Doc just called - LCIS

LCIS, unlike DCIS, is not cancer. And unlike DCIS, which can often be multifocal, high grade and so diffuse that removing it via multiple lumpectomies might be logistically impossible, a "small area of abnormality" diagnosed as LCIS is easy to remove without impacting your health & well-being. A "prophylactic mastectomy" for it--absent strong family history and/or genetic mutation--is like getting a double amputation because your dermatologist found & removed a small basal cell skin cancer on one leg. Putting yourself through such a major & irreversible surgery with very real risks and side effects (anesthesia risks, pain, drains, infections, seromas) is major overkill and might impact your QOL in the prime of your life more than you realize. Reconstruction is the "gift that keeps on giving," especially when it requires tissue expanders, multiple fills, and a second swap-out surgery for the implants. (And a flap recon is a very long & delicate surgery with its own set of risks, not the least of which is duration under general anesthesia, not to mention complications, scarring & pain at the donor--back or abdomen--site). Symmetry, even acceptable cosmesis (appearance), is not guaranteed.

Don't get me wrong--sometimes these drastic surgeries are necessary in the case of invasive ductal or lobular cancer (or even diffuse high-grade multifocal DCIS), and the risks & complications are worth it if your life is at stake. Many of us with small enough & conveniently located IDC opted for just lumpectomy, But your little LCIS tumor isn't worth taking the risk and--frankly--wasting your good health and quality of life at this point in time.

If you must do something, get the LCIS excised and thank your lucky stars it's not invasive cancer. It's extremely unlikely to recur. As the old blues song goes, "don't go looking for trouble: trouble will find you."

I had a prophylactic BMX due to a lot of factors, including family history, dense & fibrocystic breasts, and a non-BRCA gene mutation (NF1). For me, it wasn't worth waiting and seeing if I'd end up with breast cancer, it was more a matter of when it would likely happen and I wanted to lower my chances of it ever actually happening, so I had the dang things removed.

While all surgery has risks, I have never, ever, not even once regretted getting a BMX (without reconstruction in my case; I didn't care for the look of implants and didn't want to go through multiple surgeries as having breasts was just not that important to me) done at 36. It has only impacted my quality of life positively.

If you feel a prophylactic BMX is right for you given all of your risk factors along with the LCIS, it's right for you, regardless of whether other women here or elsewhere would have chosen it.

When they found classic LCIS on my core biopsy (2005), the first words my breast surgeon said to me was 'If you want prophylactic bilateral mastectomies, I'll fall down in a chair." This was before she even said Hello, or asked me about my family history. I don't know if I would have had BPMs if I was given the opportunity, but obviously if your surgeon won't do it, its not going to happen. When I had a 2nd opinion at an NCI-certified breast center (in the USA), they said they did NOT recommend BPMs for me at that point. (If you don't know what type of LCIS you have, try to get a copy of your pathology report.)

Almost everything concerning LCIS is controversial. Be prepared to get a variety of recommendations. Even if your breast surgeon recommends BPM, do check with your insurance to make sure it is covered. (I don't know how the medical system works in Australia.)

Assuming you have the (most common) classic type of LCIS, and no significant family history or single gene mutation, and have not had chest Xray TREATMENT (such as for lymphoma), probably less than half of women with LCIS (and nothing worse like DCIS or invasive breast cancer) will ever get anything worse. If you have an uncommon type of LCIS, then they are normally considered more serious. For a nice report of different types of LCIS, see from 2012 http://www.ucsfcme.com/2012/slides/MAP1201A/18YiCh...). The uncommon types of LCIS were just 'discovered' or 'established' in the last 20-30 years, and indeed are uncommon, so we have less information about them.

Unless you have strict concordance between your imaging and the core biopsy, they will probably recommend at least a breast excision. The excision is NOT to remove the LCIS (because LCIS is almost always multifocal and often bilateral, and they can't reliably tell where you have LCIS unless they look at a tissue sample under the microscope).

The excision (which removes the area around the core biopsy) is to help ensure there is not something worse (such as DCIS or invasive breast cancer) in the vicinity, which happens ROUGHLY 20% of the time. (Different studies differ.) When classic LCIS women go on in the future to have breast cancer, the breast cancer is often in an area that looks TOTALLY NORMAL on imaging.

For more info and experiences, see the LCIS forum, below. Once you have had an excision, there is NO RUSH to make a choice about your treatment, and you can change your treatment choice in the future (except of course for BPMs.) No matter how many women you see that chose one route vs another, that is no guarantee it will be right for YOU. Only you know how you would feel about BPMs or the anxiety of continued surveillance, or side effects of anti-hormonal prevention. There is no BEST option for all women.

As Mamabear said, good for you for doing your research; take as much time as you need. Weigh the risks and benefits of each option. Then make the best decision for YOU, which may or may not be like anyone else's decision.

I think you are being quite rational. I decided on a preventive mx after a genetic counselor gave me a 50% lifetime risk. The meeting with the genetic counselor was an excellent process to go through and I highly recommend it. As others have said, you have plenty of time to make your decision.

Kerri, you've had some great advice here, especially from leaf. While LCIS is not cancer, it is a diagnosis that is significant to your health. The good news is that you have time to learn more about LCIS and thoroughly consider your options. As with most things in life, our initial reactions are typically quite emotional, and sometimes having a little time to let those emotions settle gives us the chance to make the decision that is truly best for you.

I was diagnosed with LCIS in February and wanted to BMX right away. My responsible BS advised me to wait and gather all information before taking that step. In the meantime, I had the excisional biopsy to make sure the LCIS wasn't adjacent to any invasive cancer. I saw an oncologist and had my mother do genetic testing (her mother passed from breast cancer in her 40s). I let the emotions settle, I read more medical resources, I searched the boards here to learn more about others' experiences, and I enjoyed the summer with my kids. After several months, I had the clarity that the BMX was the right way to go for me, and I am thankful I took the time to come to that decision rather than going for it right away and possibly regretting it. I don't have any regrets.

You aren't crazy with your emotions, and our gut feel is always strong. This decision is yours for your body, but give it time as it's not reversible. However, likening a prophylactic BMX because of LCIS to amputating your legs is extreme and doesn't fully appreciate your diagnosis and its effect on your life.

Kerri, out of interest, I too have osteopenia and have taken HRT since my last child. However once the LCIS was diagnosed I was strongly encouraged (told!) to come off the HRT immeidately to be in a low oestrogen environment.

Hi Kerri

It's very difficult weighting up the risks and benefits. I saw a few doctors and from different disciplines - oncology (obviously), gynaecology and rhumatology (can't spell that this late at night!) to help me decide what to do re hormones. In my case coming off oestrogen was not a difficult recommendation for doctors to make. In the UK the trend is very much now towards there being a 'lifetime limit' of oestrogen and because I had a LOT of IVF treatment I would have had a lot of oestrogen exposure (I'm talking 15 plus cycles and frozen embryo transfers in the main where you take months of oestrogen). So I think it was not difficult for them to recommend I came off all hormones. I didn't find it easy to come off but I didn't find it hard either.

I have found that sleep is disturbed so I have to be very practical and be in bed for about ten hours so that after all the tossing and turning I might get 6ish hours of sleep. I've also had to adjust my work as I seem to get very anxious now (didn't before!) so I don't have difficult work days back to back - I'm self employed so I have to spread things out more with gaps in between. I fill the gaps with more exercise than before (boring but necessary it seems). I've also become completely unable to tolerate alcohol. One sip and I get the headache from hell. So it's difficult all in all to have thrown those hormones away but due to my IVF exposure I am convinced by the doctors telling me to have no further oestrogen so I just have to deal with the side effects.

Bone loss is a possibility but I'm hoping the weight bearing exercise might offset that.

What are your thoughts on things at the moment?

Kerri - keep strong. I remember reading somewhere here that you have to not worry until it's necessary to worry as energy is needed then and not this side of test results. Easier said than done however.

Yes IVF worked. I have a wonderful and large family - some born naturally and some via IVF. Last baby via IVF was 2014 and then we created some beautiful embryos to have one final child but sadly we can't take the oestrogen risk (didn't know that when the embryos were created).