LCIS and Prophylactic Mastectomy

Bukki

hello ladies, I just joined this site after reading the posts from you awesome ladies I felt so much better about what I was going thru. I wish I had found this site back in Dec. I had BPM 12/30 and had expanders placed that have been giving me some strange s/e and discomfort, now that I know I am not going crazy I feel so much better. I was dx with LCIS RT and then path report after surgery LCIS /ADH bilateral. I am happy I made the decision for BM and am just waiting to get my exchange in next few months.

Reading some of these posts have made me feel like I am in the presence of some very amazing and strong women.thanks for being there...Elaine

Stonebrook108

Elaine

I had LCIS and on 1/9/09 had a PBM with direct implants put in not expanders. Since the swelling has gone down I'm getting use to my new "breasts". They are definitely feel "strange" I'm still numb from the surgery so that's one reason. The other is they heavier then normal breasts. All in all I'm so pleased and thankful to have them. I hope all goes well with your exchange.

Ann

Mykidsmom

Ann - That's interesting. Are the saline implants really heavier than normal breasts? I didn't realize that. The numbness is weird, isn't it. Take care. - Jean

Stonebrook108

Jean,

 I have silcone implants not saline. They do feel heavier then real breasts. I notice it mostly when I'm in the shower and sometimes during the day if I move a certin way. Maybe also because the implants are a bigger size then what I was before surgery.

 I know you have expanders. Do you think their heavier then normal breasts? 

Hope your feeling well,

Ann

Mykidsmom

Ann - Yes, I have expanders. It is hard to say whether they are heavier. Everything becomes the new normal. But I don't think so. Sorry, I knew you had silicone, I don't know why I had saline on the mind.

By the way, I added your name to our Exchange City list as not needing an exchange- but having silicone implants. I know there are a lot of ladies out there that are very interested in your one step procedure. You may get some PMs.

How are you healing? Take care. - Jean

smi5mom

Hello-I just found this site and hopefully someone has some suggestions for me.  I had my PBM in July 1999, with tissue expander than had saline implants put in.  Having the surgery was the best health decision I've ever made.  Last year I started to have a few problems with my left implant.  My PS diagnosed a capsular contracture. I said lets exchange it out.  Well to my surprise my insurance has denied coverage.  My school district changed insurance companies in 2003 and the new company has said they wouldn't have covered the original surgery.  So I've been appealing since Aug.  So my questions is had this happened to anyone or does anyone have suggestions as to what I can do to.

Thanks and take care,

Nancy

Stonebrook108

Hi Jean,
Thanks for added my name to the Jan. exchange list.

 I feel great this week, 5wks. post op. I even went to Atlantic City today with my sister and our cousin. We had a blast and laughed all day. They both said who would have thought I would be out gambling 5 wks later.

So did you decide if you going with saline or silcone?

Take care,

Ann

Mykidsmom

Ann - I am definitely leaning towards silicone. I think that's what my PS prefers as well. I just don't know any other details yet. I am so glad that you are out and about. You must be feeling better if you went to Atlantic City! Congratulations!

Nancy - I don't know what to say about your insurance, but I believe there is some kind of law regarding post mastectomy reconstruction. I think insurance companies HAVE to cover it. At least in the US. I forget that we represent ladies from all over the world. I would talk to your PS. He/She shoudl be able to give you the specifics. I wish you luck! Sometimes you just need to keep at it, insurance companies sometimes make payment difficult.

Take care all. - Jean

seltzer

I have been gaining so much from reading your story.  I went through a series of confusing ultrasounds, mammogram magnification views and needle biopsies in Nov.-Dec., then had an excision biopsy in Jan.  Am meeting with the PS for the first time on Monday. 

Here are some questions I would love help on:  my path report says lobular neoplasia I and II

(are these stages or grades or??).  I am requesting a PBM because tamoxifen doesn't sound like a good fit (family history of strokes plus uterine polyps), and screening is hard-- been having mammos since age 30, always told I have dense breasts, "busy" breasts, complicated breasts.

What surprised me at my last meeting with the surgeon was that she wanted to do sentinel node biopsies on both sides.  One minute she is advocating watchful waiting and alternating mammos MRIs every six months, the next she wants to do SNB on both sides.     I have had very sore lymph nodes on one side for 20 yrs from fibrocystic disease (I think).  But I would really like to avoid the SNB after reading about pain, etc. 

I am a keloider and also have recently had lots of hives, skin problems, so I am very worried about how my skin will do from the PBM.  After the excision biopsy, my skin blew up everywhere there had been tape or glue (EKG pads, etc.)  Had 3 cesareans and lots of trouble on the scars. 

Had hoped for saline implants, no expanders, but now am not sure that is even feasible.  

How should I prepare for this meeting with the PS?

I am incredibly grateful for this site and glad I finally got the nerve to register and post.  

Mykidsmom

Seltzer - I could relate to so much of what you wrote, but unfortunately I cannot help you w/ the SNB and the lobular neoplasia I and II. I am not sure what that is about if the dx is LCIS. I had the same issues w/ tamoxofin you listed, and the same old busy breasts you described. Sorry I can't provide more information. Best wishes. -Jean

Stonebrook108

Seltzer,

My BS said that the new name for LCIS is Lobular Neoplasia and that it's not cancer. Mine was stage 0. I did have PBM. on 1/9/09 and this week marks the 6th week and I feel great My BS did SNB on both breasts during the PBM and they can back clear. You should tell your BS that if you decide on Bil Mast. then you'll do the SNB

  I didn't have tissue expanders I had direct implants put in. I wasn't looking to be huge and my PS said he could put in implants and that saved me having another surgery. He used AlloDerm to hold the implants in place. I have one more surgery for nipple reconstrution and then I'm done. What a relief.

Send me a private message if I can help you with anything.

Best of luck to you,

Ann

Mykidsmom

Ann - I am so glad that you are feeling great! That's fantastic. And only one more surgery, that's even better. Take it easy, even though you feel great, you are still healing inside! Take care. - Jean

psalmist

All,

This is a great thread for women struggling with treatment for LCIS.  Like most of you, my BPM was the result of other attempts at treatment and I'm very glad I went through with it.  No regrets at all.  They ended up finding a little ductal cancer hiding in there, so I'm DOUBLE glad I went through with the surgery.    I've already decided on silicone implants (hoping they will be lightweight).   

Ann, glad you are feeling so good.   My PS has taken me through the expansion process (exchange in March) but he tells me he is leaning toward doing more one-step reconstructions.  Congrats that you are so far along in the process. 

Jean, thanks for keeping up with the surgery dates.

Bless all you ladies!  "This too shall pass!"

Mykidsmom

Psalmist - I know when I began this journey you were one of the ladies that helped me along the way. Thanks for everything! Now we are both looking forward to our exchanges. Pretty soon we will be w/ Ann and looking for our nips and tats. Life does move on! Take care! - Jean

psalmist

Jean -

You take care, too!  I'm so looking forward to hearing from you post-exchange.  Love your avatar.  It is especially appropriate today, as I am looking out the window at snow.  Best wishes to you!

Stonebrook108

Psalmist,

Glad to hear your feeling well and that your exchange is coming up soon. It's 6 weeks today that I had surgery.I can't believe it. I feel great and starting to work again next week. I don't know how I will ever get up early again after staying home and sleeping late for 6 weeks..LOVE to sleep late.

Jean, I hear your getting snow AGAIN up by you?? I'll go back upstate in the spring..lol

Be well ladies,

Ann

Mykidsmom

Ann - I am starting to get my business back up and running and know what you mean about having to get back into the real world. In some ways I have really appreciated this break in the action. Especially given the situation at my last job when I was planning my surgery. Good luck at work!

psalmist

Ann and Jean,

I am looking forward to taking off a week from work and being waited on, sleeping for a couple of days, and then - when I feel good again - going bra shopping!!!  : )  Hey, ya gotta plan in some fun, too.  Right?     This is my last week of dressing these rock-hard foobs.  I am so excited to wear something without a jacket over it to disguise the unevenness or a scarf tied around my neck to hide my huge and high honey buns.

PSK07

seltzer

Your surgeon will want to do SNB because of the mastecomy. Should (heaven forbid) something invasive be found in the tissue, they'd need the SNB results. If you had a mastectomy w/o SNB, it can be difficult (some say impossible, but I don't know for sure about that) to find the SN after the fact.

There aren't grades with LCIS because it's not cancer. It can be referred to as LCIS or Lobular Neoplasia. They mean the same thing.

Good luck getting through it all. Take care.

taraleec

Hi Jean, Hope you're well.  I sent you a Private Message.  Take Care

kdebartelo

I was diagnosed with LCIS in my left breast on March 6 2009.  I am a nurse and do understand most of the medical terms.  Im 40 I  have 2 kids and dwell on things, I do not do well with the unknown.  I can hardly function and know i would never be able to tolerate the testing the this the that.  Its driving me nuts.  I have a appt. with a Dr. at the medical college of wisconsin milwaukee wisconsin (froedert).  I have no known family hx. of bc, have very dense breast.  My LCIS was diagnosed when i had a breast reduction.  Sometimes i wonder why did i ever get the reduction i would have maybe been better off not  knowing.  I have yearly mammos since i have been i think 26yrs old talk about proactive like i said i get carried away.  I 90% am leening towards a double masectomy with implants right away.  I need this behind me.  I hope this dr. doesnt talk me out of it.  Im the one who has to function everyday not him.  I dont want to wait until i get IBC or ILC which is even harder to detect.  Tell me im not crazy and Im making a great decision.

Anonymous

I just sent you a PM.

Anne

floridian

Hi all - 

According to my research the difference between ADH and DCIS is simply the amount of tissue found. And so, by definition, a core biopsy will only find ADH because of the smaller sample and then during surgery it is redefined as DCIS if a larger amount is found. I would guess that the same is true for ALH and LCIS. Perhaps that is part of the reason for the new name.

I think it is terrible for the risk or worry to be downplayed by a doctor and in my experience the women doctors that I have seen that have had breast cancer themselves are much more concerned with finding it early and taking action than male doctors or women who have not been affected. I am so glad that everyone has the support here among people in similar situations.

Best wishes to all of you - to me peace of mind ranks right up there with good health. 

Joanie207

Foridian,

You put it so nicely, "it is terrible for risk or worry to be downplayed by a doctor.....". I was diagnosed with LCIS, ADH, ALH in November '08. Had an oncologist at well known Boston Cancer Center (high risk breast center) tell me to "come back when I had a real cancer".  I went home and decided to continue the course with vigilant follow-up until I got on a rollercoaster of needing more biopsies. I figured I was probably good for a few years.

Then earlier this month my local breast surgeon looked at the mammogram/ultrasound and decided I needed another biopsy. Although it came back negative, that has been my wake-up call. I am scared to death, but I will schedule my PBM for late September. While waiting for my biopsy results I realized that if it came back positive for cancer, I would then be in a position of not being able to 'call the shots' and would lose control. I would then most likely have to have surgery and radiation and/or chemo. I figure if I can avoid the radiation/chemo treatment, then I should move forward with the surgery. I just don't know that I can pick up the phone and tell them to go ahead and schedule it. I need to get this behind me, but it is pretty scarey. Luckily we all have this site and the support of others who have walked this road ahead of us. 

Mykidsmom

ChinaMom - Hugs going out to you!!!

tweekerbeeker

ChinaMom, picking up the phone is the hard part. But you list very good and valid reasons for doing what you plan to do. You may want to hire a therapist to help you through htis-I found it very helpful.

When you have doctors that you really love-both BS and PS-it makes it easier. Be sure you get all the info on recon. and get what YOU want. I found that the bilaterals were not nearly as bad as I had anticipated. I look and feel much like my old self.

Good Luck!

Nancyld

ChinaMom - I know this is a difficult decision but please know that you will be okay.  I was diagosed with extensive LCIS in June of 2008 - Had a lumpectomy in July 08,  My BS was unable to get it all and I made the choice to have the Bi-lateral Pmx.  It was performed in Oct 08, I got my implants in Jan 09 and nipples just a couple of weeks ago.  I am feeling better that I have felt in a long time.  The masectomy took me 3 weeks to recover enough to go back to work and I was off work a week with the implants.  The masectomy was not as painful as it was tiring and only had drainage tubes a week.  As long as you have doctors you trust you will be fine.  I had a wonderful BS and PS.  If you have any questions I would be happy to answer what I can. 

Be sure the path you choose is the one you want and not what others think you should do.

 Hugs!!!

Stonebrook108

Hi Ladies,

 Since I'm the one who started this thread I just wanted to let you how I'm doing. It's now been over 4 months since my PBM and I feel great. I'm still glad I did it. Having the choice of getting something precancerous out before it "might" turn into a cancer down the road was a no brainer to me.

All my Dr's said the LCIS HAD to come out. So, instead of a biopsy I choice to be done with the LCIS once and for all and had the "Big Surgery" as I called it. I couldn't bring myself to say bil. mactectomy.

 Why would I want to put myself though that stress with all the tests every 6 months. Also possible biopsies too.I can see from what all you ladies have written how much stress your under. It's a personal choice and a VERY tough one to make. It wasn't half as bad as I thought it would be. Feel free to send me a PM if I can help any of you ladies out.

Be well,Ann

taraleec

Hi Ann (Stonebrook108) - So glad to hear you're doing well and feeling great.  That gives inspiration.   Take Care,     Tara

Stonebrook108

Well, I'm finally finished with all of my reconstructive surgeries!!!  I had my nipple reconstruction done last week and they look great. If anyone needs the name of a great PS in NY send me a PM.

It's been a long 8 mos. since my BPM and I'm still glad I did it. I would not have done well watching and waiting and being on Tamox. Some ladies can do thats not for me.

Take care,

Ann