Breast Reduction lead to dx of LCIS & ALH

I'm so sorry for your stress.  LCIS is a concern but it is also not something that you must act on immediately.  Two members here come to mind- awb and leaf- who have helpful thoughts and information about LCIS.  They will undoubtedly come along sometime soon.  Do you know if your LCIS was called classic or did it have some other description? The more detailed info your path report gives the better able you'll be to make some decisions.  Hold tight.  I'll check back in with you later today.

Kelly

You may want to ask your clinician to verify (presumably with the pathologist) that it is classical and not pleomorphic.  (I can't remember any patient being able to directly talk to the pathologist that evaluates their slides.) 

Almost EVERYTHING concerning LCIS is controversial (including the name LCIS.)

Since LCIS is normally not detected by clinical exam, mammogram, ultrasound, or reliably by MRI, its impossible to know how many foci of LCIS one has except by biopsy or mastectomy. This means that even though I have only had 1 spot of LCIS in 1 core biopsy, I probably have more in both my left and right breasts.

Some women choose to get their slides re-read by a major institution (if you are not going to a major institution already.)  

I assume that you have a weak family history (in other words no first degree relatives with breast cancer/ovarian cancer for females (that's a mother, father, sib, son, daughter) and usually multiple second degree relatives on the same side of the family with breast/ovarian cancer, you are probably at low risk for having BRCA.  Premenopausal breast cancer may put you at higher risk for BRCA.  Here are the specific guidelines from the USPTF. http://www.uspreventiveservicestaskforce.org/uspstf05/brcagen/brcagenrs.htm#clinical

Family history may play a role in your decision.

Since classical LCIS is normally multifocal and usually bilateral, finding it in different spots in your breast does not put you at higher risk.  They think that most spots of LCIS never  progress to breast cancer in one's lifetime. Of those women who do get breast cancer after a diagnosis of LCIS, most get breast cancer in areas that previously looked normal.   They now think that a small number  (and no one will define small) of LCIS spots themselves may eventually become breast cancer.  

Of the women who are initially diagnosed with LCIS and go on to get invasive, most of them get IDC, not ILC.  However, the incidence of ILC is greater than that in the general population.  Much of the time LCIS might produce 'risk at a distance' : LCIS puts all of both breasts at higher risk.  We don't know how it does this.  That's why, unlike DCIS, if they treat LCIS, they normally do it bilaterally.

In my 3 breast biopsies, they have found 1 spot of LCIS, 2 of ALH, and one of ductal hyperplasia. I have a weak family history with 2 aunts and 1 paternal grandmother who only had sons- having postmenopausal breast cancer (opposite sides of the family.) My genetics counselor said I had about a 40% lifetime risk of breast cancer; my oncologist said I had about 30% (both these figures are without antihormonals or mastectomies of course.)  Another consult said my risk was between 10 and 60%. (That's a pretty wide range.)

Unless someone has BRCA, we actually know very little about predicting an individual's breast cancer risk: these 30 or 40%numbers are actually quite uncertain for an individual.  While we are quite uncertain about the future risk of any particular person, we know with more certainty that in a GROUP of (classical) LCIS women, about 30 or 40% of them will probably get breast cancer in their lifetime.  In other words, they have a very hard time knowing which particular individuals in the LCIS pool will get breast cancer (unless perhaps they have a strong family history.)

I was very angry at my breast surgeon for many reasons: one of which her initial statement to me after my LCIS core biopsy, before knowing about my family history was "If you want prophylactic bilateral mastectomies, I will fall over in a chair."   After my excision showed nothing worse than LCIS, she said she was not interested in doing any additional breast surgery on me.  I would have liked to been offered the *option* of mastectomies, even if I would have discarded it.  (I have multiple other both physical and emotional considerations since then.)  My initial reaction was to have bilateral prophylactic mastectomies.  I do not know what my course would have been had I been offered that choice.

I would advise that as you look at *ALL* of your decisions, that you look at all the risks and benefits of each.  I am not pushing you for one decision or another.  It is a very private, individual choice.

kelly--just got a call from onc's RN--onc not in office until tomorrow, but nurse said "I can't tell you results officially, but you can sleep well tonight"! She will call me tomorrow after the doctor reviews the report, but said things look very good!

jtsig--please feel free to PM me if you'd like to talk--I've been dealing with this a long time!

Anne

Congrats, Anne!

jtslg - I'm one that opted for PBM for ALH.  At the Huntsman Cancer Center the genetic counselor took all my information (family history, my history) and determined I had a 40% chance of getting breast cancer at some point.  My surgeon assured me that if I did get it they would catch it early, since I would be monitored closely.  I was just tired of it all, been having mammos, biopsies since age 30.  When the oncologist wanted me to take Tamoxifen for 5 years I decided for the PBM, my risk drops to less than 5%.  No side effects from Tamoxifen, no mammograms, no constant worrying every year over biopsies, just a feeling of peace.  I had no complications with surgery, took pain pills for three days, then tylenol.  It's been almost a year - feel great!!  Good luck to you!!

jtslg- I did have a PBM recently for pleomorphic LCIS.  I think there are many people living peacefully with LCIS and many living peacefully having had a PBM.  One thing that really helped me was seeing a medical social worker (most cancer centers have them).  Though I don't have an ill child and can't know what that's like, I was reluctant to take the time to see this social worker because logistics with childcare and kid chauffering, etc.  But I did do it (because my husbad really wanted me to) and I'm so glad that I did.  She really heard me out and helped me sort through my thoughts and feelings.  Right now at 8 weeks out I can say that I'm glad that I did have the surgery as I am starting to feel a sense of relief, though the loss of my breasts is real and a much bigger sacrifice than I believed it would be.  I'm happy to talk with you as much as you need and want to about it all.

All the best to you,

Kelly

Doreenanne - Felt the same as you - didn't want to take Tamoxifen and be scared every time for MRIs.  The surgery isn't bad - I wish you good luck and peace of mind.  Hugs,  Valerie

Doreenanne, Which breast surgeon did you see at NYU? I'm being followed there for ALH and LCIS also, by Dr. Julia Smith and Dr. Amber Guth.Love them both!!

I had the same surgery as Valerie but I'm still in the TE stage.  Have done the fills and am awaiting exchange to the actual implant.  My scars are in the breast fold and barely visible.  I'm now two months out of mastectomy/TE surgery and though I never felt really terrible, I'm only now feeling like myself, especially energy wise and getting used to the new me.  If your pathology report doesn't tell you what kind of LCIS it is, it's worth getting a second opinion on the path report.  Pleomorphic LCIS basically means that the abnormal cells are not uniform in shape and size and may be less stable so it's usually recommended that it's removed when found. 

jtslg: I felt good by the 3 or 4th day after reduction.  I felt like I didnt even have surgery. I was itchy also, I guess because its healing,  I'm nervous about the PBM surgery.  I just want to put this all behind me,  The past 6 months have been so draining for me. I'm  just getting through the day doing what needs to be done and thats it.  I am doing a little bit better. I guess because the decision has been made about doing the surgery.  I have been having mamo and sono since i'm 30 because i am so extremely dense, I've been told by the facility that did mamo, that they never seen such dense breasts.  While I was pregnant with my 1st child, my breast got so large and remained that way afterwards. So finally after 11 yrs. feeling uncomfortable with my large breasts, i finally did the reduction.  I thought this is great I did it and now to find out about the ALH and LCIS, it was just a nightmare for me.  Anyway, I know for me this is the right thing to do, between the extremely dense breast, cysts, ALH, LCIS, I dont want to worry anymore.  I just want to be happy again.  Sometimes with PBM they can do the skin sparing.  They remove the breast tissue while saving the skin of the breast.  The PS said he will try to do the skin sparing, but because of the reduction, he may not be able to. He will have to see during the surgery.  I am 43 years old also
Diagnosis: None

vmudrow:  I read that you had the skin sparing and the TE.  I wanted to ask you so I understand everything. I thought when you have the skin sparing that the PS then puts in the implant at that time and not the TE.  I thought they do the TE if they dont do the skin sparing.

Doreenanne

It's been 2.5 years now that I have ALH and LCIS.Dr Guth has never suggested or even hinted that I should have a mastectomy and actually I'm pretty content with that.I do the close monitoring and should anything other than LCIS show up that's when I 'll most likely decide.With this diagnosis I may never go on to anything else and that's what I'm banking on.In the past 7 years I've had two hip replacements and a shoulder replacement, another major surgery is not something that I want to deal with now especially since it's not urgent at this time.

Good luck to you on whichever way you go.