Dx:LCIS, New mass and scared!

My experience is that each treatment plan is so individual, that you really need the study results to know what surgeries and treatment will be recommended - and there's hardly ever just one obvious path of treatment.  There is so much to consider in a decision of lumpectomy v/s mastectomy that you really can't go there until you know more, it seems.  I am 4 days post full right mastectomy.  I know you want answers now and that you have to wait.  I had to decide between the two - and I chose more surgery/less chemo-radiation, with an eventual reconstruction.  It's such a personal choice.  And my opinion, don't downplay - or allow anyone else to downplay - your concerns over your appearance and self-image.  As we all know, that is a HUGE part of this, often more difficult than the dx itself, and if it's important to you, it's important period.  I had to shut out people who seemed to be judging some of my thought processes, and although it was difficult to put that space between us (I am a very social person), it was definitely worth it.  If I care about my hair, my breasts, my image - that's no one's business but mine and my partner, to a certain extent.  I know this isn't what you asked, exactly, but it's something I experience that sounds like something you could run into.  I hope it helps a little...

From what I've read of the medical literature, whether or not they find a lump or any other suspicious lesion ('suspicious lesion' means anything at all else that is suspicious), they almost always recommend an excision.  (They use the word excision if there isn't a lump.  Since you have a lump, its a lumpectomy.  Hopefully, since the lump is right next to the LCIS site, they will be removing both the lump since its near the site where they found the LCIS, and the area around where the LCIS was found.)  They won't be able to verify that an area is LCIS until after they look at it under the microscope.

I don't understand your first surgeon's stance at all.  Unless you have other substantial risk factors, such as a significant family history or radiation treatment for lymphoma, probably the majority of women with classic LCIS never go on to get breast cancer.  But that doesn't mean you shouldn't get the lump removed, or at the very minimum biopsied.  (I assume you have classic LCIS.  See your pathology report if you don't know.)

Almost all classic LCIS is estrogen and/or progesterone positive.  The only way I can see your first surgeon's statement is true (Being on hormones has nothing to do with LCIS) is (from what I've read) we have NO idea what why one woman will have LCIS and another won't have LCIS.  We don't know what causes LCIS.  We don't know how or  even if LCIS causes an increased chance of breast cancer.  (There could be some factor X that both causes LCIS and causes breast cancer.  Correlation is not causation.  All we know is there is a correlation between LCIS and subsequent DCIS or invasive breast cancer.  For example, we do not think that tying your shoes has anything to do with the sun coming out, but, if both happen, they usually happen on the same day.)  We don't know how many women are out there who have LCIS and don't know it.

Although, virtually by definition (because LCIS is an unusual condition) the study populations are small, we do think that anti-estrogen hormonals do help reduce the incidence of breast cancer in LCIS and other atypical populations. http://www.ncbi.nlm.nih.gov/pubmed/23117858

I'm very glad that you are seeing someone else.  (I hope that your 2nd opinion will be a really great one.  I've had both wonderful and not-so-wonderful female surgeons.  My breast surgeon (female) unfortunately, was great technically, but not only had a bad bedside manner, but had problems with .  After my core biopsy showed classic LCIS, her first words to me upon entering the room  at my first visit was 'If you want prophylactic mastectomies, I'm going to fall down in my chair.'  Problem:  she hadn't asked about/verified family history or lymphoma treatment.  After my excision, she simply refused to do further surgery, and she totally discounted the very bad experience I had in wire insertion. I wanted her to spend 2 seconds and say 'I'm sorry that happened to you.'  She said, "I don't have anything to do with that <radiology> department. If you have a bad time in a future procedure, tell the CEO.")

 In general, surgeons have historically had a reputation of having bad bedside manners.  As one psychooncology book said (I'm paraphrasing) 'You can't expect a person who cuts you apart and puts you together again to be warm and fuzzy.'  Maybe some surgeons have gotten better at this, though.  My last 2 surgeons have had great bedside manners, one a woman, one a man.

I just don't want you to be hurt again.

Yes it does.  Classic LCIS was first discovered in the early 1940s.  They started to question if there are subtypes  (and variants) in the early 1990s or so.  

I am _not_ a pathologist or a physician. I would strongly urge you to talk to your new surgeon about this.

It sounds like there is a possibility that you have an LCIS variant, but I'm not completely sure of this.

Are there any more descriptors in your pathology report?  Anything like 'type A or type B', your ER/PR status?  Did they do HER2 stains?

There are different types of necrosis, at least in DCIS.  I don't know if this makes a difference.

Here is some more information, though.  

Note that pathologists and pathology departments can differ, and they can differ over time.  In bacteriology, too, they can change the name of the organism, or classify them differently.   When I was first diagnosed with LCIS, some pathology websites from major institutions (like Stanford, etc) defined LCIS differently than other places.  (I can't remember the details, but it was something like LCIS was defined as the expanded lobule sac being 6 cells across, whereas another place would say the sac had to be 4 cells across in order for it to be classified as LCIS vs ALH.  I probably have the details wrong.)  This may also be an opinion from the pathologist that reads your pathology report.  There have been at least very prominent pathologist (Dr. ?Christofanilli who works with IBC?) who reportedly spent their spare time re-reading slides and reclassified (rediagnosed) them.

This is from a  UCSF lecture in 2010.  It mentions that classic LCIS can have necrosis.  (I did not know this.  I do not know if this is a controversial stance or not.)

http://labmed.ucsf.edu/uploads/207/100_lobular_bre...

In contrast, this 2012 lecture, also from UCSF, but another lecturer, called LCIS with necrosis as a variant.

http://www.ucsfcme.com/2012/slides/MAP1201A/18YiCh...

From what I've read, if you have classic LCIS, then margins are NOT important.  Why?  Because they know that with classic LCIS (and presumably the variants) there are multiple spots of LCIS in a breast, and its often bilateral (in both breasts.) 

If LCIS is found in a breast, >50% will have residual LCIS in the
ipsilateral breast and >1/3 will have LCIS in the contralateral breast  

http://www.thedoctorsdoctor.com/diseases/lcis.htm They can't reliably detect LCIS without looking at it under the microscope.  They know these figures because before roughly 1990, the routine treatment for classic LCIS was bilateral mastectomies, and they could look at the mastectomy specimens.

There is very little information about LCIS variants.  (They were only grouped together in the last 10-20 years or so.) 

If classic LCIS has a lot of controversy about it, then LCIS variants have even more (because there is even less information known about them and they are even more unusual.) From what I've read, LCIS variants are normally considered more aggressive than classic LCIS.  If you have an LCIS variant, then I really, really don't understand the thinking of your first surgeon.

Particularly if you do have a variant, then you _may_ want to consider getting a 2nd pathology opinion from a major institution (because variants are unusual, and a major institution would have seen more of them.)  If you have a variant, then you may choose different treatments than classic LCIS.  I just had classic LCIS on my biopsy, and I had a 2nd opinion at a major institution (which gave me essentially the same diagnosis as before.)  I also had a 2nd opinion surgery consult there too.  I thought I allowed plenty of time for the 2nd pathology opinion, but the 2nd pathology opinion took 3 months.  So the 2nd opinion pathology report was not done by the time I had my 2nd opinion surgery consult.

I know that's a long time.  I don't know if you'd have a different time course.  If your 2nd surgeon opines that you should get an excision/lumpectomy, then I think its reasonable that you could have an excision/lumpectomy before you decide your other treatment options (if any).  Your excision/lumpectomy should let you rule out obvious DCIS or invasive breast cancer.

P.S. There is an LCIS forum below.  I obviously have classic LCIS; I don't have a variant.  There are threads in the LCIS forum about some people with LCIS variants.