Just diagnosed with LCIS

Kimber

Just diagnosed with LCIS

Kimber

I just got the call and I am sort of in a fog, but right now my gut is telling me to remove my breasts. I do not want to go on tamoxifen - I went through several cycles of IVF and have had so many hormones and drugs run through me....I was put into menopause several times in my 30's with drugs. My sister had BC at nearly my age and I am so dense and fibrocystic mammograms don't work for me. I do not think I can handle having MRI's all the time and biopsies and on and on. Am I wrong for just wanting them off?



I am just searching for answers right now. Any help is appreciated.

Kimber

Peaches70

You are NOT wrong for feeling this way. Just take some time to think things over and investigate your options, so that when you make your decision, you will be content. Everyone is different as to what they can and cannot bear. For some, following a protocol of medication and monitoring works. For others (me among them) the procedures and the uncertainty put too much stress (physical and emotional) on them to be healthy. You have to do what is right for you. I know that sounds very trite, but it really is the bottom line. You do not have to make a decision at this very moment. You are still in shock. Give yourself time to breathe and think.

Anne

Anonymous

Kimber-----I understand how you feel, really I do (LCIS diagnosed 4 years ago--take tamox and am closely monitored with mammos alternating every 6 months with MRIs).  But please do NOT rush into any decisions--there is no hurry for LCIS, you have plenty of time to research and get 2nd opinions if you choose.  There is no right or wrong answer, whatever you ultimately choose, will be the right decision for YOU.  There is no easy path to take; neither choice  (BPMs or close surveillance and tamox) is pleasant. I once told a women who had decided on BPMs how courageous I thought she was, and she reminded me that my choice took courage too. Do you have an oncologist yet?  I can understand your reluctance to  go on another medication, but many women have very few SEs from tamox, the most common being hot flashes.  You might do very well on it, and you could always go off if you didn't tolerate it. Feel free to PM me anytime if you'd like to talk.  But again, don't rush into anything.. You need to make your decisions out of knowledge, not out of fear.

Anne 

liveit56

I agree...don't rush into a decision so fast.  I am where you are at right now except I have no family history of breast cancer.

I have chose to do the Mammograms and MRI's for now and my doctor put me on Evista and I was reluctant about taking it at first but, I did some reading on here and decided to give it a try, this is what is right for me right now....if I can't tolerate it I will stop taking it.

I am still doing research and trying to learn all I can.

This is so hard and the decision you make is a personal one.

I am on here asking questions myself...I am so glad there is a place to come to and talk to others that are going through the same thing and can give us some real advice and support.

but as Anne said "Make your decisions out of Knowledge, not out of fear" I really like that saying.

You are  in my prayers.

Liveit

leaf

Your choices may be influenced by what your docs/insurance are willing to do, too. I don't have the family history you do, either, but my breast surgeon 'does not want to do any further surgery on me' (i.e. even if I want no reconstruction), and my 'major institution' consult recommended no MRIs because I have so much scar tissue. (Right now I'm on tamoxifen + yearly mammos + biannual clinical exams.) It sounds like there is a great variety in what docs do with LCIS.



If you have choices, there is no right or wrong answer. There is only the best choice for YOU, that only YOU can judge.



I think most breast surgeons insist that women wait several months before they have BPMs so the patient is more sure that is what they want. It is, of course, an irreversible decision. I think studies have shown that most women who want BPMs are happy with their choice if it was from their own desire initially.



There is a LOT of controversy about LCIS. There is hardly any factor that is NOT a controversy about LCIS. There is controversy on what it should be called (LCIS vs lobular neoplasia), whether is should be classified as a cancer or not (most oncologists consider it a benign condition), the risk it imposes for breast cancer (because we don't know how many women have it), and the suitable treatment.


LCIS used to be routinely treated with BPMs, because they didn't know the natural history of the disease. Then, when they started doing lumpectomies for small invasive cancers, most breast surgeons thought it was overkill to do PBMs for LCIS.


LCIS is *usually* not detectable under clinical exam, mammos, ultrasounds, or MRI. It is normally found as an incidental finding after biopsy. So they don't know how many women (AFAIK they haven't found it in men) are walking around with it and don't know it, because most women haven't had a breast biopsy.


***********If you haven't had a surgical excision, then most docs want you to have a surgical excision to make sure there isn't something worse going on. I think this is VERY important. They find something worse maybe 10-20% of the time***************.


Now it appears that under **some** circumstances that LCIS may be a **nonobligate** precursor to bc. This means that (probably a small) portion of cases LCIS **may** be precuror to cancer, but most of the time it isn't.


The number that my oncologist gave me, which corresponds to the recent Port study, is that the risk for breast cancer for LCIS may be about 1% per year. The average age that LCIS is diagnosed is in one's 40s or 50s, so for an average lifespan, this would mean a 30-40% lifetime incidence. This includes DCIS.

I have LCIS and a weak family history, but I have been given lifetime figures as low as 10% (no increased risk), to when you put my numbers in one model, 85%. But models are crummy. I saw one paper that said the prediction of breast cancer, even for the Gail model, which is the standard bc model (which specifically excludes LCIS on the NCI website), is, *for the individual*, 'only slightly better at predicting bc than the toss of the dice.'


Whatever the risk is, the location of LCIS is often bilateral (ie they find LCIS in both breasts) and usually multifocal (there is more than one spot of LCIS.) But this makes little difference, because even if you have 1 spot of LCIS in one breast, it puts both breasts at risk. (Yes, its a weird disease.) That's why they normally recommend whatever they do for LCIS to do it bilaterally. In other words, they normally do NOT recommend unilateral mastectomy. Since lobules are found all over the breast, and you usually cannot see LCIS under imaging, the 'only way' to remove almost all the LCIS for sure is to do mastectomies. I have not seen it recommended that LCIS be excised to the borders in any paper. I think that would be difficult to do without doing a mastectomy. They often find LCIS not *at*, but *adjacent to* the 'lesion of concern'. So they don't know a lot about LCIS.



With your family history, you may want to consider getting genetic counseling from a board certified genetics counselor. These are usually found at major universities. In the Port study, I don't think there was an increased incidence of bc in women with a family history of bc. But the numbers were way too small to reach statistical significance.



As others have said, there is no rush to these decisions. It is a very personal, individual choice.

Kimber

Leaf,

I already had an excision and that is how I was diagnosed. He said the tissue was full of it, and they felt it was probably all over the breast. It showed up on an MRI initially.



I have an appt with a genetic counselor tomorrow and should have those results in a wk or two. That result will tell me whether or not to go ahead with BPM. Having watched my sister go through what she went through, I am ready to do anything preventative that I need to do.

Thanks to all for thoughts and prayers.

Kimber

leaf

Peace of mind is SOOOO important. You need to do what is best for YOU.

Lolita

My radiation oncologist did recommend that my LCIS be excised at the borders.  There is a new study from Beaumont Hospital which indicates that this should be considered. 

Kimber

Just met with surgeon who referred me to an oncologist and I am waiting (always with the waiting) for her scheduler to call me back for appt. He thinks PBM is too radical for me at this point and prefers that I stick with close monitoring. I cannot take tamoxifen, I already have endometriosis..



My path report that came from Mayo reads:

Diagnosis: Lobular carcinoma in-situ, fibroadenoma, columnar cell change and fibrocystic changes characterized by apocrine metaplasia, cystic formation and sclerosing adenosis.



comment: Lobular carcinoma in-situ is present.



Genetic testing appt today if the snow doesn't stop me from getting to the appt. I am more upset today than ever. What do I do? I am not sure I can handle the stress of monitoring, but I guess I will have to. If I test positive for the mutation, then my questions are all answered.

I'm sorry to sound confusing, but I'm confused. It's almost like they want me to wait until it turns into invasive cancer like my mom and sister had so I can go through chemo. All I can do now is wait, I guess....



Any suggestions?

Kimber

liveit56

My doctor feels that PBM is also to radical for me at this point also.

I am doing the close monitoring myself and taking Evista...which I have only been taking for a short while so don't know if I am going to have any SE or not.

I look at it like this....we don't have cancer but a little look into the future and if(and I do say if) it does happen it will be caught early. 

I want to live a normal life and not worry everyday about this or any of my other illness but that is not going to happen so, I am doing the best I can and following what my doctor wants and what I want to do for now. 

We are not safe from cancer no matter what we do.

I had a hysterectomy because of severe bleeding and a family history of uterine cancer...I went ahead ad had it done out of fear and I will never make such an important decision again that way.

The choice you make is a very personal one and you have to do what is best for you even if your doctor and family and friends don't agree.  It is your life and you are the one living it and we have to live with our choices.

Don't be sorry about feeling confused...this is enough to confuse and scare anyone.  

I don't think anyone wants you to have invasive cancer and go through chemo...you are scared and understandably so.

I wish you luck in what ever you decide to do.

These are just my thoughts on all of this and not meant to offend or tell anyone what to do.

You are in my prayers.

leaf

Hi Lolita- do you have a link to the Beaumont hosptial report? I'd be very interested. There is so much that is unknown, and I'd like to learn, and get the facts straight. Thanks so much!

Kimber

Liveit,

Are you post or pre-menopausal? I am pre and I am just not sure I want to take any drugs. How is the Evista going for you? I am wondering about my soy intake. I eat a lot of edamame, drink soy milk and don't eat red meat.... My boobs CONSTANTLY hurt. They have grown in the last year or so and I am miserable most all of the time - it used to be 2 wks before my period, now it is constant, with just about 1-4 days relief right after my period. I'm wondering if I am estrogen dominant and making it worse with the soy.



I just wish I had an answer, that's all.

Don't we all, right??

liveit56

You are so right...and I wish I had the answers for all of us.

 I had a total hysterectomy( no ovaries) in 2001 so that is why I am on the Evista...I only started it a week ago and so far no SE.

I know how you feel about the drugs...me to.

I thought that once I got off the hormones...which I have been worried all these years about taking that I would feel better... now this....I still have all the worries as with the hormones plus hot flashes, mood swings but it is what I have to do for now.

I know in my heart right now that I am doing the right thing and trying very hard to stay positive.

Do you have family, friend support?  I don't know what I would do with out my family but I also don't want them to worry about me unnecessary so, I come on here and talk with a friend of mine that had breast cancer and it helps me so much. 

 I have even thought about looking to see if there is a support group in my area...maybe that is something you can do....just an idea.

This has been really hard and I have read and researched till I am sick so now I am just trying to find a good place...not there quite yet but working on it.

Did you make it to your testing?  How did it go?

This is hard I know but, we can do this....what ever we decide it will be OK...I have to believe that.

Bless you and you are in my thoughts.

Anonymous

Kimber----as far as the soy goes, they don't know for absolute sure, so it's better to be cautious and avoid soy as much as possible with LCIS  and family history of bc. (soy is estrogenic).

Anne 

Kimber

Thanks awb, I will avoid soy! I thought it was good for me! I have been eating edamame like crazy and I eat Luna bars daily which have soy protein in them. I put soy milk on my cereal! Maybe that could explain the fact that my boobs get so huge before my period and have grown a cup size anyway.



liveit 56 - my testing was so easy. She wrote down all my family history and then they took my blood. I will know in a wk or two if I carry the mutation.



I'll keep you posted!

Kimber

LCISgirl

Hi Kimber,

I'll just add my two cents here...I was dx with LCIS in the right breast by stereotactic biopsy, then with excisional biopsy & additional core biopsies.  That would lead anyone to believe (imho) that it was all "in-situ". It was extensive,multi-focal~not just in one spot of breast. I kept asking the surgeon(s)- (I saw 5 before picking one) "how do you know for sure if any invasive portion was missed with the biopsies?" and they replied "Can't know for sure without totally removing all tissue". I am the worry wart and didn't want to watch and wait, multiple biopsies and mammos.  I had bi-lateral mastectomy in December and the pathology came back with a small invasive portion.  I know that it may seem overly aggressive to some, but I just felt so relieved to know that the invasive portion wasn't missed and given a chance to grow further or move to lymph nodes.  Keep asking questions and trust your instincts. You'll know what is right for you.

Kimber

LCIS girl,

Thank you for your information. Did you have reconstruction with your bilateral? This is exactly the question I want an answer to - how do they know there isn't some invasive cancer hiding somewhere else? Everyone I have spoken to in every aspect of the medical community has the utmost respect for this surgeon. I am not sure I can emotionally handle "monitoring".

Thanks for your help.

Kimber

Anonymous

Kimber--the answer to your question is that they don't know with any certainty that there isn't any invasive bc in there along with the areas of LCIS.  Hopefully, if anything invasive were there, it would be detected on mammo/US/MRI/breast exam. The hope of close monitoring would be to find anything at its' earliest stages when it is most easily treated.  (I haven't ever heard that endometriosis is an absolute contraindication for taking tamoxifen.  You may want to check further with your gyn and onc about that). I've been on the tamox over 4 years and I'm doing fine, but as I said before, while the close surveillance is comforting, it is also stressful too.

Anne 

Anne 

Kimber

Anne,

Have you had any side effects from the tamoxifen? Are you pre or post menopausal? Did you have any chemo or radiation? I have heard tamoxifen SE's are worse if you have had prior cancer treatment for some reason. I am concerned about menopausal symptoms and weight gain. I know that sounds crazy, but I am fanatical about that.

Thanks for any info. My sister had a terrible time with tamoxifen after her chemo and radiation.

Anonymous

Kimber----no chemo or radiation for LCIS since it is non-invasive. As far as having worse SEs from tamox if you have had prior cancer treatment---I've never heard that.  My mom took tamox for ILC after having radiation and never had any SEs, and she's done remarkably well--now a 21 year survivor without a recurrence. I was premenopausal when I first started tamox and had very mild SEs--mainly hot flashes and a little insomnia at times. (I have more SEs now, but they are more attributable to my surgical menopause from a complete hysterectomy).  Many women have little to no SEs from tamox.  The way I've always looked at it is that I'd much rather put up with some annoying SEs than develop an invasive bc.

Kitwe

Kimber..I do so remember that foggy feeling when I first got that call.  I had 2 biopsies back in the 70s that were benign and I just figured they would always be benign...ha

I got lots of opinions from medical friends and family and most were pro double mastectomy if I was Ok with it.  I thought I was but started Tamoxifen.  I "WAS" always such an optimist..can't happen to me kind of person.  This scared feeling is very uncomfortable.  I'm not good at expressing it except on this site.  I smile a lot.

You have to do what you feel most comfortable with for YOU.

I hate the weight gain on the Tomox and the hot flashes.  I use Tomox as a scapegoat for everything, especially my memory lapses.

I have no family history of BC and never worried.  During my last exam, my oncologist found a lump on the other breast.  I had an ultrasound done then which confirmed her finding.  I went for an ultrasound guided biopsy a few days later and they couldn't find it.

I made an appointment for a second opinion.

I rambled...I hope it makes you feel better...this site makes me jittery, nervous and comfortable all at the same time.  You get to see many different sides of an issue.  Keep checking it all out.

Kimber

Thanks Mellow,

Question - how do you know if your LCIS is ER+??? Will the oncologist be able to tell me this? The WEIGHT GAIN part scares me - I am a freak about my weight. Again, all I can do is see if I test positive for the gene mutation, then surgery is probably my option. I am not going to be good at the "watch and wait" if I don't. And tamoxifen scares me.....

Anonymous

Kimber--they don't know for sure if LCIS is  ER positive or negative, but the literature seems to feel it is most likely positive in the majority of cases.   They were going to test mine, but then said the tissue sample was too small.  They recommended I take it regardless of the receptor status, as there was nothing else available at the time (I was premenopausal at diagnosis), so it was either tamox or nothing.  I decided to go with the tamox and I've done very well for over 4 years with very minimal SEs.  I may look into taking Evista when I'm done with tamox, for further prevention of an invasive bc.  It is a very personal decision, one which we each have to make for ourselves with the help of our medical team.

Kimber

awb,

Thank you again for your information. If I remember correctly, you never got an invasive cancer, right? But no family history? I'll do what I need to do, but believe it or not, the weight gain thing is a huge issue for me, and I know that sounds absolutely crazy stacked up against an invasive cancer......

Kitwe

Kimber

If I remember correctly, my oncologgist said I was ER+.  I 've had my period since I was 9.  I've taken the pill on and off for 30 some years.  My boobs went from a full B to a full D when I turned 51.  The weight gain is a big deal to me too.  I hate it.  I was always thin and never really had to diet..it's a good thing because I'm not good at it.  I jog and do spin classes + weights.  I was premenopausal (at 55) but have not gotten my period since I started the Tamox in July.

liveit56

My doctor also said I was ER+ and I am on the Evista and so far no problems at all. 

 I had a total hysterectomy in 2001...I was 49

I was on hormones for about 61/2 years and when my doctor got my diagnoses she called and wanted me off the hormones right then and it was horrible at first but now I am handling things pretty good...the hot flashes are not as harsh now and don't last long and I was so afraid that the Evista would cause them to be worse but not  as of yet. 

Awb, you are so right it is a very personal decision and you have to do what is right for you.

Good luck girls...we have to stick together.

liveit

Kimber

Mellow,

That's weird - my boobs have grown too. I wonder if that goes along with the LCIS? Have they gone down since you've been on the tamoxifen? Mine grow a full cup or more again before my period. I haven't gained weight anywhere else on my body except in my boobs, it's weird. So I assuming for you, since no period, no period symptoms? My PMS is awful, not emotionally, physically.



Sorry for all the questions - I am just going crazy until my genetic testing comes back and my appt with oncologist. Never know what each day is going to bring emotionally......

txwomyn

I was diagnost with LCIS Nov 2006 had the lump removed.

My oncologist wanted me to talk the drugs and I refused.

I do not have a family history of cancer. And I did my research and found out that if you exersice 45 min a day you reduce your chances of cancer. I look at the side effect of the drugs and figure I go with exersice it the wright choose for me.

I have a cousin who has cancer in her bones. And the one thing she told me is I HAVE TO DO WHAT IS RIGHT FOR ME. Not what the DR or my family want.

So get a physical exam by aDR every 6 month and mamogram once year.  last mamogram came up clean. And by the way they found me lump during my first ever mamogram and from that they did biopsy and found out it was LCIS. So for people to say the cannot find it with out a biopsy I do not agree the lump was found during a mamogram I did not feel it since it was so close to my chest bone.

Stop smell the roses and do what is right for you!

leaf

Different people respond differently with tamoxifen. Some women have NO side effects, and for others it makes their entire life miserable, and probably most are somewhere inbetween. I didn't have any weight gain. I do sometimes have hot flashes, but I'm at the age most women undergo menopause, so its hard to say what my hot flashes are due to. For me, they're more like warm flashes, usually very tolerable.



We are all different. As txwoman says, we have to do what we think is right for us. And only we can judge how different treatments will be for us.



The vast majority of LCIS is ER+ and E cadherin negative. "All 50 cases of LCIS were E-cadherin-negative. All cases were ERalpha+ and ERbeta+." http://www.ncbi.nlm.nih.gov/pubmed/17543077?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum



There is not a model that can predict your breast cancer risk with LCIS. When you put all my risk factors together in a model with more risk factors, http://www.halls.md/breast/risk.htm , you get >85 per cent. **Note this model was NOT compared to populations.** If you compared it to populations, then you would probably find the lifetime risk is probably not more than, say, 40 per cent or maybe 60 per cent. This is because if you have multiple risk factors, that does NOT NOT NOT mean that you can automatically add your risk factors up to get your total risk. You would have to compare your situation to people who had the same risk factors as you do.



Even if you use the plain Gail model, an editorial said the well-established Gail model is "better than the roll of a dice-but not by much' at predicting breast cancer FOR AN INDIVIDUAL.



Do what is best for YOU. It is your life and your decision.