No reconstruction- Happy w/your decision?

Erica3681

Yes, my m-i-l is an inspiration--bc at 31 in one breast, then in the other at 46. She's still going strong at 81, and is one of the most positive people I know--and still beautiful.

I didn't have a problem with the way I looked post-mastectomies. I'm not really sure why. I'm as vain as the next person, maybe more so. I actually felt that I'd be more distressed if I had reconstruction and it looked unnatural or uneven. I did look at pictures of women with mastectomies beforehand, which helped. And from these boards, I learned about dog ears (the extra skin that's sometimes left behind). I specifically told my breast surgeon that I wanted as cosmetically-pleasing a result as possible. She did a great job--my incisions are symmetrical and there's no extra skin. In some ways, I actually like the "boyish" look I have now. I was a 34 large B/small C before, so not as big as you, but I felt that being flat made me look more petite, which I kind of liked. And with prostheses, I sometimes go smaller than I was before, although I have a pair that make me look pretty much exactly as I was, too.

I was worried about what my husband would think, but he's been fine with it. In fact, he felt more strongly than I that I shouldn't have recon. So that helped, too.

The best photos I found were at this website: http://www.drdixiemills.com/ . Just click on the "Photos" link on the left, then click on the "Mastectomy Photos" link. There are lots of pictures.

So far, I do wear prostheses and I've found a number of comfortable nice-looking solutions. But I'm even tempted at times to go flat, something I never imagined I'd consider. I haven't done it yet, though.

The bottom line--you can always do recon later, if you decide you want it. Once you've cut muscle (for inserting an implant) or moved tissue, you can't undo these things. That's why I think it's worth at least living for a while without recon to see how you feel about it. But I know others don't agree with me--it's such an individual choice.

LindaLou53

Wallycat, my choice to have a bilateral mastectomy without reconstruction was not that hard because I had BC twice, once in each breast. The right breast showed no signs of any residual cancer but because they found lobular in the left I did not want to worry about dealing with cancer a third time.

I tend to be a very visually oriented person who looks for symmetry in nature and in my photography. I knew that a single mastectomy would be more difficult for me (and my somewhat obsessive nature) to accept than doing the bilateral. I took images of my chest before surgery and used photoshop to try to visualize how I would look with one breast vs being totally flat. I found the bilateral flatness much more pleasing visually and practical for me.

I have been fitted for prosthesis but I generally go "flat" all the time at home and very often when out running errands. I recently went to Florida for vacation and wore the prosthesis for a few days until I decided I was more comfortable in the warm weather without them. It is a little awkward at first out in public and I suppose I confuse a few friends and neighbors who see me both "with and without" my prosthesis but I just tend to go with what feels right for me at that particular moment.

No question that there is an adjustment period to the new physical image of yourself. It is especially scary when you have not yet had surgery and are unsure how you will react the first time you see the scars. I think you just need to know yourself and be honest with what you believe to be important for YOU. Many women who opted for reconstruction are happy with their choice. Many women who opted for no reconstruction are also happy. The same can be said for women who chose single or bilateral mastectomy. It is such a personal decision that others can only relate their own experience and hope that helps you in finding what is right for you. Best wishes in your decision process.

Linda

nagem

I was very nervous about seeing myself naked for the first time after my bilateral mastectomy, but like the others here, I found that it was surprisingly untraumatic. Sometimes I feel a little wistful when I see a voluptuous young woman on the street displaying her cleavage and realize that that particular kind of body pride is no longer possible for me, but it's a passing emotion and I get over it. I rarely use my prostheses now. They just feel like an encumbrance.

Yoga has really helped me come to terms with my new body, partly because the poses are so beautiful that you feel beautiful performing them and partly because it makes me feel strong and healthy. They say that the best thing to help our daughters cultivate a healthy body image is exercise. I think that goes for their mothers as well—particularly those of us with breast cancer. And forgoing reconstruction made it possible for me to get back in shape sooner.

Part of this whole breast-cancer experience for me has been finding tools to deal with reality, and being flat chested is just another aspect of my reality now. It's a growth experience to look at, acknowledge and deal with all the feelings that arise from cancer. At the age of 57, I've been forced to finally grow up and leave behind some of the physical vanity of my youth. And that's not entirely a bad thing, since it has forced me to look elsewhere for gratification and self-worth.

When I was bald from chemo, I confided to a friend who was several years out of treatment that I was ok except when I looked in the mirror. "Then don't look in the mirror!" she said. And she was right.

Good luck!

tos

When I had my bilateral 4 wks ago it was because I had been dx again in the other breast and like some of the others I wanted to reduce my odds of it coming back, it was very hard for me to decide but I know I've done the right thing for me but I still whirl it around in my mind.
I don't regret doing it but it is a new reality like nagem
said that is part of my life now. It's a change that I'm still adjusting to but I know I'll be fine.
I probably went 2 wks or better before I looked and it was a gradual thing.
I too learned of the dog ears here on this board so I asked my surgeon to do the best he could to make my scar nice and he did a wonderful job, he worked on me for 5 1/2 hrs.
Probably the most irritating at this point is that I ran into some fluid problems so have had to go back and get aspirated several times but think tomorrow is my last time.

Lass

Hi Everyone,
I decided to write an update as I responded to the thread just after I had my second mastectomy a month ago. I am now healed and have full movement back in my arm. I'm very happy that I decided not to have reconstruction as the flat look is working very well for me. It's wonderful not to have to wear a bra, my t-shirts look fine as do my old bandeau style swim suits and it's so much cooler in hot weather! I've been at the beach and nobody seemed to notice that I don't have boobs. Friends ask if I've lost weight (I haven't) but I think I look thinner because I am flat now. So for those of you on the fence about reconstruction/prosthesis, I encourage you to try going flat for a few weeks and see how you feel. At the end of the day, the important thing is how we feel. My husband thinks I look great and that I don't need to use prostheses to look good.
Hope this helps.
Take care everyone,
Lass.

wallycat

Lass, may I ask how big you were pre-mastc?
I'm a 34/36 D and "THINK" I will be OK flat chested, but am still on the fence.
Of course, doc is very upset with me and wants me to just do radiation and be done with this...I just worry it will come back.

I'm asking about previous size because you said your t-shirts fit well...I'm curious how much change there has been.
TIA

cmorris58

To add a perspective from the opposite end of the spectrum i.e. being "flat" before my bilats I thought it would be an easy transition, I had none before so I have none now, but, I found out there is simply something to seeing yourself really "flat chested" Like many here it took some time to get used to myself but that said I for one an happy I had bilats, it took some convincing of my surgeon but he obviously did it. As with the others here I always knew I could have reconstruction or as my husband says construction so I could change the "new" me. It is over five years and I am happy with myself, every once in a great while a tinge of sadness creeps in but it goes away right away.

I think one of the most important things was the support and understanding of my DH. But, it is a very personal choice. I wish I would have had this board as a support then
Cate

Lass

Tia....I was 36B before and find that my t-shirts now fit a little loose across the bust which works well to hide the uneven surface. When it's cooler I wear a cami and zipper front yoga jacket and you can't tell at all that I don't have breasts. When I tried on my good dresses I realized that I will need to wear those light forms so the dresses fit properly but that's OK as I don't wear dresses very often!
Hope this helps.
Cate, I feel a tinge of sadness at times too that I've lost my breasts but I'm happy that they are gone so I don't worry as much about an ILC recurrance in the other breast. The pathology after the second mastectomy showed that it was clear which was good news to me and I have no regrets.
Take care,
Lass

lv2cmp

I was a 36C before BC and opted for a bilateral mastectomy. I was going to do recon in New Orleans but it was when the hurricane came so it got changed. I never made another appointment and so far I am happy with that decision. I go without prothesis 99% of the time. My hair isnt that short, shoulder length, and I do get called sir on occasion but so be it. I'm me. I cant imagine having another surgery and what if there were complications to it,,I just dont think I could handle it.

I did tell one person that was staring at my breast that yes I didnt have breast and that I lost them in the war but I won the battle because I am still living.

Amy

marlee1

Hi, Erica, I've been reading and appreciating your wise advice on all of the discussion "threads." Now, I'd appreciate more advice . . . my bilateral mast is scheduled for next Monday and I'm trying to prepare clothing ahead of time, based on drains. Which do you think will be best? P.J.s or nightgowns? Button down shirts or pullovers? Slacks and tops or loose dresses. Any advice would be a great help.

Marlee1

Erica3681

Hi Marlee1,

I just read LindLou's answer to this question on her picture thread and I thought going to a uniform store was a great idea--something I never thought of.

The drains are definitely a challenge. Hopefully, you won't have them for too long (mine came out after four days and I was very thankful). I totally agree with Lindalou that at first pullovers aren't a great idea. I used one of the camisoles that are designed to hold drains (and have soft puffy forms to fill you out, if you wish to use them) and wore comfortable button-down shirts over the camisole. I looked a little bulky (the drains have "bulbs" at the bottom) but otherwise okay. Even after the drains were removed, I wore the camisole/button-down combination.

Eleven days after my surgery, I was invited to a good friend's birthday party and was determined to go. I wore a softee cami with puffies, a silk button down shirt, with a nice vest over it (I'd bought the vest ahead of time with this purpose in mind). Although a few people there knew of my surgery, no one else seemed to notice anything unusual about the way I looked.

Re pj's, I ordered a couple of pairs of pj's from Nordstrom's that had comfortable pant bottoms and button-down tops (one was pink and part of the profits went to bc research!). As for daytime dressing, I'm not much of a dress person and had no problem with slacks and tops.

The good news is that it wasn't long at all before I was able to once again wear pullover tee shirts, etc. It was just the first week or two that were difficult.

I hope this helps. I think the more prepared you can be, the better. A wedge pillow is a great idea, too. I found it too uncomfortable to sleep flat for a couple of weeks.

tos

Marlee1 first of all I hope everything goes smoothly for you Monday.
I had mine 4 wks ago and I was lucky that my sis gave me a nurse's type smock that she had worn once, she works in a hospital and I took that to wear home from the hospital and whenever I had to leave the house like going back for check-ups until my drains were removed. I also had the cami w/the softies and a pocket for the drains which really helped.
After my drains were out I have been most comfortable in button down shirts, sleeveless as it's gotten hot, printy to help distract my flatness, which is still something I'm getting used to but I did go to WM and bought a couple of front closing sports bras a couple of sizes too large as I still have some swelling so when I want to have something on underneath I feel better. It's still going to be awhile before I can get fitted. I'm looking forward to that but have to admit it is nice being able to go w/o a bra most of the time.

WandaG

I was diagnosed in '05 and had a right mastectomy.I was a 34D and I wanted a bilateral, but my breast surgeon did not want to do the bilateral. My cancer was ILC and 7.5 cm instead of the 2.5 they originally thought and lymph node involvement. My surgeon agreed to and did the second mastectomy 5 weeks ago. She said it would reduce my chances of reoccurence significantly and I am so very happy to be flat chested and less worry.
Everyone has to deal with their own feelings and make the decision that's right for them. I only wish mine was bilateral to start with.
Best wishes, Wanda

betsy52

I am just now finding this site and wishing I had found it back on October when I was thinking about recon or not. I had breast cancer (left side) and lumpectomy in 1995, and then in 2006 got it again (left side) and had mastectomy. I considered reconstruction vs not, and gave it far more thought than getting married (I knew he was right for me and 28 years later, I guess so). I went for no recon and have not regretted it for a minute. I am using the amoena with the climate control and frequently forget I have it on. I don't bother wearing it when I am doing any exercise as it seems wierd to wear this silicone thing just to be even.
Amazingly, I find very few people seem to be looking at my 55 year old chest, can you believe it?
I am finding it a bit uncomfortable undressing in gyms, though, as having that scar on one side can be a shock if you're not expecting it. Anyone have any insights on handling that?

wallycat

Betsy, welcome!
First, I'm curious why a lumpectomy for first occurrence and a mast. for the second?
I just read your post to my husband and his response was..."in this day and age, no one should be shocked about breast cancer." My personal feeling is that if YOU are comfortable not going into a dressing room (I never did, I just changed by my locker) then anyone who is nosy and looks should deal with their own "shock." It isn't your job to make it easier for someone else! Besides, you may be a gift to someone who has just been diagnosed and needs help making that decision themselves!

TeaLoverDenise

I had reconstruction (reduction on good breast; lift on radiated breast) in December that has really gone bad. I have a massive amount of fat necrosis (plus an open wound that will not heal) and my PS and a surgeon (whom I went to for a second opinion today) have both confirmed that I am going to have to have a mastectomy. After all of this hassle, I, too, am seriously considering NOT having reconstruction further on down the road. I really appreciate everyone here sharing their experiences. It's been very helpful to me on a day that has been rather overwhelming (I lost my job last Friday, as well).

Can anyone tell me what the general recovery period is after a mastectomy? I've got to start looking for a job asap, but will probably have the mastectomy within the next week or so.

Thank you!

wallycat

I had my bilateral surgery on Wed, 13th. They forced me to stay overnight, but I was whipping myself in and out of bed to go to the bathroom without nursing help. I bought the wedge pillow but never needed it...must be all those sit-ups and yoga poses or something...no pain or problem pulling myself up.
I have not take a pain med since the surgery. It is a bit tender when I try to lift my arms overhead, but I begged my surgeon for NO DOG EARS, so he had to suture under the arms as well to remove any excess skin. That is really the only tender part and not bad.
I began doing my yoga 48 hours after surgery. No back bends and balancing on my arms poses (per doc's orders) but everything else.
Occasionally I will get a twinge or nerve endings that feel a bit raw, but that only lasts a minute or two.
The worst thing is sleeping on my back as I am a tummy sleeper (but I'm getting less puffy eyes and wrinkled face ) and the DRAINS. Hate the drains. LAst 2 come out tomorrow!!!
It is odd to look and feel so skinny, and the thought that no one will long for my 34D cups, but at 50, they were not perky and as someone posted...who is wistful looking at a 50+ set of boobs unless it is your SO/hub !!
Best to you!

SusaninSF

Wallycat, glad to hear that your sugery went well and that you were able to do some yoga only 48 hours after surgery! Do be careful about over doing it though. My teacher, Manouso Manos wouldn't let me go back to class for 3 months after a right mast. I still did poses on my own but only very gentle ones. PM me if you want some post-mast asana suggestions.

Regarding the bilateral vs. unilateral mast question, I had a unilateral but often wish I I had done bilateral. As some one said earlier in the thread, what use is one breast? No cleavage, can't wear anything low cut anyway. I would love to be able to go flat but feel that the uneven thing looks too weird. I'm a 32DD on my left breast so I have to wear a pretty big prosthesis, size 7, to match. Finding bras is very difficult for me. I would love to have the choice to go flat or wear a couple of small prostheses to get to a 32B or so.

I am very glad to be without recon. I tried for almost a year but after six surgeries and multiple complications, I was relieved to get rid of the implant. In any case, the implant never felt comfortable, particular when doing back bends. It would stick out like a softball under my t-shirt. That's far more embarassing looking than being flat on one side!

Hugs, Susan

Raye99

Hello everyone. I am struggling with the decision on whether to have reconstruction or not. I had a left mast back in August of last year and am having a proph mast to the right breast in September of this year. Due to radiation, I cannot have implants, and the ps states that the TRAM flap would be best option for me. Quite honestly, it scares me.

Soooo, I am considering doing nothing for the time being. I am small anyway - an a cup. My husband actually told me he would prefer that I didn't have reconstruction, as he worries about the complications, etc.

It is so good to read you ladies' stories and how you are happy with yourselves w/o having done the reconstruction. Thank you for sharing them.

Betsy, to address your gym question. I too, was so nervous about changing in the gym. I try to find a row of lockers without any other women and frantically change my shirt. A woman came in one day in the midst of my change and started chatting. I was open with her and confided that I had had a mast and that I didn't want to shock her. We had a long conversation after that.

Raye

joanne_elizabeth

I haven't heard good things about reconstruction. The cosmetic effect is not great I understand. There is alot of pain in shoving these bags below your chest muscle and at this time I can't imagine having elective surgery.
I can't say I am happy I have one breast, but I am not sorry I didn't get bags shoved into my chest. I just shove a little prosthesis into bras, etc. and it hasn't been an issue too much.

OLBinNJ

I had immediate reconstruction, and a year later had the implant removed. I was uncomfortable for that whole year. After each fill, I could feel my body tightening around the implant, but didn't realize the significance of it. After a year, my incision opened and started to ooze. My skin was just too thin, probably from the radiation. I had the implant removed and am so much more comfortable, but I have been on a mission ever since to find the perfect prosthesis.

DWS43

I am writing here unexpectedly. After my second DCIS diagnosis following 3 surgeries and radiation, I figured no reconstruction or DIEP. I viewed the reconstruction as gravy but really did not feel obligated to do it at first. After researching my options, I fixated on DIEP and really ruled everything else out figuring immediate reconstruction was the norm.

Well, I just came home today after my flaps failed. Unknown cause for now. I am a little too out of it right now but I need to figure out what you wear when you have not had reconstruction. Obviously I am none to eager to undergo reconstruction again. I went from a 36E to not knowing what type of bra I will need, whether I will use prostheses or what.

I am glad there are people here that I can learn from.

D

OLBinNJ

D,
I have tried a number of breast forms in my quest for the "perfect boob". I like the Amoena contact light that sticks to your chest, but only in the cool months, and after a while it's not as sticky and I use wardrobe tape (double sided tape) to help it stay in place. One of the things I like about it is that I can wear it with any bra as I have never found a mast bra that I liked. I recently got an Amoena 126 leisure form that I love, it's very light which works for me because I'm small (34 A/B). I have tried to "build a boob" with cookies and enhancers, and found that works best for a bathing suit because the leisure form takes a long time to dry. Go to www.parkmastectomy.com and look at the different forms from different companys. Then find a good fitter that will work with you and order a bunch of forms for you to try until you find what works for you. Everyone is different, and there are a lot of variables, age, size, lifestyle, etc. The form that worked for me a few years ago doesn't work as well for me now. The shape of my remaining breast has changed as I got older, so I continued on my quest for the right form. Good luck to you.

SusaninSF

D,

Sorry to hear about your DIEP failure. Like you, I had two DCIS diagnoses. The first when I was 36 and the second when I was 42. Also like you, I had a failed reconstruction though mine was with an implant.

As OLB said above, there are an incredible number of choices for prosthesis. I kind of rushed when buying my first one because I had no idea there were so many choices. I figured they were all about the same. I do still use the first one I bought so it is not a complete waste but I more often wear the Amoena Contact Light form that OLB mentioned.

I think that most of us eventually find that there are different forms that work for different occasions/weather/clothes. This doesn't mean you should rush out and buy several forms but over time you may accumulate different ones so you don't have to feel that you'll have to live with your first decision for the rest of your life.

I generally wear a regular bra with my Contact Light though I did buy new regular bras. One benefit of getting a thorough fitting (I did mine at Nordstroms) was that they measured me for bra size. I found that I had been wearing the wrong bra size for years! I think many woman wear bras that are too big around and too small in the cup. That was certainly the case for me. Anyway, if you are already properly fitted, you may not need to buy new bras.

The only time I wear a mastectomy bra is when I'm going to be sweating a lot. Then I wear my original TruLife form. It is not the contact type so it has to be placed in a pocket. There are also many woman who wear regular bras and have pockets sewn into them so again, not necessary to go out and buy a bunch of new bras.

There are many threads on this site with helpful hints about prostheses, bras, swimsuits, etc. so I won't try to write it all here.

This board is a great support. We're here for you as you go through the process of getting used to life in your new form. I hope your recovery from the failed flap surgery goes well.

Hugs, Susan

DWS43

Thank you both soooo much for the feedback. I had been fitted before so I knew my pre-breast cancer size was accurate but my reconstruction had involved reducing my breast size, so it sounds like my instincts to go for a fitting would be best for now.

As I learn more about my options, I can try different things.

If it is okay, I would like to PM both of you so as not to hijack this thread.


Thanks Again,

D

Erica3681

D,

Sorry to hear about your flap failure. That must have been disappointing. But living without reconstruction can work out well, too.

You've already gotten great advice. I just wanted to talk about your immediate recovery, as it sounds as if your flaps just failed, so you'll need to heal a bit before purchasing permanent prostheses. If you don't have one, you may want to purchase a post-surgery camisole, which comes with very soft "puffy" forms, which are gentle enough to wear for the first 4-6 weeks. They don't look as natural as the forms you'll be able to wear once you're healed, but they're very comfortable and, with careful dressing, you should be able to go out and about without feeling self-conscious. The camisole that most women (me included) seem to like best is the Softee: http://www.parkmastectomy.com/Merchant2/...ectomy_Products

I had bilaterals and went to be fitted for silicone breast forms after four weeks. In retrospect, I should have waited a little longer. My chest still was a bit swollen and tender, so I couldn't judge what would be comfortable and look good down the road. As a result, I used my insurance to buy breast forms that were too small. I had to buy a second pair out of my own pocket a couple of months later. One good thing about the first pair--they were Amoena Climate Control, very good for keeping you cool. The fitter I went to for my second pair didn't carry those and suggested a lightweight silicone pair. They're nice and I do still wear them, but I continued to search for the best option for me. I found Airway Tritex Triangles, which have a microfiber back and can be worn in regular bras.

At this point, nine months out from surgery, I feel very natural and comfortable and glad I didn't reconstruct. But as you can see from the above, it is a process of trial and error. I compare it to the time recon girls take with expansions and/or revisions. Feeling comfortable post-mastectomy takes time, whether you've had recon or not.

Barbara

DWS43

I appreciate your reply. Would you happen to know how long after surgery you should wait before being fitted? I tried to wear a sports bra yesterday and I think it may have been too soon.

D

DWS43

Erica,

Thank you, I actually posted my message while you were posting yours. So you answered my next question.

scs

Hope that you check this board. I, too, had bilateral mastectomy without reconstruction (Stage 2A right side and prophylactic on left..58 years old) And had dog ears on both sides and in middle. Waited a year to decide if I wanted reconstruction (was considering DIEP) Decided to have plastic surgery for scar revision;still have the option for further surgery/reconstruction. My ps also "contoured" my chest. I now have nice pecs and fullness around the upper chest without the dog ears. Do have cavities; but they are not noticeable in clothes. I wear high necked regular bathing suits (important because I am a sailor and grandmother of beach goers/swimmers.) Almost no one looks at my chest! I am very comfortable and content with my decision. Wish I did not have scars and no more showering or changing clothes with little ones around. Only thing I would change is that I would have insisted on digital mammos and MRI as soon as they came available. That said, my treatment has been successful and no reconstruction suits me well! Good luck!

sheila52

It's hard to believe but this month marks an anniversary of sorts. Three years ago I had a mastectomy and I don't regret not having the reconstruction at all. I'm happy going lopsided most of the time or with a cheap breast form tucked into my bra. I felt as many of you do. I just didn't want to think about more operations or procedures. The expensive prosthesis sits in a drawer since I never liked the weight of the thing.