ALH 2 ways, Tamox or not

I have classic LCIS, which is farther down the path as ALH. (I also have ALH.) Both ALH and LCIS are sometimes/often classified together as 'lobular neoplasm'. But, just about everything concerning LCIS, thus probably ALH, is controversial. So don't be shocked if you get different opinions from different doctors.

I am not sure whether or not you have had the spot surgically excised. If you haven't you may want to strongly consider that. (Up to Date, a reference, said its a 'standard of care' for ALH found on a biopsy to have it excised.) But, this too is probably controversial. The reason why they often like to excise is not to remove the ALH, or 'all the ALH', because its likely there are multiple spots of ALH in your breast or breasts, but to make sure there isn't something more concerning going on, like DCIS or invasive breast cancer, which is treated differently. Roughly 10-20% of the time these things are upgraded on surgical excision.

If you don't want to take tamoxifen, there are other anti-estrogen medications that can be used if you are postmenopausal. They have a somewhat different adverse effect profile. Also, I wouldn't take the number of posts in a forum as indicating how frequently a particular adverse effect happens. It is well known that people who have an adverse effect post MUCH more than people who don't have an adverse effect. Studies are a much more reliable source for suggesting how often a particular adverse effect happens.

There is also the option of simply watchful waiting. If you are at higher risk, then some women opt for prophylactic bilateral mastectomies.

You may want to consider getting genetically evaluated - to see if you/your insurance will pay for genetic testing, if you're interested in that. If you have a significant genetic defect, this may affect your treatment decisions.

'High' risk is relative. I have seen papers that claim that LCIS women are not at high risk, and LCIS is more advanced than ALH. Probably LCIS women (and nothing else) have less than a 50% chance of getting breast cancer in their lifetime. It is normally thought that ALH women have a lower breast cancer risk than LCIS women. If you have more risk factors that does NOT NECESSARILY mean that you are at higher risk. (BRCA mutations may be an exception.) Lots is unknown regarding lobular neoplasia. Breast risk calculators are not necessarily accurate for an individual; all of the ones I know of say that they 'should not be used to make clinical decisions' because, while they may be accurate for a population (for example, they might be able to accurately say that, say, about 300 women in a population of 100,000 (I'm making these numbers up - so they're probably drastically wrong) will get breast cancer, they do NOT say which individual particular women will get breast cancer - that Janine, Nina, Abigail, Tamika, Emma and 295 other women will get breast cancer in their lifetime (making up women's names.)

I had a large hematoma from my excision. It took something like 6 months to go away, and turned all sorts of beautiful autumnal colors (black, purple, green, yellow.) It takes time for the body to re-absorb heme and iron. But it only looked horrible; it wasn't painful. Since the hematoma is coagulated blood, thus contains iron, a heavy metal, it shows up on mammograms. They may not be able to clearly see your 2nd cluster of microcalcs in mammograms if your hematoma covers that area.

It sure would be nice if they explained their reasoning or plan to you.

Yes, I have a 2nd breast excision scheduled for mid-Jan. 2018. I doubt they would put me back on an antihormonal, unless they find something worse like DCIS or invasive breast cancer. (I had 5 years of tamoxifen.) I did have benign cervical polyps every 18 months or so when on tamoxifen. LCIS is almost always multifocal, so there are probably other spots of ALH and LCIS in my breasts.

Strange that they should want an oncologists' opinion. They (the oncologist) aren't the ones that would be doing the surgery. Maybe it was reviewed by a person who didn't know much about breast cancer. (I have heard that sometimes/often they have RNs reviewing claims.) Once I went to a conference about infectious diseases, and the infectious disease head (of course an MD) wanted to use very expensive antibiotic X. The insurance company wrote back and wanted him to use cheap, inexpensive antibiotic Y. The MD wrote back to the insurance company that the cultured bacteria was resistant to antibiotic Y, which was why he wanted to use antibiotic X because it was the only antibiotic that the bacteria was sensitive to.

You're right - there isn't much info about LCIS and ALH. They are unusual conditions, though they cannot estimate how many women in the general population have them because you need a breast biopsy to diagnose them. Many women have never had a breast biopsy. Many studies have less than 100 patients, and they often combine ALH with ADH with LCIS to get groups large enough to study.

As far as alternatives, for example, in this study of about 1000 women, exemestane in this study did NOT have an increased incidence of thromboembolism but did have an increased risk of joint stiffness, arthralgia and osteoporosis. https://www.ncbi.nlm.nih.gov/pubmed/22855103 (There are other antihormonals too.)

I certainly hope you can get your insurance to cover an oncology visit, and get this handled to your satisfaction. I'm having my breast excision done by a general surgeon (I imagine they're less expensive than a breast surgeon, but what do I know?)

Best wishes.