LCIS and Prophylactic Mastectomy

mznulavie

These stories sure are making me think....I already posted a story in another thread yesterday and have been reading some great information (thanks Leaf), but now I am doing that dreaded "second guessing". All these women having prophylactic surgery for LCIS...and I refused even the Tamoxifen and look where it got me. In light of all this, perhaps this is a lesson for me in making the decision I face now . Here's my "post" from yesterday.

(Trying to come up with the "answer"...here's my history. In April of 2011 (I was 2 months shy of 40 and had just had my 2nd ever mammogram), some microcalcifications resulted in an ultrasound that day and a stereotactic biopsy a week later (left side). I was dx'ed with LCIS. My doctor repeatedly told me that LCIS was not cancer , but could put me at higher risk for getting actual breast cancer in the next 15 years. I have never been the type to panic. I was given the choice of Tamoxifen or vigilant surveillance ( mammograms and MRIs) every 6 months. I am very healthy and fit, on no medications and the side effects terrified me. I was completely comfortable with the lumpectomy (to remove LCIS) followed by surveillance. I felt lucky and happy with my decision. Fast forward to September of 2013...since lumpectomy, I have had one unremarkable mammogram and then in sept, my first -ever MRI. Next? Ultrasound biopsy. Then, dx of Invasive Ductal Carcinoma....on the other side! This prompted them to take another look at mammo that I had had after MRI....next? Stereotactic biopsy...result? Atypical lobular hyperplasia....right near the IDC.)

Last week, I had a lumpectomy on the right to remove the IDC as well as sentinel node biopsy. On Monday I meet with the doctor for all the findings. Then will need to decide what to do from here.

Stonebrook108

Barb,

I would forget about that Dr and get a new one who will do what you want done. You hit the nail on the head saying "She doesn't seem to be a fan of doing mastectomies on LCIS patients" Their not her breasts their yours. If she was faced with this choice maybe that would be her decision. Anyone I spoke with in the medical field told me. My cousin who is a PA "get rid of them" My GYN told me. "their a ticking time bomb", My PS to me "This is a gift finding the LCIS because it could turn into a cancer in the future" Even one of the nurses on the day of my PBM told me " your doing the right thing".

I got rid of them and have NEVER looked back. And would do it again in a heart beat to feel this good and relieved that the monster is gone.

Best of luck to you

Stonebrook108

Shelton,

So glad things went well for you. I told you you would feel better when you knew it was over. The pain will go away and you will be just fine. It took me about 3 weeks to feel really good. After the drains were out I felt great.

Best of Luck,

Anne

Shelton

the drains come out this Tuesday,, I have 4 in. Not too much pain just the discomfort from the drains so I take one pain med at night to help me sleep and stay asleep.. Saw my boobies for the 1st time last week, the look amazingly good,,, tight a bit but am happier than I thought I would be with the outcome. It was definitely the build up to the surgery that was the hardest part. 2 days in hospital for me.. I am tired a lot, so feel a bit guilty about resting so much.,, been walking a bit, even showed a house today, I am a realtor,, then I had to go home and lie down. Know I will get my energy back just being my normal impatient me...I wish I knew I knew more about how the body heals after this stuff and why it takes so long..,anyway, I would do it again and am not looking back, just forward..,oh yeah, and, no more biopsies and mammograms!!!!

Shelton

and if anybody is faced With the same decision (s) feel free to email me @ Lwaychief@cox.net

I would be happy to share my experience with u and answer any questions..

hlbrown

I am fairly new to this site and have only posted once, but i am so glad I found this website!

In short, i turned 40 and needed to have my mammo, well after more pictures, a needle biopsy and then a surgical biopsy, I was diagnosed with ALH, ADH and LCIS in the left breast. They also took more pictures on the right side, but felt no more testing was needed and to have a rescan in 6 months on that side. I also had a breast reduction five years ago and after all this i went back and found my pathology report from that it revealed ALH in the left breast then. I was never told of that pathology report.

Anyways, I was referred to an oncologist and was given the standard options, tamaxifan, mastectomy or survelliace. After much research on my one and reading post here, I have decided to have a double mastectomy. I know tamaxifan was not for me, and i couldn't do the wait and see and have tests every 6 months to a year would drive me crazy. Just the few weeks between tests and waiting for results was enough for me.

So I am scheduled for the mastectomy with immediate reconstruction on December 17th. I know it will be a process, but I am so ready to get this over with and move on with my life. I don't want this to consume me any more and not stress like i have been.

Any suggestions that would help me before, during and after surgery would be very helpful.

farmerlucy

Hlbrown - I worked out like crazy before my PBM. I had no trouble at all with the surgery or healing. Also, as a rite of passage my husband and I made a bust of my bust out of plaster of Paris strips you can get at Hobby Lobby. It was quite useful as I used it to compare to my TE expansion and I knew when I was about the same size. Also if you are not having nipple sparing, you might get some good close up pics of the nips so they could be used by a tattoo artists for coloring purposes if you go that route. Best of luck with the surgery. You're going to do great.

hlbrown

Thanks farmerlucydaisy, i do plan to try and get in better shape and loose about 5 pounds before the surgery. Thanks, hoping for a speedy recovery!

Willow6786

I had surgery on November 9th, 2013 for two clustered microcalcifications, up against my chest wall, and a nipple which was spontaneously leaking. The calcifications turned out fine, but the ducts showed LCIS. I have a family history of two aunts, who had breast cancer and one aunt who had ovarian cancer and died at 38. I have very dense breast, grade 4, I've read over the past week as much information as I can and I want to know if anyone feels my decision is crazy.

I haven't been able to sleep worrying and thinking this could possibly turn into invasive cancer. I want to have a bilateral masectomy.

Willow6786

Wishing you the best of luck and a speedy recovery

Mykidsmom

Willow - I don't think you are crazy. I made the decision 5 years ago and have never regretted it for one moment! Good luck my dear! - Jean

leaf

I don't think you're crazy either. You may or may not want to consider whether or not you get genetic testing or counseling to see if one of your parents carried a gene that infers higher breast and/or ovarian cancer.

I do want to warn you that there are breast surgeons out there who are adamant about not doing PMS for LCIS women. My breast surgeon looked at my core biopsy pathology report (which was LCIS), and the first words she said to me was, "If you want bilateral mastectomies, I'm going to sit down in my chair." This was *before* she asked anything about family history. She said she didn't want to do any surgery on me (besides the excision). My family history ended up being fairly weak (2 aunts on each side of the family and a grandmother, all postmenopausal), but family history is an important consideration.

I am not trying to be discouraging: I just want you to be prepared there are different breast surgeons with different opinions out there, and I don't want you to get hurt if a surgeon doesn't support PBMs for LCIS women.

Willow6786

Thank you very much

Willow6786

Thanks so much, my doctor, really didnt agree with my deicision, but she said it was mine to make. My husband, my kids and I are very pleased with the direction I chosen.

thank You!!

Willow6786

Thanks so much, she really didnt agree with me but felt it was my decision to make. I did the genetic testing, which thank God were negative, but I sad to her I'm young and there are alot of milestone moments in my childrens life that I can and will not miss out on. Thanks for the support.

Shelton

email me at lwaychief@cox.net I am two and one half weeks post bi lateral,, can talk with u anytime and would give me great pleasure to help u if I can!! O talking to others does help,,

Best,

Liz

Shelton

you're not crazy! I just had my mastectomy,, getting along fine, had the immediate implants which makes it a bit longer recovery..

Char66

Shelton-have a question-you had written- mastectomy w immediate implants "which makes it a bit longer recovery"-why is that as compared to TEs? Am in the process of getting surgeon and PS consults for BMX-LCIS and ALH- and was curious why longer recovery? Char

Anonymous

I thought reconstruction with the immediate implants was significantly shorter recovery than with TEs. (don't the TEs take a matter of many months for the fills, then followed by the exchange for the permanent fills?)

Anne

Shelton

a bit longer (with doing implants as opposed to not doing them was what i should have said) 8 weeks the surgeon said, nothing like TE expanders,,, I should have been more clear on that. I just did not want to do the TE route because of all the fills and additional surgery. I was a candidate for the one step so chose that. I guess 8 weeks isn't really that long, I am just very active,, today I am 3 weeks out, all I am having trouble with is just the tightness in my chest and not at all as sore as I was last week. Just taking aleve now.

Hope I explained that better this time!!

Stonebrook108

Shelton,

I had the direct to implants too and was glad I was a candidate for them Not everyone is my friend had the TE's and said she wished she was able to do the one step. We had the same PS but, she would have to have a small implant. with by having the TE's she went to a bigger implant.

Glad your feeling better. Don't you feel such a big relief now that it's over? No more mamos or biopsies and waiting to hear the results. I would do it all over again to have this piece of mind.

Glorygirl123

I also chose to have a double mastectomy with direct to implant on October 4, 2013. I was diagnosed with LCIS after a lumpectomy in 2010. It was 3 years of monitoring my breast through mammograms, sonograms and MRI's. Very stressful, being only 42, I felt as if I was waiting to get cancer. My breast surgeon did the skin and nipple sparing procedure. Everything turned out great. My pathology report showed LCIS in both breasts and in multiple areas. She said to me."if you ever doubt your decision, just read this report". I am so happy, 6 weeks post op. back to all my activities. Breasts are still hard and not like the old ones, but I have no more stress. My PS said it will take a few months for them to feel soft, but they look good. Good luck to anyone thinking about this.

Stonebrook108

Glorygirl,

So glad everything went well for you. I too had LCIS in the other breast that didn't show on the mamo or mri. The feeling of having implants will change after awhile. You do get use to them I had my surgery almost 5 yrs ago. And once you do you won't even remember you had surgery.

Best of luck to you

ClaireFraser

I have DCIS & LCIS (I've posted on the DCIS boards, too).  My question to you all.  With LCIS, is there is greater risk of recurrence?

I am struggling with whether or not to have a BMX instead of UMX.  I am 51, premenopausal, grandmother died of BS at 52, but negative for BRCA 1 & 2.  Path report after lumpectomy indicated Grade 2-3.  During my lumpectomy, the surgeon used the margin probe, and because they were not clean, she took more in hopes of getting clean margins, but unfortunately, there were still dirty margins.  During my follow-up appt., she gave me the option of a nipple sparing MX, but after doing some research, I have decided against it, because the DCIS taken was close the nipple and would hate to have it removed if more DCIS was found once the path report came back.

I am now leaning towards a BMX, but haven't even discussed it with my BS.  She is conservative, so she may discourage from going that route.

leaf

 I'm not trying to say this  is a representative sample of articles. 

I could find this study of *14* patients (not all of which had DCIS and LCIS) and they found DCIS plus LCIS as a risk factor for recurrence.

http://www.ncbi.nlm.nih.gov/pubmed/18815880

In this paper of women with DCIS plus ADH, ALH and/or LCIS, they found women with DCIS plus ADH had a greater risk of recurrance (versus DCIS alone).

http://www.ncbi.nlm.nih.gov/pubmed/16333852

However, in this paper, women with both DCIS and LN had a higher recurrance.

http://www.ncbi.nlm.nih.gov/pubmed/19170233

This paper found more recurrence in women with DCIS and LN.

http://www.ncbi.nlm.nih.gov/pubmed/20727142

I'm not an expert at all in having both, but from this small group of papers, I would guess it may be a concern, and its probably good to get a variety of expert opinions.

Stonebrook108

time to bump this up for the new girls dealing with this decision.

cdehls

A little late to reply, nonetheless, have to chime in and say I agree 100%.  I just had mastectomy w/reconstruction due to LCIS and family history (lost mother at age 62 and first cousin at 51)....I chose the gap flap reconstruction so they can only do one side at a time.  I had my left surgery March 4, and righty will be Aug. 7th.  Not one regret so far...I felt like a ticking time bomb, no matter what they said.  However, it was a very difficult decision and can't downplay that...It took me almost 2 years to make.  Now, after the fact, my anxiety is gone (well, that's also assuming final pathology o.k. which I'll find out Mon.)....Priceless!

eileenj

Hello ladies! I also have been dx'd with LCIS/ALH alittle over 2 years ago and for the first year I didnt worry too much about it, but after my last screening, which they found 2 cysts, Im just about at my wits end with worry.  So every screening so far, since my dx, has followed with a biopsy of some kind.  I am now thinking about PBMX.  Not sure I can live this way much longer.  I just want to be happy and free of fear.  I had a full Hysterectomy in Dec. 2013 which eliminated my cancer worries down below, now Im left with the breast issues.  I feel my breasts are diseased and are doing me no good and only harm.  What good are they?!?  Everytime I check myself I feel something new because I have fibrocystic changes occurring constantly.  Just finished having 2 FNAs in February only to feel something now in the other breast.  So here I go again   This is just causing more stress and constant worry of "what if."  So I have decided to get my toes wet and interview only highly recommended BS/PSs.  I have an appt with two so far, both in April. 

 

eileenj

I want to add that I consider my family history of BC to be a weak one, however, there have been two incidents of BC that I am aware of, my great grandmother died of BC (mother's side) and my father's cousin (my grandmother's neice) developed BC at just around my age and died from it.  To me that is significant enough.  I will also mention that there are other cancers lurking around in my family.  My grandmother (father's side) had colon cancer but was found early and cured, and also on my father's side, grandmother's sister had pancreatic cancer and died.  Also, I have had trouble with my ovaries for years and my breasts for that matter.  Before the age of 10, I had a cyst in my right breast which I had removed in my early 20's.  So stuff has been going on in my breasts for years.  Its time to say enough is enough and be free ..... 

sandra4611

EileenJ,

I understand your worry. It eats at you a little more each day and for me, it was no way to live. I had my BMX seven months ago and have never been sorry. I had DCIS in one, but they said the other side was fine. After the BMX, they said the other side had a lot of LCIS, completely missed by two mammos and an MRI with contrast. I have since learned that is not unusual in women with dense breasts. (See the website called AreYouDense.org) My oncologist said LCIS is more worrisome because it is often a marker for cancer developing in the other breast. So by having both breasts removed, there is no chance of LCIS or DCIS recurring since they only grow in lobules / ducts, and I don't have those anymore. However the chance of developing one of the other kinds of breast cancer is still possible in the tiny amount of breast tissue left but it's only 1%-2%. I'm happy with my decision. No buyers remorse.