Just diagnosed

nash · August 2009

I reported them, too. Honestly, what is wrong with people?

leaf · August 2009

Hi Omahagirl : my web browser can't find that URL.

"I have a couple of questions: (and thanks for your responses): if LCIS is considered a neoplasia and not a cancer as some are saying--what is the difference between the two?

And--if the "abnormal" cells do not spread but stay in the cells then why do I have atypical lobular hyperplasis in my ducts?"

Here is what Princeton says: " malignant neoplastic disease (any malignant growth or tumor caused by abnormal and uncontrolled cell division; it may spread to other parts of the body through the lymphatic system or the blood stream) " http://wordnetweb.princeton.edu/perl/webwn?s=cancer

Neoplasia: "The process of abnormal and uncontrolled growth of cells. The product of neoplasia is a neoplasm (a tumor)." (neo litereally means new, plasia = growth/ development.) Note you can have benign tumors.

Neoplasia includes ALH and LCIS. I have seen NO references that classify ALH as cancer.

Your lobules and ducts form a convoluted tube that end up in your nipple. So its like a dead-end street (except there may be multiple lobules connected to a duct.) The lobules are the 'dead end' part of the street, and the ducts are the long connections between the dead end of the street and the nipple. The ductal and lobular cells are like cars on the street. This convoluted dead-end street is lined by a membrane called the basement membrane.You might think of the basement membrane as the sidewalk going around all the parts of the lobules and ducts. (Think of this street as being fully developed, with a sidewalk lining the entire street. Ducts are thought to be convoluted but not interconnected, so there aren't cross streets. As far as I know, they don't know for sure if lobules interconnect or not.)

Invasive breast cancer breaks through this basement membrane, and invades the surrounding breast tissue, so it gets to the houses on the street, and in their backyards.

In normal ducts and lobules, all the cars are obeying the parking laws and are not blocking driveways. All the cars are in good shape. There should be no cars parked in garages or on driveways.

In hyperplasia, you have more cars packed in the parking spaces. The cars are still normal looking, are parked on the street, but are blocking driveways. In Atypical hyperplasia, the cars have been vandalized (they look abnormal), and are blocking the driveways. In LCIS, these vandalized cars are not only lining the sidewalks and blocking the driveways, they are double, triple, and quadriple parked, so that the entire street is covered and filled with abnormal cells. (Some people call LCIS as 'marbles in a bag', to mix metaphors.)

Lobular cells look different than ductal cells. (I don't know how they tell the difference, but the pathologist presumably does.) You can have pagetoid (which means like in a line, like soldiers) spread of LCIS into the ducts (I have this), and you can have DCIS with pagetoid spread into the lobules.

In both LCIS and DCIS, the abnormal cells (cars) don't cross the sidewalk (basement membrane) and get to the houses and the backyards. If they did, it would be invasive breast cancer.

I'm sure this is an imperfect analogy, but hope it helps.

cleomoon · August 2009

Leaf love that analogy.

upcreek · August 2009

Thanks again leaf for your input and your expertise. I enjoyed your response!

kdavis1163 · August 2009

Well, I met with my breast surgeon this afternoon. I must say I feel a little better about things. Previously I was freaking out due the way my OB/GYN gave me the news "you have breast cancer". I'm really, really ticked off at her for the way she told me. I think I'm going to discuss it with her and tell her she really needs to work on how she tells someone about LCIS/ALH.

The breast surgeon wants to do a lumpectomy with wire localization and also at the same time do a mirror image biopsy on the other breast, because LCIS is usually bilateral. Then, assuming she doesn't find anything more serious, I am then to see an oncologist and probably be put on Tamoxifen for 5 years. The only thing I don't really understand about this, is how does she know how much tissue to take out? Does she just remove the "lobe" that the LCIS/ALH are in? I'm definitely confused on that part and will have to discuss it further with her prior to surgery.

Right now, I'm kind of more worried about the Tamoxifen. I haven't heard really great things about it side-effects wise. The surgeon discussed it with me, saying it will indeed cause terrible hot flashes, irregular bleeding, sometimes lots of women get endometrial polyps requiring surgery, and there's a chance of it causing endometrial cancer. LOVELY. Just sounds like a party to me. Seeing that I am one of those people who seem to get ALL side effects listed for a drug, that definitely concerns me. Several years ago, I was plagued by severe panic attacks, and one of the worst parts of that for me, was these head to toe hot flashes I would get signaling the beginning of a panic attack. So years later, I'm still terribly paranoid about getting too hot. So hot flashes don't sound great to me. Neither do the polyps.

I am already in peri-menopause, and already have irregular periods. I'll have one, then go 90 days without one, then have 2 within one month, then 60 days without, etc. etc. I don't relish the idea of that experience getting any worse.

Has anyone ever heard of radiation implants? A woman I used to work with got radiation implants, I believe, instead of Tamoxifen. I want to ask the oncologist if this is an option in my case. Even though I think it'd be really weird to walk around with radiation in your boobs, I think that's somehow better than bleeding all the time, and getting hot flashes and endometrial polyps. Let me know if anyone has radiation implants or knows someone who does.

Thanks,

K

Stonebrook108 · August 2009

Kdavis

I sent you a private message

Ann

OG56 · August 2009

Leaf go to the Pleomorphic thread, and at the bottom of page 4 I did a better job of referencing.

nash · August 2009

K--radiation doesn't have an effect on LCIS, unfortunately.

The thing with Tamoxifen is, it's easy to stop it the side effects are too bad. You can also try to manage the side effects by taking the pill at right before bed, or splitting the pill and taking the dose twice a day. And some women don't have many side effects at all. As far as hot flashes go, Tamoxifen actually makes mine go away. My ovaries had shut down from chemo, and the Tamoxifen stimulates them enough that I produce enough estrogen not to hot flash. (My period had stopped on chemo and came back on Tamoxifen. I'm premenopausal).

There's a thread over on the Hormonal Therapy board called Bottle 'O Tamoxifen. There's a lot of info on it.

I can't help on the lumpectomy issue b/c my main issue was my invasive cancer. They left my pleomorphic LCIS in there after my lumpectomy for pleomorphic ILC. But I'm sure one of the LCIS girl will be along soon to help on the surgery question.

And yes, your OB/GYN needs a good smack up side the head for scaring you needlessly. Honestly, it's kind of sad when lay people know more than the docs! Undecided

leaf · August 2009

Well, I don't know for sure how they know how much to take out. But when I got my 2nd biopsy, inches away from my excision site (externally) and it said something like fibrosis, I asked my breast surgeon what this meant. I actually got her to respond for 5 seconds or less on the phone.

She said she could not remember what she did on the excision (I didn't expect her to remember of course, but I thought she might look at her surgical notes- silly of me to assume that, especially since she signed off on the biopsy.) She implied that she would have looked for any pulling when she did the excision. I assume that is how ILC looks (or often looks) to the naked eye.

She didn't remove that much tissue, but she must have 're-arranged' a lot of tissue. My 'dent', which filled in virtually completely over time, was maybe a thimblefull, over the area of several inches. (I wear a B cup.) The major institution said I had 'too much scar tissue' to have MRIs, even a baseline MRI.

I have something similar to PTSD, am on immediate release niacin (which causes flushing) and am on tamoxifen. I have had some warm flashes, but since I was peri-menopausal, its hard to say if those would have occured without tamoxifen. I have had endometrial polyps removed, 3 times in all, but they were all benign, and I grew 1 set of endometrial polyps BEFORE I started tamoxifen. I guess I'm just a polyp former. I am now officially postmenopausal, so if I have more vaginal bleeding, I may need another RotoRooter job. The gyn offered endometrial ablation, but I declined that. I'd prefer hysterectomy to ablation, but was not offered hysterectomy.

Anonymous · August 2009

kdavis-----I'm not sure just how much tissue they remove during the surgical excision, but my incision was pretty small (inch and a half maybe), faded nicely over time and it's hard to tell where it was even done. The clip they left in after the stereotactic biopsy directs them right to the area in question. The sample size probably depends on the surgeon and what he sees on the mammo. I was diagnosed with LCIS 6 years ago and took tamoxifen for 5 years. ( I take Evista for further preventative measures now that I'm post menopausal). For me, the SEs were really pretty minor overall----irregular periods (just got used to wearing minipads just in case), mild hot flashes which were annoying but certainly manageable, and some trouble sleeping (mainly due to the hot flashes). The risk of serious SEs from tamox are reportedly very low, less than 1%--I was willing to take that low risk versus my high risk of invasive bc in the future. (I also have family history of ILC) But it remains a very personal decision. Talk to your oncologist about all your individual risks and benefits before deciding. i continue to do high risk surviellance of alternating mammos with MRIs every 6 months and breast exams on the opposite 6 months.

Anne

Kimber · September 2009

Hello Ladies,

It has been a while since I have been on. I read this thread and wanted to respond. If LCIS is not cancer (and I totally understand all the terminology) then why does my diagnosis at my surgeon's ofc, my oncologist's ofc and my gyn all say "breast cancer"? Why, when I call for my 6 mos mammo and alternating MRI must I tell them I've had breast cancer? Why do I have a huge "shark bite" out of the left side of my breast? Why am I on tamoxifen? Why do I have all this anxiety? Why are some women encouraged to have both breasts removed???

I get the whole thing about semantics....but let's call a spade a spade. LCIS is a lobular abnormal cell change that has not left it's little place (it hasn't left the basement parking lot). How many people have precancerous cells removed from their faces, their noses, their ears - and have to be watched carefully. Body tissue, breast tissue...if it is changing it must be biopsied and it must be removed. Read these boards...read how many women watched and waited.

I am certainly not trying to scare anyone or make a mountain out of a molehill, but I am sick and tired of having to explain why I am on tamoxifen and why I am at one dr or another every three months when I supposedly do not have cancer, yet with a strong family history and many other risk factors, I probably will get the "real deal", instead of a stage 0, precancerous "risk". Apparently (according to my husband's family)...unless I lose my hair I do not have cancer. That is what this is really all about. No chemo, no cancer. This is really bothering me and I am sorry for venting. Thank you for listening.

nash · September 2009

Kimber, I'd be really interested, too, why your docs all consider you to have bc when the literature say otherwise. The next time you're in for a checkup, can you ask your onc about this? I'm always interested in what other docs have to say. What LCIS is, especially PLCIS, is a major issue for me, since they removed my invasive PILC, but not my PLCIS.

Thanks!

Anonymous · September 2009

Kimber-----it's OK to vent, this is the place to do it! All of us with LCIS can personally relate to what you wrote; I'm sure we've all felt the same way at one time or another-----I know I have. It's a very strange place to be in----"cancer limbo"---a situation that technically IS cancerous (my LCIS was actually referred to as malignant on my pathology report; all my docs emphatically say I do have bc, and all my reports do as well), but still not a "real" cancer to the average person because it doesn't involve the typical things such as chemo, radiation, hair loss, etc.... While we're certainly grateful not to have to go thru those things, we have our own set of special challenges with LCIS----living with high risk and all that entails is definitely not easy. After dealing with LCIS for 6 years, it doesn't bother me so much anymore what they call it (it did more so in the beginning, as I felt it minimized the seriousness of the situation to call it "just a marker for higher risk"); as long as they treat it appropriately.

Anne

nash · September 2009

I'm going to stay off of the LCIS board from now on, and stick to the ILC board.

cleomoon · September 2009

6 month MRI and Diagnostic next week and the anxiety has hit big time again. I hate being in limbo about this and constantly anxious. Choices are still wait and watch or PBM for me since I am not choosing to take tamoxifen. Well the wait and see is so interfering with the quality of my life, but I am so sad at the thought of PBM.

Just needed to vent and get some support.

leaf · September 2009

Hi cleomoon! There are so many unknowns in LCIS. There are lots of unknowns in many other life situations too. There isn't an obvious answer.

For me, its become easier the farther I get from diagnosis. (I know many say the risk for LCIS doesn't go down.) Maybe the frightened part of me gets more reassurance the more I get clear exams. After all, the MAJORITY of LCIS women will NEVER get anything worse.

cleomoon · September 2009

Thank you leaf. Who knows maybe I will be pleasantly blessed with all clear scans this time around.

Kimber · September 2009

cleomoon,

I hear you, sister. I am due for my MRI in about 6 wks and it is starting to rule my thoughts....the last two Novembers were biopsies and surgery for me. This watch and wait thing is hard. Good luck to you next week and keep us posted!

Stonebrook108 · September 2009

Kimber,

I found out last Nov. that I had LCIS. Looked at all my options and how I was feeling about being tested every 6 mons. and decided to have a PBM with direct implants and be done with it.

Now 8 months later I'm still so glad I did it. The BM wasn't as bad as I thought it would be. It was doable. I remember waking up in the recovery room and thinking it's over and I don't have to worry about maybe getting BC. I have peace of mind now.

I know how your feeling and I will keep you in my prayers for good test results in Nov.

Be well,

Ann

jenniferv · September 2009

Anne - You are 6 years out from dx of LCIS - what meds are you on now? I have my 5th year anniversary next month and in Feb the Onc wants to take me off Aromasin - not sure I like that idea but that is the way it is - I am trying to find out what else is available when you are post menopausal and . 5 years -

Jv

Anonymous · September 2009

jennifer---I'm assuming you had invasive bc along with the LCIS since you took an AI? (generally AIs are not prescribed for LCIS). Tamoxifen is used with pre and post menopausal LCIS; Evista only for post menopausal LCIS use. Having had invasive bc, I'm not sure what they would put you on after 5 years of aromasin.]

Anne

Just diagnosed

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