How many biopsies, surgeries and years?

NRB

I'm curious what others have been through with LCIS during the watch-and-wait years. I've had 2 stereotactic biopsies and now an excisional biopsy tomorrow. How many biopsies and surgeries...and how many years of mammograms, ultrasounds, MRIs and exams is enough? I tried to ask my radiologist this. He'd mentioned he had some patients who'd had as many as 6 stereotactic biopsies. I wondered how many I might be facing. He said everyone is different...so he couldn't say. Although I read from one woman on the forum that her doc said, "You are facing years of multiple biopsies." And, what happens after 6 or more biopsies...do the women get cancer, do the decide to get a PMB or do they quit all the testing (I'm guessing it's not this last suggestion)? He didn't answer that. I know it's probably personal, but I'm surprised how strongly I'm feeling that "this is enough already." I wasn't too happy about the stereotactic biopsies, but when the excisional one went from no-big-deal outpatient with colonoscopy-type sedation to a wire in my chest and general anathesia, it pushed me further toward "I can't keep doing this" and then waiting 7-10 days after each test, biopsy, surgery to find out if I have cancer this time. I guess I'm writing this to see if my strong opinion holds up to other's thoughts and experiences...to see if I'm overreacting. I've been told, "It's just a mammogram/mri every 6 months." Like I can look at it as simply as getting my teeth cleaned. And I know there's more to it. I have very dense breast, an autoimmune disease (cousin of lupus), a 60 or 84% chance of bc depending on the model used, and a surgeon who doesn't think I'd do well on tamoxifen. Please help!

Anonymous

NRB----I think each person has to decide for themselves when "enough is enough". I started mammos at 34 due to my mom's history of bc (ILC), was diagnosed with LCIS at age 46 (10 years ago) and have been doing high risk surveillance ever since. so I've had lots of mammos, exams, MRIs, and even a few US. (I alternate mammos and MRIs every 6 months, and except for the difficulty getting IVs into me, it really isn't too bad). As far as that doctor saying "you're facing years of multiple biopsies"; I'm living proof that that isn't necessarily true. I haven't needed any further biopsies in the past 10 years. I took tamoxifen for 5 years and have taken evista for about 4 years now, so I have to credit the meds for doing what they're supposed to do---help prevent invasive bc. (and fortunately, my breast density is very low so the mammos are easily read. ) Why does the surgeon feel you wouldn't do well on tamox? Is it because of the autoimmune issue? And those bc risk assessment tools don't work well with LCIS; the best thing is to ask your oncologist about your risk level or a genetic counselor. (your very well could be lower: they feel mine is about 35%, and that is with the combination of LCIS and my mom's ILC.

anne

NRB

Thanks for post. Good to hear you've been years with no biopsies. I need to ask onc if she said that about tamoxifen because of ai disease. Unfortunately the 60 & 84% came fom my onc & the models she uses.

SimplyAudrey

LCIS diagnosis on 1st excision biopsy.  1 US guided core, 1 mri guided core.  No tamoxifen for me (history of blood clots), and couldn't handle the watch and wait anxiety with where my risk was excluding the LCIS, and then with that added on.  I refused to be cut like a cheese wedge, so I went for door # 3 (preventative mastectomy).

Still had to have a biopsy yesterday even though I had a PBMX and implant reconstruction a year ago... and I learned Alloderm + scar tissue can = MORE scar tissue.  Still praying that's all it was.  Will know early next week.

Listen to you own heart and follow it.  It's your body....your life!  Best of luck!

leaf

Similarly (though not identically) to awb, I have not had PBMs. I have a 'weak' family history. I was diagnosed with LCIS on my first breast biopsy at age 51 (suspicious calcifications on my routine annual mammogram), started tamoxifen about 6 months later, had another 2 biopsies 6 months after that. (in early 2006). I can't remember exactly, but I may have had another breast biopsy in 2007. All the breast biopsies were LCIS or less. Finished 5 years of tamoxifen in 2011.

I, too, have an unusual autoimmune disease. My autoimmune doc said I should try a 3 month trial of going off of tamoxifen because 1 patient she had did better off of tamoxifen. (N=1, so not a big group.) I didn't notice any change in my autoimmune symptoms, so I finished out my 5 years of tamoxifen. While on tamoxifen, I had an endometrial biopsy/D+C/endometrial polyps about every 1.5 years throughout my tamoxifen course. All were benign. I also had endometrial polyps (and D+Cs) before I had any breast issues.

I have had no breast issues since 2007. I get yearly mammograms, and twice-a-year clinical exams.

I will list my 'usual' article about how poor we are at predicting breast cancer for individual patients. http://jnci.oxfordjournals.org/content/98/23/1673.long

This was based on the Gail model, the most widely used model for breast cancer prediction. The Gail model is really good at predicting how many women in a population will get breast cancer, but its really bad at predicting which particular women in a population will get breast cancer. Even when they added more risk factors to the Gail model, such as breast density, they didn't improve the model's prediction concordance value beyond 0.54-0.63, with an average of about 0.59. (To give you some context, a coin toss would be 0.5, and absolute certain prediction would be 1.0, and its a linear scale.) They said our breast cancer risk models are 'better than the toss of a coin, but not by much'. If we are this bad at predicting breast cancer for the 'average' woman, just think how bad our models are at predicting breast cancer for LCIS patients, where there is very, very little information. (The Gail model automatically excludes LCIS women.) I personally think its good to have some idea how 'well' doctors know your breast cancer risk.

eileenj

To date, Ive had one stereotactic biopsy and one MRI guided biopsy.  Prior to the two mentioned I have had numerous amounts of needle aspirations for cysts found in both breasts.  Needle aspirations were all found to be just liquid filled cysts. 

The stereotactic biopsy discovered LCIS and the MRI guided biopsy discovered ALH.  Treatment for these resulted in excisional biopsies (surgeries).

MsVeryDenseBreasts

NRM, I'm wrestling with the same questions. I was diagnosed with LCIS in '08 at age 46. I'm on the "frequent flyer" follow up plan. Since '08 I've had 3 stereos and 2 surgical biopsies. I have another follow up coming in December. Ask me if the # of biopsies I've had is any indication of progression of disease? NO it's not. Effectively nothing has changed since' 08. I am very frustrated at the fact that given that I have dense breast tissue the medical community cannot figure out what's going on with me w/out invasive procedures. In hindsight, for reasons I won't bore you with it's clear to me that 1 of the stereos and the last surgical biopsy really were not necessary, primarily due to lack of adequate communication between the radiologist and the surgeon and/or an aggressive surgical opinion. They have not found anything that merits treatment and for that I am thankful, but in the meantime I am getting cut up like a cheese wedge, to borrow a phrase from another contributor.

I understand that surgeons every day see disease that appears for no apparent reason....and this colors their view of recommended treatment, which in the US tends to be very aggressive. Leaf rightly points out that the medical community really does not know what % of the population is walking around with LCIS and they can't tell which cases will actually develop into something to worry about. Leaf also mentions that the sample sizes of LCIS patients in studies tends to be very small. What's more, most of the studies are retrospective in nature; that is they pour through historical files looking for clues that are scientifically significant...and there is often inherent bias in these studies which the peer review literature readily admits. In the case of my last surgery, the surgeon (who is very good) kept emphasizing the stats for upstaging on excision of LCIS. The % stat alone, taken out of context is misleading. The lit that produced that stat admits there is bias in the study and that likely the upstaged cases were instances where there were high risk or warning signs prior to the surgery (such as murky radiographic findings or questions that still remained from the pathology from the stereo). I've heard that there is a new LCIS study due out soon (clinical, not retrospective). Has anyone heard anything specific?

This year I've actually thought about and researched the prospect of PBMX. Not happy with what I'm seeing about that either but....it's really hard to discern because the people who tend to post are the ones who are having trouble. Who is out there who has had PBMX for LCIS and is happy with their post surgical result? What type of implants did you choose?

FYI, I passed on Tamoxifen. I have a family history for some of the most serious side effects and I am not interested in creating problems I do not already have. I also don't trust big Pharma when they find drugs that were created for one purpose and they are now able to expand their market into chemo prevention ($ cha-ching!). I noticed that many postings have indicated that people have been on drugs much longer than 5 years (people with LCIS, not actual breast cancer) and that after 5 years on Tamoxifen their doc put them on a post-menopausal AI. I asked my surgeon about her philosophy on this and she said the thinking is that 5 years on Tamoxifen gets you 10 years of protection, so now they are thinking that 10 years on these drugs could get you 20 years of protection. Okay, so where's the hard clinical data and what are the cumulative effects of such long term use?

Some words of advice from personal experience:

- Read the peer review literature yourself and breakdown the interpretation of all statistics. Look at the sample sizes and methods used. Take note of inherent biases acknowledged in the studies. Use this info to develop your question list to discuss with your doctor.

- Ask lots of questions about pros and cons of various choices. While you might have found a highly competent and empathetic doc, he/she won't be the one living with the possible downside of certain choices ...so ensure you have digested what you are and are not prepared to live with.

- Make sure your surgeon and radiologist consult with each other (by talking, not just by exchanged file notes).

- Make sure that the pathology is reviewed by people who are experts at breast issues.

- Use forums like this to gather info and support but DON'T let LCIS become an all consuming focus of your life. At some point, give yourself a break (for months at a time) and don't look up stuff on this topic on the internet. Don't obsess. Live your life.

trish01254

I had papilloma removed 2009 which resulted in discovery of LCIS.  Since then I have had 2 additional core biopsies.  Last one uncovered another papillom with atypical so back I am going to have another excisional biopsy.  I too feel like enough is enough.  However, I spoke to a coworker who is a BC survivor of 4 years.  She has had 10 biopsies so putting this in perspective I am happy that I am being closely followed and that the dr's care enough to investigate questionable areas on mamogram/mri/us.  It could always be worse than what we have with the close monitoring.  Positive Optimism.  Take care.

Cocomom

I was diagnosed with LCIS after microcalcs on a mammogram when I turned 50 in 2012. Then came my 1st excisional biopsy which showed nothing worse than LCIS. Then I began taking tamoxifen and having  mammo/MRI alternating every 6 months. 1st MRI found a bad spot. US guided biopsy found an intraductal papilloma (no atypia), so I had my 2nd excisional biopsy (that one with a radioactive seed localization instead of a wire). Next mammo was clear, but next MRI showed another bad spot. US could not confirm, so I had an MRI-guided biopsy and they discovered ANOTHER papilloma (still no atypia, yea!). Time for excisional biopsy #3! Today, I got the pathology report and they found more LCIS and ALH, but nothing worse.

I am really starting to think about getting a prophylactic bilateral mastectomy. This seems to be getting silly. My sisters and all of my friends think I should go ahead with it and do a reconstruction right away, but my breast surgeon and my oncologist still insist that is too aggressive.  I kind of feel like 3 core biopsies and 3 surgeries in 1 1/2 years is pretty aggressive. By the way, I'm very dense as well (breast and brain, I think!). Not to mention that fact that I am being whittled away. I think of the surgeon's tools as melon-ballers, and my melons are becoming smaller and smaller.

Stonebrook108

Cocomom,

5 yrs ago when I was going thru this journey my GYN told me he was glad I was choosing to have a PBM. Because when they found more cysts they would be picking me apart for the rest of my life. It's like having a mastectomy slowly over the course of years. The thought of that sealed the deal for me. I couldn't even think about what would go on in the future I was just thinking about what I was going thru at the time.

I'm still glad I chose to have a PBM with reconstruction when I did because it's now behind me. Once a year I go to my BS and my PS. Every 2 yrs I go for an MRI that's it. No more worrying about "what if they find something?"  Such a relief I can't even begin to tell you.

CDR_Westchester

I think I am up to 7 biopsies & surgeries since this journey began.  (This is my first post, so hope I am entering this correctly).  The worry and angst between these events, and then again before test results come in is emotionally draining.  I convince my self it's silly and not to worry until there is something to worry about.  It keeps me in the moment,  most of the time then  I worry again latter.   I am due back in October for the next round of mammograms, if the same routine holds, next would be a stereo or ultrasound needle biopsy;,.then an incision/lumpectomy  biopsy in the hospital.  I am hoping this time it won't be the same , and the mamo is clean, since I was just put on  Aromasin.   Then,  I have had weird pain and dimpling on my right side so , of course I am, concerned it won't be the same, but then to the other side of the coin.  What a roller coaster !   

carol57

msverydensebreasts, you asked about women who had pbmx after LCIS and are happy with the outcome.  I'm in that group. My decision was quick, not because of repeat biopsies but because of an extensive family history that weighed heavily on my heart for years before LCIS.

My recon is not a perfect restoration of my prior self, but I have no regrets. I had a diep reconstruction and the result feels quite natural, warm, soft, and looks and feels quite similar to the old me. There sure are some surgical risks that came with the package, recovery was initially a pretty good challenge, and I had a few bumps along the way, mostly some skin that didn't want to heal for quite some time. I also have a mild case of lymphedema, which I believe is the result of a sentinel node biopsy that in retrospect, I understand was a poor recommendation I should have researched and questioned. But all in all, I feel like the whole affair is behind me (although I'm still reading the LCIS forum...maybe that says I'm not so completely over it after all...) I sincerely appreciate the thoughtful and well researched posts by Leaf, voracious reader and others who have done so much to help me understand what brought me here.

PMBX is sure not for everyone.  LCIS brings lots of choices, but it sure seems like each one has a a big asterisk next to it.

Carol

MsVeryDenseBreasts

CDR Westchester.....I hope you are still out there and reading the forums. I'm interested in knowing if taking aromasin has prevented the need for further biopsies? I'm back on the medical merry-go-round myself. After 7+ years of close monitoring (3 core biopsies and 2 excisions), I'm now told that I need another 2-3 areas biospsied. As I am entering menopause, my breast density has not decreased either. This is terribly upsetting. I'm told I basically have 2 choices now: 1) Aromasin (maybe) or 2) PBMX. FYI....I have no family history and no lifestyle risk factors. Anyone out there had any success with aromasin/exemestane preventing further LCIS (or worse) biopsy results? Thx much.

SummerAngel

I'm not in exactly the same boat, but I do have an auto-immune disease and recently had a BMX. My auto-immune disease is currently labeled "Mixed Connective Tissue Disease" because my symptoms are similar to Lupus but not enough to label it that. I currently take Plaquenil twice a day for it, which has helped control flares. I've been taking tamoxifen for a month and haven't had any major SEs. I find my eyes are irritated, though, and I do worry about them because both of these medications are tough on the eyes. I intend to quit tamoxifen after 5 years and not take anything else.

I just wanted to comment and say that my rheumatologist mentioned that surgery like a BMX could throw me into a major flare, and it did. I had a three-week flare starting two weeks after my surgery.

Also, personally, I greatly enjoyed my breasts (sexually) and if you're someone who would miss that as much as I, I wouldn't suggest a PBMX. I'm fine with my decision, but I had no choice. Just my experience.

CDR_Westchester

hi mydensebreast , I am still here . Oct and this past June both were a success for me , No major change, so new biopsies . The aromasin appears to be working. Unfortunately my bone density took a big hit . I got a 10% decrease and am now on fosamax weekly. I'm 52 so that concerns me. Since it's manageable too I will take the good with the bad. The fosamax is upsetting my stomach so I may ask to change to another treatment option if available. I go back for breast mri , in January and retest the bone density again also Hopefully everything stays the same and I think a corner is turned. I have thought about the bmx to get off this high risk Rollercoaster and it's side effects, and the options seem to be improving . Like the skin sparing option, i am just not pychologically there yet. Its such a personal experience. I didn't even know l was so atached to them until all this.

Anonymous

CDR--if the aromasin is affecting your bones that negatively (and causing stomach upset as well), perhaps you could ask your doctor to put you on either tamoxifen or evista? they are both used with LCIS to prevent invasive bc, and are good for your bones (as well as your cholesterol). PM me if you have questions, I've taken both for many years.

Anne

MsVeryDenseBreasts

CDR, thanks for the reply. I appreciate it. Any other quality of life side effects you are experiencing on aromasin? My surgeon is very concerned about the possibility of bone density loss for me if I were to take that drug. I have a slight structure to start with. Your experience of a 10% decrease in what less than a year, sounds pretty significant. I hope you do have other options if needed as AWB suggests. The SERM options unfortunately are not an alternative for me as I have a strong family history of stroke and eye issues. I have multiple areas scheduled for stereo biopsy tomorrow. I so hope this is nothing more than LCIS. 7+ years of this is taking it's toll. Take care.

CDR_Westchester

All the best of luck tommorrow and in the results Mydensebreast. Thanks Awb, I will ask my oncologist in January about reconsidering alternatves. Serms were off the table for me also because of a mini stroke in '08. My neurologist has monitored me since and I have been on aggronox ever since and ive passed the 5 year mark with out another incident.,not sure that risk is really there now or even why I still need blood thinning. Seems more medicine gets added and none gets removed .sorry for the whining . Drs waited until I was official in menopause before I could start the aromasin. So those first few years with lcis I had no hormone treatment and a lot of biopsies .

The 10% loss was from my last dexa. So about 2 years. They didnt get a new baseline when I started the aromsin, because my numbers were very strong. That was dramatic and quick bone loss. The report called it "significant " . I ask if I should come off the aromasin, But the dr advised I stay the course and see what January dexa shows. I guess i can afford to lose another 10% , I sure hope I don't. The fosamax and calcium and I have to do some strength training should help. I figure calcium and excersizes can't hurt (not so sure about the fosamax) . This is forcing me to make some positive lifestyle changes.

Girl53

Not sure how many folks still reading this thread, but it discusses so many issues that I, with new LCIS dx, am already struggling with. Maybe I'm getting ahead of myself -- I won't even know results of my first excisional biopsy until day after tomorrow -- but there is so much to consider here.

I am almost as afraid of chemopreventive drugs as I am of BC! I just don't want to take more drugs and have to deal with side effects. When my late husband was ill and dying of his brain tumor, I was so stressed out and upset that doc put me on an SSRI and on a benzodiazepine for high cortisol. I was so focused on my husband's health that I didn't ask doc about possible/probable side effects and long-term risk profiles of these substances. I now am completely off the benzo and almost off the SSRI -- after long, slow taper -- and am feeling better. I'm 53, and almost menopausal (one more month without a cycle and I'll be home free), and the brain fog from that transition has now started to lift. The prospect of worse hot flashes, blood clot risk, mood disturbance, etc. on these drugs is a very unhappy one for me.

Do lots of women with LCIS dx opt to avoid a chemopreventive drug, or at least delay the start of it? Have read that, of LCIS women who get BC, it doesn't tend to show up for 10 or 15 years or more. Does this mean it's safe to delay start of Tamoxifen, etc., OR, could the mere presence of LCIS mean there's a biological process going on -- headed toward cancer -- that needs to be halted now? Have also read that doctors don't know, among all LCIS women, who will turn up with cancer years or decades down the road.

I have LCIS, ALH, and a strong family history (mother, paternal grandmother, and multiple great aunts and cousins, on both sides) of breast cancer, and two third-degree relatives with ovarian cancer. Am waiting to see whether, at my breast care center, they will recommend genetic testing. But even if BRCA negative, fact of high risk remains.

I have already spent the greater part of my adult life in fear for my late husband (now gone, after years of a terrible rollercoaster of anxiety and financial challenges related to employment and treatment of a partially inoperable tumor). I am blessed to be happily remarried to a wonderful man and would love to not be wondering, constantly, if BC is just around the corner....Or if it might pop up when I am 75, and my husband is 82, and likely facing health challenges of his own? I just have doubts about my ability, long term, to manage the anxiety constructively and gracefully.

Would love to hear others' thoughts.

Anonymous

girl53-----I don't know what percentage of women with LCIS take preventative meds and don't; I personally decided to be proactive in taking them due to my combined elevated risk from LCIS and mom's ILC. Sounds like you have a significant family history as well, so genetic testing is a good idea. It can be helpful in making decisions going forward. I wasn't ready to go the route of PBMs, and didn't want to just "watch and wait", so preventative meds was the choice for me. (And it seems to be working in my case, no further issues in all these 12 years. Added benefit from tamoxifen, is decreased breast density, that makes mammos much easier to read and detect any abnormalities.) Most women tolerate tamox pretty well, with hot flashes being the most common SE, and if you are nearing menopause, you will have hot flashes anyway. (they aren't necessarily any worse when tamox is added into the mix). You can always try tamox and go off of it if you don't tolerate it well. Some choose PBMs due to the prospect of long term surveillance, but there are advantages and disadvantages to both choices. I've already had one major life altering irreversible surgery (some of the decisions made partly due to fear), so I'm not going to rush to have another one , (unless it is medically necessary, of course). Take your time, there is no rush with LCIS (since it is non-invasive); you can take the time you need to make your decisions based on knowledge, not fear.

Anne

Girl53

Anne: Your thoughtful reply is so helpful...thank you. Couple of things I forgot to ask re: Tamox, Evista: Do they cause weight gain in most people? Mood changes? Also, I have eye issues in family and personally, and have heard Tamox is contraindicated there. And are blood clot issues mostly associated with older women?

Girl53

Anne: I notice on your signature that you had prophylactic ovary removal. Have encountered some other women who have had this done and wasn't sure whether it's always related to ovarian cancer risk, or whether ovaries' estrogen production, even after menopause, can heighten BC risk.

I know I'm in a fear state right now and will get calmer before making decisions. Partially due to my late husband's long illness (and because his tumor happened to be a rare, unpredictable type), it's easy to see the body/breasts as ticking time bombs. Concentrating on my morning coffee will help today LOL.

Anonymous

girl53--I was on tamoxifen for about 1.5 years before my surgery (TAH/BSO--- my signature line says "prophylactic" but it was definitely NOT my choice; I had large ovarian cysts which ruptured, a very uncommon SE of tamox) and didn't notice any real SE except for one bad yeast infection (that cleared up with diflucan). Any weight gain, hot flashes, or mood swings happened after my surgery due to the immediate surgical menopause with the drop in estrogen. The risk of cataracts, blood clots, or endometrial cancer are all very, very low, <1%. It's a good idea to have a yearly transvaginal US while on tamox to monitor both the ovaries and the uterine lining.

Anne

614

I am taking Arimidex/Anastrazole which is an aromatase inhibitor.  I have no side effects.  I have been taking this since October 2014.  I had my ovaries removed because I needed to be medically induced into menopause so that I could take the AI's.  I could not metabolize tamoxifen so I couldn't take it.  I had a double lumpectomy in my left breast rather than a double mastectomy.  I was diagnosed with pleomorphic invasive lobular carcinoma, pleomorphic lobular carcinoma in situ in 2 locations, and invasive tubular carcinoma.

Good luck.

Girl53

614: So glad that you have no side effects from AIs. Do you also take a bone-preserving drug? I recall someone telling me they often prescribe these for women on AIs.

614

Dear Girl:

I am really lucky that I have no side effects from the Arimidex/Anastrazole. Thank God!  I am taking OTC calcium pills, vitamin D3, and magnesium.  I had a bone density scan (baseline) in October 2014 which showed that I had osteopenia at that time.  I do not know how much the Arimidex/Anastrazole is leaching the calcium from my bones.  I won't know until I have a follow up bone density scan.  However, I don't think that my oncologist will recommend that test for 2 years from the initial test.  I don't remember the time frame, so I could be wrong about the 2 years.  I am sure that time frame has something to do with insurance coverage though.  I am vigilant about taking the calcium supplements so that I won't have a worse problem. 

I know that I must do weight bearing exercises for additional help for my bones but I have not been able to motivate myself to exercise.  I work so many hours and I have a 2 & 1/2 hour commute to/from work every day.  I am also a single parent.   Frankly, I'm exhausted.  

Res112

I was diagnosed with LCIS in August 2011, I had a stereotactic excision and 2 other biopsies following that procedure. It took me a while to wrap my mind around what the diagnosis really meant. Since there's no way to truly predict what will happen, I opted for the frequent flyer program with mammos and MRI's every 6 months. I also did tamoxifen, but only lasted 11 months on that, the side effects were kicking my butt. So 4 years later, I'm feeling ready for a prophylactic bilateral mastectomy. The stress and anxiety around the 6 month appointments have gotten to be too much for me. My father is a BC survivor and he was tested and came back negative for the BRCA gene. I myself have not done the genetic testing.

I'm not planning on having reconstruction, I feel like I need to get off this roller coaster and start the healing already.

Anyone else gone this route and has any words of wisdom to share. Feeling very alone, not many women with this diagnosis for me to talk with.

Moderators

Res112, It sounds as though you have been through quite a bit, but that you are making a good decision for your situation. You are not alone here, as you can see, so welcome to our community. Please let us know how things go. We're all here for you.

VAINLA

A stereotactic biopsy found pleomorphic LCIS in December 2013. I had a lumpectomy in February, 2014. P-LCIS statistics gave me a 50% lifetime risk of becoming invasive. No history of BC in my family so I wasn't too worried and opted for 3 month check ups, MRI, mammo, etc. I figured if they ever found anything else of concern I would deal with it at that time. Then, a few months later, In August 2014 they found a papilloma that they wanted to excise due to my risk factor. My doctor gave me three months to have it done. I grappled with what to do for months but eventually stopped listening to my head (there is no logical way to know the right answer) and listened deeply to my gut. In that moment I was so scared because I knew that I needed to do the mastectomies. I'd never had major surgery before and the anxiety I felt leading up to the surgery was beyond anything I could have ever imagined. I couldn't sleep, couldn't concentrate, lost loads of weight etc. I opted to do double mastectomies in January, 2015 with instant reconstruction and scheduled a nipple sparing surgery for 10 days before the big one. When the day of the first surgery finally came I almost chickened out. My surgeon was AMAZING and patient as I once again (between sobs) went through all my pros and cons. At one point she suggested that we just do the excision and put off the mastectomy a couple of weeks. It was in the moment that I realized I needed to do this - I physically and emotionally could not handle 2 more weeks of anxiety. In that moment I felt a blanket of calm. I spent the next 10 days listening to meditations on healing, taking my vitamins, eating healthy, etc. My surgeons were both females and were so understanding and brilliant. My surgery and reconstruction was 8 1/2 hours. They removed about a pound of flesh and 400 pounds of anxiety in those hours. It went perfectly. Recovery was easier than I thought. I had very little pain so just took tylenol for soreness, which was enough. I spent 2 nights in the hospital and 3 days in a recovery center. When I came home it was helpful to have my mom and husband to care for me as you're rather useless without the use of your arms and the need to sleep constantly (2 hours sleep following every 20 minutes up). I was back at work part time after 2 1/2 weeks - still got tired fast - but could manage. I did physical therapy to get range of motion back. I had no complications, no infections, no regrets. And my reconstruction is pretty amazing. Since then, I have never felt anything other than gratitude that I dodged a bullet and listened to my instincts. It's not an easy decision, but once it's over you can get on with your life without constantly looking over your shoulder. Without reconstruction the recovery should even be easier than mine. Good luck to you.

Moderators

VAINLA-

Thank you for joining us here at BCO, and for sharing your story! We're so glad you had such a positive experience, and that your recovery was smooth and uneventful. We wish you continued health!

The Mods

Res112

Vainla- thank you for sharing your story. I totally get it when you say you had 400 pounds of stress! I'm glad you're happy with your decision and your results. I'm looking forward to the next step in my process so I can also get to that place.

So grateful for this discussion board. It's good to read about what other women who have LCIS have done.