Newly diagnosed, looking for advice.

IMHO I think is comes down to how well your breasts image.  Do you know if/ how dense your breasts are?  Generally ladies who choose high risk surveillance alternate every 6 mos with mammos and MRIs. I would probably want to meet with a genetic counselor to have them put a number on my risk. Also one interesting thing I learned on these boards is that tamoxifen can actually decrease your breast density thus making imaging easier.  Sorry you have to deal with this at your age.

Smitty, I do the alternating MRIs & mammograms. Most women with LCIS do not go on to develop cancer & you absolutely do not need to have a mastectomy for it unless YOU want to.

A genetic counselor does much more than BRCA to provide your best true risk assesment.

You really need to talk to your doctor about HRT you are taking because they are absolutely going to want you off it. Estrogen feeds the probability you will go on to develop breast cancer.

it seems very weird to me that an oncologist would let you take estrogen when the main risk-lowering strategy for LCIS is either Tamoxifen or an Aromatase inhibitor, both of which work by different mechanisms to reduce the effect of estrogen on your breast tissue. I would either seek a second opinion or clarify this.

Perhaps the doctor meant you could continue to take it if you did the mastectomy option.

Wow - you have been through it with an ooph so young. I think Mellissa is right, you may, (and I do mean may) be able to do the HRT if you've had a mx. I am two years out from my double mx and as far as feeling less womanly I certainly don't. In fact I have to say I feel more womanly and empowered because of what I've been through.  A second opinion may be in order. My family is all from the corn belt (Il, Ia) and whenever they have a major medical concern they head to the Mayo Clinic. Please keep us posted.

Also I just realized that you probably aren't a candidate for Tamoxifen if you've had an oophorectomy. I think there is a least one AI (aromatase inhibitor) approved for prevention purposes. Please check with your doctor on that as well.

Smitty - first off, I seriously doubt that you should be taking estrogen. I can not imagine that would be okay with any oncologist. Tamoxifen is prescribed for er+ pr+ cancers. What this means is that these cancer cells have receptors (think of them like doorknobs with a keyhole) on them that 'like' estrogen and progesterone (meaning estrogen and progesterone are the right shaped 'keys' to fit into that keyhole on the receptor). When estrogen or progesterone unlock that door, it 'feeds' the cancer cells allowing them to multiply. Tamoxifen essentially makes it so that estrogen and progesterone can't  fit into as many receptors - but the last thing that you would do is ADD estrogen. There are things that will help with hot flashes (or help most people) that don't have estrogen in them (effexor is the most commonly prescribed for people on tamoxifen). 

Sooo - #1, get a second opinion, maybe I'm wrong - but if your MO is talking Tamoxifen and letting you stay on estrogen - in my world that warrants a second opinion. #2 = given the options you were presented, there's no reason that you can't start on Tamoxifen and see how the SEs are etc, do diligent watching, and think for awhile about the mastectomy. You do not have to make the decision about the MX right now and do not listen to your friends (they might be great people with the best of intentions but LCIS rarely goes on to become cancer - ask your friends if they'd go in and have a MX tomorrow 'just because' someday they might get breast cancer - because that happens to be true for everybody - your risks are now very slightly higher (very slightly) higher than your friends risks. 

(hugs) - this is tough but you'll be okay & this is actually a really 'good' result in the overall breast cancer world. Take your time on the decision - you do not have to rush anything which is really a good thing. 

smitty----- anyone at increased risk of bc (which you are now with LCIS) should avoid taking HRT; the last thing you want is any added estrogen. You're kinda inbetween a rock and a hard place.  I know exactly how you feel, because I was there 9 years ago.  I had to have a TAH/BSO (hysterectomy/oopherectomy), had to go thru immediate surgical menopause without being able to take any HRT for relief of symptoms, due to my high risk from LCIS (and my family history of ILC which further elevates my risk).  The first year was very rough.  I was 46; I'm sorry you are having to deal with this at only 35.  I did not take any Effexor as I did not want to deal with any more SEs, but sometimes I wish I had tried it. A lot of people say it helps with the hot flashes.  (Well, you can ignore the recommendation for the TVUS then). I agree with Ziggy---no rush with LCIS as it is non-invasive, you can take as much time as you need to research, ask questions, and make decisions.

lucy---both tamoxifen and evista  can be used after menopause for LCIS (and now aromasin as well). I was on tamox another 3.5 years after my surgery/immediate menopause.

ziggy---while it is true that many with LCIS never go on to get invasive cancer (only about 20% do), it does raise your risk quite significantly, not "only slightly".

Anne