possible significance is maternal ovarian cancer: paternal side breast cancer doesn't inherit. Nor is there a specific connection between thyroid and breast cancer. So your risk factors are not highly significant. I'm not personally aware of increased breast cancer risk from RAI: I assume you've researched it, so I'll accept your statistics. Bottom line: your risk of developing breast cancer is only minimally elevated over that of any other woman. No one can guarantee any woman what her odds are, or that mammography would always find it early. It's also true that lobular cancer is a bit more difficult to see on mammograms, in some cases. I'd say, in terms of what I'd recommend to a person in your situation, that regular exams and mammograms would  suffice. However, as you've been told by your doctor, when I've encountered a woman who's sure she'll worry herself sick prophyactic mastectomy, I've been willing to do it under some circumstances. In some cases, if I thought the level of fear was way out of proportion, I've recommended some form of psychological evaluation first. That, of course, is tricky territory, and not something I'd ever recommend without knowing the patient personally and well.

[terhen]

Thank you so much for replying, your answer was very good. You have helped me decide what to do :-)

[kel1126]

A related discussion, Hyperplasia after ductal carcinoma was started.