Topic: moving too quickly!

I'm sorry you're going through this.

First, I'm not certain from your post, but was the biopsy that showed LCIS excised? I think most breast surgeons now advise that the area around a biopsy that shows LCIS should be excised to make sure there is not something worse going on. In studies, about 80-90% show nothing worse than LCIS, but its good to be sure.

It sounds like you have a strong history of bc/ovarian cancer. I would strongly consider getting genetics counseling (eventually) from a board certified genetics counselor (usually found at major institutions.) They would be counseling you whether or not you choose to get genetic testing, but not push you in one way or another. Most oncologists do not specialize in genetics. I got my referral from the breast surgeon after my excision. For more information, you may want to visit the FORCE website. http://www.facingourrisk.org/

I had genetic counseling, but it ended up I have a rather weak family history (all of the bc in my family was postmenopausal), so I opted not to be genetically tested.

It took me about 5 months to get my first appointment with a medical oncologist after my excision, as I was interested in tamoxifen.

Every person is different with tamoxifen adverse effects. Some have a terrible time, and some have no adverse effects at all. I have had mild hot flashes, and increased irregular menstrual bleeding. (I had irregular periods before this.) My onc says he offers tamoxifen to all of his LCIS patients, but some people question if the risk is worth the benefit. It is a very individual decision that no one can make for you.

There is controversy about just about every aspect of LCIS (without anything worse.) Its unusual. In my age group (mid 50s), one paper estimated the incidence as about 1:10,000. But they don't know because they don't know how many women are running around with it and don't know they have LCIS. (Its usually not detectable except from biopsy, and not everyone has a breast biopsy. Its usually an incidental finding.) From the name, the classification, risk, treatment - its all controversial. The reason why I think genetic counseling is important in your case is that most everyone agrees that *if* you are BRCA positive, the risk of bc from BRCA is greater than if you have LCIS alone. You may or may want to make different treatment decisions if you are BRCA positive.

I am sure others will be along shortly with posts.

Leaf (LCIS on biopsy for microcalcs 12-05, LCIS with features of ALH on excision 1-06 (reread as LCIS + ALH), started tamoxifen 7-06, 2 negative biopsies 2-07.)

Dear mtbmom,
It sounds to me like you are doing all the right things. Letting one referral lead to another, gathering information, so you can make your best decision regarding your health. Keep moving forward. The answers to your treatment decisions will ultimately start to come together for you.This is a very, very hard period for any of us and you must be as kind to yourself as you can, as you travel down this road.

Wishing you strength and courage.
femme

mbtmom---I'm sorry you've been given this diagnosis, but I'm glad you've found your way here. Do you have an oncologist yet? They can help you figure out your overall lifetime risk for bc and your risks and benefits from taking a preventative medication like tamoxifen. I was diagnosed with LCIS about 4 and a half years ago, had lumpectomy, take tamoxifen, and  am closely monitored by mammos alternating with MRIs every 6 months, as well as frequent breast exams. For the most part, I do OK living with the high risk (also have family history which further increases my risk), except for some apprehension at test time--MRI and mammo coming up in 2 weeks.  I've decided not  to obsess about it----  "waiting for the other shoe to drop"  and to try not to worry about things I can't control. Feel free to PM me if you'd like.

Anne 

The NSABP study found that tamoxifen or raloxifene reduced the risk of breast cancer by about 50%, but there are not many details AT ALL about the group of LCIS women (which were about 100 or 200 women, if I recall correctly.) http://www.breastcancer.org/treatment/hormonal/new_research/20051216.jsp

This describes the Port et al study, which I think is one of the largest studies that I've found *that gives detailed data on each person who got breast cancer.* It is the ONLY study that was cited by the American Cancer Society paper about MRI *screening* (not diagnosis.) The springer etc. link listed at the bottom may not work anymore.

To summarize:
This study looked at 125 atypical patients and 262 LCIS patients over 6 years at Sloan Kettering. The patients that were followed by MRI (about half of the group) were compared to those that did not. There were a total of 14 patients (total) that got invasive breast cancer or DCIS. 7 of these were in the group that was followed by MRI, and an additional 7 were from the group that was NOT followed by MRI. A total of 3 out of the 14 patients who got breast cancer/DCIS were taking tamoxifen or raloxifene. These numbers are so small, I doubt if they are significant.

Clearly, in this study, LCIS women had a higher incidence of bc than AH patients. 11 out of 14 of the cancers were found in LCIS patients. (Note there were more LCIS patients than AH patients.) Two of the 14 women had a known first degree relative with bc. In one additional patient, the family history was unknown. The remaining 11 patients did NOT have a first degree relative with bc.

To me, this data does *NOT* strongly support the idea that family history confers a much higher risk versus a negative family history overall (MRI screened + non-MRI screened.) 2/14=14.2%, which is approximately the incidence of genetically determined breast cancer in the wider population.

There were 7 non-MRI screened patients in whom they found breast cancer. 5 of these women had LCIS and 2 had atypia. Their age ranged from 50 to 88. 3 out of these 7 patients took tamoxifen or raloxifene. The stage ranged from I to II. None had a known first degree family member with bc. (6 had no first degree family history, and in one the family history was unknown.)

Of the 7 MRI screened patients who developed cancer, age range 43-57, none used tamoxifen. One of these 7 had atypia. In this patient, the cancer was discovered via a palpable mass after recent negative MRI and mammo. The other 6 had LCIS. One of these 6 LCIS patients, who had a first degree relative with breast cancer, was found to have cancer incidentally on risk-reducing mastectomy. 5 of the 7 patients with cancer had NO first degree relative with breast cancer. The stage ranged from 0-1.

This group may be among the larger studied groups of more homogeneous AH and LCIS patients. I say this because all these patients came from one institution, so likely had more consistent definitions of LCIS and AH (unlike the Li et al paper http://www.ncbi.nlm.nih.gov/sites/entrez...Pubmed_RVDocSum

Unfortunately tables do not show up properly, but you can match the age/
menopausal status/family history of the women who developed cancer.

TABLE 2. Profiles of patients who developed cancer
(A) Profile of non-MRI-screened patients who developed cancer
Patient Prev bx Age
Menopausal
status
Family history
(first-degree relative
with breast cancer)
Tamoxifen/
raloxifene use Tumor size (cm)
Lymph node
status BIRADS (mammo)
1 Atypia 56 Post 0 No 4.0 Positive 5
2 LCIS 62 Post 0 Yes 0.4 Negative 4
3 LCIS 59 Post 0 Yes 1.0 Positive 4
4 LCIS 88 Post Unknown No 1.3 Negative 4
5 Atypia 61 Post 0 No 0.7 Negative Negative/palpable mass
6** LCIS 55 Peri 0 Yes 1.2 (lt)
DCIS (rt)
Negative Negative/palpable mass
(lt) 3 (rt)
7** LCIS 50 Peri 0 No 0.7 Negative 4
(B) Profile of MRI-screened patients who developed cancer
Patient Prev bx Age
Menopausal
status
Family history
(first-degree
relative with
breast cancer)
Tamoxifen/
raloxifene use
Tumor
size (cm)
Lymph node
status
BIRADS
(mammo)
BIRADS
(MRI)
1 LCIS 43 Pre 0 No 0.9 Negative Negative 4
2 LCIS 43 Pre 0 No 0.2 Negative Negative 4
3 LCIS 51 Peri 0 No 0.7 (lt)
0.65 (rt)
Negative Negative
(bilateral)
4 (bilateral)
4 LCIS 55 Post 1 No DCIS Not done Negative 4
5 LCIS 39 Pre 0 No DCIS Not done Negative 4
6* LCIS 49 Pre 1 No 0.35 Negative Negative 4 (bilateral)
7** Atypia 57 Post 0 No 2.5 Positive Negative Negative
http://www.springerlink.com/content/p755k56248g052n7/fulltext.pdf

If you want to see the entire conversation, this is the link. http://community.breastcancer.org/topic/47/conversation/653988?page=1#idx_25

The overall incidence of breast cancer in the Port study in LCIS women was about 1% per year.

Multifocal means they found more than one spot of LCIS. This is very common with LCIS. Often they find LCIS in both breasts. They know this (I assume) because before, maybe the 1990s, the standard of care for LCIS women was to have bilateral mastectomies, and of course they looked at the mastectomy specimens. They didn't know the natural history of LCIS (not that they know a whole lot now.)

*******

But ooops - about the multifocal bit - is this multifocal for DCIS or multifocal for LCIS? If its multifocal for LCIS they probably won't be removing it. If its multifocal for DCIS, then they are going to be a whole lot more interested in getting clean margins.

*********

The following only holds if you have LCIS and nothing worse. (In other words if you DON'T have DCIS or invasive.)

From what I've heard, they generally don't do clean margins for LCIS (and nothing worse) for 2 reasons: a) Its often multifocal, and it usually doesn't show up on imaging, so the only way they would know they had it all would be to get mastectomies. Its also often bilateral.

b) Even if you have one spot of LCIS (and nothing worse) in one breast, it puts not only the entire breast, but BOTH breasts at risk. The risk is probably not equal between the 2 breasts. The breast that has LCIS may have slightly more chance to get bc than the ipsilateral (other) breast. That's one reason why more scientists are opining on a *small* (unknown) number of patients, LCIS may *in some small number of cases* be a NONOBLIGATE precursor for cancer, and not just a marker for higher risk. Non obligate means that these cells are NOT predestined to become cancer, they could stay benign and stop growing, but they are chugging down that cancer pathway.

********

My core biopsy (for LCIS) was strongly ER+ and PR-. Golly knows what that means. I don't have DCIS (that I know of.)

If you got DCIS too, then if you get standard care, you will definitely get treatment.

I certainly don't know about people who have DCIS AND LCIS.

If you had LCIS alone, and nothing worse (DCIS is classified as worse than LCIS), then no treatment and just close screening would be an OPTION. For the 'standard' options, you may want to read this. http://www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page6

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ASSUMING you have BOTH LCIS AND DCIS: One question (which I do not know) is whether or not you will be a candidate for hormone therapy.

Another question is: do I need an MRI for my 'other' breast?

Another question I would have is if the LCIS puts my 'other' breast at risk, and if so how much. Does my 'other' breast need radiation?

There have been some studies that opine that women with invasive breast cancer and LCIS are candidates for breast conserving therapy (ie lumpectomy and rads) if that is what the patient chooses. I'm not sure, but I think maybe this is controversial????

Maybe you have a unique situation? I haven't read anything about DCIS with LCIS, but I haven't looked for any info either. I have LCIS with pagetoid spread into the ducts (according to my pathology report.) I once saw a poster who said she had DCIS with pagetoid spread into the lobules. So I guess it can go both ways.

Get a big piece of paper with your questions. You deserve answers to all of them. If they don't know they should tell you that. (That's what I would want anyways.)

Leaf- thanks again, your knowledge is so helpful.  I have started a list, and will add your ? to it.  As far as I know right now, it is only LCIS, but I have noticed the lymph nodes under my arm on that breast have become swollen and sore.  The biopsy was taken from the top, so I'm not sure if it's just post surgery, or if there is something else going on there. 

Lisa9753- and thank you.  I have been really worried about what the tamoxifen would do to my cell counts, and just how it would make me feel.  I have run for 37 years, and I need to mentally, I'm not sure how I'd handle this without being able to physically burn off steam. 

I am 47, and from what I've read, you are kept on Tamoxifen for 5 yrs.  What happens after that?  Do you just wait around hoping nothing ever comes back?  Or do you go to a different drug?  Are you on meds the rest of your life? My breast dr. says I'm considered very high risk because of family history, I started my period at 10, and I have very dense breasts.  I almost feel "damned if I do or damned if I don't" when it comes to treatment options.  I hate the thought of going through drug therapy for 5 years, and then 15 yrs down the road having and invasive bc! I'm sorry to sound so whiny!  There are so many women here going through much worse, I'm just not sure what the right decision is. 

Thanks again for everyone's support, and best wishes to everyone!

mbtmom---with your family history of bc and oc, at some point you may want to consider genetic counseling and testing. It may help you in making some of the decisions you're facing (I haven't done it as yet, but am considering it with the LCIS and family history).

 I had a lot of the same concerns as you when I was first diagnosed with LCIS, about 4 and a half years ago, at age 46.  At first, my oncologist thought maybe he'd put me on arimidex after tamox, but then back-pedaled on that, saying the AIs haven't been tested long enough with LCIS.  Last time I saw him, he said I might not be on anything after finishing tamox, although with the new studies out on Evista, my pcp said that was a possibility after tamox.  I don't relish the idea of another 5-year med (and the possibility of new SEs), but at least it would help prevent osteoporosis (another concern as I have early osteopenia).  Supposedly, Tamoxifen continues to "work" for up to as much as 10-15 years after stopping; I don't know in what  percentage of the people taking it, but my mom took it and is now a survivor of over 21 years without a recurrence, so that says a lot to me and gives me hope. Please feel free to PM me if you/d like to talk.

Kimber- don't apologize for being cranky-I think we've earned a little cranky time!  I saw the onco yesterday.  He seemed very nice, he listened to my concerns, and answered my ?s.  However, the ladies here had already given me the same answers.  He wouldn't say how long the tamoxifen will protect me- he said the studies aren't there to give any evidence, that "hopefully by the time I'm done in 5 yrs, there will be other alternatives".  I'm afraid I'm one of those people who lives by clear objectives- tell me to prepare for a marathon, and I can set up a schedule to reach that goal.  The whole idea that no one can give any set answers or definitions is killing me.  I felt like asking for my check back when I left the Dr- I'd rather donate to the ladies here!  At least we are all going through the same thing, and not on the outside looking in!

The waiting stinks as well.  This weekend I started with a discharge from the breast that I had surgery on, and the lymph nodes on that side have remained enlarged (I think they have actually gotten bigger), and he told me we need "to watch it" and to notify him if it changes at all.   At least give me some idea of what you think it could be!!!!

Then as a topper, my husband is upset with me because I don't want to do the tamoxifen.  I seriously do not do well with drugs.  For years I had gyn's try to put me on the pill for irregular periods and ovarian cysts, and I would get severe migraines and nausea everytime.  My rheumatologist put me on plaquinil for my "undetermined autoimmune disease", and my blood pressure would drop causing me to pass out (once while driving), and I walked around dizzy and sick all the time.  My ortho just tried pain therapy on me for a torn hamstring that has caused chronic sciatic inflammation, and I wound up with migraines and feeling severely depressed and disoriented.  The thoughts of being on tamoxifen for the next 5 years, especially since they can't guarantee anything, makes me angry.  If I can't continue to be active and live life the way I enjoy it, why live it at all? I think I'm really just at a bad point right now, and haven't come to grips with how to handle this.

I'm really sorry you've had to deal with all of this too, especially with it taking 4 mos to get answers.  That too sucks!  If it makes you feel any better, my onco says I am now a cancer patient (lovely!), although no one can say if it will become invasive or where or when or if.........

Sorry if I'm a wet rag with this post- I have come to feel that this is the one place where you can say what you're feeling, and no one judges, just supports and understands!  hugs to everyone! Denise

Have you had any problems?  Has your dr. given any idea about what to do after?

by the way, the reason for the confusion about LCIS is because most doctors haven't treated anyone with it, only DCIS, i get the strong feeling we are the experiments...

of course i had to find this out on my on over the last 4 years...

yeah, except they don't tell u that, they just say the treatment is "up to you"....great, huh?

amyway, after some reasearch, my family doctor said to DEFINATLY take the tamoxifen....so i do, and like i said, it's better than cancer....

by the way, it's nice to have someone to talk to about this, since NOBODY know what it is....

thanks : )

daisy

It is very nice to have someone who is in the same situation to share with!  You ladies have certainly helped me!!!!  I really am having a hard time dealing with the lack of knowledge from the medical community on this, and fear the big pharms are just pushing the docs to tell us to take drugs, with just their profits and not our health in mind!

Femme- I am glad you said that.  My doc did say (without me asking) that if I was his sister, tamoxifen was the course he would recommend.  He was very upfront with everything, and with the help from this forum, I went loaded with ?s, some I had answers already for just to compare his answer, and some that no one seems to be able to answer, like long term solutions and effects.

I went and picked up the med today.  Once I finish glaring at the bottle, I will try to swallow one, and convince myself this is really the best choice!  I just hope I don't get donkey ears or some such extremely rare side effects!

Thanks again for all the support- hugs to all- Denise   PS- I keep you posted on the ears

Hi, Denise, I remember how hard it was for me to make the tamoxifen decision. My doctor didn't push me; in fact, she gave me the option at one appointment and said that she didn't want me to decide anything until the next appointment, about 6 weeks later. I ultimately did decide to take it, but the side effects ended up being too much for me and so after 19 months I took a break. Six months after that, I tried again, for 5 more months, and then went off for good. I didn't have hot flashes but did have lots of fluid retention. It wasn't serious, medically speaking, but was a quality-of-life issue for me. I am glad that I tried it, and I probably got some benefit from taking it, even though I didn't make it the whole 5 years.

I am not trying to scare you with my story, only to reassure you that taking tamoxifen is not an all-or-nothing thing. You can try it, see how it works for you, and then decide whether to continue it or not. If you are going to have hot flashes or other mild side effects, they'll probably show up in the first few months--mine did. And there's nothing wrong with discontinuing the medication if you can't tolerate it. As my oncologist said to me, "We need better drugs." It sounds like you have a good doctor too.

I understand what you are saying about Big Pharma. In fact, I heard part of a radio program on NPR earlier today about that very issue. Regarding tamoxifen, though, I think it's important to remember that this is not a new drug. It's been around for many years and has been extensively studied. It has been proven in clinical trials to substantially reduce the risk of invasive cancer, so that's why it is offered to us. The rare side effects are just that--rare. It's unlikely you'll have any of those, and I'm sure your doctor will follow you closely, so you'll be able to take care of anything that does pop up.

I'm so sorry that you had to join us here, but as you've found, this is a wonderful group of ladies. It is frustrating that there isn't more known about LCIS, but eventually there may be. If you live near an NCI-designated Comprehensive Cancer Center, you may want to call and see if they have a high-risk breast program. I'm in one, and my doc's PA is of the opinion that all LCIS patients should be. (Easy for her to say.) Anyway, the most up-to-date research is done there, and they can let you know of clinical trials you may qualify for. Just a suggestion, but something you may want to think about.

Good luck to you. Remember, you can always stop the tamoxifen if it isn't for you.

i have the hot flashes and the weight gain from the tamoxifen but i stick it out even though it SUCKS(!) i'll do anything to not get cancer, i've seen close friends go through that, and what i'm going through is nothing compared to that.

-daisy

Denise, that's wonderful. It sounds like your doctor is top-notch, and the imaging center too. It really makes a difference when the techs are compassionate as well as knowledgeable.

I realized after reading through my post that I made a mistake. When I was taking tamoxifen the first time, I took it for 14 months, not 19. Sorry about that! I guess I was thinking about the total time I took it, which was 19 months.

You may be one of the many women who has few or no side effects from tamoxifen. Good for you for trying it! Keep us posted, and best of luck to you.