LCIS & PBMX...Moving forward

shabby6485

After being diagnosed with LCIS last month, I decided to go with a mx (nipple sparing with implants). I found great doctors (thanks to LISA) and am scheduling for late August/early Sept.

Now that that huge decision was made, I find myself obsessing on two things:

1. am I waiting too long?  

2. are they going to find some occult cancer hiding in there?

I am drained from this and my mind is constantly reeling.  Again, I am back to researching stats which only makes me obsess.

ok....i feel better now..... 

dmarie71

I was diagnosed in October and I am having my NSBMX in May...7 months after diagnosis.  I am having the same worries....Did I wait too long?  Will they find something worse lurking in my dense/fibrocystic breast tissue?  Will I regret my decision?  This really is enough to push me over the edge.  I really feel like I need to do this to put it all behind me and move on with my life.  My PS has reassured me that I am in good hands.  He looked me in the eyes and said to me on Fri, "Stop!  Stop, stop, stop worrying.  You've done your homework.  You've found us and you are going to be ok."  It took the edge off of my panic but I keep letting my mind wander and I find myself mostly terrified of all the unknowns.  We just have to have faith...faith in our medical team, faith in our own strength, and most importantly....faith in God.  We can do this!

mmswarowski

I was diagnosed in July and had PBMX in Feb...all of my path reports (including SNB) came back fine...I did worry that I waited too long...but that was not the case. I wish you well Shabby and have you in my prayers!

loriio

Shabby- I was diagnosed around the same time as you.  I am still in the decision making process but I'm leaning toward PBMX.  I might actually have my done in late June, mainly because my mom can come and help during that time.  I understand about being worried about something else lurking.  My original biopsy was on the left, but there is a small lump that didn't show up on mammogram or ultrasound that I can now feel.  The BS felt it as well and wants to biopsy it-if I don't have the PBMX soon.  I met with a medical oncologist about tamoxifin, but because of the grade of LCIS and atypical cells, he concurred with my BS that PBMX would be the best route for me.  I go back and forth with what i want to do.  I am meeting with a different BS next week for a second opinion.  I am also meeting with a PS soon.  I know my BS won't recommend nipple sparing because there was a cluster of atypical cells under my left one.  Part of me wants to wait and see, but if something did develop, I probably wouldn't be able to forgive myself.  I'm like you-mind reeling and DRAINED!!  Best of luck to you all!

annievan

Wow - I can certainly relate to the feeling that I'm obsessing.  I was diagnosed in December and am leaning towards late June PBMX .  Maybe we'll be going through this at same time, Loriio. . .? My date has not been set yet, but I've given the 2 surgeons' schedulers the go-ahead to discuss late-June date.  That's as close as I've come!  It's all surreal, really.  Do you all feel that way? 

Having the time to figure it out has been nice, but a mixed bag.  On the one hand, I can't imagine how awful it would be to be doing all this (surgeons' appts., learning about ALL of this. . .bc, masectomy, risks, etc) in the quick turnaround that happens when the girls get invasive cancer diagnosis.  I know we're blessed.  But it does allow for lots of obsessing.  I feel like I'm digging for info at every turn.  I figure, I've been given this time, so I have to learn every little thing about pre-op, post-op, get in shape, etc. etc.  It's hard to just go on with life with this looming.  Do you, Shabby and Loriio feel that way.  Did those of you who have already had the surgery do this as well?

I know I must be driving my husband crazy, as I'm always reading something new.

 Just wanted to say how I appreciate this forum.  I have yet to meet another person with this same diagnosis (have talked with one, whom I met on this web-site).  The ps and bs offered to get me in touch with another patient or two who have been in my shoes, but so far, they haven't done so. . . I think there are just very few of us.  I'm sorry you ladies are going through this, but it helps to know there are others who are (or have before) been on this same path.

carol57

I had about three months from diagnosis to pbmx/recon, and my post-surgical pathology was clear except for the LCIS. Waiting can indeed make you crazy, but it also gives you time to increase your fitness, which is a huge plus for recovery from surgery. Also, if you are significantly overweight, losing some pounds helps remove some surgical risks.  No one likes to think about weight loss during a stressful time, but I know that in my case, fear of being out of cardio shape during a long surgery was very motivational!  So--the time lag is a curse, but it can also be a blessing.  My recovery was pretty easy, and I attribute that to making fitness my priority #1 during those pre-surgery months.  Best wishes to all of you.  Making your decision--whether yes or no to pmx--is really the first step to taking charge of this crazy condition.

Carol 

shabby6485

Carol  What type of recon did u have?? Just curious because you said your recovery was pretty easy.

carol57

Shabby, I had a diep recon, immediate with my skin-sparing pbmx.  My recovery was pretty easy. I compare it to the two C-sections I had (30 and 27 years ago).  The diep recovery was longer, but not more painful than those surgeries. Diep surgery means you have some serious initial pain, which is controlled in the hospital with whatever you need to make you comfortable, but I was able to stop using narcotics on the morning of day 3.

There's a lot going on in the recovery--it takes two weeks or so before you can stand fully upright, and that invites annoying back pain, but I found ways to stretch the lower back without creating problems for the abdominal incision, so again, not so bad and in my case, easily dealt with.  My family and friends were very surprised at how well I bounced back from the surgery. I took lots and lots of naps for the first three weeks or so, but between naps I was up, about, and felt pretty normal. Of course I was not lifting heavy weight, was walking but not at an aerobic pace for several weeks, and I happily delegated strenuous work such as garden maintenance.  

I had some skin necrosis, so healing of one breast took a long time, but that issue was quite local and the only restriction it imposed was no swimming and no paddle sports, out of fear of the fragile wound being exposed to unfriendly bacteria.  I am very happy I made that reconstruction choice, but of course it may not be the right choice for everyone.  

All the working out pre-surgery made recovery much easier than it would have been otherwise, and my early emails included one to my trainer where I thanked him profusely for making me do so many weighted squats--because using my legs to propel me off of chairs and out of bed made all the difference in the world in being able to isolate and protect the sensitive ab region in the days just after surgery.

I think that making the decision on whether to do a recon, and if so, what kind, is every bit as stressful as deciding whether to do pmx after an LCIS diagnosis.  In my case, the pbmx decision was very easy, given family history, but it did take me a while to figure out which recon route to go--including realizing I could not rely on my initial PS to give me accurate information about a procedure he does not do (i.e. anything microsurgical).

Best wishes if you are wrestling with recon alternatives!

Carol 

shabby6485

Thank you, Carol.  Very helpful info.  I am so happy all turned out so well for you.  

Mykidsmom

Ladies - As someone that went through all this in 2008, I can tell you that you will get through it and it won't seem so bad after it is all behind you. Really! I was totally obsessed w/ all of it in 2008, I could not decide what direction to go. But once I decided, did it and moved forward it's like it never actually occurred to me. It's just a part of my past history, not a part of my day to day. You are okay to give it some time, you need to be sure that PBMx is right for you. In my case the left breast was filled w/ other abnormal cells and the right breast was getting started that way, so I was so glad I made the decision that I did. Recovery from the PBMx was a little difficult the first week or so, but every week you feel better and more able to do normal things. And it gave me some time off work to reflect on myself a bit. Recovery from the exchange and nipple grafting was no big deal. And honestly, at three years later I hardly ever come on this site and rarely think about the fact that my breasts are not the ones I grew naturally. Hugs to all of you that are dealing with thest tough decisions. Take care. - Jean

beacon800

I had this discussion with my own surgeon regarding waiting too long.  He said if I waited past three months (though my memory is not totally sure, it could have been 6 months, but definitely  not more) then he would repeat the mammos and probably the MRI before we did BMX.  Since we were anticipating doing the BMX without a sentinel lymph node biopsy that may have added to his conservative stance on the re-imaging if we waited past a certain point.

That was enuf for me - last thing I needed was to go thru all that crap again and go crazy over it.  Went ahead and never looked back.  Clean path and worries went away.

annievan

Thank you, ladies, for your very encouraging messages to those of us making decisions and waiting.  It is so helpful to be reminded that life will be back to normal at some point. . . and to get that motivation to get moving and try to get in tip-top shape before. . .