LCIS - A reason to PBM?

ESinNJ

Hi everyone. I have just made the life altering decision to undergo prophylactic double mastectomy and reconstruction after living with LCIS for 2 1/2 years. It's aggressive, I know. I also know that if I wait to get that next "irregular" mammogram, and have to undergo radiation or worse, I wouldn't be able to live with myself for not being proactive. I'm a "black or white" kind of a personality. I don't do well with gray areas, as in maybe you will, maybe you won't develop breast cancer. I'm in my mid 50's, and don't want to have to undergo more intense treatment later in life. I thought I could handle the drug therapy and constant surveillance, but honestly with the side effects and the nerve racking diagnostic tests, I'm ready to put this all behind me. Can anyone else relate?

MelissaDallas

It seems that a big percentage of the handful of women here with LCIS who continue to hang out on the discussion boards have done PBMX. In the bigger world I don't think most do. I don't intend to unless I start having to have very frequent biopsies. In reality, barring other risk factors, most of us will never go on to develop cancer

ESinNJ

I met with my breast surgeon today to discuss and schedule my mastectomy. A phrase of words I never in my life dreamed I'd be saying. I also never in my life dreamed I hear, "You have LCIS." And I fear that since I'm in a rare group of women diagnosed with this, that I can go on to be in another rare group of those who go on to develop cancer. It's been a 3 year whirlwind of drugs, diagnostic testing and office visits. I even added a rheumatologist to my repertoire, since I have horrific arthritis thanks to the anastrozole I'm taking. It's enough. If ten years from now I have another abnormal mammogram, I'd never be able to forgive myself for not being proactive when I was young enough and had the insurance to cover it all. No one can predict the future. I made a decision based on what I feel is the right one right now. Will I regret it? It's yet to be determined. But at least I'll have peace of mind.

Corah

Hi there

What has caught my eye is that you have been on this journey for 3 years, I take my hat off to you because mine has been 3 months & I have had enough of the waiting, the uncertainty, the poking / prodding & slicing already.

Have you had your procedure yet & how did It go? Or maybe -I wish you a speedy recovery & hope you are recovering well & please let me know how you are going.

LCIS I think is such a grey area & doesn't lead a clear pathway like a 'true cancer' does & for that reason I say it mentally & physically messes with your head.

I am a week out of a lumpectomy & didn't have any pain or not one bruise (a slight yellow tinge & that's all) had more bruising on the back of my hand from the anaesthetic. This whole ordeal can take over your life pretty quickly & again it's a mental monopoly trying to keep up. We seem to be a constant state of waiting, then when u get there the waiting game starts again... Grrrrr

Your decision is only yours to make & only you can know what is right for you.

When I had my fist mammogram call back I had the usual high anxiety that it brings, for me it wasn't about losing my boobs. My anxiety was if I lost my hair. I love my hair, it's long, it's (bottle) blonde & I spend the $ on it to make it that way. I am a manager in a supermarket & in this high anxiety time a lady that was 'very obviously' had cancer (no hair & could tell she was having a heavy dose of chemo) this 'inspirational' woman would shop with her little kids or alone & she would walk tall, proud, she just oozed strength & tenacity. I would watch & admire her & hoped if I ended up where she was & if I could be just as half as strong as she portrays, wear her head uncovered & proud just like, then maybe I might just survive this as well.

I was so compelled by this woman that I went & stopped her & told her she is a true ambassador for women with cancer. I told her I was going through the early detection stage & I have been beating myself up over the possibility of losing my hair & I just want to tell her that she is truly inspiring, strong, brave & a true inspiration to all women living with cancer... She gave me a hug & said: I had a not good prognosis & I said from the start " I will not be defined by cancer - I will define my cancer." Every week for the last couple of weeks she would seek me out to just see how I was going & I would do the same for her. I just called her the 'inspirational women' but today I asked her her name & she said Rebecca, but my friends call me Beccy so please call me Beccy.

So the moral of my story is to quote what my new friend Beccy said - Only you can define your journey - don't let your journey define you. And this is what you have done !!!

Hope your are doing ok

Kathy

Kcon

Yes, can totally relate. Going for my first MRI tomorrow and realized that it sounds like the use an iv contrast? I really HATE having an iv and I guess this means I will have to do this once a year now. Mammogram and then 6 months later MRI, repeat. Ugh. I was totally prepared to do a double mastectomy but then luckily ended up being BRCA negative. My mom died at age 49 of breast cancer. I'm still torn about what to do. The breast surgeon's nurse that I met with and the genetic counselor both were saying not necessary to do mastectomy.  I have wanted a breast reduction for year's anyways. I feel like they are just time bombs now .

Moderators

Kcon-

We totally understand! We hope you find some support and encouragement here, and that you're able to come to a decision that you're comfortable with. It's a very personal decision, one that many women in your shoes don't come to lightly! We wish you the best in whichever course you take!

The Mods

SassyMutt

Yes, I can certainly relate. I'm sorry you are going through this! I was diagnosed with LCIS 2 years ago after my first mammogram! The first year was rough -- lots of anxiety, dreading the next test, etc. I am seen at Johns Hopkins every 3 months in a rotating cycle of mammogram, oncologist check in (I'm on tamoxifen), MRI, oncology nurse check in..... Repeat.

It's gotten a bit easier in year 2 as I decided I just needed to live my life and know I'm at least doing what I can to reduce my risk (except for the red wine I still indulge in!) and catch any potential issues early.

My docs all said PBMX was too extreme for me, even though my lifetime risk of invasive breast cancer is 67%. I thought a lot about doing PBMX anyway, but reading about it, there are a lot of risks with that as well and there are no guarantees there won't be ongoing issues with that as well. So, for now, I decided to stick with the docs recommendation and do the "watchful waiting" game. But, I know that if anything else every pops up, I'll be moving to PBMX pretty quickly!

Big hugs to all who are on this rollercoaster ride! LCIS is a confusing gray area, for sure.

marketingmama

I went the PBMX route after an LCIS diagnosis. My BS was supportive of the decision but I knew I had an absolute choice with close monitoring and tamox. I'd gone through endometrial cancer and partial hysterectomy a year earlier so I just couldn't handle the ongoing testing and worry. Plus DH had prostate cancer a few years before that. Father died of cancer at 54. I think all these things impacted my decision.

I am about a year and a half out from the first surgery and I have had complications with reconstruction that I definitely didn't expect. Nevertheless, I don't regret the decision as I knew ongoing monitoring would create a lot of anxiety for me and didn't want to take tamoxifen. It's such a deeply personal decision. My best advice is to follow your gut.

All the best.

Jilley

yes!

Sounds like me 2 1/2 years ago.

I chose to wait till after my mom finished her Chemo treatment- she only survived 9 months .

I felt the same way- couldn't handle the 6months of waitingbon results- then well this cancer type is hard to find in early stages- yikes!

Good luc

kelly0406

Can completely relate. I was diagnosed 6 months ago with LCIS in both breasts, after a month of biopsies, ultrasounds, an MRI and eventually two lumpectomies. The consultant initially seemed to suggest I should have a double mastectomy, however after the lumpectomies, he said I could wait a year and see how I felt. I was so traumatised by the whole thing, I grabbed that option. Recently, however, I have had further symptoms and today I called to bring forward my appointment to this week (6 months after last appointment). I think I will go for the mastectomy option if it is still on the table - I was fine for a few months, however my anxiety has grown recently until it is all-consuming. I would feel so guilty if I didn't take the opportunity to decrease my risk to practically zero, particularly as I stupidly went on to one of those breast cancer risk calculator sites which gave me a risk of 85%.

Moderators

Dear kelly0406,

Welcome to the BCO community. We are glad that you are here and we hope that you will find support and useful information as you continue. We look forward to seeing you around the boards. Pm us if you need any help with navigation around the forums. The MOds

Stonebrook108

Hi everyone,

It has been 9 yrs this past week that I had a PBM for LCIS and I have NEVER once looked back or regretted my decision. It was the best choice for me but it's not for everyone. I found out I had LCIS in Nov of 2008 and went to a BS and PS to find out my options. They weren't great choices. Tamoxifen for 5 yrs with a mamo, sono, and MRI w/ contrast every six mons for the rest of my life. Or a PBM with direct implants and that's what I chose.

My GYN said that every time they'd see "something" on the screen I'd have to have a biopsy. So your being picked a part slowly. Not to mention the mental anguish you go thru praying it's not cancer. I couldn't have gone thru that for the rest of my life. Having a PBM was easier for me. I was told that the MRI only showed I had LCIS in the right breast but, after the PBM the path report showed I had it in the left breast too!

It's not painful you just have a feeling of tightness. The drains were the worst part. And now I go once a year to the BS and PS for a checkup. No more tests! I don't even think about anymore where when this first started the thoughts about what to do consumed me. I woke up from surgery knowing it was gone and felt peaceful.

This website is a god send! If you want to see what others have chose to do look for my thread LSIC and Prophylactic Mastectomy.

Very big decision but, do able. PM if you like

Best of luck

Ann

leaf

Hi Kelly! Welcome to the boards!

I just wanted to comment on your comment that on one breast cancer risk calculator your lifetime risk of breast cancer was 85%. I bet it was the Hall's Breast cancer calculator. http://halls.md/breast/risk.htm

I was told I had a risk of about 30-40% from my oncologist, and have had other MDs estimate my risk was anywhere from '10-60% but probably closer to 10% than 60%', and, from the Hall's calculator, about 85%. (Note the breast cancer incidence for the 'average' woman in the USA is about 12%, which is more than 10%, but I won't go there.) So the range was 10% to 85%. Many people will do something different for a 10% chance of something happening vs an 85%. None of these doctors told me about how WELL they know that.

Going on hints from my GP, I found out that though these calculators can give you percentages with up to 3 significant figures, and learned docs can give you estimates like that, these numbers are for populations of people. What that means is that they can calculate that, say, 190 women out of 200,000 will get breast cancer in a year in a certain population of women. (Breast cancer risk varies by about 4 fold in different geographical locations.)

But, to make decisions for yourself, you want to know 'What is MY risk for breast cancer?' This is an ENTIRELY different matter, and is measured in an entirely different way. They, at least sometimes, measure this by looking at a population of woman, and pick one randomly selected member in the group that got breast cancer and another randomly selected member of the group that did NOT get breast cancer, and look at their scores.

This editorial talks about a paper where they did this for women in Florence, Italy. http://jnci.oxfordjournals.org/content/98/23/1673.... If you read it, you will see that, while they know quite well how many women in the Florentine population will get breast cancer, they have very little clue which women they will be, even when they add other risk factors. (LCIS is so uncommon, they didn't look at that as a risk factor.) The Gail model is better than predicting by the toss of a coin (i.e. chance), but NOT BY MUCH. So, while the Hall's calculator can spit out a number, they don't know that number well AT ALL.

If they have this much trouble predicting who will get breast cancer in a general population, just imagine how much they know about your risk with LCIS. (Looking at SEER data, diagnosed LCIS is about 7 times less common than diagnosed DCIS.)

They can give you a number that predicts your chance of breast cancer, but they really don't know that number well AT ALL.

This makes it more difficult to decide what to do, of course.

I'm NOT trying to influence what your treatment decision should be. Everyone is different. But if you are going to seriously decide that your chance of breast cancer is definitely 85% or definitely 10%, then I think you should think twice.

NurseNancy11

Hello All,

I am new to this community and have some things to share. Let me say first, I am not a cancer survivor but my Mother is, however I am in a bad situation and need like support. My mother is 57 y.o. And has had LCIS twice. The first to time was in 2002, she had a lumpectomy & was treated with Tamoxifen, I believe for 5 years, despite my request she was never sent to an oncologist . The cancer returned in 2011, almost exactly 10 years and again was diagnosed as LCIS. The same treatment plan was put into place, however, this time I demanded that she be referred to an oncologist. He saw her once and she continued on her Tamoxifen, faithfully getting her yearly mammos. She finally completed therapy in April of 2015, we were ecstatic. Now mind you my parents are very private people and do not typically share their plans until the last minute. In January of 2016 my Mom tells me she has decided to have "the girls" removed/reduced as she had been having a great deal of back and shoulder pain. On 1/27/16 Mom underwent a breast reduction, they removed all of the breast tissue & reconstructed with fatty tissue. The Surgeon was completely aware of her breast cancer history. This procedure was done without a pre-surg MRI/CT Scan and she had not had any radiologic studies done in some time. She had a follow up mammo in September & at that time they told her they did not like the scar tissue and that she needed another around the year mark from the surgery date. In November she had upper respiratory infection symptoms and was coughing up blood, chest X-ray was negative she was treated as having bronchitis . Follow up mammo no new evidence. Two weeks ago she found a cervical lymph node enlarged on her neck. The doctor began with CT scans, which to me backwards, no lab work yet another clear x ray, pretty hard to wrap my brain around as a nurse, yet knowing it couldn't be a good sign. She has a mediastinal mass with enlarged nodes, "almost everywhere and too numerous to count" according to the Rad read. As off 4/18/17 we have had a bronchoscope & mediastinoscopy with biopsies and now know the mass is in lung partially obstructing the right bronchus. We are waiting for further results and have made a referral to an Oncologist finally

I encourage all of you to use your intuition on this one! If it's guided and arranged by an oncologist then just make sure you are completely cancer free. Please

MelissaDallas

LCIS is just a marker for being at higher risk to develop breast cancer-it is not cancer, and the preferred newer term for it is lobular neoplasia so as to avoid that misunderstanding. Most women with it will never go on to develop cancer.

If the biopsies of her masses end up indeed being breast cancer, then somewhere she had invasive lobular or ductal cancer, or some combination of those, or she had an occult breast cancer that was never located

Nay811

Any one else have bilateral LCIS, ADH, and FEA?

I recently had bilateral excisional biopsies. LCIS, ADH and FEA found in both. One area of LCIS had related LCIS calcs. Which isn't as common for LCIS to have calcs. Spoke with two doctors and the pathologist. I can go with bilateral masactomies or Tamoxifen. My surgeon and regular doc think b.m. would be the way to go. The cocktail in my non-pregnancy and dense tissue breasts verified bilaterally.. very concerning.... I know that LCIS can be bilateral...but having it verfified in both, eek. The fact the FEA is attenuated with the breakdown of myopethlial cells is also concerning. As that is a possible way that ILC can occur from LCIS. I am so not the wait and see.... any more biopsies and there will be nothing left of my right breast. There's a third missing...lol. I have weighed... I have researched.. I have rumenated... gotten conflicting advice... but I don't want to have continued biopsies... don't want to wonder...don't want side effects...don't want cancer.... after soul searching I have decided to follow my surgeons advice. Am I over reacting....arghh

NicolaSue

I was diagnosed with LCIS in Feb 2017. What's been interesting for me is how one's feelings change with time. Initially I was all for a double mastectomy. In the UK however that is not recommended for LCIS. THen I got my act together and got a bit more info and saw a few doctors. I've now had the LCIS removed, had a clip put in, had another mammo, had an MRI and made a choice of which hospital I want to be treated in long -term. As I feel I've been able to excise some control over what surveillance I feel slightly 'happier' about not have surgery.

I think that here in the UK we do not do as much surveillance as you get routinely. So our public health system will give me an annual mammo. I am going to then have an MRI privately each year and a bone scan also.

The worst part for me was the timing of all of this. Hubby and I created 7 beautiful embryos in December 2016 and embryo transfer was planned for March 2017. Then the LCIS was diagnosed in Feb! Although LCIS isn't cancer etc etc since it's rare doctors are very loath to give the green light for an embryo transfer after (unlike natural pregnancy you needs loads more oestrogen with a frozen embryo transfer).

Sue

FLXteach

Thank you for sharing your experience. 2 and a half years ago, I began my journey with an irregular mammogram, then an MRI, needle biopsy and finally a surgical biopsy and removal of LCIS. I was diagnosed with LCIS, and hadn't had any recurrence until my April MRI. The radiologist recommended I see a surgeon and consider double mastectomy and rebuilding. I have my first consultation in mid-May, and I'm starting to worry a little bit. I've read a lot of the information on here about communicating with my surgeon and second opinions. It's a lot to take in.

I don't like not knowing what's going to happen next. I just want to have my appointment so I can make some decisions based on what I learn. It's a long process, that's for sure.

Additionally, my mother had breast cancer surgery and radiation twice.

Moderators

FLXteach-

We want to welcome you to BCO! We know it's a lot to take in, but we hope you're finding support and helpful advice on these boards. Our best advice for you going into your first surgical appointment is to write down any and all questions and concerns you might have, so you don't forget anything once you're in front of the surgeon. And many of our members will tell you, second or even third opinions are always a good idea.

We hope your appointment goes well, please keep us posted!

The Mods

leaf

Hi there! I'm sorry you're going through this. I'm not completely sure what situation you find yourself in. It sounds like you were diagnosed with LCIS 2.5 years ago, 'then you had a recurrence'. I'm not sure what 'had a recurrence' means. Did they find more LCIS, or were you diagnosed with something 'worse' like DCIS or invasive breast cancer?

If you were diagnosed 'only' with more LCIS - in other words, if you weren't diagnosed with DCIS or invasive breast cancer, was it at the same spot as your previous LCIS? Was it of the same LCIS type?

The reason why I ask is that LCIS is a rather unusual condition. There is a LOT of controversy about it, but they do know that LCIS is USUALLY multifocal (meaning there are often multiple spots of LCIS in a breast at one time), and its OFTEN bilateral (in both breasts). They know this because prior to about 1990, they routinely did bilateral mastectomies on all women who had LCIS (without DCIS or invasive breast cancer.) They could look at the mastectomy specimens under the microscope and see if there were other spots of LCIS. So, even if they excised your LCIS spot 2.5 years ago, and even if there were 'clear margins' in that LCIS excision 2.5 years ago, you could still have another spot of LCIS nearby. (You do NOT need clear margins with LCIS.) LCIS is not RELIABLY seen under any kind of imaging, so they can't tell if your original LCIS spot grew, or whether your LCIS was there all along.

So they can diagnose you with multiple spots of LCIS, and your multiple spots of LCIS may or may not be of several different types of LCIS, but (as far as I know) they can't tell if your original LCIS grew, or whether it was there all along.

Of course you need to consider ALL of your alternatives. As the mods said, it is good to get multiple opinions to get a range of your options. Once they are fairly certain you don't have DCIS or invasive breast cancer, there is no rush to make a decision what to do. You are NOT in the situation of our sisters and brothers who have invasive breast cancer who need to make a decision in the next few weeks/months what treatment they want to have. Remember, LCIS, in spite of the name, is NOT considered cancer. Most breast cancer is fairly slow growing: it normally takes some 5-10 years before a breast cancer can be detected by ANY means.

Since like it sounds like your mother had DCIS or invasive breast cancer, then they may or may not want to consider doing genetic testing, which can also take some time.

So take your time until you feel comfortable with your decision. Sometimes you can change your mind. For example, if you opt for watchful waiting or watchful waiting with antihormonals, you can later change your mind and do bilateral mastectomies. You need to make the decision that is best for YOU, and of course, you're the expert in that area.

FLXteach

Thanks! My MRI showed areas of concern, and I've been referred to a BS for consultation and probably another biopsy. Last time, my BS said he "got it all" and everything else looked good. After reading the info here, I am absolutely not going to rush into anything. It's a big decision, and I so appreciate everyone sharing their experiences so I can make an informed decision.

My insurance won't cover the genetic testing, and my mother isn't a reliable source of information. I do know she had at least one lymph node removed, followed by radiation. Other than that, her information isn't reliable. She really doesn't believe she had breast cancer at all, that the hospital did all that just to make money. I love her dearly, but...

Anyway, she is 80 now and has regular mammograms, with no recent concerns, so that is also a relief.

I have time to get a second opinion, but the Breast Clinic I go to is phenomenal. I do trust their judgement.

Lsunshine

I am new to this board so please be patient with me. I have had so called benign fluid filled cysts in my breasts for 2 years. I have had mamo and u/s also had them drained. I had a large cyst on my right breast which was pushing my nipple down and making me lopsided. I was very self conscious about it. I had a breast augmentation 8 years ago so I decided it was time to replace implants and do a partial lift. I also insisted the ps remove that cyst. That is when my lcis journey began. Cyst was positive for lcis that was April 17/2017. I had an MRI and u/s. I have seen 2 breast oncologists looking at the MRI it was filled with cysts both breasts. Also when the specialist has a hard time doing a breast exam you could only imagine how I feel. How do I know the difference between fluid filled and a cancerous lump. My options tamoxifen mamo/MRI every 6 months both bs said chances are there would be need for biopsy every time because of amount of cysts.Or PBM. My husband put it best "we can live without boobs, we can't live without you." The decision is the right one for me and my family. I just do not feel I could handle the emotional roller coaster of testing and poking. So I am scheduled for PBM on august 28. I am nervous and any help or recommendations to prepare for the surgery would be greatly appreciated.

LoveT

Lsunshine,
I can't really offer you any information about PBM, except that I know several gals very close to me go through it and had great results. It'll just take a little while to get back to feeling like yourself. Will you be getting expanders or immediate reconstruction? Or are you going with wait and see how you feel? If you're going flat without recon, I think you bounce back much more quickly, but it's a personal choice. I was diagnosed with radial scar/LCIS in April & just had a re-excision lumpectomy due to LCIS on all margins. So I'm still in the waiting game. This has been a really long diagnosis & I don't know if I can go through this angst every 6 mos. But my BS thinks that mastectomy is way too radical. I will definitely go for it though if I end up in the recall biopsy circle every year. It does look like there are subtypes to this strange LCIS thing (PLCIS, Florid LCIS & Necrosis LCIS,) so if you have one of those subtypes, I would definitely go for PBM! It will be rough for a month or so, but like your husband said, "we can live without boobs, but not live without you." He sounds like a great guy. Plus, why put everyone in a constant worry mode. You have to enjoy life & your family. This will be in your rear view mirrror sometime in the Fall. Good luck to you & keep us posted. Or you can pm me anytime.

Lsunshine

LoveT my plans are expanders. I was told by my ps that if they do expanders they have more freedom to tweekthings here and there to give you the best final result possible. I am also having skin and possible nipple sparing. If they aren't able to save the nipple I will have 3D tattoos 6 months after final surgery. Which hopefully if everything goes well healing expanding etc should be before the end of December. Hopefully so I don't have to meet my deductible again. My DH is a great guy we also have 5 kids 6yr,11,15,18,20. So I need to be around for a long time for them. Thank you for your support good luck to you also. It's nice to have people to talk to who are experimenting they same emotional rollercoaster that I am in

Lsunshine

I absolutely hate the waiting. Now I feel a huge cyst on the outside of my right breast. The last big one I had removed. That is how we found the lcis. Hopefully once we have surgery bmx the pathology results will be non invasive. I am hoping and praying not that anyone wants lcis. I just hope it isn't worse. Fingers crossed and continue the waiting game aug 28 is surgery date

LoveT

LSunshine,

The waiting is so hard. I totally understand. Its hard to keep a "poker face" on & go about life when it could be completey turned upside down for a little while. And I don't have kiddos. Just a lot of people who rely on me daily. Just try to remember that LCIS is the absolute best case scenario! I feel blessed that this is all I have to face. I know it's a gray area, but feel good about your decision to PBM. You got this, girl! There are a lot of strange things that happen to your breast when they start diagnosis. Even just the original US seemed to cause new symptoms.The biopsy was by far the worst as far as bruises & bumps. I felt like new things were appearing shortly after. It's mostly a disruption of tissue, but don't ever hesitate to let the Docs know about any new change. Every gal is different, but if it's any inspiration, my 2nd (ugh!) lumpectomy just came out completely clear of LCIS on the margins of the lesion!! I feel blessed to have this outcome & nothing more serious. It's taken 3 months to get here. I know you have a few weeks before surgery, so allow yourself to go through whatever you're feeling. It's life changing, but it can be a very positive life-affirming time as well. I'm cheering you on!

Lsunshine

thank you love T I really needed that

LoveT

Lsunshine.
I'll be cheering you on! I think this is a very old thread that we're posting on, so it's hard to get other LCIS gals to offer support/information. As far as posting on breastcancer.org, I have been all over the place during the last 3 months. With a lot of great response to questions & support. There are surgery forums, Mastectomy forums, Waiting for Results forums, & everything between. And you can always start a new thread in LCIS too. I had a couple of great gals help me out by doing that. I just don't want you to feel left out in the dark. We LCIS gals are somewhat rare. Sending girl power your way! And don't hesitate to pm me anytime!

Lsunshine

thank you LoveT. I am here for you to pm anytime also