29yo,requested mastectomy and no reconstruction
Hello, everyone.
I'm 29 years old and was just diagnosed with low-grade solid-pattern DCIS. I have been having bloody nipple discharge for several months, and though my mammogram and ultrasound all looked normal besides showing fibrocystic breasts, the dr wanted to do an excisional biopsy and nipple exploration. Eight days later I got my diagnosis. Drs are recommending BRCA testing and MRI this week, and assuming they already got it all with the biopsy, then daily radiation for 6 weeks, 5 years tamoxifen, and MRI, mammogram, and ultrasound every 6 months for the next 5 years. Because of my experience watching family members and friends fight breast cancer for years, as well as being sick of dealing with breast problems since I was 19 years old, I have requested a bilateral mastectomy. I don't know yet if my surgical oncologist will agree. She wants me to meet with other doctors in the practice first and hear more about all the options.
With a husband who works 60 hrs per week and six young children at home, all of whom are homeschooled, I have decided that I will not undergo reconstruction if I do have the mastectomy. I have lupus and some inflammatory issues (my body can't handle bandaids, sutures, etc), so I don't think implants are a good choice for me, and I just don't want to take all the time necessary to have any of the reconstruction options with my own tissue.
Are there any other young women who have chosen bilateral mastectomy, particularly without reconstruction? Does anyone go flat, instead of wearing prosthesis? I am naturally a D cup and have no idea what I would wear, so if anyone has any suggestions for buying clothes afterward, that would be awesome info to have as well. I thought maybe I would buy a few Tshirts for afterward, just so I have something, and then go from there?
Comments
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Hello Mommy2Six, and welcome to Breastcancer.org.
We're sorry you have to be here, but so glad you've found us. Here you will find a supportive community of women who have undergone similar experiences, and who can share their thoughts with you.
We're sure that you'll be hearing from other members soon. In the meantime, check out our Helpful Links. Living Without Reconstruction After Mastectomy. You will find that we have several active threads devoted to choosing no reconstruction, as well as links to content on our main site. We hope you will find it helpful.
Warmest regards,
The Mods
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Hi Mommy2six,
Sorry you are having to join our club. I am not in your age bracket, (I could be your MOM) but wanted to let you know there are many of us who choose to go flat or do wear pros on occasion.
Our fashion guru, Ariom, will hopefully pop in later. She is the goddess of knowledge for all things bras and foobs. She will have shopping recommendations for you. You may feel more comfortable with a nice soft camisole next to your skin and then a shirt over that.
I'm an uni MX, but I go lop-sided flat sometimes, wear a pros sometimes, but mostly have to wear compression for my truncal lymphedema. That compresses my whole chest area and I look flat,,, flatter,,,,
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Thank you so much for the encouragement. I'm so glad to find these groups, because most people in my "real life" are freaking out about the thought of me doing this. It's funny because when I tell people (family, friends, church) what I'm planning to do, everyone over 55 says "GREAT PLAN!" and everyone under 55 says, "NOOOOO!!!!!" My husband is the only exception.
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You have to do what is right for you. People have forgotten that these recon options have only become available in the last few years,, 10, 15? Not really sure. When I was a kid, no one had recon. It wasn't available. So if you don't want it, do not feel like you HAVE TO. If your local people are not supportive of your decision, don't give them all the details.Be sure when you have surgery,, that your surgeon knows you want to BE FLAT. And flat as a pancake, that you are NOT having recon in the future. I was not clear and I ended up with excess skin, cuz he thought I was having recon later on. Now I have to face another surgery to have it removed, if I want to get rid of it.
We are here for you. Ask any questions and we will try to help you.
glennie
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Hi mommy2six,
I'm not as young as you are (I'm 44), but had bilateral mastectomies in January of this year, with no reconstruction. I have not regretted it for a second. My surgeon was concerned that I would change my mind after surgery, so to ease his mind (and to know what my options were in case I ever decided to do something different) I met with a PS twice. Not for me, for similar reasons as what you mentioned--I didn't want more surgery to interfere with my family/work/life in general. As it turns out, I also developed lymphedema, so definitely don't want more surgery complicating that. Do what feels right for you.
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As others have said, do what feels right for you. I'm not in your age bracket either, (I'm 50, was 49 at time of surgery,) but I went for bilateral, had, and have, no intentions of getting reconstruction, and I've been going comfortably flat ever since. The only thing that might have made me hesitate in my decisions were if my husband had not been100% supportive and in agreement with all of them, but he was. He specifically did NOT want me to have reconstruction because "that's just more surgeries, and for something that's just cosmetic." I've had the vague plan of going to buy "foobs" but have never gotten around to it, and at this point, I don't even really think about being flat when I go out. No one seems to notice, and if they did, I don't think I'd care. My husband rubs and caresses my flat chest at least as much as he used to caress my breasts, and it feels nice and soothing. Everyone is different: Do what works for YOU.
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I'm 28 and just had a Mx (left) with no reconstruction or skin or nipple salvaging, I don't regret my decision for a moment! As soon as my surgeon explained the recovery time, pain and risk for infection would increase with reconstruction I knew it wasn't that important to me personally and I didn't want it. To be honest I have no desire for reconstruction now but I'd never say never... I had surgery just about 2 weeks ago, my family/ friends/ church family were and are supportive of my decision but seem to worry about my self esteem hitting rock bottom when in truth it's never been better. Cancer has given me a different perspective, I feel more confident in my true self and the superficial than ever before because I'm God's Special Little Snowflake! Post surgery I found my husband's collared button up shirts to be the most comfortable to get off and on plus they offered easy access for drain care. I kept my drain tube grenades in a stretchy bralette around my waist, pouch style (I didn't like feeling their plastic rubbing my skin), it worked in a pinch but if I had it to do all over again I would have bought that camisole from the TLC catalogue that zips up the front/ has breast forms/ pouches for drain tubes. I figured things out along the way but wish I'd been more prepared for what to wear and what to do with drain tubes so I highly recommend researching beforehand if you end up with Mx. But I only had one arm affected and two drain tubes to handle. Wishing you the best
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I'm 36 and almost 4 months out from my BMX with no recon. I could not be happier with my decision. I don't wear prostheses, and instead choose to go flat or wear a little bralette with some fiberfill behind the modesty pads (just so they don't go concave). I find I can wear a LOT of clothes I previously assumed I could not. It's amazing what a camisole can do! My advice is to wait until you are fairly well healed before weeding the clothes out of your closet - you may very well be surprised at what you will still be able to wear afterwards
Immediately after surgery I had a few button up soft pajama sets that I lived in for a couple of weeks. I took the pockets that came with my post-mastectomy camisole and pinned them to the insides of the pajama tops to hold the drains. I couldn't handle the actual mastectomy cami - it was so uncomfortable. After a couple of weeks when I could safely raise my hands above my head I wore anything I wanted.
Good luck to you!!
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Thank you for sharing that. I definitely need to put two-piece pj sets on my "to buy" list.
If I may ask, what was your recovery like? I know several women who have had mastectomy, but almost all of them had the tissue expanders placed the same day. I am hoping I can expect much less pain and discomfort than they experienced. How long were you in the hospital, and how did you feel at week 1, 2, 3? How long before you felt like yourself again? -
I had uniMX and I took 4 weeks off from work. Mostly because I had tons of sick time and felt like using it. I probably could have gone back after 3 weeks, but why push it? Mine was outpt surgery, I was home the same day.One thing you want to think about is dealing with the drains. You might want to pin them to your blouse, or get some drain pockets to hold them. TLC catalog has a camisole with built in drain pockets, I bought 2 of those, that closed in the front with velcro and lived in them until I got my drain out. When my male friend had BC surgery, I bought him a nail pouch from Home Depot. He could tie it around his waist and put the drains in the pockets, he had 3 drains and it had 3 pockets, so it was perfect. Also your surgeon may or may not let you shower with the drains still in. If you can,, you will want a long shoelace, or sash from a bathrobe, or something similiar so that you can loop that over your head and hold the drains up while you shower. If you can't shower, Walgreens had these really great wipes in the medical section of the store. They are large enough that you slip your hand inside of it and you wash off with it, no rinsing needed. You feel very refreshed afterwards.
I would say after the first 2 or 3 days, I felt pretty good. More discomfort than pain. It is hard to sleep on your side for a while though, and some have trouble getting out of bed. I got a bed wedge from Bed Bath and Beyond and slept on that for a while, cuz I have a hard time sleeping on my back, and using it made it easier to get out of bed.
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Omgosh I am so jealous that you got to have it outpatient. I'm having serious anxiety about being away from my kids overnight for the first time.
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At my hospital, it seems that most patients with MX and no recon are done as outpt. Wonder if this is a local thing or what?It seems most people are surprised that my MX was outpt. Now I'm seriously wondering how common it is.
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Woooooow. I asked about it, and even before they had mentioned wanting to do the oophorectomy and hysterectomy at the same time, she said I would need to stay at least one night, and to trust her, I would be grateful for the IV pain meds.
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Enjoy the IV pain meds! Hubby/family will stay with kids?? They will be OK, and then when you get home, you won't be in as much pain as right after surgery. You won't be able to lift kids for a while afterwards!! You'll only be able to lift your arms so high for a while,,, so be patient with yourself, and ask for help. You have 6 kids,, call in the troops! -
Mommy2Six, I had a BMX at 54 and had no reconstruction and couldn't be happier. I was undecided about reconstruction at first and now am facing another surgery after radiation to make me completely flat. I wish I would have made my decision before the surgery. After my surgeon told me that I would have to have a mammogram, MRI or ultrasound every six months for 5 years and beyond, if I did reconstruction, the decision to remain flat was an easy one for me. My husband knew that we had been through enough and he wasn't willing to let me go through more and he tells me that I am still the "love of his life" and that he didn't marry me for my boobs and truthfully, it isn't anybody else who has to live with your decision. You do what is right for you and your family.
I was in the hospital for three days total. Only because my surgery was over six hours long, but personally I think my surgeon was spoiling me. LOL!!! I had two drains and a friend of mine made what looked like coin purses to hang around my neck and they fit the drains perfectly for showering. My DIL bought me a barber's cape to shower in so my incisions didn't get wet. It is the little things in life like taking a shower that make getting out of the recliner in the morning worthwhile. I was off for two weeks and then went back to work part time for two weeks and then back to full time. Oh, yeah, gotta love those pain meds!!!!!
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Hi again! My recovery went really well. My surgery was on a Friday morning and I stayed one night in the hospital and was released Saturday morning. The first couple of weeks weren't much fun, but not because of pain - there was very little of that. Mostly it was just tightness and soreness and the frustration of not being able to lift anything or raise my arms much. Once the drains came out (around day 10) I started to feel much better and I really turned a corner between weeks 2 and 3. I highly recommend asking your surgeon about some exercises to start doing when you get home so you can regain your range of motion easily. Oh, and I got one of those full body pregnancy pillows to sleep on and it was a lifesaver! The one I got was called a Snoogle. Best money I spent!
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Just to add to the wonderful advice and stories above, I had a unilateral mastectomy (no reconstruction) and a 1-night stay. They had a lady volunteer come in to provide me with a cotton camisole with pockets to hold "fluffs" or falsies to wear until I could be fitted for a prosthesis. Also, most breast surgeons have you wear some type of surgical bra for 6 weeks -- they put it on you in the OR and it stays on to promote healing by binding your skin tight to the underlying tissues. Mine opened in the front and had hooks and a zipper. If they do sentinel node sampling you will have swelling under your arm for a couple weeks so be sure your PJs are roomy enough -- mine weren't. Agree with pillows for cushioning and sleeping a bit upright. It was hard to stand up when getting out of bed for about 4 days, then it was okay. I never needed strong meds for pain, just Tylenol a couple times, but everyone is different. Someone told me once that people around you feel better about your illness when you let them help, so although I'm a self sufficient type I found something for everyone to do. Even asked my brother overseas to send me funny email clips to cheer me up. You might have a funny looking Christmas tree when you let the kids do it but they will feel so special to have helped Mommy rest.
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I am so thankful to have found this thread. I wish I had found it pre-surg, but oh well.
I am 54, and five days post bilateral mastectomy with no recon. Most of my life, I always planned that should I get a diagnosis, this is what I would do. Then my mom got her dx, and I re-confirmed my plan (she had single mastectomy - hated being lopsided and hated her prosthesis. Her surgeon refused bilateral (12 years ago) and she regretted it). But when I spoke to the surgeon, I began to wonder. I was glad I took some time, even though it was stressful, and talked to a bunch of different docs. I got excited about reconstruction when I learned they could do it with belly fat, but when I investigated the procedure, I was pretty sure it wasn't for me.I have a condition called Ehlers Danlos Syndrome (it's a connective tissue disorder - my collagen is broken) - hypermobility type. It causes chronic pain, similar to fibromyalgia. The plastic surgeon said in 15 years, he'd never had a patient with it (wasn't about to be his first). I don't need to willingly sign on for more pain than I already have.
I wish I had been more able to prepare for surg. You definitely need all the troops to help you! I wish anyone had mentioned that there are things made to handle drains. NO ONE, not the nurses, not the docs, nothing I had found up to this thread. I'm pinning them to the front of an clean white t-shirt (mens 3X, my standard sleep shirt - I have many).
Mommy2six, be sure to tell everyone that you're sensitive to the tape. Don't rely on it being written in your chart, or only your surgeon knowing. They plastered the drains on me with tegaderm, and I have a vicious blister for their troubles. :P
I'm sleeping on my back - a must, because my drains are on my sides. I don't usually do that, and it's a challenge. I didn't have great sleep before surgery. I've used some fabulous hypnosis CDs for pain release and healing.
Oh, and I haven't seen anyone mention butt-wiping. (sorry, I have no shyness, I'm a professional patient) :P Cannot twist, have to bend over and go front to back, from front. For me, a challenge. Also a challenge because that's where the drains are. Be sure to eat your veggies and all the stool softeners. Pain meds are terrific; their side effects, not so much.
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I cannot recommend prunes and/or prune juice enough. They really do work. If you don't like the taste of prune juice, mix in half and half with apple juice. Warm it a little if you like. It gets things moving.tigerbunny: welcome to our flat family. Sorry that you did not get any advice on drains before hand! That sucks!! How long since your surgery? Are you still dealing with drains?
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I had BMX om October 20 of this year, reconstruction is on hold until 6 months post radiation, which will be after 20 weeks of chemo. I am still up in the air a little about whether to do the recon, but if I don't, I will at least get my chest "cleaned up" and made flat, as I had skin sparing on both sides. With a year to go before I can have my surgery, I am at about 50/50 either way. My husband just wants ME here. He just says they are not allowed to touch the booty.
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Hi Charlottesmommy,,, love your hubby's comment. No touchie the booty!!
Whatever you decide to do, recon or flat,, there are people here who will help you with any questions that you have.
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Tiger Bunny, my SIL has Ehlers Danlos! (And MCAD)
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I wanted to be sure to post a reply to your questions specifically because I have three young children, two who are homeschooled, and I just turned 28 in August so, I am close to your life stage
I had a bilateral mastectomy - no reconstruction. I actually never got a prosthesis - my surgery costs never reached my deductible and I figured I would never wear them anyway why bother spending the money? I was a DD prior and so, I could give you a list of all of the issues I no longer deal with (sweating under the boobs, back pain, shirts not buttoning, etc). As for what I wear, I still wear tee shirts around the house and out and about. My surgery was in May so, it took me a few months to adjust to the appearance. Something I found helpful was discovering there are actually women whose bust were so small that they looked flat and that gave me comfort. I was surprised how no one really seemed to notice. Now in some shirts it is. The one thing that I dislike is I have gained some weight and consequently my tummy sticks out more - or it just feels like it, because there are no boobs there to make it evened out. So - what to wear!? What I have found is I dress the complete opposite of what I used to - I used to try to minimize my bust and now I am maximizing it. Which means little over shirt cardigans look best being shorter instead of longer, patterns on the bust or stripes are better, layers are awesome, scarves and bold accessories are awesome! I actually had started a Pinterest board of things that match this for style to help give me ideas - like I said, dressing in a way I am not used to. Oh and for the record - my surgeon was not impressed with my decision to not want implants. I was so young and the only people she had ever not want it were 60+. She highly encouraged me to talk to a plastic surgeon so I knew my options and that.... I knew that my surgery - being a prophylactic - there would be days I would regret doing it. But I have never regretted not getting implants. They wouldn't be mine and I had no desire to deal with them.
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Bearhitch, You are awesome! Thank you so very much for replying! My surgeon was totally skeptical as well. We had to have FOUR conversations about AND I had to have a consultation with two plastic surgeons before she accepted that I am really serious about this. My surgery is Dec 15. I'm totally going to check out your board. Thank you again.
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Bearhitch,
I love your Pinterest board! Thanks for sharing that.
The other night, I was watching an interview with a Harvard Business School prof, a very attractive middle-aged woman. She looked elegant in a cashmere sweater set -- not high fashion, but she made it look good. After a while, I realized that she looked quite flat. I don't think anyone who hadn't been through a mastectomy would have noticed, but I think we're more aware. Later in the interview, the professor alluded to having had breast cancer. She also mentioned that she loves to shop (it was a wide-ranging interview), so clearly being flat-chested hadn't dimmed her love of nice clothes.
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I am 45, had uni mx. 3 months ago, and am totally happy with my decision. My recovery was super fast, no pain, in 2 wks, my life was back to normal.
I learned about coobie bra from fellows on this website, and bought a few. The bras have worked out perfectly for me. I don't need to use foobs. The bra's thin padding helps me appear small boobed, but not completely flat. So I have not bothered to get my prescription mx bras/foobs.
I also like to swim and want to continue to wear my beautiful swimwear. Without a foob, my chest under the swimwear looks like a deflated ball. Breastfree.org gave me the perfect solution -- bath puff. I cut a piece to match my un-operated side and sewed it to the swimwear, it filled up the void nicely. It doesn't add any weight, doesn't move and dries fast after swimming. A huge thanks to Erica for sharing this great idea on her website! I am even tempted to sew a piece to my un-operated side to make myself look prettier:-)
One challenge I had to face was changing in the locker room at my gym. The first day (wk 5), when I had to change in front of others, I was very conscious of my body and tried to turn away and hide my chest. Then I realized that it was all in my head, and I had to get over it. I didn't want to hide forever. So I made a point not to turn away and even showed my scars to a fellow swimmer. Now, I often forget that I have a uni boob when changing clothe.
Another info: I had nipple sparing mx as I am small breasted. Having kept the nipple definitely gives me a more normal look. So, talk to your bs about it. The nipple sparing mx may not be possible if the breast size is too large or the bs may have to trim off some skin.
Good luck with your decision and surgery!
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Hi plover! Good to see you. Glad to hear that you are doing well.
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I agree that most people do not really notice my being flat - it is just something I am self conscience about. One thing that I did not expect is while I am flat on the front, I have a nice little fat bulge on one side which makes some shirts look odd. But that is again something just adjusting to how I look. My surgeon said that continuing to lose weight would help with this issue. If you have any other questions or just want some extra support feel free to email me - I will message it to you!
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I just thought of something else I just recently learned!! Finding shirts is probably the trickiest part for me, so when I find one I like - I buy more than one! My whole shopping on a budget and being frugal at this point has taken a back seat because I am dressing a whole new body and my options are not the same as they were - so finding one that fits and I like and it looks good is not taken for granted. Part of this has been quality shirts. For example the shirts at Target rarely work - the fabric is thinner and just lays differently whereas Kohls have a very nice fabric, fit nicely and just look so much better.
For example - this shirt. Great shirt. Lays nicely - has colors and that broken up on the chest area which helps give the illusion of not being flat. Plus it is a fake layer which I love.
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Mommy2Six, How did your surgery go? I've been thinking of you and praying for your speedy recovery.
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