Need advice on treatment

jmm919

I was diagnosed with LCIS with unclear margins in early August.   Had a second biopsy done two weeks later and was told I have extensive LCIS and a microscopic invasive cancer.  I am scheduled to have bilateral mastectomies with DIEP in mid Nov.  After an agonizing six weeks, a second opinion confirmed that I did not have ILC - this was three days ago.  I still have my appointments scheduled for surgery.  My question is:  what should I do?  Many say "wait and see."  I am feeling that waiting to get cancer is not an option!  I was already thinking that I wanted mastectomies before the ILC diagnosis.  Any ideas?  

leaf

Did the 2nd opinion opine whether you had microscopic invasive cancer?  If so, was it IDC, not ILC?

You don't need to have clear margins (at least with classic LCIS) because normally there are many spots of it in one breast; it is often bilateral too.  Since LCIS usually doesn't show up on imaging, they wouldn't know where to remove.

From what I've read, the extent of LCIS doesn't necessarily have anything to do with your subsequent risk of breast cancer.  LCIS patients who go on to get invasive breast cancers often get them in a place that previously appeared (by imaging) to be normal.

Whether or not to have BMX is a very personal decision.  No one but you knows what it would mean to you for all the positives and negatives for each choice.

There is also the option of antihormonals (such as tamoxifen).  This may or may not appeal to you. (Just wanted you to be aware that you have that option also.)

I am assuming you have classic LCIS, not Pleomorphic LCIS? Do you have a significant family history?  Those might also factor into your choice. 

Almost all things concerned with LCIS are controversial, so there is no right answer or wrong answer.  I don't know how microscopic invasive changes the picture (if at all) because I haven't read up on it. 

Best wishes on your decision.  You will make the right choice for YOU, and that's the important thing.

beacon800

Your story is quite something!  Beats mine.  Mine was that the first doc who had my biopsy results back was my OB/GYN and she did not realize the difference between LCIS and cancer and she told my biopsy was positive and too bad, I had breast cancer.  That was a bad, bad feeling.  Luckily a breast surgeon cleared it up for me before much time had  passed.

However, like you, I got to feel what it is like to be told "you have cancer" and then someone comes along and says, oh, right, you don't really.  Quite a turn of evernts.  But the advantage is that you get to see how you handle stress, how you cope and what you "wish" you would have done.  So, when they told you you had invasive, did you first think, "Damn I should have had those MXs already and skipped this!"  Or were you resigned and did not have any regrets?  That gives you the idea on what to do next.  I did BMX, love it, never look back and my whole anxiety level is better (I was nearly insane before). 

Mainly, CONGRATS to you for not having the invasive!! That is sweet news.

KellyMaryland

Ugh.  Would hold some of your stressful load if I could.  Sorry you are in this position.  Surgery is something you really want to be sure about before you do it...no going back, etc.  A trusted friend, counselor, someone you can really unload on (we here on the forum!) can help you determine whether or not your hesitation is due to cold feet (it's a very big thing to be considering) or due to the fact that you had to rush into the decision and need more time.  It's nearly impossible to take the emotion out of the issue but it does help to solidify your thoughts if you can do so.  My personal choice for PLCIS was to go forward with the surgery.  For me it was hard but ultimately the right decision for my life.  Wishing you peace with your own decision, Kelly

jmm919

I'm not sure what pleomorphic LCIS is.  I had the slides from the two biopsies (second one had shown invasive cancer) to a hospital in Pittsburgh for the second opinion.  This hopsital found that I DID NOT have invasive cancer!!! The diagnosis of extensive LCIS is what this opinion showed.  I'm not even sure what extensive indicates. I'm hoping my dr. will order further testing so I know for sure.   Does anyone know what the statistics are for women who do the "wait and see" approach?  I'm 53 and in great shape.  I have an appt. to see the 2nd opinion Dr. this Monday.  I feel I'm leaning toward BLMX.  The two biopsies left me deformed looking.  I don't think can go on with this "time bomb", as I refer to it, hanging over my head.  Thank goodness I have a couple days to think before consulting with the dr.  Thank you all for your responses.  It's nice to know I'm not alone with these decisions and you have all been where I am.  Any kind of cancer changes a person forever.  I will never take my life or my loved ones for granted! 

leaf

Its hard to do studies on LCIS (and nothing worse) because it is rather unusual, and, since almost all LCIS is found as an incidental finding when they are doing a biopsy for something else (in other words, it normally does not show up on imaging).  So, we don't know how many women are walking around with LCIS (and nothing worse) and don't know it. We don't know the proportion of women that have LCIS (with nothing worse, but are walking around with it undiagnosed) and later develop invasive breast cancer (which is then diagnosed.)

Arguably one of the longest studies on LCIS (with nothing worse) treated only with watch and wait is the Chuba study. They looked at patients diagnosed with LCIS from 1973 to 1998 in the SEER registry.  They found 350 out of 4853 patients developed invasive breast cancer at least 1 year after their LCIS diagnosis. (They couldn't look at the issue of antihormonals because antihormonals weren't proposed as an alternative until about the early 1990s.)

In Table 2, the cumulative incidence of IBC is shown according to the age distribution of the LCIS patients. For all age groups, the rates of IBC continually increased over time... the incidence of IBC increased from  4.1%... (at 5 years) to 7.1%...(at 10 years) and to 11.3%...(at 15 years).

IBC detected after LCIS represented less advanced dis- ease compared with primary IBC detected during the same time period (1973 to 1998)...Patients with a primary tumor size of less than 1 cm represented 21.4% of primary IBC patients compared with 42.9% of patients with IBC detected after LCIS.

A substantial proportion of patients had mastectomy (n=1281), and, as expected, this intervention was associated with dramatic (although not complete) re- duction in the rate of ipsilateral occurrences of IBC, with less than 0.5% to 1.0% ipsilateral IBC 15 to 25 years after mastectomy...http://www.ncbi.nlm.nih.gov/pubmed?term=Chuba%20LCIS.

Pleomorphic LCIS is an unusual type of LCIS that was first proposed around 1996.  (Classic LCIS was first described in the 1940s.)  So obviously, we have no recent data for PLCIS- there are too few cases of it, and we don't have information about treatment.  Pleomorphic means the PLCIS nuclei are larger/more irregular/look closer to invasive cancer than classic LCIS.  Since pleomorphic INVASIVE lobular carcinoma is thought to be more aggressive than classic INVASIVE lobular carcinoma, it is suspected that PLCIS may be more aggressive than classic LCIS.

It should say PLCIS or have some descriptor of the LCIS in the written pathology report.

Extensive doesn't necessarily mean extensively in your breast.  It means extensively in the slide they are looking at.  Most all patients with LCIS and nothing worse have multiple spots of LCIS in one breast, and often have LCIS in the other breast.  (They know this because prior to about 1990, most patients had bilateral mastectomies, and they looked at the mastectomy specimens.)

They can't know how many spots of LCIS you have in either breast because in order to really know you have LCIS, they have to take out that portion and look at it under the microscope.  If they took out all the portions of your breast, that would essentially be a mastectomy.

They think that most (not all, but most) LCIS is a marker somehow of an increased risk of breast cancer.  In other words, most LCIS does not directly turn into DCIS or invasive breast cancer. (They know this by genetics/chromosome breakage/mutation studies, looking at the mutations in LCIS and comparing it to the mutations of subsequent DCIS or invasive breast cancer.  Usually, but not always, the LCIS has a different breakage/mutation pattern than subsequent DCIS or invasive.)  Maybe LCIS is a consequence of some unknown process that puts both breasts at higher risk for breast cancer.     LCIS is weird, and there's a lot we don't know.