LCIS

November:  I had a breast reduction sept 2010.  The pathology report showed ALH in left breast.  Had mri Dec 2011.  THen had to have 2 biopsies.  Results came back LCIS in left breast.  Went to oncologist, was put on tamoxifen.  I like you were scared of the side effects.  BS suggested BPM.  Went to 2nd opinion, that dr. suggested PBM also.  I was told I had a 35% of getting breast cancer in the future.  I am a worrier.  I cant just sit and wait plus I didnt want all the stress of getting tested every six months.  April 2011 I had a PBM.  The surgery was not bad for me.  I was so stressed and nervous about the surgery, but it was fine and I am glad I went through with it.  If you have any questions, dont hesitate to ask.   Doreen

I have chosen for now the watch and wait and have opted not to take tamoxifen.  I am comfortable with that decision now even though I have LCIS, ALH and ADH all going on in my left breast.  Down the road I may change my mind and opt for a PBM.  Good luck whatever you decide to do.  It is a very personal decision that only you can make.

I was diagnosed with extensive LCIS in June 2011.  It has been a rough road these past 6 months worrying, researching and getting multiple opinions.  I have finally decided on a PBM with immediate free tram reconstruction and SNB on January 10. Although I am very anxious about the upcoming surgery and recovery, I think I feel better having made a decision. Good luck with your decision making! 

Beacon, I'm pretty sure only on my right "bad" side. I am wondering though if they end up finding something on the left side when the pathology comes back, what happens then?



I don't know if my surgeon always does a SNB, but maybe because of how extensive the LCIS was,she may want to. I am concerned about the risk of lymphedema and an extra place on my body that will need to heal.



How did you finally come to your decision?

I have a weak family history and was diagnosed with classic LCIS in 2005.  My breast surgeon 'did not want to do any more surgery on me' after my excision.  Since she was the only breast surgeon in my insurance network, and I did NOT like this breast surgeon, I did opt to go on tamoxifen.  I just finished the 5 year course of tamoxifen.  I did have endometrial polyps, but all of them were benign. I had endometrial polyps before I started tamoxifen too.  I may have had some 'warm flashes', but I was perimenopausal too.

It is quite uncommon for a specific side effect happen in ALL people who take a medication.  At the NCI, they state in regard to tamoxifen prophylaxis:   In women older than 50 years, this benefit was accompanied by an annual incidence of 1 to 2 per 1,000 women of endometrial cancer and thrombotic events.http://www.cancer.gov/cancertopics/pdq/treatment/breast/healthprofessional/page5  For me, that risk was certainly worth the ~50% reduction in the risk of invasive breast cancer.  (This ~0.5-1/100 incidence over the 5 years of tamoxifen for endometrial cancer or thrombotic events is comparable to the ~1-2/100 lifetime incidence of invasive breast cancer in women after BPMs.)

I have other medical conditions that could increase my risk of lymphedema should I have BPMs, including bilateral carpal tunnel surgery, and radiation is probably not an option should I get invasive breast cancer.  I also have an anxiety disorder, so this has not been an easy decision, and probably not an easy decision for anyone.

If I get further breast cancer issues, then I'll certainly want to reconsider my decisions.

But it is a very personal decision. I would probably have taken a different direction had I had PLCIS.    It may seem by reading on these boards that 95% of the women with LCIS get BPMs, but I don't think that is true in the general population of LCIS patients.  I doubt if most women who have LCIS and a weak family history pay for BPMs out of pocket- I don't know if insurance pays in all cases.  In any case, you certainly won't get BPMs if you can't find a surgeon who will do them.

  It requires more psychic energy to post on these boards, and people who have a bad time on a certain course, or opt for a 'more aggressive' approach  may be much more likely to post.   The important point is that you choose the best approach  for YOU.

Best wishes.

The 'best' thing about LCIS (of course, there's really no 'best' about anything associated with BC) is that it allows time to research and reflect before making a decision.  I had a crazy big family history so prophy bilateral mx was not a hard decision for me, but I would have struggled with it had the history not been so extensive.

I am SO pleased to see the comments here about taking lymphedema risk into consideration. I had bilateral LCIS and had SNB on the breast that had suspiciously extensive LCIS findings (I had 5 nodes removed: SNB does not necessarily mean just one node). My post mastectomy pathology was totally clear, so I did take care of the BC risk 'in time,' but I do have lymphedema on the SNB side.  Fortunately for me, the lymphedema is very mild and I caught it quite early, so treatment is manageable and I am able to limit my symptoms.

I would say that concern over potential lymphedema would not prevent me from going the same route if I had to do it all over again, but to anyone evaluating prophy mx for LCIS, just make sure you are including lymphedema in your research and decision making.  To me that means knowing all that you can about LE symptoms, becoming your own strongest advocate in-hospital about refusing BP and needle sticks on a SNB arm, and asking your BS to refer you to a lymphedema therapist or clinic before surgery, to get baseline measures of both arms, which will facilitate an early and accurate diagnosis of lymphedema should symptoms appear when post-surgical swelling should be abating. 

I do not mean to scare anyone here with tales of lymphedema, but many surgeons seem to downplay the risk (I was told it was 1-3% with SNB, which seriously understates the risk).  I am just suggesting that as LCIS allows research time, take some of that time to investigate your LE risk along the way. 

Also--the luxury of time means that if you are leaning toward prophy mx, you can ramp up your physical preparation for a successful surgery and recovery, adding exercise and strength training; paying great attention to nutrition; and talking with your docs about appropriate supplements that may aid in healing.  None of these would be a bad idea if at the end of your reflection period, you opt not to do the surgery.

Best wishes to all who are weighing options after an LCIS finding.

Carol