Dx Changed:PleoLCIS to Classic LCIS

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Grakenmom
Grakenmom Member Posts: 169
edited June 2014 in LCIS (Lobular Carcinoma In Situ)

I am so confused - BS called to say that he sent my left breast-lumpectomy info & rpt (original dx was IDC, DCIS, Pleomorphic LCIS and ALH), to the sr. pathologist and also to Sloan Kettering.  These 2 opinions changed PleoLCIS to classic LCIS, ("B" form?).  I don't think it changes much in my mind, I think it changes their std of care. And, if 3 of the 3 drs had agreed, I would be more comfortable with the current dx.

Is it reasonable to consider bilateral mastectomy with classic LCIS? I assume that since it was IDC that was removed during lumpectomy, that it's not a "one and done" type of invasive cancer risk, correct? I'm still at higher risk in the future for invasive breast cancer. Would appreciate hearing from anyone who had an invasive-type BC and either LCIS or PLCIS and went the mastectomy route.  Also if you could provide any info on questions to ask surgeon/onc, etc.

Also, is there anyone who had lower grade and stage IDC/LCIS and also did chemo? I'm terrified of mets, but have not yet had any additonal testing for organs (MRI? other?).  I think I've decided to do chemo, in the theory of doing everything possible to reduce the risk. Pretty sure I'm not doing the OncotypeDX, really don't want to muddy the waters any further with a possible "borderline" score (low grade,low stage,no fam history). Any experiences and info you'd care to share would be greatly appreciated. 

Sorry if this isn't the right place to post this, I'm new here & still finding my way around the site. Thank you,

Erika

  

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2009

    grakenmom----you're right, it doesn't really change much in the overall situation. Since you have invasive bc (IDC), that and the DCIS take priority over the LCIS (whether it's classic or pleomorphic) when they are recommending your treatment plan.  (It's easier when all 3 opinions are the same, but 2 out of 3 is still a majority.)  While it's not medically necessary for bilateral mastectomies for LCIS (it can be left in and monitored closely as it is felt to be non-invasive; tamoxifen is often recommended to help decrease risk), some choose PBMs  to avoid the  anxiety of high risk surviellance and the need to take tamox for 5 years--that's certainly a reasonable choice, and a very personal one as well. One thing to consider-----since you already have a diagnosis of invasive bc, you will be monitored very closely and most likely will be taking a preventative medication anyway for the IDC.

    anne

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2009

    Hi Erika,

    I understand why you are so confused and concerned.  It is hard to have various opinions and to have things reversed after you thought you knew what you were dealing with.  All of this is hard, and you well may be right in considering bilat given your situation.  It isn't the only solution though.  As Anne pointed out you will most likely be given Tamox or another anti-hormonal drug based on your IDC and DCIS.  The LCIS is not cancer, it is only a marker for increased risk.  It would be very reasonable for you to take a watchful, waiting approach and see what happens.  Your cancer is at a very early stage, and is low grade.  These things are in your favor.  How old you are and your menopausal status are considerations too.  I would hate for you to go through chemo without needing to, and your situation may not warrant it.  The oncotype is, I believe a good test, based in good scientific research.  I realize quite well that it can muddy the water, but you may come out low and "know" for sure that chemo isn't in your best interest.  If you come out in the gray area, then go ahead and do the chemo since you are already okay with it. 

    I had no choice about having a MX on my left side, and decided to have the bilat, because I was afraid of developing BC on the right.  I did have PLCIS in both breasts, and PILC on the left.  I am happy with my decision, but if I could have had a lumpectomy, I would have.  I have given it a lot of thought.  Reading these posts, and recognizing that the long term outcome is the same for both has helped me realize that while I have no regrets, that others make more conservative decisions and that is right for them.  I enrolled in the TAILORx trial, had the oncotype test, scored a 24 and was randomized to chemo.  I am 10 days post first chemo, and it is no picnic.  I am on the high end of the scale for the cut off for chemo per the trial, and I am okay with doing it, but if my score had been in the low range I wouldn't have had any problem not having the chemo.

    I hope for the very best for you,

    Susan

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