Any LCIS people here?

To answer your question, yes. As to what to do, I have not yet decided, having been diagnosed in Jan of this year.

I'd like to extend the title of this thread "Any LCIS people here" to "Any LCIS people who were diagnosed 25 years ago and never developed cancer here?"

Laleesa, I think your fear is very normal and justified. Best wishes with the MRI.

Thanks for the MIL info, Laleesa. May she live many more years cancer-free!

Best wishes to you Kerri Oz and thank you for providing us with your background and thought process.

2 years ago (2016) I was diagnosed with LCIS, ALH, fibroadenoma, calcifications or as my Surgeon said "very busy breasts'. Had a Mamo, Usounds, Mri that led to biopsy and lumpectomy and advised to have yearly checkups of Mamo & MRIs.

Last year (2017) I found a lump that bought my yearly checkup a few months earlier, this ended in mamo, Usound, biopsy. I asked the surgeon about DMX and he advised to wait for findings. It was another Fibroadenoma and only my GP rang me weeks after to say it was nothing.

I decided that I was only going to do the MRI every second year as my surgeon pointed out that they will pick up areas and that most likely will be investigated and I needed to be prepared for that.

In Australia some Doctors are not keen to do DMX for LCIS. I have talked to the surgeon who explained the process of a DMX to me and from this I have decided that I will wait and see what happens at each yearly checkups, in the way of, USounds, Mamos, MRI, Biopsy and after 5 years of this, I recon there will be a pattern forming and then I can make a better informed decision (and hopefully they will agree) ... Its not the testing or procedures that bothers me, its the waiting for the calls, the anxiety and the constant mental mind battle that this whole process brings. As LCIS puts us in a 'no mans land diagnoses' it is often not understood, not a priority and we come down the list for urgency...

anyways...

Just had my yearly MRI on Monday, so this years mental mind game begins again, the waiting by the phone for a couple of weeks, then the 'should I ring' or 'will they think I'm over reacting'

Lea-----I was diagnosed with LCIS 15 years ago, had lumpectomy, took tamoxifen for 5 years, evista for about 7 years, had breast MRIs for many years, now just yearly 3-D mammos, breast exams twice a year, and I'm doing fine. Hardly even think about it anymore. There are definitely pros and cons of both surviellance/ anti-hormonals versus BPMs, you just have to decide for yourself how much risk you can live with. Both my oncologist and the genetic counselor told me most of the risk calculators overestimate the risk of LCIS. and that it is likely in the range of 20-30% increase, so I'm going with 25%.

Anne

LCIS seems to be a bigger headache then other varying diagnoses. There are so many more questions to ask with such an illusive diagnosis. Personally, I went to my internist with a palpable lump, was then was sent for a diagnostic mammogram, and then a biopsy,then a diagnosis with LCIS; I was supposed to consult with a surgeon and then a day before my appointment , I was told that I need to go get an MRI of both breasts before the appointment.  I guess since LCIS is usually diagnosed "by accident," versus presenting symptoms by itself (especially not with a palpable area). I had surgery almost 15 years ago on the right side and now it's the left side, both times in the exact same place and both times it presented with a palpable area. It's more than frustrating and scary. How am I supposed to proceed when there are more and more unknowns everyday? It has become an abyss of unknowns and I don't do well with those; I'm assuming none of us do. It's not an issue of insurance. So, what's with the curve ball?  Has anyone been through anything like this? Or knows of it? I'm drowning with "what if's." Any suggestions or comments, PLEASE??!!??

The LCIS train is an interesting ride, but a very LONG ride. There is no immediacy and there are way more questions than answers. I was diagnosed 2 years ago, but I know that there are some ladies 20+ years in onnthis board.

When I was first diagnosed I was scared and frustrated that there were not many answers. I didn’t understand why I kept having biopsy after biopsy instead of just having a mastectomy.

I have found there are seasons to this diagnosis, usually brought on by imaging. But there are seasons of calm and normal life too. I just completed another round of imaging and of course, I had a bi rads 3 rating on my ultrasound (suspicious, most likely benign). Interesting enough, it was for an area that had already been biopsied 2 years ago. Initially I was thinking about even more increased surveillance (3 months vs 6), but after a few days I guess I just accepted that the biopsy was inevitable, so I might as get it over with. I was fortunate again... benign. I figure I just gifted myself 3 months without worry.

At this point, I relate a biopsy to going to the dentist and getting a crown or cavity filled. Shot(s) of numbing meds, uncomfortable tugging, and being sore for a few days after. I think that LCIS for me has become more of a wanting to stay on top of things.

Have you seen a breast surgeon/breast cancer specialist? I just switched 3 months ago and I LOVE MY DOCTOR! She answers my questions, we have a conversation about where I’m at and what research says, and she gave me options based on what I feel more comfortable with. I think she has helped me significantly. I don’t feel rushed and my first visit she spent an hour talking with me.

While you may not have many people in the real world who know what it’s like, I have always found comfort, compassion, and knowledge here. You are never alone!

Heather

"Any suggestions or comments, PLEASE??!!??" Anne929, Most of us who have taken our diagnosis seriously have indeed been in the abyss you mention. You had 15 years between your biopsies, is that right? Both have shown only LCIS, nothing more advanced? Well, that right there is a positive from my perspective. One way to proceed is to realize that odds are on your side. It is more likely you will not get cancer than you will get cancer. Another way forward is to try one of the 5 drugs, which do decrease your risk of breast cancer if you can tolerate them. If you are not menopausal that # of drugs reduces down to one, just Tamoxifen. BUT, brand new research shows a much lower dosage of Tamoxifen--5 mg/day instead of 20mg/day--is very effective without some of the risks of the higher dose. I have seen the term "practice changing" used to describe the results of these new lower dose Tamoxifen studies.

Some actions you can take that are likely minimal in the overall scheme of risk reduction, but I believe are a step in the right direction (and I do them) are drinking Brassica Tea, advocated by Johns Hopkins. https://www.baltcoffee.com/catalog/brassica-tea; taking a baby aspirin about 3 times per week, which is a natural aromatase inhibitor (but my oncologist suggested no more frequently than 3x/week or there is a slight risk of bleeding in the brain for women but not men); exercise; adding about a tablespoon of flax and chia seeds to your yogurt/cereal/smoothie each day; eating a generally healthy diet most of the time to maintain an appropriate weight.

That is great you state insurance is not the problem, Anne929. One less worry. You may want to seek out a renowned cancer research center near you, even if just for a single visit to get up to date information and council. Maybe something like Mayo. Or at least make sure you are doctoring with a breast clinic, which may be the place to answer some of those unknowns or put them in perspective. (Also steps I personally took)

The added unknown factor to your life may just boost your zeal for making sure you have a helluva good time when the opportunity presents.

One reassuring bit of info I'll add, that you may have seen if you have read lots of the posts under this topic is that I ask all "breast professionals" I encounter how many women they have encountered with LCIS who have gone on to get metastasized cancer or who have died. There have been about a dozen now. They have all responded with none. Though, of course, statistically we know it can happen.

Good luck and feel free to post again with questions or with info you have learned. If 929 is a significant date for you, then we have something else in common!

Northerngirl485 Most of us will agree with the emotional roller coaster feelings you are experiencing. As leaf states, it does get better in time.

"My surgeon recommends the usual 6 month mammogram and ultrasound then 6 month MRI. I am not too sure if this plan sounds good to me. So for now I have convinced myself to wait for my first 6 month mammogram and ultrasound then MRI." One Nurse Practicioner made the recommedation of "wait one year, do the screenings and see how you feel about it emotionally.' You'll be in a better place after that year to make a decision one way or the other, or to decide to wait just one more year. At least LCIS allows that kind of time.

You mention seeing your GP and hoping for more info. Your GP may have specialized knowledge in LCIS, but you may not want to rely on him/her for your primary source of info. My GP of 25 years (who both my husband and I absolutely love) told me he had never had a patient with LCIS and was not that familiar with it or the various drugs often prescribed for it, etc. He did tell me that it would be a good idea to follow the advice of the oncologist I was seeing.

If you have a breast clinic you can visit, that seems to be where the best and most up-to-date info is found. Or an oncologist. You may even want a second opinion, in part to be sure the LCIS diagnosis is right, but also just to get another viewpoint. Of course, that involves the downside of more cost. The second opinions I have gotten were exactly the same as the first, which I guess is good.

You have the advantage of understanding the healthcare field, so your insights probably surpass many of us on the forum.

Northerngirl485, if the northern in your name refers to the northern part of North America, then I'll add, keep warm. It has been quite a winter up here!

Heather Jean has made a good argument for finding a breast specialist you are comfortable with. I can second that suggestion. I see MelissaDallas snuck a calming response in between posts. It takes a forum like this to let us know there are other out there surviving just fine.