Pleomorphic LCIS

thank you so much, minnesota,  for your very personal post.  it has made a deep impression.

Hi Ladies,

I'm back after another hiatus. Cindala, congrats on your progress.

Kelly, how's it going? Your surgery was 1/26?

I'm approaching the 6 month mark next month and will face my first follow up mammogram. Jeez Louise! This brings up enormous emotions that I thought I left behind. In short, I am just plain terrified of getting that call, "Hi Mrs _______, I don't want you to worry, but we're going to need another look ...."

I think all future Mammos and MRIs are going to be scary, but I don't think there's anything quite like the first one post dx. I'm waiting for the nurse to call me back with my appt date.

I do not want the surgery, but I do. I've got to make an appt for a 2nd opinion with another PS. I just didn't like the massive cuts the first PS said he needed to make. He said I'd need a breast lift and the incisions will have to be made over the nipples. It's not like I walk around in low cut shirts often, but I still would like the option. I don't even know what I'm thinking. On one hand, we're talking about possible cancer. On the other hand, we're talking about a massive change. I hate this darn decision.   

Ugh, I feel for you.  I too have (had) PLCIS and was diagnosed in May of 2010.  I had the double mastectomy in September of 2010 and do not regret it one bit.  My incisions for the initial surgery to remove the breast tissue, and my exchange surgery were both made over the nipples.  I didn't realize there was another way, but I think someone on here said her incision was below the breast in the lower fold.  My scars are minimal and I go for the nipple reconstruction in June.  Was told the tatoo artist can pretty much get rid of the entire scar.  I'm not going to lie, my new breasts are not like my old ones.  The look better, but they don't feel the same.  They're not as soft and warm.  Still, I am a worry wort and I did not want to worry about cancer in the future.  But I've also learned that cancer takes its own sweet time, so there's no rush.  Everyone has to do what's best for her.  I think it would help all of us PLCIS women if we had a better understanding of our rare type. Feel free to PM if you want.

Crescent,

It's hard to describe how relieved I was when I got this behind me. I spent a couple of years in between the first mastectomy and recon and the second - all the while worrying and wondering what I should do, gathering info, seeing and talking to different docs... That was the worst part, definitely. After I woke up from the second mast and recon, I looked down at my new breast and thought, "What was all the fuss about?" Really. I had skin-sparing and nipple-sparing the second time. The first time was a delayed recon and I was unable to keep my original nipple. I had very, very positive reconstruction outcomes, so I don't feel like I had mastectomies. My breasts are warm and bouncy and I have regained a lot of sensation - deep down and on the skin - tho, of course, not the nipple sensation like before. I look at it as tho I just had them re-stuffed. I didn't have implants, but I know lots of women who did. I think how weird it feels is highly individual. In retrospect, I know I made the right decision. It's like the sun came out in a sky that had been heavy with dark clouds. I don't know what your PS meant  - that they used to do this for breast pain. Nipple and skin-sparing mastectomies are pretty recent. I can't imagine this is anything that they "used to do" or that they would do a mast for breast pain. I really don't think you will have any monthly soreness afterwards. That just doesn't make sense to me either.

Hello PLCIS friends....wish I knew you all under different circumstances!  The decisions to make with this funky disease are difficult for sure.  I'm two and a half months out of the mastectomy/TE surgery and very glad to be on the other end of the decision process.  I must say that it took me quite a while to get used to my new look.  The pec muscle just felt so prominent to me and I just felt depressed in general.  Then at about 8 weeks I suddenly just felt better, both physically and mentally.  I swear that I could even live with the TEs if I had to, though my exchange surgery is in June.  I'm one who had the incisions under the mammary fold- they are not at all visible.  Nipples look like normal and respond like normal but I don't feel them at all.  Not a major loss for me, though I can see how for some it is.  The best indicator I've gotten that I made a good decision came from my five year old who told me, "I'm glad your breasts are healed because you're back to your nice self now."  The stress, which you all know, of the appts., with the potential of biopsies, was all-encompassing for me.  Crescent- when I met my current PS, I knew that I would go through with it. Give yourself time and something will come to you that urges you one way or the other.  In the meantime please keep coming back, checking in, asking questions.  If any of you are visiting lovely DC this spring, let me know....feel like we should all be meeting for a glass of wine!

Kelly

Thank you Kelly & Minnesota. As you guys can see, I'm obsessing. I feel like I've been on this board 24/7. I told myself last night that I wasn't going to post so obsessively, but you know, I think it helps the lurkers and quieter women to read someone's journey in their words. I know reading older posts has definitely helped me.

Kelly, you know your post brought tears to my eyes. Your posts have always stood out to me, because I understand how you agonized over this. Your latest post is so upbeat & lighthearted, and that was something that seemed to be missing previously (not that you weren't upbeat, but I think this disease and decision was weighing very heavily on you). You really seem as though a huge weight has been lifted off of you.

If I do this, I'm waiting until fall. I cannot imagine going through the recovery in summer, especially with kids at home. I do fear however, that anticipation is going to eat way at me if I do choose this route. The worst part for me in all of this has been the waiting periods.

Thank you again for sharing your experiences and advice.

Kelly, you're very sweet. Thank you. When I was dx'd with LCIS in Oct, my intitial feeling was no tamoxefin (sp?), no PBM and simply close monitoring. But then when I started reading this board, I learned about skin/nipple sparing mast. When my BS said I qualified, it changed the game a bit for me. I would very much like to someday be able to put this chapter behind me.Though it's changed my life forever, I'm not sure I can relive last fall every 6 months. I think I'll feel a little better about chosing a path after I get through my mammo in 2 weeks. I am terrified to meet with the dr afterward for the wet read of my films. I do think Mr Xanax is going to make his way into my meal plan that day. lol

What I think will be interesting to watch is the stats and info on LCIS in upcoming years. I think with digital mammography, a lot more women are getting dx'd. I have no idea if the changes to my calcifications and spotting of new clusters were actual, or simply spotted because of the new machine. I am quite anxious to see if they grew or remained the same. If they've remained the same, I may feel comfortable with close monitoring.

I have an appt with a PS also in 2 weeks to discuss this micro fat grafting thing. If I can walk away with my own skin, nipples and a coupla breasts filled with my own fat, then it makes mastectomy a lot more palatable. Of course, we have to consider the expense. Ugh.

Keep healing, girl! I predict a fabulous, carefree summer with your kids.

I certainly don't intend to give you any treatment advice  - there is so much that I don't know, and these are very personal decisions.

I do wish they had given you more details about how the cells appear.

This recent article describes some  PLCIS variants, and describes some that *may* be more aggressive than other variants.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2783988/?tool=pubmed

This is confusing.  It appears they are struggling to come up with a dx and initially went with DCIS and amended that pathology to PLCIS.  There may be more DCIS and or invasive in the breast based on the ambiguous MRI.  Likely that surgery will be the definitive procedure.

I had only a small amount of PLCIS, but could not live with wait and watch due to my poor family history.  I am just fine now and never second guess my choice.  Keep us posted on what you decide to do.  Peace to you

Hey Maria. Sorry you are dealing with this.  Recommendations aside, did you have a surgeon that you just liked better, felt more confident in? And think about whom would you like to be followed by because now you have graduated to more frequent care.  I had prophylactic bilateral mastectomies in January of this year, another option albeit not an easy one.  Happy to answer any questions. All the best, Kelly

Marie, Sounds like a solid decision.  I'm in DC but have lots of friends in NY that recommended I get a second opinion at MSKCC and Dr. Sacchini was who I was interested in seeing though I didn't get end up going. Best of luck to you, Kelly

Thank you Kelly & Leaf!

Well, my BS called my again today to tell me that she has me scheduled for surgery on July 26 and gave me until Monday to cancel or keep the date. She said that her calendar is quite booked for the next three months and I need to make a decision soon. And still she did not ask me about the 2nd opinion hmmmm makes me wonder if I hurt her feelings by going to someone else. In the meantime, I've called Dr. Sacchini's office and started the ball rolling. I'm seeing a plastic surgeon (Dr. Pusic) on July 18th just in case I may need a mastectomy.

Dear Maria,

I just completed 2nd phase reconstruction after BMX with TE on Jan11, 2011 for PLCIS.  One year prior had a section removed.  I then got a second opinion from Dr. Guiliano in Los Angeles, considered by many the top onocology breast surgeon here.  He wouldn't make my decision for me, but said he thought I had perhaps a 50% chance of having invasive BC eventually. I lost my sister at 47 to BC, no other family history of BC.  He said they do not know enough yet about PLCIS.  I also went to Dr. Silvana Martino at the Angeles Clinic;  there are some studies done in Sweden and Italy that indicate that LCIS is more aggressive that DCIS and if invasive very aggressive.  And it can become invasive, along with raising risk of invasion elsewhere.

Not trying to alarm you but wanted you to know my experience.

Cindala 

I don't want to speak for Cindala, but in the US, there was this Li et al study, published in 2006, based on SEER data 1988-2001, that suggested that (treated) LCIS (not separated into PLCIS or classic LCIS) had a higher incidence of invasive breast cancer (if you include both breasts) than (treated) DCIS. 

Of course, both groups had 'usual treatment' (during the time the condition was diagnosed), and total mastectomy patients with LCIS were excluded. (If anything, this might REDUCE the incidence of invasive breast cancer in the LCIS group, IF you assume that PBMs reduce the risk more than watchful waiting/antihormonals for LCIS patients.  This may be intuitively obvious, but I don't know if it has been shown in published studies.  The numbers that I've read have been so small that its hard to get a significant difference between the groups, but I haven't seen good studies with large numbers.) 

About 65% of the DCIS patients received radiation, and about 3% of the LCIS patients received radiation.  64% of the DCIS patients had a partial mastectomy, 34% of DCIS patients had a total mastectomy, and 92% of the LCIS patients had a partial mastectomy.  (Of course, as stated before, the LCIS women who had total mastectomies were excluded.)

Among DCIS patients, incidence rates of ipsilateral and contralateral invasive breast cancer were 5.4/1000 person-years and 4.5/1000 person-years, respectively; and among LCIS patients, incidence rates were 7.3/1000 person-years and 5.2/1000 person-years, respectively...In addition, all LCIS cases treated with a total mastectomy were excluded from all analyses (n = 648, 12.6% of the total). This exclusion was made because data on whether or not women were treated with a unilateral or a bilateral mastectomy was available from SEER only from 1998-2002. Data from 1998-2002 indicated that 65% of LCIS patients treated with a total mastectomy received a bilateral mastectomy. Thus, given the high proportion of bilateral mastectomies occurring among LCIS patients and the finding that those receiving this treatment have an extremely low risk of developing subsequent invasive breast cancer, we elected to exclude all LCIS patients treated with a mastectomy. This same criterion was not applied to DCIS patients because only 11% of DCIS patients treated with a total mastectomy received a bilateral mastectomy based on the 1998-2002 SEER data

http://onlinelibrary.wiley.com/doi/10.1002/cncr.21864/full

Some limitations: SEER didn't collect data about hormonal use, family history, mammographic surveillance, or body mass index.  They can't know if cases were mis-classified.  Probably few if any of the LCIS patients used anti-hormonals, as the tamoxifen studies I have found started in the early 1990s and went for 5 years. http://www.ncbi.nlm.nih.gov/pubmed/11469927 

Li et al  showed data about the stage of invasive cancer for the DCIS patients, but not the LCIS patients.

Best wishes, Maria! I am certainly NOT trying to advocate one treatment choice over another.   That is a very individual and private choice.  I am only trying to find studies that might pertain as to potential outcomes.  As always, I believe it is good to use as much 'evidence-based' medicine as possible.

Note that the class  'DCIS' covers a wide variety of DCIS 'personalities', and this study does not describe types of LCIS.  I think PLCIS was first described around the 1990s, so it is not possible to separate LCIS from PLCIS for some years.  Some claim that before e-cadherin staining was in regular use (which can help differentiate between PLCIS and DCIS in some cases), some cases of PLCIS were probably classified as DCIS.  This is besides the long standing differences of opinion about classifying ADH vs DCIS vs ALH vs classic LCIS.

I think its only fair to try to present both the limitations of studies as well as their strong points.