Surveillance for me? Yeah, Right, Sure.

auntiems3

Audrey,  I LOVE the shirt.....and is that a pet Oppossum on your shoulder? Name? 

 Just wanted to know I am with you in your countdown.   Hang in there and I will hang with you.

Marie

SimplyAudrey

Thanks Marie!

(Opossum's name is Opus, comes to me if I call him Opi-San)

I woke up realizing I am three weeks out and fear of the unknown is creaping in. In fact, it smacked me in the face. Somehow I am feeding the wrong dog here.

I have faith that all will be well, I guess I just need reassurance.  The fact I need that reassurance means the dog of fear and doubt has been eating well.  The dog of faith is not starving, the other is just taking it's lion's share.

All of us have 2 dogs within us....one of fear and one of faith.  I need to remember that it is MY choice which dog gets fed!

loriio

Audrey,

I'm praying for you. You will get thru this. There will be good days and bad days but we are here for you. Feel free to DM me if you need to ask anything. I'm still in TEs. One fill left and exchange will be in November! Take care,

Lori

Waitingforthenextstep

I'm new to the boards but I have a question about LCIS.  I know a woman, recent dx with LCIS had a PBMX. also reconstruction, and will be getting implants soon.  She will not be having any other treatment.  Is this possible?  No post-op treatment? 

froggy12

Waitingfort,

I had both LCIS and DCIS and had BMX in late July, no other treatment for me! I do have an Oncologist that will be following me as well as my surgeon.

froggy12

Audrey,

I have been catching up on some post today and wanted you to know that I will be praying for you! I am currently waiting on my last fill this week then on to squishies soon! Take one day at a time, and remember to wite down any questions that come up!I found that I never heard everything and was very thankful that my DH did!

SimplyAudrey

t-7.

Safe room on reno-house almost complete.  Pre-admit work up done.....just have to nail down the anesthesiologist this week and see my PS Friday morning.

MIL and SIL in town for 2 weeks.  Entertainment this week and weekend, and there to help next week.

I will be glad to have this on the way to done (TE to implant exchange follows I know)....but the anticipation and the wait for the final path.........what I would do not to know what I know sometimes.

ED2012

Hello Everyone,

I have been newly diagnosed with LCIS/ADH and have been reading through the discussions on this board. I have a couple of quick questions and am hoping that you might be able to help: 

First of all, Simply Audrey - I will be saying prayers for you on 10/1, hoping all will go well and that you will heal quickly! 

Question #1:  I have noticed a few people that are dx with LCIS that have had typing (and some grading) done on the tumor...i.e. ER+/PR+ grade 2.  Mine was not typed/graded and while I have read that most LCIS is estrogen receptor +...just wondering why some would be typed and some not. 

Question #2:  Are any of you being managed only by your breast specialist and NOT an MO?  My BS indicated that he could refer me to a MO...but that he didn't know that they would find me "interesting enough".  He seems to feel that since at this point I am choosing b/t PBMx and chemoprevention, that we can manage that through his practice (his experience in this field is 21 years).  I don't want to trot all over the place to various docs if it isn't necessary - but I also don't want to find out later that I didn't see a certain type of specialist when I should have...UGH...SO MANY CHOICES!!!!! Managing/advocating for your own care is necessary - but so exhausting while trying to deal with all of the emotional stress tied to a BC dx. (or early stage cx or "pre-cancer" indicator...depending on the article one is reading).

I am on day 2 of tamoxifen and hoping to be one of the women who can tolerate it with minimal SEs.  If I end up with additional findings at my 6 and 12 month f/u visits...will at that point be considering the PBMx option. 

Thanks in advance for any input/advice! Liz

leaf

1)  I was diagnosed in 2005, and my classic LCIS was found on a core biopsy.  They only did ER and PR testing.  They did describe the cells in detail though.   I am guessing that the tests you describe depend highly on the pathologist and the pathology department.  Note that decades ago, they didn't do ER or PR testing on any invasive breast cancers, and some women were told only that they had 'breast cancer'.  Perhaps it also depends on the sample.  Pathological classifications change over time; for example the category of PLCIS was proposed around 1995 or 2000 or so.  LCIS was first described in the late 1940s, and DCIS was first described around 1900.  Diagnosis of pre-cancerous breast conditions can be difficult.  That's why some people get 2nd opinions on the pathology.   Some radiologists do not classify mammograms on a BIRADS scale; some do not report breast density, etc.

 2) I am managed by a MO, but when I went for a 2nd opinion at an NCI certified cancer center, they said their LCIS patients were handled by breast surgeons.  It may also depend on your choice of treatment.  If you choose PBMx, then of course you need a surgeon to do that, and may choose to get followed up by a breast surgeon.  For me, I'm comfortable with having an MO follow me.  (I had 5 years of tamoxifen and tolerated that quite well.)  Everyone is different of course, but I have multiple other  (non breast cancer) conditions,  and I know that an MO would be better for me as in general MOs have much more training in internal medicine than do surgeons. (I work in a hospital and its a notorious fact that in general surgeons are not familiar with medications beyond those used immediately in surgery and  immediately after surgery (such as handling fluid imbalances, electrolytes, pressors,  anticoagulation around the time of surgery, etc.))

But everyone's surgical and medical situation is different.  If I didn't have my multiple medical problems and medications, and went to a place where breast surgeons followed women with LCIS, then I may have chosen to use a breast surgeon for followup.  Personally, if I had LCIS and was choosing chemoprevention, I wouldn't want to be followed by a *general* surgeon; I personally would have concern about their knowledge of tamoxifen side effects. If you have finished chemoprevention, then I think it might be more of a toss-up.  

Its important though that you have confidence in whomever you choose.  Doctors are individual just as we are.

SimplyAudrey

There is alot to be said about knowledge and trust.  Does your doctor have the knowledge about you and LCIS enough that you TRUST them?

I can tell you being a tumor board poster child and having 14 colleagues argue over me was a bit strange for me.....but I liken it to panning for gold.  The ones who knew their stuff shined through........those I chose to evaluate me knew my history beginning to end.......and best, they earned my trust.  I cannot chemoprophylax, and my personality doesn't mesh with watch and wait.

I know several "general" surgeons that are VERY involved with our cancer center and very up on disease specifics...and they play well in the sandbox with other specialists.  I've got a GS who's sub-specialty is breast surgery.....our surg. oncologist finds breasts boring and would rather do advanced tumor debulking.......

Chosing doctors to work with is very personal.  We are not cars or widgets.....personality to me matters alot if I am going to have to follow with a doctor over a long period.

And PS:  They did not test my LCIS for hormone receptor sensitivity.  If it had been anything but LCIS they would have .....we talked.  The sub-typing in my case would have been added expense at no benefit to me or my treating doctors.

Anonymous

ED-----they  were planning on testing my LCIS for hormone receptors, but they said the sample taken was too small. Everything I've read and been told is that LCIS is almost always estrogen positive.

 I've been followed by an oncologist for 9 years. (I haven't seen the surgeon since my post-op follow-ups many years ago after my lumpectomy.)  The surgeon's expertise is surgery; the oncologist's expertise is cancer. I feel better being followed by someone who specializes in cancer and its' treatment.  An oncologist is better trained in evaluating the risks and benefits of different meds and treatment options.

anne 

loriio

ED,

My LCIS was not tested. I saw a breast surgical oncologist but she sent me to an medical oncologist to discuss tamoxifen because she recommended BMX or tamoxifen and I wanted to wait and see. It was the MO who strongly recommended BMX in my case over tamoxifen. In my case, neither felt wait and see was a good option. Once ILC was found in the pathology from my surgery, that sample was tested. I am glad I saw both doctors just to have them on the same page. In my case, since invasive was found, im glad I already had a MO i trusted.. Just make sure you find a doctor you trust and that spends the time explaining things.

Lori

123penelope

I have been on this board for awhile, was diagnosed over a year ago with LCIS ADH, sclerosing adenosis & blunt adenosis, columnar cell hyperplasis with flat epithelial atypia,extensive proliferative fibrocystic disease (I looked up my report again) The last mammo was jan. 2012, next one dec. 2012. The last time I saw MO was june 2011, don't even have another appt. with her, she calls in my refills (I'm on Aromasin). I am so angry at all of this, guess I'm not sick enough for them, I feel ignored, and left and the side line, I can't look for other "doctor's" at this time. Thank's for letting me vent, it felt a little better.  

Lori

ED2012

123penelope - I am so sorry for what you are going through!  I cannot imagine that line-up of diagnoses and then not feeling as though I had any advocacy from the medical personnel.  I am not sure what country you are living in, but if it is the USA, sounds as though your doc isn't even following the standard of care recommended by the NCI which is every 6 month clinical breast exams, mammos and consideration of MRIs in some cases.  I hope that you will be in a situation to seek out a different doctor very soon.

123penelope

ED2012 Thanks for your reply, I live in USA, MI.  It is suppose to be a good place where I have been seen in the past, but I sure have not been treated like it.  I do hope I will be able to find another doctor(s) because I do not like the situation I am in, being treated by the "medical professionals" the way I am.

ED2012

123penelope, one thing I would suggest is to find out if the hospital your doc is affiliated with has a patient advocate OR if your place of employment offers one as part of the benefits package.  I have seen these individuals at work both from the inside perspective (I am a healthcare worker 21+ yrs) and as a consumer recently as I have fumbled my way through this new diagnoses...it really does help.  If you feel as though your concerns are not being met...it is amazing what an objective third party can help resolve.  Sometimes the healthcare providers need a "pause and listen" opportunity so they can meet the needs/concerns of the patients.  After all - you or your insurance is paying the bills and NO ONE will be as concerned about your personal well being more than you...so while it stinks to have to advocate for ourselves, even if it is only to reach out to a patient advocate to help us...it is VERY MUCH well worth the effort. If you are worried this will negatively impact the care you are given - I don't think you should be, as I have only observed improved, more thoughtful and sensitive care after the advocate has brought concerns to light.   After all - we only get one shot at this life, so we need to have every opportunity to make the most of it!  Good Luck as you go forward. 

123penelope

ED2012 I just read your post, I will look into the info you said.  That did worry me that it would make a difference. (I have my mother and sister ,none of us live far from each other, they have been my support, don't know what I would have done without them.) Reading your post and reply has helped me alot. you get it I just wish other people did too, who are not on these boards.  Maybe those people need to come to these board's and start reading the post's so they can get it to.  Others on here have been a help  You have been a healthcare worker over 21 years, wish I knew someone closer to me that has had that kind of experience.  l am a quiet person, but I need to speak up for myself because I feel the doctor's I saw weren't concerened enough for me.  This is my life and as you said we only get one shot.  The doc's have even told me I don't even have BC (LCIS), one even said to me right before he was to tell me what was found, he said you look worried -you don't have cancer, paper's right in the office was written that LCIS is stage 0, I mentioned that, she said call it what you want. (2different doc's)Thank's to all who have read this.  You don't know how much this has helped me get this off my chest (as the saying goes). I am glad this board is here,

SimplyAudrey

I love the diagnosis of Lobular Carcinoma in Situ - It's NOT cancer, but carcinoma's in the name?  It just puts us at increased risk of invasive bilateral disease, but it's not cancer?

Talk about a GREY diagnosis!

It is true though......you can't really make a clinical decision on LCIS alone.....there's a whole lot of other things to take into account risk factor wise and personal wishes.

Me, I don't have a great attachment to my breasts, and if that tissue has a chance of being the reason I die, away with it I say!

ED2012

SimplyAudre - I hear you!  What leaves me even MORE perplexed about the LCIS terminology and associated implications is the fact that a few years back when some healthcare providers moved to change the label to lobular neoplasia... it DID NOT FLY...hence we are left with the current terminology.  Makes one wonder which side of the fence is TRULY correct on this one.  Really - until they focus more time and research on this particular category, I don't think we will know.  I stumbled upon an older thread a few days back (2009) while doing some research and it was mindblowing to me that we already know more now than we did then regarding PLCIS...in that thread at that time - people were asking each other if they knew what pleomorphic meant and if any of them had been dx with something similar.  Now PLCIS is recognized in the literature as being a big red flag as more indicative of a potential to develop invasive cancer.  I just wish the researchers would spend some time on LCIS/PLCIS in general so those of us in the "grey" zone could be more specifically proactive!   I personally don't relish the idea of being a "ticking time bomb".  Funny aside story:  I have been looking into getting some life insurance and the agent asked if I had been dx or received any treatments for cancer....after a brief moment of thought...I said "no"....but then inside I wondered if that was really the true answer.  I want to be truthful...but didn't dare get into trying to explain the LCIS dx and then say "oh, but they say it isn't cancer".....anybody think any other body of people or industry would accept that explanation?  Probably not.

SimplyAudrey

ED....was THINKING that same thing today!  Now that I'm having my breast tissue removed and some "aftermarket parts" inserted, is this going to effect my ability to get life insurance in the future if I need it?

I would think if anything it would make me more eligible than if I didn't.....but who knows how insurance companies think.  My health insurance just denied payment for the computer algorithm assisted detection charge of my MRI because they deem it "experimental".

Experimental?  It's had a CPT charge code for over 6 years!  WTH?

Sheesh......I think I need chocolate cake.

leaf

 LCIS sure is confusing!  I know I have a BIG fault of acting superior, especially when I'm not right, and not knowing when its time to shut up, but this is what the NCI currently says about LCIS (emphasis mine):

The term lobular carcinoma in situ (LCIS) is misleading. This lesion is more appropriately termed lobular neoplasia. Strictly speaking, it is not known to be a premalignant lesion, but rather a marker that identifies women at an increased risk for subsequent development of invasive breast cancer. http://www.cancer.gov/cancertopics/pdq/treatment/breast/healthprofessional/page5

I promise I'll shut up now.  (I can hear cheers of joy all around me  )

SimplyAudrey

Leaf, I agree with what you said whole heartedly,  LCIS in itself doesn't give you much of anything.  It's the combination of it with other aspects of your history that creates your picture or case.  In my case, it's a 50% 5 year risk and 85% 15 year risk of invasive tumor and everything that comes with that.  I, personally, cannot live life on life's terms knowing I'm at a VERY increased risk (forget the numbers, statistics are statistics and people are people) of developing something that I can prevent with a procedure, as "drastic" as some may see it.

I wish I could do watchful waiting.  My brain won't allow it!

ED2012

Leaf - Lol, you are too funny! ;  I know... NCI does say that, but then just to confuse us, all of their "categories" that one can look up list LCIS - as do the other major sites.  Just goes to show the lack of concensus amoung the experts - leaving those of us with the diagnoses wondering...obviously, when one has ALH (a type of neoplasia), the risk for invasive cancer development increases by 4-5% over that of the "nl" woman.  However, the dx of LCIS (again a type of "neoplasia" according to some) increases the chance of developing invasive cx by anywhere from 10-12%...depending upon the literature source.  It doesn't seem to take rocket science to figure that increasing ones' baseline risk by two-fold plus would indicate vastly DIFFERENT behaviors b/t the two (ALH vs LCIS).  Just doesn't seem wise to lump it altogether into one category.  Please know that any frustration that may come through in my statements are NOT directed towards you....just towards the medical community for their lack of clarity on this topic.  In their defense - we are "rare" women, representing only 3.6% out of every 100,000 who have this type of disease.  And, the only reason we know that is from studies that were done mainly from autopsies and on women who were having mastectomies for other reasons.  I wonder what all of us may learn about this five years from now?  I hope there will be advancements in understanding for our sakes as well as for those who will unfortunately follow us.

SimplyAudre - No justifications needed!  If I end up having to face additional biopsies in this next year or so - I will very likely follow your decisions.  Thankfully, all of us understand the personal nature of these types of decisions and I think it safe to say you will not face judgement from this crowd.  Totally stinks about the MRI/ins. situation...I hope they enjoy paying for the PBMX!  Stupid, Stupid industry!!!!  I think I remember that Oct. 1 is your big day - you will be in my thoughts and prayers. 

ED2012

All - just found this article - timing is perfect!  It came out on Cancer Network on 4/8/11 and discusses the specific spectrum of pathology for ALH/LCIS/ILC.  Hope it helps all of us understand...   http://www.cancernetwork.com/breast-cancer/content/article/10165/1838067?_EXT_4_comsort=of  (Journal of Oncology)...here is an excerpt:  

How Does LCIS Differ Pathologically From Atypical Lobular Hyperplasia and Invasive Lobular Carcinoma?

DR. SONALI JINDAL AND DR. JOSH WISELL, pathologists: Lobular malignancy represents a spectrum of disease varying from noninvasive lobular proliferations, including atypical lobular hyperplasia (ALH) and LCIS, to invasive lobular carcinoma (ILC).

In ALH, neoplastic cells replace the normal epithelium of a terminal ductal lobular unit, often a relatively subtle finding. With progression to LCIS, the neoplastic proliferation increases and the changes become more prominent, expanding the lobules and extending into larger ducts, but still constrained by a basement membrane. ILC results once the neoplastic cells have extended beyond the basement membrane.

To me....this sounds like all that separates us from "true cancer" is the basement membrane of the lobular/duct structure!  Thank goodness for the basement!

ED2012

Correction:    OOPS - incidence of LCIS is 3.19 per 100,000 women (NOT 3.6% as I inadvertently typed)...sorry. Source:  SEER (Surveillance, Epidemiolgoy and End Results)

Anonymous

ED----until I read the article you posted, I was kinda elated with my "completely clear mammo" from yesterday, but that article really brought me back to reality. But I thank-you for it, as it points out exactly why I am continuing with my vigiliant high risk surviellance program (of alternating mammos and MRIs and breast exams) and preventative meds. (tamox; now I am on evista for further prevention). They just don't know how to predict which LCIS will progress to invasive disease or when. I think maybe I should be in a study of long term prevention ( over 9 years now).

The good news is that I really don't worry about it much at all these days, until the moment of my mammo or MRI; and even then I don't get worked up about it. I'll deal with invasive bc if and when I have to.

Anne 

SimplyAudrey

All marked yesterday by my PS, and I'm off to swim with the Dolphins today!

Picked up my bucket-o-prescriptions and supplies....... This morning is dog bath time then a run to the grocery to stock the larder.  Tomorrow is the "bye bye boobie" party...and Mondy begins the journey to Noobs.

Ladies, if guys don't understand BMX with reconstruction, explain that your OEM is malfunctioning and have to be replaced with aftermarket parts.....(I feel a t-shirt slogan coming on).........

Have a FABULOUS weekend, everyone!

123penelope

SimplyAudrey prayers for your upcoming surgery on Monday and for a healthy recovery.     There is more to us than our boobs.

That sure is a lot of information to process, I'm still confused, advocate did not work out so I will have my mammo in Dec.  Would like to ask all of you how you came about your decision on what treatment was best for you having the diagnosis of LCIS. I have 2 first cousins BC, one first cousin ovarian cancer. Don't think that is considered family history.

loriio

Penelope,

I did not have family history at all. My only risk factors besides LCIS were having boobs (that were very dense). I wanted to do monitoring but after my excisional biopsy, my BS strongly recommended BMX or at the very least tamoxifen. She sent me to a MO so I could go on tamoxifen and after he read my pathology report, he recommended BMX as well. That kind of shocked me. He walked me through my pathology report and noted why my case was so concerning. I can't even remember what he said, but I know that it was high grade and "concerning cell changes". He actually said to me, "it's just a matter of time" before I had invasive cancer. I saw 2 other doctors for 3rd and 4th opinions. They agreed. I don't know what is different about my case that made them recommend BMX. I know the MO doesn't recommend BMX very often. in my case, he happened to be right. I had invasive cancer that did not show up on mammogram or MRI.

My LCIS story is rare. You are doing he right thing by gathering as much info as you can. Find doctors you trust. But in the end, you have to make the decision you can live with. The surgery is hard-emotionally and physically.

Just know that there are women here who will support you know matter what you choose to do. I don't mind answering questions by private message about the surgery, and I'm sure the women who have chosen tamoxifen or monitoring feel the same way. Best of luck to you.

Lori

leaf

I didn't have BPMxs because, for the first reason, my breast surgeon refused to do so.  That was her first sentence to me at the first appointment  (to set up my initial breast excision).  "If you want to have prophylactic mastectomies I will fall out of my chair."  This was before she asked about my family history, which I think is not a proper introduction if someone had a good chance of having a BRCA mutation. (My family history ended up being weak.)  After my breast excision, she said she did not want to do any further surgery on me. That, and other comments of hers, did not endear me to her, and I do not want to see her again.

She was the only breast surgeon in my network.   You aren't going to have surgery if there is not a surgeon who will do the surgery.  I'm not enough of a DIY woman to do the surgery myself .  I knew even if I went out of network that I'd have to handle a big part of the surgery out of pocket.  At one (unrelated) surgery, I was charged (I did not pay this rate, nor did my insurance) $5K/hr just for recovery room charges.  The last hour was me sitting unmonitored in a chair waiting for my ride home.

Meanwhile, (I suspect partly due to my underlying issues with anxiety),  I was diagnosed with a new condition, or a new proceedure (such as 2 biopsies at year 1 for suspicious findings on my mammogram which turned out nothing worse than LCIS) every 3-6 months for the next 3-4 years.  Some were minor, such as psoriasis, but others not so much.

Since I gained so many diagnoses during that period, I was certainly busy with 'everything else'.  I certainly want to be followed by a MO, as opposed to a surgeon, because I have such a complex medical history.

My breasts have been 'quiet' since 1 year after my LCIS diagnosis.  If my breasts start 'acting up' again, I will certainly be re-visiting BPMxs, even though one of my diseases makes it harder for me to heal. If I do get invasive, particularly advanced invasive, I may be in deep do-do, because I have a relative-to-absolute contraindication to radiation treatment.

So, as lorio very wisely pointed out, you will find support here for whatever you choose - whether its BPMx, antihormonals, watchful waiting, or even if its just waiting without monitoring.  (I don't think any medical people really encourage waiting without monitoring - monitoring being clinical exams and yearly mammograms)- but I can imagine that some people are very afraid of radiation and would refuse mammography, and some people might be freaked out by clinical exams, if, say, they had a history of sexual assault or a horrible biopsy/excision experience.

So there is no 'one size fits all' here.   As lorio wisely says, most of us are happy to share our experience if it helps someone make a decision (for or against) in some way.