LCIS and Prophylactic Mastectomy

Cheryl54

I am posting here after a hiatus of more than a year.  I am nearly four years post bpm, and I have never regretted my decision.  I had an extensive family history of bc, all varieties of atypical hyperplasia, LCIS, etc.  I had the bpm and expanders inserted in July 2006 followed six months later by an exchange to silicone implants. I later had nipple reconstruction.  My final path report was a parade of horrors and I feel I narrowly averted disaster.  I haven't had a moment's regret over my decision; in fact, I've been nothing but happy.  No more worries, no more what if's, etc. I was able to stop obsessing about what supplements to take, how much broccoli to eat, etc.  No more mammograms, sonograms; no MRIs, no drugs, etc etc etc.  While this is not the right decision for everyone, it was the right one for me.  I feel liberated from 20 years of worry. My mother had bc in both breasts and died from the disease.  I loved my breasts but I loved my life more.  Now that I am four years post-surgery, I scarcely think about my breasts being "different."  They are simply my breasts -- silicone filled but cancer free.  I am not advocating this approach for all, but it is definintely something to think about.  For me, it was nothing but a good thing.

Stonebrook108

Cheryl54,

That's just how I feel my decision to have the PBM. But, it isn't for everyone. Some people can handle the stress of monitoring and taking Tamox. that wasn't for me. Now that it's over there are times that I don't even think about what I went thru. I don't have any regrets just peace of mind.

Stonebrook108

It's been 2yrs now since my PBM due to LCIS. I'm still glad that I chose to have the surgery. I can't even begin to imagine the stress I would have been under having to be tested every 6 mons. To me this was easier in the long run.

If I can ever help any of you with any questions you have please just send me a private message.

bdavis

I feel so glad to read this thread... it doesn't all apply to me (I don't have LCIS) but I have many other things...12 years ago had a lumpectomy for ADH and then 2010 another lumpectomy for IDC... but my breasts still have hyperplasia, metaplasia, adenosis, papillomas (all benign) but who says I don't still have ADH?? No guarantees... and BOTH breasts have BiRad 3 things that need follow up.. I just don't think I can take it anymore... I am doing chemo now, am suppose to have rads this summer and then tamox for 5 years. I need to decide what to do before rads... so before the end of chemo... and am getting genetic testing Feb 7th... maybe that will help (if its positive, I know exactly what I'll do)

Both BS and Onc say its my choice and they understand, but don't think its necessary... but I'm the one who needs to sleep at nite.. btw... onc says my odds of getting cancer again are about 30% with all my abnormal stuff, even with rads and chemo.

Anonymous

bdavis-----since you had invasive bc (IDC), it basically "trumps" all the other "stuff" (including any ADH) and your treatment is directed at the IDC. Was the area of ADH in the same area as the IDC? The lumpectomy and the radiation treat the area locally where the IDC was, and then the chemo is a systemic treatment, which should take care of anything else that is there, including any ADH. Have you had a breast MRI? You might want to consider that, in order to see if anything else is detected, but I would think the chemo would have everything covered.

Anne

bdavis

AWB... I specifically asked my onc if the radiation and chemo would resolve any lingering ADH and he said no... and yes, I had an MRI and 2 biopsies that came up with benign, but something that needs to be watched... everything has been in the left breast, but there is some Birad 3 in the right breast as well... My onc says the rad and chemo will resolve the cancer, but not the hyperplasia, papillomas etc... but Tamoxifen should help with some of it... He said having some additional abnormal cells does increase my risk from about 15% for a normal person to about 30% for me (cancer survivor and benign stuff that could present as NEW cancer)

Mykidsmom

Bdavis - I am so sorry you are going through all this. I can tell you that making the decision is MOREdifficult than living w/ the surgery and just plain living your life afterwards. My heart goes out to you! - Hugs!! - Jean

msippiqueen

Good thread, I've just read all of it.



The decision to have a mastectomy or frequent testing should be a woman's choice.



The decision is made with lots of unknowns. Makes the choice exceedingly difficult and so, so personal.



My BPLM April '10 was medically indicated and personally desired. Other breast changes, lack of convenient follow up care and having experience as a cancer nurse factored in, but AHL and or LCIS was enough.



Educated professionals grapple with recommendations for screening, diagnoses, treatment,

medications and opinions of what atypia means, whether and when LCIS becomes ILC (the sneaky cancer, hard to detect) and on and on.



This was evident over and over again on this thread.



Each of us will reach a comfort level with our decision, sooner or later. It's tough being in agony over which choice to make. Our choice may be proven wrong at some point and we then must live with the risk and consequences of our decision.

Kimber

Bdavis, I am sorry you are faced with this.  It is a very personal decision and one that can only be made by you.  In my case, I have never looked back.  It does not occupy my time or my mind.  I am at total peace with my decision and I can say that I made the decision, NOT CANCER.  The constant worrying was not worth it to me.  My best to you in making this decision and with your treatments.

(((((HUGS)))))

Kimber

Stonebrook108

Hi Ladies,

Had my 2 yr checkup with the PS today and he said everything is fine. That's a great feeling. Still glad I chose to have a PBM and be done with the LCIS.

God bless Dr. Ron Israeli he's the the best.

Hope all of you are feeling well.

Take care

Anne

Mykidsmom

Hey Stonebrook - I also had my 2 year PS check up last week. She told me that I might never even need new implants during my life time. She says the latest ones appear to be able to last 20-30 years. That would be cool! I am glad you are well. Take care. - Jean

Stonebrook108

Thought it was a good idea to "bump" this up for the new girls.

Best of luck to you all

Stonebrook108

Hi Ladies,
It will be 5yrs in Nov. that I found out I had LCIS. Had a PBM with one step implants in Jan 2009 and it was the best decision I made. "I got it before it got me" is how I look at it.
Thought it was a good idea to "bump" up these posts for the new girls.

Best of luck to you all and please send me a PM if you to chat.

Ann

upcreek

Congrats Stonebrook1 on your five years. My surgery was almost four years ago and was the right decision for me.

Thanks for your support when I was making the tough decisions!

JimmieBell

My story is different, but it started with LCIS.

In 2008 I had a benign lump removed and LCIS discovered. The original surgeon was adamant that I have more tissue removed and possibly radiation, but everything I read said take Tamoxifen watch and wait. No history of cancer in my family, me very vibrant and healthy. I followed the advice of my oncologist.

After almost 5 years on Tamoxifin I had a lump rise and then disappear on that same breast. All mammo and sonograms were clear, but after a few months I noticed a slight thickening of the tissue. Biopsy showed Invasive Lobular Carcinoma. Because I'm poor and on Medicaid I was only allowed one CT scan. My new surgeon looked at the bones because that's the most likely place for spread. All clear.

Early in 2013 I underwent a double mastectomy, which was not difficult at all for me. My breast tumor was just over 2cm so I was stage II. Before chemo I enrolled in a clinical trial and they paid for an abdominal and chest CT. Wham. Two liver tumors, each over 3cm. Stage IV, quick as that.

Here's what I did not know: Lobular cancer is very difficult to detect. Mine never showed up on my scans. Even CT scans don't always show it. My clear bone scan was later updated with 4 spots of calcification after months of chemo, showing that I had small bone metastesis that had been destroyed. The surgeon said my liver tumors had been there at least two years.

So watch and wait isn't what I thought it was.

If I had a time machine I would listen to the original, old fashioned hick surgeon, and have a bilateral mastectomy right after LCIS diagnosis. It's too late for me, but I hope my story will help inform the decision of someone who is early stage. Then you can live your life, instead of fighting for it, like me.

beacon800

JimmyBell I am so sorry to hear of your journey to a stage 4 dx. Invasive lobular IS very hard to detect. It sucks that it happened this way. Your post is so exceptionally well written. A lot of times we LCIS patients are dismissed as having "nothing to be concerned about". Well that is clearly not the case.

I did get a BMX after my diagnosis. It was very controversial in my hospital. My oncologist thought it was overkill, the radiologist took me aside privately and told me she would do the same in my shoes. My surgeon went along with it, but probably would rather not have done it. There are no clear answers for us and that is the most frustrating part.

beacon800

Stonebrook - so good to hear from you. You might not remember, but the day of my surgery you PMed me a kind message about your experience. I read it while in the waiting room for the procedure. It meant a lot to me that day and still does. It was very kind of you, very timely and really helped get thru that tough day.

Stonebrook108

beacon,
I do remember you. Good to hear from you as well. I'm so glad what I wrote to you helped you in a way. Without a doubt that is the toughest day anyone would have to go thru. I STILL would do it all over. To feel this good and not have to worry about if or when it might turn into a full blowen cancer.
My PS Dr Israeli said to me during our consult. " LCIS, This is a gift" "You have a chance to get it taken care of before it could turn into something more"
He was right and I'm glad I did it.

Stonebrook108

JimmieBell,

Thank you for posting your story in this thread. I'm so sorry to hear what happened to you during the watch and wait period. I could have never done the watch and wait thing. I was a emotional reck once I heard I had LCIS and it had to be removed.
The thought of "maybe" every 6 months hearing more bad news would have slowly killed me. To me it was easier having the PBM then going thru that fear every 6 months.


I'm sure your story will help many ladies to think about what they want to do.
I will keep you in my prayers.


Take care,
Ann

Shelton

WOW, so very sorry to read this about you,, This is exactly why I am scheduled for my Prophylactic Mastectomy October 28th. Yes many say it is over kill and extremely aggressive, but my opinion is why would I not be aggressive.. My Surgeon said she would do the same thing if she were in my shoes.. There are too many unknowns with LSIC, I think of it as a warning or a "heads up" from GOD!! Yes I know, one may never get Invasive cancer in her lifetime or one may.. The latter of the two does not sit well with me...Have been down the biopsy path 5 times now on both breasts, I am settled in my decision now although it took me a while, research, talking to friends and family, I had one foot in and one foot out, but with the most recent biopsy I now have both feet in....

Char66

I too have put both feet into the mix. Planning a BMX in Jan '14 for LCIS and ALH. Have ran into some medical that call it too drastic-"save the breast tissue"-it is tissue but I am more concerned about living than preserving the "girls". Had an appointment with new primary care young female MD, during our meet and greet brought her up to date on what was happening in my life-I thought she would discourage me from the surgery-as I left she said you made the right decision-her mother had gone thru the same thing and said it was the right way to go. Finally felt someone in medical understood. Char

Shelton

Sometimes you just have to listen to you own heart and gut,, glad for you, my surgery is Monday so am getting ready.. OH BOY!! No more mammograms, Breast MRI's and NO MORE BIOSPIES!! Just peace of mind..

Char66

Shelton-will be thinking only good thoughts for you on Monday! Keep us updated how you are doing. Glad for you that the end is in sight. Char

Stonebrook108

Shelton,

Best of luck with your surgery you'll be fine.

Let us know how your doing when you feel up to it.

Hugs,

Anne

sofiegd

Hi,

I'm so glad I found this board. At my yearly mammogram I was told I had the option for an ultasound because of my very dense tissue. Because I have a strong family history and for many years dealing with cysts, plus many times I've had an ultrasound because the mammogram looked suspicious I went ahead with it this time too. The tech found something she wanted the Radiologist to take a look at. He did a core biopsy right then and called me that night saying it was ALH and suggested a surgical biopsy. In May I had the surgical biopsy and that showed LCIS. This was all happening while life was in a bit of turmoil since we were moving from NY to CA. So besides the diagnosis I had to leave my comfort zone of Drs. whom I was comfortable with. I am now in the San Francisco area and had visits with a new Breast Surgeon, Genetics testing, a new OB/GYN and a Breast Reconstruction Surgeon. I feel very lucky to have found this "team" of Drs. I am still awaiting the genetics testing but I have made my decision to go ahead with the Prophylactic Mastectomy. For me, with having so many issues over the years and my mom, two aunts and cousin having breast cancer, I feel like I have been given a gift to take care of this now. I read many of you have had implants for the reconstruction. I am leaning this way myself because I have had hernia's and I know I have a lot of scar tissue. I'm afraid the "flap" surgery might lead to more complications. Did anyone else have issues making reconstruction decisions? I think if I wasn't married I wouldn't have the reconstruction at all. My husband thinks this would be a crazy decision and I would feel badly not having the reconstruction.

Good luck everyone facing surgery and Jimmiebell with you treatments. I will keep you all in prayer.

Thanks,

Barb

leaf

I have not had reconstruction, so maybe I shouldn't even reply.

I would imagine most women who choose preventative mastectomies have conflicting feelings about reconstruction. I am sorry you are getting pressure from your husband about which choice you should make. Since there are some physical/medical considerations (i.e. your history of hernias) I would imagine only a breast reconstruction surgeon would be best to weigh in on that. I have heard that some breast reconstruction surgeons like to promote the type of reconstruction they do, but I'm glad to be corrected about that. As far as figuring out what you emotionally want, I think sometimes people go to an 'independent' person to help them decide which is best for them emotionally. Perhaps some friends can do this, but they would need to make sure they'd be able to listen to you and not pressure you. If you don't have a friend like that, some people go to a therapist to help them decide what they (the patient, not the therapist) want to do.

It is your body and your health. Its good to take the time to look at all your options. Since you have had the surgical excision, they have 'ruled out' anything worse than LCIS, or at least as much as they can rule it out. I would take all the time you need to decide which is best for you.

I hope people who have had personal experience will also reply. Best wishes to you.

farmerlucy

Barb - I had a PBM about a year and a half ago. I struggled with the recon decision for several months. My husband was very much a factor in my decision to have implants. I knew I'd be fine without it, and I was more interested in getting back to my life. After the surgery a surprise IDC was found. At that point I really wished I had not done the recon. BUT as things began to smooth out in my life and I had the exchange I was glad I had the recon. Of course it is not the same as the original breasts. The mx was not that bad, but the stretching of my pecs was very painful. Also I wasn't aware I'd have to be so inactive for the 5 mos to the exchange. Also be aware that since the implants are placed behind the pec muscle, everytime I flex my pecs the implants distorts. It is not a big deal, kind of funny really. The good news is that any breast tissue that remains is out front and center.

In hindsight recon with implants has turned out to be the right decision for me. They look great. I had them filled to the same size as before. Just last week I closed the recon chapter by getting 3d nipple tattoos with Vinnie Myers in Baltimore.

Honestly nothing is permanent. You can do recon later if you choose. Conversely the implants can always be removed.

Best of luck!

Shelton

surgery went well with a little more pain that expected. The emotional relief is incredible even at this early stage. So much build up and now on day 2 I can deal with the physical pain. Emotionally I feel 100% better. Thank you all for sharing your stories and wisdom. Being able to turn to this website has been such a help to me. I feel a real connection and am so grateful.

carol57

Barb, I did have immediate flap reconstruction with my prophy bmx, and I'm very happy that I did. I took LCIS to be an early warning signal and leaped at the chance to pre-empt the family disease, but I also wanted reconstruction from the moment I made my decision. My husband was supportive of my decision and would have been equally supportive had I opted for no recon, so no pressure there; I just wanted to feel as whole as possible. I was wary of implants and the diep recon has worked well for me, but many women are happy with implants and I'm glad we all have choices in whether to reconstruct and what method to use.

sofiegd

Hi

First thank you for sharing your experiences. It really helps to hear others stories. I found out yesterday that the genetic test came back negative and I am so grateful. Today I met with my breast surgeon and told her I wanted to go ahead with the PBM. After examining my breasts again she said she may not be able to do the nipple sparing mastectomy in 2 steps because my nipples point downward (she gave it a term but I can't remember what it was). What she is suggesting is breast reduction surgery first, then the mastectomy, then the implant. Has anyone heard of this? She doesn't seem to be a fan of doing mastectomies on LCIS patients. I have given this so much thought, it started back in March of this year. I just want it over with right now. She is forecasting the first surgery in January and then a 6 month waiting period before the actual mastectomy. She is going to set up a joint conference with the plastic surgeon to discuss her concerns. I'm hoping they have another suggestion instead of this 3 step procedure.

Shelton, I'm so glad your surgery went well. Continue healing and gentle hugs to you!

Barb