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Topic: Any LCIS people here?

Forum: LCIS (Lobular Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for LCIS.

Posted on: Mar 28, 2018 05:58PM

Laleesa wrote:

I have my first MRI since my lumpectomy on Monday. I am so nervous. My lumpectomy was supposed to be a benign fibroadenoma and ended up being a fibroadenoma with LCIS. I had four needle biopsies in the fibroadenoma that did not reveal the LCIS, so I am afraid of the MRI and what that may reveal. Is this normal? Also I want to do the prophalactic masectomy with reconstruction and my surgery is dependent upon the results of the MRI. I am so nervous. Anyone else with LCIS that had similar experiences?

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Mar 29, 2018 03:57PM Mammabear wrote:

I chose the mastectomy with immediate reconstruction for LCIS but it is an individual choice and there are lots of factors to consider. It was the right decision for me, but there are other options. Usually with LCIS you have plenty of time to make a decision so do lots of research, get all of the information you can.

Dx 2/10/2017, LCIS, Left Surgery 4/9/2017 Prophylactic mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Dx 4/10/2017, LCIS, Right
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Mar 29, 2018 09:48PM Lea7777 wrote:

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.

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Mar 30, 2018 12:14PM Laleesa wrote:

thank you all for your replies! I want to share with all of you that my mother in law was diagnosed with LCIS 25 years ago! She tried the medication and got very sick she decided to take her chances and didn’t nothing! She is now 83 and never had breast cancer!

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Mar 30, 2018 01:50PM Lea7777 wrote:

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

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Apr 4, 2018 12:35PM NicolaSue wrote:

That's great to hear Lalessa. I'm living with LCIS and doing nothing (other than surveillance).

LCIS diagnosed Spring 2017. Vacuum excision biopsy. First follow up mammo 2018 - clear
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Apr 4, 2018 06:30PM Laleesa wrote:

I was diagnosed in February just got mri results and there was only a 5x5x6 mm that appeared to be benign oncologist said it didn’t have to he biopsied but kind of hoping it would be. I am having trouble deciding what to do. It is still so new to me and the rating to adjust. Leaning towards masectomy with reconstruction but also worried about infection and other surgical risks.

Thank you all for your replies!

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Apr 5, 2018 07:00PM AbundantlyblessedbyGod wrote:

HI Laleesa -- I'm a bit confused. Does the oncologist think there is no cancer?


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Apr 7, 2018 09:38PM - edited Apr 7, 2018 09:38PM by Laleesa

AbundantlyblessedbyGod The MRI report felt it looked benign, but I still have the LCIS and that issue remains.

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Apr 20, 2018 11:50PM Kerri_Oz wrote:

I have LCIS/ALH in one part of my right breast and a complex fibroadenoma in another part. I had an MRI to see if there was anything suss about my lymph nodes, which there wasn't, thank goodness. It did show high background enhancement, though, which is another indicator of increased risk of cancer. I've chosen to have a BMX. For me, the worry of extra screening and all that entails is just too much. I did not deal well at all with the one mamo guided core needle biospy and 2 ultrasound guided ones. Also, I would prefer have the surgery now, while I'm still fit and healthy, rather than waiting til I have cancer and need chemo, radiation and nodes removed. Of course, I may never get cancer even if I keep my breasts, but the risk is higher than I am comfortable with. It's very much a personal decision, and you need to do what you're most comfortable with.

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Apr 21, 2018 10:51PM Lea7777 wrote:

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

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Apr 22, 2018 12:30AM Mammabear wrote:

I went through the same thought process in deciding to have the bmx just over a year ago. On the plus side, I have just realised that I would have been on 6 monthly checkups if I hadn’t had the mastectomy, so I have avoided a mammo, mri and probably two ultrasounds that I would have had if I hadn’t had the surgery. I am happy with my decision. However, I know from the statistics that only a small percentage of people with LCIS decide to have the surgery.


Dx 2/10/2017, LCIS, Left Surgery 4/9/2017 Prophylactic mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Dx 4/10/2017, LCIS, Right
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May 8, 2018 10:31PM Corah wrote:

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'

Dx 10/12/2016, LCIS, Right, <1cm, ER-/PR-, HER2- Surgery 11/6/2017 Lumpectomy: Right
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May 15, 2018 05:19AM bdc wrote:

In 2016, after a BL Lumpectomy they found LCIS in both breast. Given this information, I opted for BL mastectomy. My sentinal nodes were clear, but there seven areas of LCIS in my breast. I did this becasue I could not imagine going through the worry every six months, not to mention the expense a MRI every year. I had an immediate reconstruction, but I now have an encapsulation of one breast. My post op education was absymal at best. My thoughts for you, go with your heart and do what your heart and your doctor adivse. I am happy with my choice.

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Jul 13, 2018 08:36PM awb wrote:

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

"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/16/2003 Lumpectomy: Right Hormonal Therapy 10/30/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/5/2005 Prophylactic ovary removal Hormonal Therapy 2/28/2009 Evista (raloxifene)
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Jul 14, 2018 11:49AM Lea7777 wrote:

Perhaps even less than 25% for you, AWB, with the years of chemoprevention!

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Feb 12, 2019 07:01PM Anne929 wrote:

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??!!??

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Feb 13, 2019 12:42AM Northerngirl485 wrote:

This is my first post on this form. I recently was diagnosed with LCIS after a biopsy to my right breast. I had a sore right breast for a month or so but kept putting it off as pms symptoms. But after awhile I recognized that it was only one breast and the pain was ongoing. I cupped my breast and fluid shot out. It took me by surprise! I then squeezed my breast to easily express clear yellowish fluid with blood. I then palpated some small lumps.

It took a few weeks to get a doctors appointment then a referral for a mammogram and ultrasound. The radiologist spoke to me after saying that there was an area of concern that there was “flow" detected and he recommended a lumpectomy of the area. I was then referred to a surgeon who thought it was not a concern and left it up to me to have a repeat mammogram and ultrasound in 6 months or I could have a lumpectomy. After a few days I decided on the surgery.

I had a wire guided lumpectomy but I knew there was something different when the doctor was guiding the wire. She had a difficult time and would not answer my questions in regards to if she was noticing any changes in the area of concern. I have worked in the health care field for many years so I know the atmosphere well.

I also sit and have thoughts that I am a ticking time bomb, to having thoughts that I will probably die of old age at the age of 100. It's such an emotional roller coaster and I just don't know what I want to do. 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. I need to wait till fall for the MRI since I had the surgery as this will cause false highlights having the MRI too soon after surgery.

There are too many what if's which makes me very nervous. I have a doctors appointment at the beginning of March with my GP. I am hoping to get more information to guide me to feel better about results.

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Feb 21, 2019 07:21PM HeatherJeanne wrote:

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

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Feb 22, 2019 03:07PM leaf wrote:

It took me many, many years for the scariness to subside, but now I'm older and have other medical issues. (I always have to be anxious about something, it seems.) But over the last 13 years, I have never had DCIS or invasive bc. There's a lot of uncertainties in life. You don't know if you'll die of a heart attack tomorrow, or if you get run over by a car. But not many people pine over the possibility that we will die in a car crash tomorrow. People (definitely including me) can have strange ways of deducing their risk of something.

There is a tendency for individuals to be less rational when risks and exposures concern themselves as opposed to others.[3] There is also a tendency to underestimate risks that are voluntary or where the individual sees themselves as being in control, such as smoking.[3] https://en.wikipedia.org/wiki/Risk_assessment

Anne is totally correct 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.

My unsolicited advice is that, unless you have PBMs right away, its a good idea to stick closely with your imaging/screening recommendations at least for the first few years. That way, if, by chance, due to limitations in our imaging technology, you really have simultaneous LCIS and DCIS or invasive bc, it can be picked up sooner rather than later.

But, like Anne, nowadays, I usually forget I have LCIS. That definitely was NOT the case the first 5 years or so that I had LCIS.

Leaf

Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 25, 2019 08:26PM Lea7777 wrote:

"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!


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Feb 25, 2019 08:41PM MelissaDallas wrote:

I was really stressed at the beginning, but I had just had a different kind of cancer. After a couple of years I decided it just wasn’t worth losing sleep over. Determination of risk percentages isn’t much more accurate than flipping a coin and my geneticist pegged my real risk at closer to 20% than the super-high calculators come up with. In reality, most women with LCIS do not go on to get cancer. If I do I’ll deal with it then.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Feb 25, 2019 08:42PM - edited Feb 25, 2019 08:46PM by Lea7777

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.



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