reconstruction or not ?????

Erica3681

Hi TillieMae,

You've come to a great place for support. It's not easy losing our breasts, whether or not we opt for reconstruction. I chose not to reconstruct and have been very happy with my choice, but I agree that our culture really emphasizes breasts and cleavage, and since my surgery I've been much more aware of this than before.

It's true that some docs simply can't believe that a woman could feel whole and happy without reconstruction. But many of the women here do feel happy with their choice not to reconstruct. Some even choose not to wear breast forms and go flat. I feel too self-conscious for that, so I've made it my mission to find comfortable breast forms. I honestly think I look at least as good in clothes as before. And I can wear low-cut tops (though no cleavage, of course).

I've created a non-profit website, BreastFree.org, which presents non-reconstruction as a positive alternative to reconstruction. It has personal stories, photos, and advice about breast forms, bras, swimsuits, etc. You might want to check it out. Many women from this site contributed to my site. If you like the site, maybe you could even tell your doctors about it. They might simply be unaware that some women feel positively about not reconstructing. When I told my doctors at a major medical center in Boston about BreastFree.org, they all started referring their patients to the site. So now, when new patients requiring a mastectomy get a referral to a plastic surgeon, they're also told about BreastFree.org, so they can consider ALL their options.

Regarding lymphedema and tattoos, you might pose that question at the lymphedema forum on these discussion boards. I believe our resident expert, Binnie (who's also a non-reconstruction gal), has some concerns about the tattooing process and lymphedema risk.

Barbara 

sahalie

Hello Vivian.

I had my bilateral mastectomy in April 2006.

When I had my first meeting with my surgeon after dx.

I knew I wanted a bilateral mast. so I wouldn't have to deal with another Kaboom down the road.

So he granted my wish.

I had NO reconstruction and have been so much happier ever since.

What a free feeling.

I wear no prosthesis.  Just comfortable tees, tanks etc.

My husband passed suddenly three weeks after my bilat. mast. at a young age.

He was the love of my life so will not marry again so I figure what the heck.

I love being flat chested. 

I save money on not buying bras.

I hated bras anyway.  So restricting.

It's funny though. 

Even two years from surgery every now and then I get the feeling

I need to pull on my bra strap.

Good luck with your decision.

I am extremely happy with mine.

Sahalie

jacqueline56551

Viv: I had inflammatory BC. I knew right from the moment that I was told I had to have a mastectomy that I wanted a bilateral with no reconstruction. I remember not saying my feelings outloud for fear that my Dr.'s would say that I am reacting emotionally. However; after waiting a few months my thoughts remained the same and I followed through on them.

I thought I would want to wear prosthesis but I am finding them very uncomfortable so I am thinking of going the camisole route with enhancers  that I have seen other people mention on the boards.  

Admittedly; if the stlye of clothing I am wearing does not dictate wearing prosthesis I don't wear them. Truly; I wish I had the confidence to not wear a prosthesis all the time.   

It is a very personal decision that involves your concept of self, your medical situation, where you are in your life at this time, etc.  

Good luck with your decision making.

Jacqueline 

TillieMae

Hi Barbara & thank you for your reponse & info.

 Support is absolutely what I need.  There's support here at home, however, speaking to people on line & in person who have gone thru or are going thru breast ca is an all together different kind of support.

I took a shot at going in public totally flat.  My hair had barely begun to grow back at the time & I was very self-conscious.  Now I have some hair so I might try it again.  I have some breast forms & they look natural in most clothes.  I'd like to get past being self-conscious so I'd have an option on some days to go without the forms.

I'm going to go onto your site.  Thanks again.

TillieMae

Hi Barbara & thanks for your response & info

Yup, support is what I need.  There's support here at home, however, speaking to people on line & in person who have had similar experiences is a different kind of support.

I tried going flat at one point.  My hair had barely begun to grow back at the time & I was way self-conscious.  I have some breast forms & they look natural in most of my clothes.  Now that I have some hair I'd like to try to go without the forms & see how I feel.  Right now, I'm not brave enough.  I greatly admire women that are.  Whatever the case, it's not about what we actually look like, it's all about whether we have a negative or a positive body image of ourselves.  I'm working on making mine more positive although I find it difficult.

I'll be going on to your Breastfree site.  Thanks again.

rrs

I think cleavage is over rated.  I'm thinking of bi-lat proh mast and am trying to get my head around it -- this discussion and Barbara's website is helping me a lot.  I was thinking about recon but I'm now thinking, why?  I've had larger breasts and have often felt self-conscious about them.  I don't like people looking at my chest.  Now, since the BC and lymphedema sleeve, people seem to look at my chest out of curiosity.  I know they can't help it but it is bothersome.  I think having a flat chest would be freeing.  I remember that I didn't mind it before my breasts developed until I noticed that other girls were a little ahead of me in development - then I REALLY wanted them.  Boy, if that isn't a case of "be careful what you wish for" I don't know what is.

I wonder how many of you have had the skin saving procedure and how that went. 

pip57

I am a little late here, but for others wondering about reconstruction or not, I wanted to give my two cents worth.  Like a couple of the above posts, I am quite happy about my decision not to recon.  I have prost but I never wear them.  

When I read about complications and pain on the other threads I would guess that almost 99% of them are due to recon.  And since only 1 of my many tumors showed up on the scans, I would be very uncomfortable with scan results of a reconstructed breast. Of course, there is also the matter of having to leave some breast tissue behind for the recon that also made me uncomfortable.

And I do have 'some' feeling after the masts.  When I asked on another thread if anyone with recon had any feeling, no one replied that they did. 

I understand that some women place more value on their breasts than I do and that reconst is the right choice for them.  But I feel quite liberated being boobless!

chemomom

I am also late finding this thread but wanted to chime in, as well.  I am slightly under a year from my bilateral mast.  I have no recon and no prosthetics.  I could hardly be happier.  I wanted to put in my 2 cents since last year, when I was looking around, it seemed that the choices were either recon or prosthetics and I was an oddball for wanting neither.  So I am really pleased to have found at least a few other brave souls that are boobless and beautiful! 

I was very large-breasted before so that certainly colored my opinions to begin with, but I can't even tell how happy I am with my decision.  In my case, I have 2 young kids and I wanted no more problems (from recurrence or recon!!), so that was also a big part.  I am now a jogger and am finding I can live a much healthier lifestyle without boobs to worry about!

The scars in my situation are extensive (I have about a 1/4 inch in the center of my chest that didn't get a scar and both sides go almost all the way around my sides (again-- I was large).  But over time, the scars and swelling are lessening.  I also often wear an undershirt or cotton sport bra to help keep what I have left from showing thru.  And while I have felt fine being boobless, I am not "proud" of the scars and I am just now starting to feel "comfortable" letting my husband see me without a top. But it's coming along.

So there are options out there and I am 100% happy with my no recon & no prosthetics decision.  It's totally a personal decision.  Good luck to all who come along having to face these choices like we did.   

pip57

Jogging!  Now that is something I definitely could not do with my boobs!  Don't forget, no more bras to add to the risk of lympoedema.  

otter

I am 6-1/2 months out from my left mast/SNB, and I am soooo glad I did not have recon.

At the time, I chose no recon because I didn't want the hassle and added pain, and I wanted to heal and get on with my life as quickly as possible.  What I didn't know is that I would need chemo; so that added another 3 or 4 months to my BC itinerary.  Toward the end of chemo, I developed some generalized edema (thanks to Taxotere), as well as some cording and swelling in my left arm.  I still have a bit of transient swelling under my arm at the drain site, and that has slowed my progress--I still haven't been fitted for a prosthesis or mast bra.

In the meantime, I wear loose-fitting sports bras (is that an oxymoron?) with a fiberfil puffy (comfy?), when I need to wear a bra at all.  As for the flat chest and lack of cleavage, I've never had cleavage and my upper chest has always been bony and flat.  BC and my mast have not changed that at all.  In fact, I can still wear exactly the same shirts and blouses I wore before, because my upper chest is the same on both sides and my scar does not show.

This is a crazy "adventure" we're on, and we each have to make our own choices to suit our own lives.  I'm just grateful to the women in this section of the BCO boards for convincing me it was OK to lose a breast and not want to replace it.

otter 

MariaG67370

I had my Bilateral June 12, no recon. (both were my decision)  I don't want a recon.  Nor have I been fitted for a prosthesis yet not sure when or if I will.  I feel very comfortable with my decision and with being flat chested.  After being a 40  D most of my adult life I have enjoyed just wearing a light Tshirt during this hot New ENgland Summer and not have to struggle with a binding bra. As for swim wear a Spedo type bathing suit fits the bill. I am a single 58 year old woman, the key word here is I am a woman and I am a woman because of what I say, what I do, what I accomplish and what I give back to the community, not because I have two bumps showing from my shirt.  I have no problem with being boobless.  The decision to recon or not is a personal one and each woman making that decision has to do what feels right for her and for nobody else.  On another happy note, When JC Penney has its semi-annual bra sale I can now take the money I used to spend at the sale for bras and put it in my vacation fund! 

shrink

I had a bilat MRM in Dec. 07.  I do have prostheses but wear them only when the dress or shirt I'm wearing really "needs" it to look OK.  Most of the time I'm flat and fine with it.

msphil

Hello sweetie, I opted for reconstruction right after left mast, but my body rejected it after only one filling, so I had it removed, pain I should not have had to go through, I have a prothesis and wish I had done this in the beginning, I am 15 yrs cancer free this december, Praise the Lord. msphil

Katie2u

Hello everyone:

   Thanks for sharing your stories.  I had a bilateral mastectomy in July, 2008.  My surgeon was pushing me toward reconstruction stating that woman who have  reconstruction "fair better psychologically."  Of course he is 30 something and I am 53.  I think other people (such as the nurse and doctor and other medical personnel that you have to undress for) are a little taken back by the appearance of no breasts.  Now I tell them in advance of a medical procedure... "oh by the way, I have no breasts due to breast cancer and I didn't want to startle you"  hehe    I have no regrets about not having reconstruction.  I enjoyed the temporary soft inserts that I received at the hospital and just picked up my Amoena prosthesis a couple of days ago along with some mastectomy bras.... (ps.  in case you weren't aware, insurances have to cover at least the first set of prosthesis and 6 bras from what I understand.)   I just bought a fantastic looking swimsuit and with the new prosthesis you would never know it wasn't the real deal.      Good luck to everyone!! 

Erica3681

Katie2u,

I know what you mean about not wanting to startle medical personnel. I had a mole check at my dermatologist's (a woman) the other day and made a point of reminding her that when I opened my gown, there would be no breasts there. I said "I don't want you to be shocked," then joked that "I've gotten over being shocked, myself." She laughed and that was that. I'd rather warn people than see a startled (or worse, horrified) look on their face. 

Barbara

janniexy

I too had a bilateral, one advanced dcis and one preventive.  After my husband and I visited the ps, I looked at my hubby and said I don't think I can go through all that.  And he agreed emphatically.  He just wanted me to be happy, healthy, cancer-free and pain-free.  I'm not thrilled about not having boobs, but there are worse things in life.  I just didn't want to opt for pain, more surgeries, cutting perfectly healthy chest muscles, and the chance that implants might fail.  An additional year of trauma--if I had to have radiation, the ps said "we'll just slip them back out of there while you have radiation."  I don't think so!!   Reading everyone's comments just reinforces my decision.  I never thought about tattooing my chest--now there's an idea.

I do wear a protheses.  It looks great.  I am also pleased with the variety of blouses/tops I can wear.  I can wear sleeveless tops too. Obviously I can't wear deep v's, but I have sewn a piece of fabric into the "v"  in some shirts which were a little too low cut.  The inserts are popular now anyway.  (And by the way, you can also using iron-on tape to attach a "v" insert.)

I wear the Amoena "jada" bra and love it, with size 7 forms.  It's very natural looking and friends tell me they sometimes forget I had breast surgery.  I will say sometimes the bra gets uncomfortable like any bra I ever wore.  I do go without it generally in the evenings.  I am a little self-conscious sometimes w/o, but overall I'm very happy with my decision. 

I'm 63, married and not having boobs hasn't made any difference in our sex life.  Lack of estrogen, post-menopause, has made a difference in my libido.  And my hubby has some problems with ED, due to enlarged prostrate and some meds.  We get older and we adjust.  That's life.

I love life, I love being here for my adorable 2 yr old grandson, I love being active and pain-free.  Life is good and too short to choose pain.  My breast surgeon said "you will not die from breast cancer".  And, having had a double mast, I don't have to live life in fear.

Wish everyone here the best, whatever their choice!

Jan

Katie2u

HI everyone:

  When I went to pick up my prosthesis and bras the other week the lady who worked there told me that the failure rate for expanders and saline or silicone implants are fairly high.  The body can reject what isn't natural for it and they have to be removed.  I'm glad that I chose not to reconstruct.  The forms are great and look natural.  Good luck!   Katie

Sociologist

Hi Ladies,

Just want to add my 2 cents...I was reconstructed in December and HATE THIS FOOB! I have a ps appt tomorrow afternoon to see about being deconstructed. I have a silicone implant and the boobs do look wonderful but feel awful. The mast side is always sore and feels almost as uncomfortable as the expander. I saw the ps 6 months after the exchange and told him I wanted it out then and he said "No, it's too soon". I thought I had a say in this!!! I'm to the point that I should have a few strong Bloody Mary's and hop on the kitchen table and take this thing out myself! If he doesn't agree to remove it in December after my semester is over, I will find another surgeon to do it.

Barbara, I love the breastfree.org site! I wish I'd see it BEFORE the recon so I wouldn't be in the pickle I'm in now! I think it provides a very needed service for people so they can truly weight all their options for recon or not. I'd originally decided against recon but others I knew that'd had breast cancer and recon kept telling me how much I'd regret not doing it, etc. I should have trusted myself more on that for sure. No worries though...everything in life is a learning experience and with that, I learned to trust my own judgement. Thanks for devoting so much time and energy to that site (and this one too!).

Thanks for listening. Yall have a good night.

Margaret

Erica3681

Margaret,

Thank you very much for your kind words about BreastFree. Like you, I found it very hard to sort out all the conflicting advice I got before my bilateral surgery. My inclination was against recon, but I did consult a plastic surgeon and even scheduled bilateral lat flaps (I'd had previous radiation) before deciding not to have reconstruction.

I would imagine that the fact that your foob looks so good must make it tougher to contemplate getting rid of it. But I hope your PS will honor your decision and I especially hope that removing the implant will remove all your pain and discomfort.

You are so right that all this has been a huge learning experience. If you do have your implant removed, you'll start on a new path of learning what works best for you. For me, at least, that was a process of trial and error. My husband and I laugh about the many "breasts" I have hanging around the house. (Two pairs were acquired with insurance; most of the others are various less-expensive non-silicone options.) In all of this, reconstruction or not, a sense of humor is certainly helpful!

Barbara

lisa-e

I had a bilateral mastectomy without reconstruction about 5 weeks ago, so I am still in the healing phase.  I was very busty before the mastectomy and even though a plastic surgeon helped my surgeon plan the incisions so I would have have a good cosmetic result, the scars are long.   My range of motion has been effected so I am starting physical therapy and I expect that to help.

I am happy with my decision and think I look fine without a prosthesis.   While I have gotten a few puzzled looks from casual friends (male, of course) I don't think most people notice anything odd about my appearance.  When I can start wearing a prosthesis, I'll get one to wear if I want to wear clothing that would look better if I had 'breasts'.  

Reading the threads on this site and looking at BreastFree helped me feel comfortable with my decision not to have reconstruction.   When I was considering reconstruction versus no reconstruction , my surgeon referred me to a plastic surgeon so I could make an 'informed decision.'   The plastic surgeon had me watch a video about reconstruction.  As I think a truly informed decision can only be made with input about all options,  I should have also been required to watch a video about opting out of reconstruction.

nagem

Lisa-e, You are so right! Doctors were eager to have me watch their stupid videos and look through their photo books, but I had to call SHARE, a self-help group for women with breast or ovarian cancer, to find anyone who would talk to me about the alternative to reconstruction. Really frustrating! 

Sociologist

Hi Ladies,

Got back from the ps a couple of hours ago and he wants me to see a pain management doc before he'll remove the implant. I spent the last couple of hours crying and being REALLY PISSED!!!!! He believes the pain isn't with the implant but the tendon holding the implant and pain management may help. I am allergic to codeine, darvon, vicodin, percodan, and oxycontin...the only one I can take without hugging the toilet is meperedine which most don't like to prescribe.

Lisa-e and Nagam, I totally agree with you in that an informed decision should require that ALL alternatives should be presented in an unbiased manner. They briefly mentioned not doing anything but talked more about what they could do to make me "whole". I am whole with or without a foob! His nurse spent a half hour on the phone with me a few minutes ago and said because I had such a good outcome he may be reluctant to undo his work (same thing you said Barbara). She's great and is making the required appt with the pain doc for me. Hopefully it'll be a short visit and he'll tell me he can't do anything for me and I can get this beast out of my chest!

Thanks for letting me rant. Now where did I put that bottle of vodka and my scalpel...

Margaret

1Cathi

Hi Vivian,

I am 48 and had bilat 2wks ago today (doing quite well mostly- stiff and sore) I opted for no recon based on radation to my L breast in 06 -  I was not willing to take the chance of complications.  Now well this is still very new to me  - I want to tell you I am as close to 100% ok with this as I think anyone can be - I really don't think anyone could ever not ever have some down time and sadness over this choice - but I am ok -  and happy to be alive and so very happy to be putting BC behind me. 

In a few weeks I will go for my prosthesis that I am certian I will wear (sometimes) but as I was quite small chested to begin with - my outward appearance has not changed a great deal (as my wonderful daughter of 28 so nicely told me -I don't look any diffrent - she is a D - I was lucky to be  a B cup) Now I know during warmer weather and swimsuit times I will have to make some changes in styles - that si still ok.  I am married (only 2 years now) and my husband from the start of all this in 06 (1 month after getting married) is so much more than supportive -  but it is about you Vivian  -what do you fell about your body - how do you see yourself. 

I am still sporting bandages right now, but have actually did a little "naked dance" infront of my full length mirror-  "the new sexy" , I just wanted to be healthy, I wanted no more scares, no more mammos every 6 months, NO more biopsies. I know I have made a great choice for me (oh yes I have cried a few times - I am sure I will again) but the 'BIG PICTURE" Makes it all RIGHT!!

GOOD LUCK TO YOU -XOXOXOXOXOXOXO

enjoylife

I am going to have my reconstruction done next summer June 09 I have a expander in and I am thinking of having my other breast removed and having both rebuilt at the same time. Does anyone have any views pro or cons on that I am 57 had chemo and rad and I just want it behind me and dont want to worry about it coming to the other breast I dont need them for nursing etc anymore and It would be a relief for me even though I know it can come back to you anywhere. I am a single and would like to have breast back but its just the same small size I was I actually had my hairdresser say that is a good cheap way to get a boob job, I told her why dont you get bc so you can have a boob job dumb wasnt she when I get hair back she wont be cutting it at all..Please let me know your comments on this its just a thought for now..

MAURA

Sociologist

Hey Maura,

You just have to do what feels right to you. I only had cancer in one breast and that's the only one I had done. For me, I don't think I could have handled dealing with everything at once. If I went with my gut from the beginning, I wouldn't be arguing with my ps to remove this implant! I love your comment to the hairdresser! Some people should just shut up when they don't know the right thing to say. Time is on your side for making your decision. I'm sure others that are more familiar than I will be along shortly. Best of luck!

Margaret

1Cathi

Hi Maura,

As Margaret said this is a personal choice and you must do what is right for you.  My story as brief as possible - I was DX @ 46 W/ILC in my L breast in 2006 - at that time I did lumpectomy , rads, tamox (for only 8/mo -to many SE) in the corse of these last 2 years I have had 9 other lesions biopsied on my R breast (2 excisional -the others needle) all came back B9 - but extremely atypical -  a train wreck waiting to happen.  My last biopsy was on 9/11 after those results I finally decided to have a bilat mastectomy (done on 10/17 - no recon), I was no longer mentally able to handle all the "scares" and the "wait and see approach"  - I DID NOT WANT CANCER AGAIN -  Although all my Dr's assured me it would be caught early and treatable  -  I DID NOT WANT CANCER AGAIN!!!

I opted for no recon because of my rads - unwilling to face the possible complications .  I will be 3 weeks post surgery tomorrow,  I have had a few times of emotional sadness -  but 98% of the time I am just fine with my decision - I believe this is what I had to do to save my life. 

My surgeon said to me Tuesday when I saw her "YOU SEEM SO MUCH HAPPIER NOW" And I am.

Noone can tell you what to do,  you have time to make a decision that is right for you-  It took me 1 full year to finally be confident and comfortable with my choice.

GOOD LUCK! - Cathi

Erica3681

Mamhop,

You are right that surgeons always try to remove every possible bit of breast tissue when doing a mastectomy. Perhaps the person who said that confused the skin that is often spared for reconstruction with actual breast tissue. I have a wonderful breast surgeon at Beth Israel Deaconess (I think that's where you had your recon, right?) who was completely indifferent from a cancer point of view about whether or not I chose reconstruction.

I think we're lucky today to have the option of reconstructing or not. But it's still sometimes challenging to decide what to do.

Barbara 

GryffinSong

I'm so glad to see this topic. I'm in the early stages of diagnosis, but am leaning strongly toward double mastectomy with NO reconstruction. I'd rather be flat chested than worry about complications with a rebuild. It especially freaks me out that there would be damage to healthy muscle and such to make a fake boob. No thanks!!!

Thanks to all of you for sharing your stories.

sftfemme65

Maura,

I too am looking at having reconstruction next year and I will have my right side removed then.  I do not want to worry every year about the breast that is left.  A mammo missed my cancer so I have no faith in them anymore.

Teresa

susanmary

I had a left boob mastectomy at the end of 2002. The surgeon suggested that I leave it for a year and then decide about reconstruction. In his opinion is wasn't a good idea. Made an appointment with a plastic surgeon, and before the date arrived, my cancer recurred. Don't think the lumps would have been noticed had I had the reconstruction - who knows! Anyway, to cut a long story short, I opted against recon. Cancer localised again the following year. So for me, no boob is the best option.