LCIS and Prophylactic Mastectomy

614

I am also extremely worried that lobular carcinoma may not be viewed on imaging because lobular is nearly impossible to detect and it is sneaky.  This is very scary for me, especially because my ILC and my LCIS were both pleomorphic.  However, I trust and love my doctors so that gives me solace.

My biopsy in November showed ALH.  I asked my RO and my MO why ALH would be there so soon after radiation and while taking Arimidex/Anastrazole.  They both said that the Arimidex/Anastrazole should stop the ALH from becoming malignant and that the ALH may have been there the whole time but not seen until this biopsy.  Neither my RO nor my MO feel that any surgery is warranted at this time. 

I am glad about that.

Good luck to everyone here and happy holidays.

katykids

my MRIs did not pick up the LCIS. It was found in the pathology after my PBMX.

I, however, have fallen into the category of post mastectomy pain syndrome. I know I would have made the same choice with the given information. And even if they had told me about risk of pain-- I wouldn't have believed it could happen to me.

Best of luck and don't forget about a 2nd opinion. Mine wanted me to wait for one more round of surveillance. And see if more abnormalities showed up. I stayed with my moms docs.

leaf

I can't find a whole lot of information about the false negative rate of MRI in ILC. But this tiny study of 21 patients with histologically proven ILC found 1 patient who was MRI negative. http://www.ncbi.nlm.nih.gov/pubmed/18800196

I wish MRIs or something could detect BC 100%. But we're not there yet. Still I'll take 1 out of 21 (if that holds for the general population) rather than something higher. We'd all like to have certainly so we'd know what we are dealing with. We all want to be ready for whatever is ahead for us.

MsVeryDenseBreasts

Stoneybrook108, I hope all went well for you. I'm 7 weeks out from exchange after PMBX for LCIS. I was diagnosed nearly 8 years ago and managed LCIS with close surveillance up until my PMBX in Oct 15. In the intervening time period from diagnosis to PBMX I had 5 core biopsies and 2 excisions. all on the same side and all LCIS. If I had not done the PBMX, the standard of care would have dictated another (3rd) excision. I had extremely heterogeneously dense breasts. I was ending up with an MX in slow motion over the years. When I was trying to decide what to do over the long term it was difficult to discern what the odds would be that I'd experience some complications...and PBMX is a one way train.. As others have noted here, the folks who sail through tend not to post because they are busy living their lives. I am however grateful to the people who have had problems and posted here because it gave me a very good sense of whether or not I'd be able to stomach things if it did not turn out well. I don't regret living with LCIS and waiting to do the PBMX. I would not have been ready to do this sooner. If you read some of my prior posts you can get a sense of how things evolved for me and why I came to believe that surveillance was no longer a wise choice for me. So, with that in mind, for the benefit of others pondering these choices, I will share with you what my personal experience has been in terms of the positives and negatives:

Pro: No more mammos, US, MRIs, biopsies, breast testing anxiety and NO drugs. In terms of the aesthetic results with skin sparing, nipple sparing PBMX with implants.....I have excellent symmetry and a natural appearance. My regular clothes (and bras) still fit. I don't need to wear a bra unless I wish too. I don't have any phantom pain and no restrictions at all on my activities or range of motion. I don't have any iron bra feeling. The foobs look perkier than the real ones did. I did not go bigger. I stayed my natural size. The inframammary incisions are already pretty faint and look great. I did not have any bad experiences with either surgery or recovery period.

Pro added on 3/23/16: Much to my surprise, over the last 2 weeks I seem to have regained substantial sensation on the right breast....not just on the outer areas, but also directly on the breast itself and the nipple. I sure was not expecting that! It still feels a bit like novacaine does when it's wearing off, but I do have feeling. I'm not expecting to regain anything on the left side, but this is better than nothing!

Negatives (some will view these as negatives but I can't say it really bothers me much....certainly not enough to regret by PBMX choice): the implants can get cold easily at times...they do not always maintain body temperature. My nipples look great (and even) but they are always erect. I do not have any sensation on the front of my breasts, only on the sides and underside. I'm very thin and have a little bit of rippling....but here's something I've never heard any post about....the rippling is not persistent...it depends on what I wear. I was not a candidate for fat grating so they did alloderm with mixed success. One side looks totally natural. You'd honestly never know it's not real. The other side has some rippling....but it comes and goes. My foobs seem to prefer little or no compression garments in order to avoid rippling. If I wear a sports bra or other clothes it can cause weird ripples which can take minutes to hours to go away. I also find that compression garments (like athletic wear) can cause the implants to press against your chest and feel very artificial (much like the TEs) did. I've experimented with different sizes but that does not seem to matter. What seems to affect rippling has more to do with the style/cut of the garrnent and the type of material.

On balance for probably 90% of any given day, I forget I even have these foobs. I am most aware of them when I turn over in bed at night, turn my body while driving in the car or when putting on athletic wear...and that's because they just don't move the way a natural breast would. I have anatomicals. If someone has rounds, they have not have the same sensation.

It's a big decision....and not to be made lightly. You want to be totally comfortable with your choice AND be confident in your medical team. Best of luck to all. For what it's worth....my husband thinks they look great.

Asante314

MsVeryDenseBreasts

Thanks for the update. This forum has been very helpful to me in following my decision, as were many of the words given by you and several others ( Leaf, awb, marketingmama ... sorry if I miss someone!) after my initial posts a few months back.

As I am now 4 weeks pre-op for my BMX w recon, the flutters of uncertainty are making brief appearances. Then again, it is just about the time I would be getting the call for precerts for the 6 month ultrasound/ mammogram.

Final pre-op appt w BS this week. Going to revisit BS rec for sentinel node. (3 BS all rec on the one side) I want to req they mark the node, then go back if there is reason.

Following the Dec - Feb surgery forums have also helped get me ready. Planning on no complications!! But aware of the many different routes of recovery and having no expectations of being superwoman. Trying to plan to let other help is somehow the hardest part. And DH while supportive, is as always clinical/ factual.

Your post was just what I needed. Thank you!

MsVeryDenseBreasts

Asante314, you touched on something I forgot to mention....the decision that caused me the greatest anxiety was whether or not to do SNB. Ultimately I decided no and I am so glad I did. I had had an MRI 3 mos prior to PBMX and nothing lit up so that gave me a shred of confidence that despite my very dense breasts, hopefully the odds would be low that anything more nefarious than LCIS was lurking. It turned out to be the right choice for me. Also, the "good" breast that never had any mammo issues/call backs turned out to have atypia so bilateral was a good choice for me as well....

Stonebrook108

MsVeryDenseBreasts

I so glad your surgery went well !! I too have the same issue that the implants get cold. But, give me cold foobs ANYDAY over the worry of having LCIS and wondering when the next round of tests will revel. I have never regretted the decision i made and would do it all over again if I had to.

I don't' come on the site much anymore. I forget what happened to me all day long untill night time and you get undressed. My foobs came out GREAT Thank You Dr Israeli.