Topic: newly diagnosed

Hi there! Welcome to the LCIS community! I decided to join bc.org when I found out how few women have LCIS and nothing worse. I knew I'd never find an in-person LCIS support group. They don't know how common an 'LCIS and nothing worse' diagnosis is, but this study was one of the few that decided to propose some actual numbers. (They rightly emphasize these numbers are very uncertain.) http://www.ncbi.nlm.nih.gov/pubmed/12353815?dopt=abstractplus


Lucky32 did a great job at describing lobules and ducts. She has better verbal skills than I do.

I think that LCIS means that there are a bunch of abnormal lobular cells in the lobules, so the lobules are all filled up with these abnormal cells, like marbles in a bag (the marbles being the abnormal lobular cells, and the bag being the 'basement membrane' of the lobule. If these abnormal cells broke through this basement membrane, then it would be called invasive.) ALH (which I have too) is, roughly, when the 'bag' is not completely full of 'marbles'. I have 'LCIS with pagetoid spread into the ducts', which, from what I understand, says that I have LCIS in the lobules, and they have also spread into the ducts. I think that lobular cells must look different than ductal cells. I have seen one poster who said she had DCIS with pagetoid spread into the lobules. It took me more than a year to find out that yes, you can have lobules right underneath the nipple.

The only thing I can think of that is NOT controversial about LCIS and nothing worse, is that I have found no articles that dispute that it was first described by prominent pathologists Foote and Stewart in 1941. (This was AFTER the description of DCIS.) http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=314428 I saw one paper that said no one challenged the name LCIS because these two pathologists had so much stature.


Everything else, from whether or not biopsies that contain LCIS without a worse diagnosis should be excised, how LCIS should be defined pathologically, how multifocal it is,what LCIS should be called, whether or not LCIS should be classified as cancer, how common LCIS is, how much added risk does LCIS give to a woman's risk of breast cancer, whether or not a significant family history of breast cancer increases an LCIS patient's risk, to how people with LCIS should be followed or treated, is controversial.


It has been a lesson to me since Dec 2005 when I was diagnosed, how absolutely little we know about LCIS. I heard that oncology is like looking with a flashlight for something in a pitch black room. We don't know the answers to a lot of things.


This is what the National Cancer Institute says about LCIS. That doesn't mean there isn't any controversy about it. http://www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page6


When I was first diagnosed, I thought this should be easy. I will just find out my risk for breast cancer, and then make my choice. I'll just ask my oncologist when I see him. I like to think I operate a lot of my life with numbers.


Well, I've been given numbers for my lifetime risk of breast cancer from as low as 10% (the lifetime risk of an average woman in the US is normally quoted as between 10-12%) and, in one breast cancer calculator as 79%. (without tamoxifen). That's a big range.


There is the NCI breast cancer risk calculator which uses the modified Gail model to predict breast cancer. http://www.cancer.gov/bcrisktool/ which specifically EXCLUDES LCIS. I think it may also say it should NOT be used to make clinical decisions for an individual woman.


There is Dr. Hall's breast cancer model http://www.halls.md/breast/risk.htm . WARNING WARNING: DO NOT GET A HEART ATTACK if you put your numbers into this calculator. Dr. Hall SPECIFICALLY SAYS that the numbers from this calculator have NOT been peer reviewed and they have NOT been compared to populations with these risk factors. It says it should NOT be used to make clinical decisions!! This was the website that gave me the 79% risk. This risk model assumes that all your risk factors are additive. This asks the question: If I have LCIS AND a bad family history, do I have a higher risk for breast cancer than if I had LCIS alone? There are some risk factors for breast cancer that are NOT additive. We do not know the answer to this, from what I know.


I discovered this editorial last fall. http://jnci.oxfordjournals.org/cgi/reprint/98/23/1673.pdf
The Gail model is far and away the most common breast cancer calculator, the next most prominent one only used for women with BRCA. This editorial says that the modified Gail model (which includes atypia but excludes LCIS) WAS better than a coin toss in predicting whether or not an individual would get breast cancer - but not by much. This is IF the Gail model could be used for LCIS (which it can't, according to the NCI website.) My GP, who obviously does not know much about LCIS, agreed that you cannot predict which woman will get breast cancer.


I have found discrepancies in what various ACS guidelines say about LCIS. I would feel better if they said "Well, we think its in the ballpark of X, but we really don't know." Instead, they often say one thing in one sentence, which contradicts the next sentence. Then pages later they say it might be something else, and the sole citation they cite says something else, and the abstract is trying to say that 0 out of 7 was different from 2 out of 7. It is, but those numbers are way too small to have any certainty about them.


You will find various women here have been given a variety of recommendations - whether or not they were excised after LCIS was found in a biopsy, whether they were told they 'had breast cancer', whether they were excised, or excised to the margins, whether they were recommended they have just screening, tamoxifen/raloxifene + screening, or prophylactic bilateral mastectomies, whether or not they are screened with MRIs.

Since my LCIS diagnosis (Dec 2005) and excision (Jan 2006), I've had 2 benign biopsies last year. I'm on tamoxifen now. I'm getting yearly mammos and biannual clinical exams. I started out with a clinical exam every 4 months.

My advice? Get 'your team' together. Get people you like and who respect you and your values and your attitude. (This may change over time.) As lucky32 said, there's no rush in making any decisions. Feel free to ask questions.

mommaz-----when I was first diagnosed with LCIS (over 4 and a half years ago), not only did I have trouble finding anyone else with LCIS, I couldn't even find anyone on the chat rooms or discussion boards who even knew what I was talking about! (One reason I think it is being diagnosed more often now is the new improved digital mammos).  I finally asked for our own LCIS catagory because we have our own special set of issues that are very different from those with an "official" cancer. As others here have said, there is a great deal of controversy surrounding LCIS. I have run into as many that say it is bc, as that say it isn't bc. I was given the usual 3 options: 1) close monitoring 2) tamoxifen and close monitoring or 3) BPMs.  I chose #2 as I was already watched fairly closely due to my mom's bc, my medical team all felt that BPMs were too drastic for my particular situation, and I wanted to do so something proactive  to try and prevent an invasive bc in my future. Fortunately, I tolerate tamoxifen pretty well and it appears that it's working--aside from some "false findings" on my last 2 MRIs (repeat MRI and mammo 2 weeks ago now all clear!)  I haven't had to have any other breast biopsies or surgeries. I see my oncologist every 6 months and I've been alternating mammos and MRIs every 6 months on the opposite schedule. (but that may be going back to every 12 for MRI/mammo now).

Medically, LCIS and DCIS are both "technically" in-situ breast cancer. DCIS arising in the ducts, LCIS arising in the lobules; both contained--have not broken thru into the surrounding breast tissue. As far as the difference between LCIS and DCIS goes (and this is JMO from my research; I'm a medical professional but not an oncologist)---it seems to be related to their relative potential for invasiveness.  I've seen many stats over the years saying anywhere from 30% to 60% of women with DCIS, if left untreated will go on to an invasive bc within 10 years. My surgeon quoted only 5% for LCIS, but I've seen stats as much as 17% within 10 years. So I guess since LCIS has a very low potential to become invasive over time, it is not considered an "official" cancer by many in the medical community. I personally am glad that my doctors take it seriously and watch me very closely. Feel free to PM if you  want to talk anytime.

Anne 

allison-----I don't think there's any right or wrong with LCIS, I think  it just comes down to how much risk you can live with.  Given my high risk from the combination of LCIS and family history (my mom had ILC), I wanted to do something proactive to lessen my chances of developing an invasive bc in my future. My mom had taken tamox and tolerated it very well (she's now a survivor of over 21 years which to me says a lot!), so that factored into my decision making. Tamoxifen is generally well tolerated by most, the most common SE is hot flashes.  The more serious SEs (blood clots or endometrial cancer) are reportedly less than 1%. I would recommend that you talk with you doctor about your risks and benefits of taking tamox.  No one can tell you what is right or wrong, whatever you decide has to be right for you.

Anne 

Mommaz,

You're in the right place as these ladies are so helpful and know their stuff!! Sorry that you have to deal with this controversial dx. It can be so confusing to read the different reports and opinions.

I just wanted to chime in with my experience.  I was dx with LCIS only in my right breast.  The left was benign.  Since my right breast was full of it (stereotactic bx, wide excisional bx, 4 core bx in each quadrant) all the docs suggested mastectomy.  I went to 4 different surgeons and also an oncologist before deciding to go ahead with bilateral mastectomy.  I decided that I was not one who would handle the 6 months testing etc.  I just kept worrying "What if they just didn't biopsy the exact tissue where it's more than LCIS or if they didn't catch the portion that had indeed gone invasive?"  I hate to wait!!! Also, I'm 50, had my children etc...so the idea of mastectomy for me was ok.  Also, after the wide excisional bx, I had one smaller/indented looking breast anyway....I figured with bilateral mastectomy / reconstruction would give me a symmetrical outcome. After the mastectomy, the pathology came back that there was a small invasive portion.  I was glad that I went ahead with my gut feelings to have the surgery. Anyway, since your biopsy and excision showed that they got clean margins, it appears that your LCIS was found and removed at a good time.  I've heard it described as more of a thickening, lacy spider web type of appearance rather than a lump.  I'm glad that you were able to get it removed and you can now be aware and be monitored more closely. Everything I've read says that it's slow growing, so there is time to research and get opinions from your team.  With close monitoring, you'll be able to catch if there are any changes early on.  Best wishes to you as you go thru this journey.  Let me know if you have any other questions.

Hi femme. I'm confused. If its not too personal a question, could you talk more about the wallpaper appearance? Is (s)he talking about how your breasts look externally, or your LCIS cells internally? Not sure what a wallpaper appearance means. Thanks so much!

Ah, I guess this is a description of LCIS that I've read as usually being multifocal, and often bilateral?

Wallpaper....hmmmm..... I hope it's not the gawdy kind with red velvet and little cherubs shooting arrows!

Speaking of wall coverings....I am 7 weeks out from my lumpectomy tomorrow. My seroma has gone away, but I think I am going to need some spackle.......

Oncologist appt tomorrow to draw blood - I am assuming to see if the tamoxifen is doing it's job? Is it possible she will raise my dose? I've had no side effects except insomnia (which I am prone to anyway) and no period. Considering, I'm a pretty happy camper so far.
Kimber

Anne,
Thanks for the info. Tumor markers?? I assumed they would be testing my hormone levels to see if my estrogen was diminishing? Isn't that the purpose of tamoxifen? I can tell by my breasts that my estrogen has decreased - they usually swell up and are VERY sore right before my period. That first time of the month for me on tamoxifen came and went with only some cramps. I'm curious also, I see all these postings of ER+/- and PR+/- ..... how do you know that? I am on 20 mg of tamoxifen from the start.

I am assuming that the LCIS cells need to present larger to be seen on imaging. That maybe they are too microscopic to be seen until they grow? My surgeon told me that we had 100's of thousands of lobes - that's why LCIS is usually seen everywhere.

Do you find that you forget about it for a little while, then all of the sudden you go "oh yeah....." I'm a "cancer patient". Sucks.
Kimber

As far as I understand it, tamoxifen doesn't decrease your levels of estrogen (that's what the aromatase inhibitors do); it blocks the estrogen from binding to the receptors in the breast. Even having had my ovaries removed (not by choice), I still take tamox as there is still estrogen being produced by my adrenals, skin and fat (I've got plenty of that!)  My biopsy sample was supposed to be checked for estrogen/progesterone receptors, but wasn't because it was too small a sample. They said I could take tamox regardless whether it was negative or positive, as there was nothing else to offer me at the time; (now some doctors are also prescribing  Evista); and that because most LCIS is found to be positive anyway.

Anne 

Jeez, I guess I never dreamed I would need bloodwork for all of that.....I just assumed it was to test my hormone levels. I guess I'll find out tomorrow!

Hi all,
Yup, that's what I've read too, that normally LCIS doesn't show up on imaging. However I think that 1 or two people here have stated theirs did show up on imaging, or a thickening. Mine didn't. I know I've read papers that opine that LCIS usually doesn't show up on imaging (that's a big reason why its hard to study-we don't know how many women are running around that have it but don't know it because they've never had a biopsy to that spot).

I've also read that often LCIS is in cells that are *adjacent to* but not *at* the site of the abnormality that prompted the biopsy. In other words, they think that usually LCIS causes both breasts to be at higher risk for breast cancer, but as far as I know, they don't know why. They think in a *small* number of cases, LCIS may be a nonobligate precursor (the LCIS is NOT destined to become cancer but MAY become cancer).

Tomorrow's my mammo. Lost, then found my mammo order (in my mammo films). I have a lot of other issues going on. Good luck, lucky32. I'm thinking of you!

Thanks everyone for the info.   Lucky and Leaf--praying that you both get clear mammos!!!!!

Anne 

That's wonderful, leaf! What are you going to do to celebrate? Will it involve chocolate?

Thanks lucky and Kimber.

I'm trying to support my single friend who has (almost certainly) terminal cancer. This is the first time I've seen first hand the health care mess when it counts. (She can still walk and drive. Her pain scores have been above 7 for the last 2 months, and if its not pain its nausea.) She bounces between continuing treatment and not. I will honor whatever she chooses, of course, but its hard when she changes her mind every few minutes. I don't know if she is having trouble deciding or if she is thinking clearly. But today, she didn't talk about discontinuing treatment all day. I think she is frightened of being abandoned-this must be common. She definitely does not want to talk about what she is feeling.

Tomorrow I'll be spending almost all day with her. Between getting treatments and getting prescriptions filled, its a full time job! I'll have to go back to my regular work soon, so I won't be able to help her nearly as much.