Atypical Lobular Hyperplasia

trippinplus1

Hi there! I got my Pathology report back from my excisional biopsy for architectural distortion. It says I have

atypical lobular hyperplasia

3mm papilloma with sclerosis

fibroadenomatoid pattern including stromal fibrosis and adenoids.

No cancer but he has me set up to see an oncologist on Friday due to the atypical cells they found. He mentioned possibly taking meds. Would love to hear feedback from anyone who has been in a similar situation. Did you take meds? Did you decide not to? What should I be prepared to ask at this appointment? Thank you in advance!

light1candle

Hi trippinplus1. It sounds like our diagnoses are very similar. About 2-3 yrs ago, the results of my stereotactic biopsy was ALH and papilloma. An excisional biopsy was then recommended which confirmed the papilloma and added LCIS (lobular carcinoma in situ) to the ALH, plus radial scar, etc.

As you probably already know, ALH and classic LCIS are essentially the same type of atypical cells, lobular neoplasia, but on a continuum based on the volume of abnormal cells, with LCIS having more of the abnormal cells filling the acini of lobular units. Anti-hormonal drugs are suggested for both conditions and may reduce future cancer risk by about 50%.

I mention LCIS because there are threads in the LCIS group on this board about the chemoprevention drugs. You did not mention your age - usually pre-menopausal women would be offered tamoxifen but post-menopausal women have additional drug choices such as roloxifene or an aromatase inhibitor. All of these drugs have potential side effects which make some reluctant to take them or make it hard for some women who take them for prevention to tolerate them. I recommend that you take a look at some of the threads about tamoxifen or AI’s from the LCIS subgroup to get a sense of what people have chosen to do and what issues they are concerned about. I myself have not taken any of the anti-hormonal drugs, preferring for now 6 month imaging, alternating between mammogram and MRI or whole breast ultrasound. However I have not ruled out taking an anti-hormonal in the future.

It’s not an easy decision and I wish you the best as you weigh your choices.

trippinplus1

Thank you so much for all that great information! I am almost 43 years old and have one ovary. Had a hysterectomy a few years ago so I guess that puts me at premenopausal. Do you mind telling me why you chose to skip the meds for now?

light1candle

Of course! I have to tell you it is a decision I have struggled with. Here is my reasoning: I was almost 64 when diagnosed and I have quite a few “co-morbidities” - systemic lupus with blood clotting problems and osteoarthritis to the extent that I have had both hips replaced, to name a few of my health issues.

The SERM’s (tamoxifen and raloxifene) both bring a higher risk of blood clots among other possible side effects and most of the aromatase inhibitors can cause joint and muscle pain. My rheumatologist felt I was not a good candidate for the AI’s due to my pre-existing joint problems, and there was concern about the possibility of blood clots with tamoxifen as well as the possibility of exacerbating retinal problems from a lupus drug I take. I had several consultations about my options, and one doctor felt she could not recommend any of the drugs for me: “First, do no harm” is what she said after reading my history. Another thought that raloxifene could be worth a try if I wanted to go that route.

The problem is that I am not altogether comfortable with the “watchful waiting” either. I would prefer to be proactive to do something that would possibly *prevent* future breast cancer rather than just hopefully catch it early by regular imaging. For that reason I have also entertained the idea of bilateral mastectomy which is another option for some women with LCIS. (ALH increases breast cancer risk too, but from what I understand not as much as LCIS so most wouldn’t suggest bMx for ALH.) A surgery like that is not something that I would consider lightly, but if I have to have many more biopsies I would consider it.

Age is a factor here, too. You are quite young at 43 to be dealing with atypia and hopefully have many, many wonderful years ahead of you. I’m not sure of the cumulative elevated breast cancer risk over time with ALH, but I think it is about half the elevated risk with LCIS. With LCIS the risk for breast cancer seems to be about 1-2% a year. If I was younger and otherwise in good health, I would very seriously consider trying one of the drugs. I’m not sure what the medical oncologist will recommend for you, but the fact that you’ve already had a hysterectomy removes one of the known risk factors with tamoxifen (small risk of uterine hyperplasia / endometrial cancer). I would be interested in hearing what the oncologist suggests in your case. Please, will you let us know what you hear and what you decide?