Specific Drugs/Plans for High Risk for ALH: What's Your Story?

JaneyK12

Hi,

I'm starting this topic for all of us who are postmenopausal, at high risk (but who do not have breast cancer), and whose doctors have put them on a SERM or an AI prophylactically. I'm starting this topic because I have trouble combing through the many threads in the forum to find information for our specific situation of being high risk and NOT having BC. Hopefully, we can consolidate our experiences, choice of meds, and solutions to help one another.

Here's my story.

I have ALH, but no breast cancer. This began after microcalcifications on a routine mammogram led to stereotactic biopsy and a later excisional biopsy that revealed ALH. My breast surgeon calculated my risk to be 25%. (In my family history, only my maternal aunt had BC). Per his instructions, I just stopped tamoxifen after 14 months because of a polyp and overgrowth of the uterine lining. I am going for a hysteroscopy next week to remove the polyp and have a modified D&C.

He suggested putting me on Arimidex. Of course, after researching the SEs, I'm scared but befuddled. Why wouldn't I go on raloxifene, which does what tamoxifen does without the effects on the uterine lining? I will ask him, but feel I have to respect his suggestion, since he's the expert.

Is there anyone out there who has found an alternative to the uterine SEs of tamoxifen and has done well on an AI or a different SERM?

I know all our situations are unique. But I'm convinced that putting our heads together and "comparing notes" will be the only way to sort through the labyrinth of paths on our respective journeys.

Thank you!

Janey

Icietla

HiJaneyK12. I am so sorry you have had this complication and need another surgery. You will need some cotton ponies for after your D & C surgery. I suggest you take it really really easy for a week, keep a regular watch on your (apparent) bleeding rate, and get to the nearest Hospital Emergency Room if the bleeding gets to be too much.

I do not know about their comparative effectiveness for prophylactic use in postmenopausal patients, but the AIs are believed to be better than the SERM type medicines for breast cancer prevention and control for postmenopausal breast cancer patients. Unless there is some compelling reason for those breast cancer patients not to use an AI, an AI would be their medicine of choice.

But yes, your Doctor is the expert and could explain his rationale for suggesting Arimidex for you. I think it is great that your Doctor has been so thoughtful about your case and watching out for your well-being.

The AI medicine might be easy for you. Any side effects may be well within your tolerance, and some may come and then go away before long. Whatever choices you make, I wish you very well.

Here is a BCO article on prophylactic use of Arimidex for high-risk postmenopausal women.

http://www.breastcancer.org/research-news/20140115-2

momoschki

Janey, I was dx'ed with ADH 6 years ago. Like you, microcalcifications were found during a routine mammogram. No family history. I've been told my risk is around the same as yours-- around 25%. I was 53 when first dx'ed and perimenopausal . My doctors agreed that I should pass on tamoxifen as I had recently had an episode of endometrial hyperplasia. I waited a couple of years until I was fully menopausal and have been taking Evista now for about 2 1/2 years. I do have hot flashes and insomnia, but I can't say for sure these are due to the medication, since I had them before. Perhaps the Evista makes them worse? Who knows? In any case, although unpleasant, it's nothing I'm not willing to put up with for the extra protection I'm hoping it affords me. I was very leery of depriving my body of what little estrogen I've got left by taking an AI. Besides, I already have osteopenia.

Btw, Evista has no proliferative effects on the endometrium and, unlike AI's, actually increases bone density.

Icietla

Janey, did your surgery go okay? How are you feeling now?

JaneyK12

Hi Icietia,

Thanks for asking. Yes, I'm OK. They took out a fibroid and the polyp and I had the D&C through the Myosure technique, The sedation went fine and I don't remember a thing. They must have given me a long-acting med for pain because I felt better on Saturday than yesterday. I guess it wore off. Advil is helping a lot. Waiting for the pathology report. Nervous about starting on Arimidex. I've read through some literature and Femara seems to have less side effects, so i wish that is what my BS would suggest.

Hope you had a nice holiday weekend and are doing well.

J

momoschki

Janey, glad to hear things went smoothly. When can you expect the pathology results? I've always found that it's the day after the surgery when things start to hurt (local anesthetic wears off?)

wallycat

My twin had LCIS/ALH that was found accidentally while she was having breast reduction surgery. No one ever suggested anything to her, even though I am a breast cancer patient. She's done well over 5 years without any cancer meds. She is on blood pressure meds and some studies suggest that may help prevent BC development--nothing concrete.

JaneyK12

Hi Wallcat,

Thank you for your post. That was an Interesting fact about your sister. I didn't know there were prophylactic properties to blood pressure meds. Sorry for what you're been through. Hope you are doing well and feeling great.

J

Icietla

So glad it went okay for you, and hoping for no troublesome findings in your Pathology Report.

Remember, you always have a say in your treatment. It is okay to ask questions, to get more opinions, to tell your Doctor/s of your own concerns and thoughts.

Take care.

momoschki

Just wanted to report from the Department of Good News: had my MRI yesterday and nurse called hours later to say that all was good. So maybe the Evista is doing its job? Anyway, 6+ years of this and so far, so good. Let's just hope it stays that way. Sad to say, all this screening doesn't really get much easier (for me, at least). Wishing all good results

JaneyK12

Wonderful news! So happy for you!

JaneyK12

Thank you, Icieta. Still waiting for the report. Good advice about asking questions--I usually have a list so I don't get sidetracked by the conversation. Going for a second opinion to an MO. Maybe it's a man/woman thing--but the MO is a woman so I may feel more comfortable asking certain questions.

Many thanks again. Have a great day.

J