Double mastectomy for ALH, LCIS. Age 34, anyone else out there?

Michi

Hi everyone,

I'm booked for a PBMX on May 21st. An MRI and MRI guided biopsy led to a DX of abnormal cells, ALH and LCIS which are a high risk marker for invasive cancer in the future. I had some change in the size of my right breast, which led to a mamo (which was normal). I pushed for an MIR, and here I am.

I'm already a high anxiety person and know I can't live in fear of what may develop while dealing with high risk monitoring. I'm 34, no family risk and in good shape. I eat clean and am a fairly regular runner. I have two young girls (almost 4 and 2), so in all honesty I am putting my fear aside and doing this for them, and our future. I know I've made the right decision for me, but am looking for any others who are perhaps younger like me, and in similar situations. I'd love to hear feed back about recovery with little ones around, as well as any tips for recovery, what to expect post-op, ect. This website has been a real life saver. Family and friends have been supportive, but it's another story when you are going through it.

Thanks in advance,

Michele

tiana

Michi - I was wondering what kind of dr.'s you've spoken with and what they said? What do they recommend to you and did they say this is high risk? I ask because I just recently had a needle biopsy which just showed epitheal atypia so they wanted to do a surgical biop to make sure got it all and make sure nothing else. I just heard today they found ALH and LCIS (which from my reading online today, I think are pretty much the same thing). The nurse gave me results (dr was out today) and I meet with my dr. a week from now (nxt Friday). I'm 49, but I have a 3 year old. Also, did you have the BRCA gene test? And do you have a family history of bc?

Michi

Hi Tiana-

Sounds like we are in the same boat. I’ve met with multiple oncologist, plastic surgeons and breast specialist and I am dealing with two major cancer centers in Boston, so I feel confident in that. I have not done the genetic testing, but I will since I have two girls and want to make sure I know what I am potentially passing down to them. Regardless of the results I’m inclined to do a BMX, simply due to the fact that LCIS and it’s lesser counterparts ALH, ADH ect are multi focal, meaning if it’s in one part of the breast it’s thought to be everywhere (and typically doesn’t show on anything except an MRI) and there is no way to achieve clean margins through a lumpetecomy. The option you’ll probably be presented with will be to do increasd surveillance. Theytold me an MRI, Mamo or ultrasound every six months for the rest of my life +5 years of Tamoxifen. I’m not inclined to do that at my age given the risk the medicine alone has, plus the stress and worry about the increased surveillance.

I have no family history, but they said given these findings I have a 30% or higher risk of developing invasive breast cancer in my lifetime. Too high for me! There is an LCIS board in the community pages that has a lot of helpful information and post. Keep me posted as to what your Dr says.

Mammabear

I went through the same as you about 1 year ago. I am a little bit older than you. My kids are teenagers, but I am quite active. Are you having a reconstruction? I had nipple sparing, under the Pectoral, direct to implant reconstruction with a slight reduction in size (D to C cup).

My experience was that there wasn’t as much pain as I expected. It is probably because all the nerves are cut so it is all a bit numb. However, you can’t move your arms at all, and definitely no lifting, so I imagine you are going to need a lot of help with the 2 year old.

For the first 2 weeks, I really couldn’t do very much at all. I needed help showering, getting dressed, getting my fridge rearranged so everything was on lower shelves, having someone do up my seat belt etc. By week 3 I was back driving. Slow steady recovery for the next few weeks, gradually using my arms more. I went skiing around week 9 but I was unable to carry my skis or use my poles. By week 12 I was skiing semi normally and starting back at the gym.

I am now back to normal, doing everything I used to do before at the gym (planks, chest press, overhead press, skipping, swimming etc). All apart from push ups. I can do them, but because they use the pec muscle so much I don’t like the feeling. They seem to be pushing the implant sideways. I don’t like the feeling so I don’t do them.

The good news is that the implants are firmly fixed to my chest, so when I run there is no “bouncing” feeling. Going down to a c cup also made sport much easier and my clothes fit better. It is very liberating.

Michi

Thank you for answering, great to hear your feedback! I’m planning to do the exact same surgery but it will depend on how my skin holds up if they can do immediate reconstruction or if I have to have tissue expanders.. I’m really hoping it’s the immediate, but PS told me not to get my hopes up since my skin is thin and I already have ten year old saline implants, +2 kids, apparently equals not ideal skin for this type of thing.

Both my parents are coming in to help, my mom will stay the entire summer and I do have my nanny working extra hours for my youngest since she needs a lot of hands on interaction. Were you happy with how the results turned out? Any regrets doing the surgery versus watching and waiting? Did you do the SNB biopsy? I’m really not wanting too since I heard that adds to recovery and risk, but my surgeon by practice does them, says only a 1% risk with their new method they use, of later developing lymphedema..

Glad to know you were back to working out normally after 12 weeks, I hope to be in the same boat. I’m so ready to just get this done and put everything behind me; just hoping everything looks clean on pathology. Hope you have a wonderful weekend, and thanks so much again for the feedback

Robinda2970

I’m in same boat. Multiple areas of adh too much to take out with lumpectomy. Two years ago I had small amt of dcis removed. I’m on tamoxifen. After my last biopsies which came back benign and adh I decided to do mastectomy. I’m doing it July 2 and my biopsy was end of feb. I’m just worried there’s something more or the adh will change by then. I’m waiting until July because I’m a teacher. Anyone know risks of leaving adh for long period of time?

Lula73

hi Michele- I'm 10 years older than you but feel much younger :-) I'm just curious if anyone talked with you about natural tissue reconstruction vs implants. I ask because 1) you are young which means you will likely need implants replaced at least once in your lifetime 2) you're a runner and implants aren't always a great choice for a runner based on other runner reports 3) you want immediate recon and with natural tissue recon immediate recon at time of mx is a definite unless they they find something unexpected during mx like positive nodes 4) your surgeon is already worried about thin skin and thin skin + implants without any other natural tissue to provide another layer can be problematic and cause issues with healin - implants with mx are not like implants for augmentation. They are the same implants but the base they're built on and covered with is inherently different. Using natural tissue often has better results in thin skin situations as the breast mound is real living tissue that the skin can adhere to. Most PSs will not bring up natural tissue recon if they personally do not do the procedure and sometimes tell women they're not candidates even though they have no training in it to evaluate you.

A great source of information on natural tissue recon can be found here if you've are interested in learning more:

www.breastcenter.com

Michi

hi Robin-

July is so close, I can’t imagine anything could come up between now and then. People can have this for years, or their entire lives and it doesn’t develop into anything. I know 70% plus with LCIS won’t develop cancer, and I believe ALH is perhaps a lesser number yet? It’s just such a small student group that the numbers aren’t super reliably tested.

Did you have an MRI at all? I’ve had two and this was the only thing that came up, so I’m just hoping there isn’t anything else as I know it’s rare to miss things on MRI’s. Also, being on tamofloxin is surely helping. I’ll keep you posted on my recovery. Are you planning recon at all?

SLL101984

I’m not in a totally similar situation as you as I have been diagnosed with ILC in my left breast. I am only 33 (have a little girl who is almost 2), and while I don’t feel lucky I have this I am very lucky my doctor found the spot while doing my yearly exam. I’ve gone through the mri process and it highlighted another area in my left breast so off it comes. I am a B cup right now so I don’t have enough tissue to take multiple lumpectomies. I am also in the process of setting up an mri guided biopsy on a spot they found on my right breast to rule out needing to take lymph nodes on both sides. Whatever that biopsy says I have decided to do a BMX mainly for the peace of mind going forward (and to feel as even as possible). I will not be able to handle the heightened monitoring going forward and I want to do everything I can to try and avoid going through this again. I am also waiting on genetic testing results. But I do not think you are being excessive by doing a mastectomy because quality of life going forward is a very valid reason to pick a certain treatment plan. Best of luck in your journey and know you are not alone

Michi

I’m so sorry you’re going through this, it seems unfair to have to deal with this at all, but especially given we are so young! I am shocked you have a dr. who was able to find this on your yearly exam, mine completely brushed this off and I had to go over her head to a specialist to get my MRI. My mamo showed totally normal, but since I have a friend going through breast cancer and I know younger women have dense tissue I forced the MRI. I only went since my right breast looked a little swollen and asymmetric, though they swear to this day they don’t know why. They are attributing it to me losing my final few “baby”pounds (10 lbs to be exact) though it still makes me nervous something is lurking that cannot be seen on MRI. Did you have any symptoms at all or she just happened across it?

Let me know when you head into your BMX. I’m less than two weeks away now so I’m starting to freak a little bit, but it’ll be good to put this behind me and stop worrying. I’m hoping since I’m on the young side I’ll heal fastand be able to enjoy the summer. Thank you for reaching out, I’ve been feeling pretty alone in this whole thing and it makes it easier to know I’m not the only one.

Michele

Michi

hi Lula

Thank you for the info, I thought I posted a reply to you last weekend but somehow now it is not showing up. I wanted to let you know I’m getting a second opinion at another plastic surgeon tomorrow and I will inquire about the natural tissue. I assume you mean taking fat from somewhere else on my body correct? My surgeon briefly touched on that saying the surgery is much longer if they do this, sometimes 7 to 8 hours and the recovery is 3 to 4 days in the hospital. I would be willing to do that if the results come out better and I am able to have immediate reconstruction. How was your experience? In terms of recovery I’m just worried about having a second area like my stomach perhaps I also have to deal with healing, scarring ect. Though perhaps this would be a solution to get those totally flat abs I’ve always wanted postchildren

Lula73

Hi Michi- that's exactly whatI was talking about. And yes it can help give you that flat tummy you've been searching for since kids - LOL. That one is called a DIEP flap. It's the one i had. Here's what you need to know when doing a consult with a PS to discuss your recon options:

Always ask first what types of recon the PS offers.

Then ask if you can see before and after photos of his work for each of those procedures. If they don't have photos to show you or the photos are not of that doctors work, keep looking for the right PS.

If the PS does not mention a particular type of recon you're interested in exploring ask why he doesn't do that type (usually it's pre-pec implants and natural tissue recon like DIEP and SGAP that they don't do). If he doesn't do natural tissue teconitd likrly because he's not a microsurgeon and therefore not qualified to perform it. It also means he's not qualified to determine if you're a candidate for it either,

Almost all PSs that don't do a particular type of recon will tell you you're not a candidate, that the outcomes aren't as good as what he does offer, or will try to scare you with how long the surgery takes/you'll have incision/pain/scars in more than one area, the recovery is soooo long, you'll be shortwaisted/boxy after.

Here's the reality (and a little bit on how i see it): yes natural tissue recon surgery is longer than implant surgery...you are sleeping through it so you get a longer really good nap vs implants. Not everything has to be quick and easy, some things are worth the extra time. Recovery is longer...yes, but if we take into account all the dr appointments for fills with the implant route week after week. I really don't see a big difference. They'll say natural tissue is more than just 1 surgery...yes, for most it is 2 with the second one being far less involved with much less downtime. And to that i ask what do you call exchange surgery for implants? Answer: A second surgery...so more than 1 surgery for implants... Yes you'll have an incision low across your abdomen, however a good surgeon will place that scar low so that it is concealed under a skimpy bikini bottom or pair of skimpy panties. And a good surgeon's scars will fade nicely so you look good naked too. If your PS is dedicated to superior quality outcomes (not all are) they will recontour your lower half to rectify any shortwaist/boxy appearance. Pain is pain. Having surgery on multiple areas for natural tissue recon was no worse than having surgery on just 1 area. That's hard for some people to wrap their mind around. A good PS will use not only IV and oral pain meds it would will use some locally in the surgical area as well. If you do opt for DIEP flap there's a whole other set of questions to ask the surgeon. Let me know if you need those.

Here's the link to the Center I went to for mine. Traveling was not a big deal and I'd do it again in a heartbeat based on my results. They have a great video on their site titled “I Wish I'd Known". Well worth the time to watch it. The link for the video is at the top of their homepage. The second link I post below will take you right to their DIEP flap before and after photos. I'm living proof tat those pics are the real deal for then and not just their absolute best work (I'm rarely that lucky but I'm working on that!)

www.breastcenter.com

https://www.breastcenter.com/result-photos/diep-photos/

SSWNC

oh wow, Michi, I didn’t realize you already had your mastectomy scheduled. I remember you from your response to my post (age 32 LCIS, also two girls ages 4 and 2 and about 95% sure I will get a PBMX). Please keep us posted on how how it all goes! I think I will schedule mine for January so would love to hear about your experience. Have you decided on an implant? My PS wants to do the gummy bear implant. I guess I should ask which one is best for running and exercise.

Michi

hi SSWNC-

Yes, booked for May 21st!..I know myself too well, I won’t handle the anxiety of waiting and I can take time off work this summer and have the help of my mom so it made sense timing wise to do it now. I’m nervous how I am going to handle the recovery with girls this age, my near two-year-old is going to be the problem because she’s a mamas girl and used to being held by me a lot.. I’ll keep you posted. My PS said she would choose based on what looked the best day of surgery, but it would definitely be silicone and most likely sub-pectoral.

Michi

Hi Lula-

I am meeting with another plastic surgeon tomorrow to discuss the option of this.. my current surgeon does do the micro surgeries but said they are extremely complex and wasn’t sure I would have enough fat to take, though I beg to differ as you mentioned, because it’s not her specialty she basically shot the idea down and said if I had issues or complications with the implants it would be a secondary option.

I’m going to discuss everything with the plastic surgeon tomorrow and see if its an option with him, from the research I’ve done he has done them, though I’m not sure with what frequency. Thank you so much for the information!

SLL101984

Michi- I got the call a couple of hours ago, I go may 21st also. Ready to get this behind me and move on

Michi

Great news (for a not so great situation) we’ll be recovering together then. Let me know if you find any great new Netflix series to binge on;)

Best of luck, I’m sure we’ll both do great and be enjoying the summer in no time.

SLL101984

Yes!! That’s the attitude I have too! Can’t wait to take my daughter swimming! I recently finished watching Schitts creek on Netflix! I thought it was hilarious!

Lula73

Michi - Keep us posted on what the 2nd PS says. What state are you in? Do you mind sharing which centers/docs you're consulting with for SGAP or DIEP?

Michi

hi Lula-

I’m in Boston and so far have been to Massachusetts General (MGH) most recently, started at Beth Israel Deaconess, and am going next to Brigham and women’s, all to their breast centers. I spoke last night to my best friend’s husband who is familiar with procedure, he does a lot of recon work in Los Angeles..both he, and my surgeon I’m booked with said I do not have enough fat in abdomen so they’d have to source it multiple places which would turn into a rather large and extremely invasive surgery which they aren’t even sure my insurance would cover. I wonder if they could supplement with aloderm? The doner tissue..I forgot to ask that but will mention it today

Lula73

Michi- if you’re thin, and depending on what size you want to be, then a stacked flap, tdap flap or a hybrid flap may be your best shot. Here’s a link to a talk Dr Dellacroce from NOLA did that has a case study in it of a thin lady with botched recon (from a different surgeon not at NOLA) who came to them to have her recon redone. That might be helpful to watch so you’ve got some more background on the procedures to ask. He mentions the inherent problems with some of the other flaps some docs are doing right before that case study. Also, other docs have a history of saying there’s not enough tissue when NOLA will say there is and get the job done fabulously. And yes insurance will pay for any of those flaps as they are required by law to do so because they cover mastectomy and insurance is not allowed to dictate what type of recon you do. When you’re arbor the PS today make sure to ask how they approach revisions on your lower half during stage 2. If all they talk about is the breasts being revised and the lower half doesn’t need anything and if you want them to revise lower half it will be out of pocket, keep looking for the right PS. You’re looking looking to do either type of recon at the time of mx, right?

Michi

hi Lula-

I saw Dr. Samuel Linn today at Beth Israel who specializes in this type of reconstruction, they doabout 4 to 5 per week and the PA told me they are considered one of the top shops in the United States for the procedure? Though I didn't do my homework on that.. Long story short I don't have enough tissue for the DIEP, not by a long shot.. since I'm about size 6 now and very tall, 5'11(fat is spread out) they'd have to source it from my hips, thighs, ect. I am a mid range C cup and he said if I wanted to be anywhere close to that this wouldn't be a great option. I'm definitely am not into the idea of having multiple areas they take from, too many incisions and too much of a risk for not enough of a trade off. He said I could consider using a hybrid, but again I don't really see the point in that because that would involve an implant plus my tissue, and at that point I'd rather use the aloderm and not cut into my abdomen. Though having him explain how they could literally take the fat from my entire body was tempting! 🤔(Hello brownies and wine!)

So I think I'm going to stick with my original surgeon and try for the direct implants. He did say if for some reason the surgery doesn't work out well this would be an option after the fact in terms of a possible revision, if needed.

Anyway I really appreciate your info, it certainly gave me a lot to think about and it was very helpful meeting withanother PS today.

Lea7777

Just read through all the posts. Wishing you luck in your surgery and recovery. You'll still be able to enjoy much of the summer!

Michi

thanks Lea-

1 week away and starting to panic a little, looking froward to putting this behind me. Appreciate the support and well wishes

suesue3

hi Michi. This is my first time to ever post on here! My situation is very similar to yours. ALH, LCIS. I am 2 weeks 3 days post BMX. I am 5'2" and have had size B cup most of my life. I didn't want any bigger. I opted for immediate reconstruction with implants. I still have my drains in. I must say they are the hardest part. Biggest advice--RENT AN ELECTRIC RECLINER and put it in front of a TV somewhere where you can have a little quiet time. I have slept in it at night for this entire time and it has saved me! I know I would be rolling onto the drains if I were propped up onto pillows in my own bed.

I have had 15+ mammograms and 5 biopsies since turning 40. (I am 47). I am mother of three children who are the lights of my life! (14,11,9). I held my breath for days before and after each of these procedures, and doing prophylactic BMX had crossed my mind before. When last mammo showed calcifications, I had biopsy which showed LCIS. I immediately told myself I wanted double mastectomy. My surgeon/s thought it was a little radical that I was begging for the BMX but also understood. I had BMX late April. My pathology report came back showing LCIS in both breasts (as to be expected) and DCIS in right breast. A 2mm invasive ductile carcinoma was also discovered in my right breast. I am not sure what my path will be from here. I meet for follow ups this week and also meet with an oncologist. I am terrified that they found this, but I am so thankful I followed my gut and had the BMX. Recovery has not been as painful as I thought it would be. My nerves are still waking up. I get the sensation that my "milk is letting down" all the time. --which reminds me of being a new mom and makes me sad that that phase of my life is behind me. This shows me that I am very emotional after the BMX. Mostly, I think I am just relieved I did it. Don't panic! You will do great. Happy to answer any questions! Also--get a "runners belt" A friend of mine gave me hers. It has little pockets where you can rest the drains. Otherwise, you will find yourself carrying them around or tucking them into the waistline of your pants.

Michi

Hi Sue!

Thank you so much for sharing your experience, it really helps to hear from other people and get tips. I'm ordering a runners belt ASAP! Never thought about the recliner, that's a great idea and my husband would be in heaven since he's always wanted one of those giant cinema recliners (and I've always vetoed them for aesthetics! Lol)

Sorry to hear about the IDC, it's very small, which is great news, but it has to be such a relief that you're on the other side of this now. I'm a big believer in following your gut and intuition. I've spent most of last Friday with various doctors, all of whom told me I'm their only patient who has choosen to do this based on LCIS. However a dear friend of mine who is an oncologist in another state said even though she's not allowed to tell her patients to do it she thinks I should get rid of them immediately, and if it was her she wouldn't think twice. I knew immediately after the diagnosis when I started doing the research it was just too much uncertainty for me so I feel good about the decision and now I'm just nervous about what to expect afterwards. I don't think I fully prepared myself for how things are going to look. I have augmented breast now and they look pretty good in my opinion, I'm not sure what to expect and for me not knowing has been the hardest part. In addition to the anxiety of not knowing what the final path results will bring. Keep me posted on your course of treatment, if you even have any, sounds like it was so small you're going to be fine! If you don't mind me asking, did you do sub or pre pectoral implants, and do you know the type? how are the cosmetic results? I know you aren’t even a month out so I guess it’s very premature to be asking that.

suesue3

it sounds like you are getting all of your ducks in a row! That is hilarious about your husband wanting the recliner. We rented one for one month. It has really been awesome. Otherwise, I know I would be rolling on my side.

Surgeon removed around 220 cc. Reconstructive surgeon said she replaced about 320 cc. So I know I am bigger than before but not much. Silicone implants is all I know.

You might ask about your lymph nodes! Dr asked me if I wanted to check them and i said yes. I didn’t realize they would actually be removing two of them. (One on each side). Since they found the IDC in the pathology, I am glad to know my lymph nodes were negative. I just wish I had discussed this with the dr ahead of time. I see where some have dissection instead of excision. ???

My reconstructive dr told me this is a process. We started with small implants because she was not sure what my skin would be like. Turns out it was very thin. I will most likely have fat grafts to add a little more volume to my breasts once the swelling has gone down and I get a better idea of the size of them.

One of my dr said I will most likely want to add a little fat because she is afraid I will be able to see the implants due to the skin being so thin. Either way, I would say my breasts look better post surgery than they did pre-surgery.

Big prayers for you! I totally know where you are coming from!

Michi

Sue-

Thanks for getting back to me again, and for the prayers (I’ll take all I can get!) it’s been so helpful to hear about other peoples experience going through this, I’ve been such an emotional wreck this week, especially since my youngest is not even two years old and still needs a lot of personal attention. Thankfully my mom arrives today and will be with me through the summer. It’s funny, no matter how old you get, in times of crisis you always want your mom ! Sadly after speaking to my PS she thinks I will most likely need tissue expanders because my skin is very thin and I already have implants. I am now debating doing sub or pre-pectoral but I am leaning towards going under the muscle for added protection and because I am a runner and feel nervous about having only a layer of skin to work with after. Can I ask which route you went? I know I could do fat grafting after so that has crossed my mind but being 34 means I will have to replace these implants at some point, so that may be a good option on down the road. Mine are currently over the muscle and after two babies and breast feeding, let’s just say, I was due for an upgrade

She is going to do a sentinel node biopsy on the right side which is where the abnormal cells were found. I did not ask her if that meant she would be removing the lymph nodes or not but that is a great question.. I had hoped to avoid it but I also think it will give me great peace of mind because I am currently in the state of mine that every ache and pain I have on my body is somehow attributed to this! I’m absolutely panicking they’ve missed something on the imaging, but at this point I’m trying to just stay positive and calm so my kids don’t pick up on anything.

I am really happy to hear you say you think your breasts look better after surgery, there are quite a few horror stories on here and as much as I try and remember that similar to writing a review, most people writing on websites like this are writing because they have had bad experiences. While the people with positive experiences are typically quiet and on with their lives.

Wishing you the best as you continue to heal

suesue3

Michi-----how are you doing???? I have been thinking about you all week! I am feeling good about everything you are doing, and although it is A LOT to go through, I think you are going to be so glad you did this (once the drains are out and you start to feel whole again). Please let me know how you are doing. sending hugs your way!

amy11559

Hi I just scheduled my double mastectomy for April 3 after having a bilateral lumpectomy with reconstruction which should an accidental finding of ALH. I am 50 years old and have a history of biopsies. Any advice or suggestions regarding the surgery? I haven't asked my surgeon but did you remove nodes and was a nipple sparing mastectomy an option? any advice offered would be appreciated. thank you