LCIS and Prophylactic Mastectomy

Mykidsmom

Ann - My PS told me to start touching and rubbing my "breasts" and some of the feeling would return - not all, but some. I know that at four weeks post-surgery they already feel better to me. But possibly that is ust me getting used to them. Apparently the pin and needles feeling I get once in a while is also a good sign that some feeling is coming back. I can totally relate about the bullet proof vest feeling. It is odd, isn't it? - Jean

Stonebrook108

Today I heard from my breast surgoen about my final pathology report. There was no cancer...YEAH Thank God. But, there was a trace of LCIS in the breast that had supposed to have been fine. I'm still glad I decided on a bilateral mastectomy. It's been one week ago today that I had surgery and I feel fine. I have tightness from the implants but no pain.

Ann

CAZ

My skin is still numb over the middle of both breasts (PBM 6/08), but the underlying muscle has sensation.  I'm glad you have this stage behind you, Ann.  It's a relief when they don't find anything scarier in the tissues.  I was bothered by how immobile the TEs were especially when they started protruding under my arm.  The implants are soft and mobile, and they can adjust alignment at the exchange surgery.  I hope your final drains come out soon.

Carol(AZ)

Mykidsmom

Ann - I am so pleased for you on the good path results. My path also showed abnormalities in the "healthy" breast. I had never had any calcifications or other indications of problems in that breast. But it was already there and on it's way. I so didn't want to go down that road again. I too am totally relieved to have selected this route. As for the implants, I am glad that they are feeling good and that you are healing well.

Carol - My left expander extends under my arm and is annoying, but tolerable. Sometimes I feel like these two balls could slide right out from where they belong. It is kind of uncomfortable. Did you ever get that feeling.

Here's wishing for warmer weather and great results for everyone - whether it is pathology reports or surgery. Take care ladies. - Jean

Stonebrook108

Jean,
I had calcifications in the "healthy" breast too. So, I knew it would be a matter of time before they found "something" there. So glad this is over.

Hope your feeling well too,

Ann

chris38

Hi Ann,

My name is Christine.  I was just diag with LCIS and ADH a week ago.  I am soooo very scared and frightened.  I have a 7 & 5 year old and they need me.  What made you decide to have this done.  After reading it states its not cancer just montioring.  Can you reply back with some feedback on why you took this route.

Thanks,

Christine

Stonebrook108

Hi Christine, I was diag with just LCIS and I was so scared. I had many calcifications and this was found in one of them after doing a core biopsy. Then the BS wasn't sure if there was something else behind it. I went to 5 differant DR's,

had my pathology slides read twice to make sure it was LCIS and then asked my GYN. "What do you think?" He said "I think your looking at multiple biopsies the rest of your life because when ever they see "something" their going to bioposy it" Well, that really helped change my mind.

I can tell you that I had a PBM  done on Fri.1/9/09 and I feel really good. My PS put in direct implants not expanders so I'm ahead of the game.  I also found out from the final pathology report that I had a small trace of LCIS in the other breast. So I'm VERY glad I chose that surgery. Not to ever have to worry again every 6 months waiting for test results and taking tamoxifin will be great .

I don't know half the stuff about LCIS that some of the other ladies in the chat room and on the discussion boards know about so go to the chat rooms and ask.

My email adress is Stonebrook108@aol.com email me and maybe we can set up a chat and I'll tell you what all my sister friends who are nurses in the O/R told me about LCIS

Ann

Mykidsmom

Christine - I made the same decision as Ann for the same reason, though there are a lot of ladies that chose close monitoring. Talk to your doctors and do your research and then make your decision. The good news is that there is nothing you need to do quickly. You have time to investigate and think things through. Best wishes my dear. - Jean

CAZ

Hey Christine,

So sorry you've had to join us.  As scary as LCIS and ADH are, the good news is you have time to gather information and come to a choice that is right for you.  I chose risk reduction surgery (aka prophylactic bilateral mastectomy), but many women on the LCIS board can share their knowledge of increased surveillance and medications.  Ask any questions of us and your doctors that help you come to your decision.  You are not alone.

Carol(AZ)

Anonymous

Chris----I'm one who chose high risk surveillance for LCIS and I'm doing fine over 5 years out. I just finished my 5 years of tamoxifen about 3 months ago and my SEs were minor, mostly hot flashes. I have digital mammos alternating with MRIs every 6 months and have CBEs every 6 months on the opposite schedule, so essentially I'm "seen" by some method every 3 months. I've had a few "spots" seen on MRI, but haven't had to have any further biopsies. (having LCIS doesn't automatically mean you will have to have frequent biopsies; I'm doing very well--the tamox is obviously working). My choice is not for everyone, but neither is the choice of PBMs---you have to take your time (and there is NO rush with LCIS as it is non-invasive and not life threatening), do your research, talk to your doctor about your overall risks and benefits, and come to your own decision, one which you can comfortably live with.

Anne

chris38

HI Kimber,

I just joined the support team.  My name is Christine.  I was just diag with LCIS and ADH a week ago.  I wanted to hear more about Tamifoxen.  Did you get many side effects from the drug.  What made you decide to go this way with the monitring and taking the medicatons.

Thanks,

Christine

chris38

Thanks Anne,

Everyone that I have been speaking too makes this so terrible to have LCIS and ADH.  They say because of my age of 38.  Did you have many side effects of Tamifoen.  Are you now done taking the medication with monitring or DO YOU take for life.  What did your BS say that made you come to your decsion on high surveilace. 

tHANKS,

CHRISTINE

Anonymous

Chris--I was diagnosed at age 46.  The tamoxifen is only for 5 years, but I will be doing the close monitoring indefinitely. All my docs (bs, onc, gyn, rad and pcp) were in agreement that bilat masts were too drastic for my situation--and that's even with my family history (mom had ILC). But ultimately the decision was mine. There are no cut and dry answers with LCIS, there is still so much controversy and the docs can't seem to agree. It's certainly  very frustrating--you really just have to do your own research and together with your doctor's advice, come to a decision that you can live with comfortably. I kinda 2nd guessed myself early on, but it does get easier as time goes on. Tamox has benefits for 10 to 15 years after stopping it; even so I'll be going on Evista soon for further prevention.

Anne

Stonebrook108

Chirstine,

You do have time to gather up as much info as you can. My BS told me about my LCIS the second week in Nov 08 and I told her I wanted to do something after Xmas.

I was told by my BS that I would need mammo, sono, and mri w/ dye every 6 mos.Because I had so many calcifications they might not see a cancerous tumor. My risk was as high as 65 to 85 percent of getting cancer. If I chose a bilatrel mast. it would cut it down to 1 to 10 percent.

Oncologist told me tamoxifin for 5 years would cut me down to 50 percent. For me that was a no brainer. Now I will have to have a mri every 3 years to check the implants and once a year go to PS and BS. I have peace of mind now. Like Jean and Carol said it's not a choice for everyone.

It was the WORST decision I ever had to make. But, now that it over I'm so glad I did it. 

Ann

Stonebrook108

Well, It's now been over 2 weeks since my bil -mastectomy and  I feel better each day. The drains are out Thank God.  I'm able to raise my arms a little more each day. The Dr said I could drive if I wanted to but, I think I'll wait. So, all said and done the surgery wasn' half as bad I expected it to be. Glad it over and done with.

Ann 

Mykidsmom

Ann - The good news is that you are past the worst of it. I found three weeks is the charm! I am so pleased that you are doing well! - Jean

PSK07

Christine - I was dx with LCIS and ALH a year after dx and treatment (lumpectomy & rads) for DCIS. While many women do opt for mastectomy, I, like Ann, have opted for Tamoxifen and increased monitoring. The monitoring will consist of alternating MRIs and digital mammograms every 6 months plus clinical breast exams.  I will be seen my my oncologist on a regular basis for both this monitoring as well as ensuring the Tamoxifen is working as it should and not causing any critical side effects. (The worst of the potential SEs tend to hit women older than myself, so I'm not too worried about them.)

I am 47, pre-menopausal, have two teen daughters and this is well within my risk tolerance levels. At some point I may change my mind, but for now I am more than comfortable with the monitoring. 

Hope you're able to work with your doctor/oncologist to find the solution that works for you.

kmccraw423

Ann - I am very curious about the direct implant reconstruction.  I asked my PS about it and he was not familar with it.  Can you give us more information?

 Since my expanders became infected I am reluctant to do it again and then go through an exchange knowing that at any time I could have another failure.

 Thanks.

lopalermo

Hi Ann (Stonebrook108),

Have you found out what your pathology report said after surgery?  Like you I'm glad I did PBM- My pathology report had both sides with moderate pre-ductal cancer and both sides extensive pre-lobular cancer. Within a span of 5 months the calcifications I had were changing- I shudder to think if I had just done what I did every year after a good mammogram and waited another year for the next one.  I'm still glad I did it, don't miss them, don't regret it and looking forward to changing out expanders for implants in May.  Have you thought about what type implants you will get?  I'm trying to find out what everyone else has gotten and which ones everyone likes best- saline,silicone and shape.

Lois 

Mykidsmom

Lois - There is a thread going on the Reconstrution page called "Exchange City." We are trying to get the experienced gals to give us new gals points on the types of exchanges and so forth.

BTW: My path showed involved all lobular in both breasts. Fortunately for me all was pre-cancer, but very involved. I was glad to move on from all this. No regrets here.

Take care ladies! - Jean

Stonebrook108

Hi Ladies,

Let me try to answer Kmccraw question about the direct implants. I have LCIS which is is a cancerous marker. So my BS said that bcause she was doing skin sparring that maybe the PS could do what they can direct implants. She recommened 2 PS and only one would do it.

So, instead of tissue expanders he went right to implants. I went to a PS who ONLY does breast reconstruction. Not all PS do just breasts. That might be why you PS does know about them. I had no problem with anything Thank God. My PS had me on antibiotis for a week so I wouldn't get an infection. Here's his web site www.Breastreconstrution.org  The last time I checked the page about direct implants wasn't up yet.

Lopalermo,

I did get my final path report and I did have a small trace of LCIS in the "good" breast. So, I VERY glad I chose the surgery and feeling very good. No regrets here just peace of mind. I even started to drive on Sunday and it's only 3 weeks after my surgery.

The implants I got are silcone. I can give you the name of them if you want. I have a date in April for nipple reconstruton so that the next thing.

Jean, I'll check out that thread. Hope your all feeling well.

Take care,

Ann

taraleec

Hi Ann/Stonebrook108 - I'm sorry to hear of your dx, I hope your feeling well.  I had (Left) LCIS with radial scar, intraductal hyperplasia and sclerosing adenosis, I'm 39 (I have a 3 year old son,raising alone) I was advised to begin Tamoxifen and have rads.  I want another child, so I didn't do Tamox but had rads. During treatment period, I discovered lump in my RT, had lumpectomy (both mammos and ultras didn't show lump/s in either!!) on RT (October) path came back as just adenosis.  In December in RT breast I feel more lumps (2) my GYN can feel,but surgeon can't! I had mammo and ultra and again show nothing.  My surgeon says he won't do biopsy again.  I'm having MRI next week.  I noticed 1 of your past posts and was wondering if I could email you so we may chat about what you know/heard and what nurses have told you about LCIS?  My home email is tootsietlc@neo.rr.com  my name is Tara.  Thinking of you, THANKS and Good Luck to you.

taraleec

Hi Jean/Mykidsmom, How are you?  Hope you're doing good.  Wanted to say thanks for recent advise regarding LCIS,  I'm having MRI next week and so afraid it's not going to show anything, 'cause there's definitely something in my RT that wasn't there before.  I also had let my original lump in my LT go for 2 years before anything was done.  I had severe cervical dysplasia and was so preconcerned with that (had 2 surgeries for that), then my GYN sent me to surgeon for breast lump.  Anyhow many thanks for advise and prayers.  THINKING and PRAYING for you. Take Care,  Tara

karen9516

kmccraw-I had BPM 11/19  with tissue expanders placed at time of surgery filled to 350 and have had on fill of 50cc and this makes me a full 36 C. My surgeon said she would do a direct implant exchange if I wanted but I wasn't sure if I wanted saline or silicone at the time. She suggested that I get expanders and see if I liked the saline because even though TE's are harder than saline implants they are saline and I could see how they feel. I am glad I did it this way because it has given me time to decide (I am getting silicone for sure!) and I think that after the swelling and trauma of breast tissue removal that it may not look as good with direct implant placement. Now my exchange should be easy. My expanders are settling nicely and I hope my results are good.

Mykidsmom

Karen - Interesting theory on the part of your PS. I don't think any of us would choose saline if we were told they were like TE's. I think they are much more comfortable, but I am not speaking from experience.

Tara - Here's wishing you all the best. The good news is that LCIS is stage 0. You should not have to do rads or chemo w/ this dx. Best wishes and let us nkow how things go! - Jean

Stonebrook108

Jean and Karen,

My PS and the BS told me that saline are harder then silcone. The PS said if you want to look like an "exotic dancer" you get the saline implants because their more round.

Take care

Ann

Mykidsmom

Ann - I think I want breasts that bounce. Sounds like silicone is for me!

Stonebrook108

Hey Jean

"They" don't bounce   lol  but, they are soft. Check some out in your PS office.
the brand I have are Allergen Natrelle. Check out their web site. www.natrelle.com

Ann 

CAZ

No bounce, but if I work real hard I can muster a jiggle.  Still, I'm thrilled with the feel and appearance.

Carol(AZ)

karen9516

She was not saying they would be as  hard as or have the shape of the expanders but she finds that her patients with saline have more ripples and they are definitely firmer.than silicone. She encourages silicone to all her patients even the breast augs. She likes them all around better.