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All TopicsForum: Living Without Reconstruction After a Mastectomy → Topic: No reconstruction- Happy w/your decision?

Topic: No reconstruction- Happy w/your decision?

Forum: Living Without Reconstruction After a Mastectomy — Discuss prostheses, swimsuits, bras, and other options for women not having reconstruction or waiting for reconstruction.

Posted on: Apr 11, 2007 11:45AM

marlee1 wrote:

Hi, Everyone,

I've been reading all of your upbeat suggestions and positive outlooks, and they have been very encouraging. Now I need some specific adice.

After encountering chemo side effects and a post-lumpectomy hospital stay (which normally is not needed), I've decided to forego reconstruction after having my upcoming bilateral mastectomy (1 needed and 1 prophylactic). I just feel I want to get on with my life and eliminate as many new surgeries, worries, side effects, etc. as possible, and make as quick a recovery as I can. I was wondering how many of you have opted for no reconstruction, what your decision was based on, and whether or not you've been happy in your decision. As you all know, these are not easy decisions, but I'm hopeful and looking forward to my new life. Thanks for your help. Log in to post a reply

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Apr 11, 2007 12:03PM Lass wrote:

Hi Marlee,
I had a PM last Thursday and a LMM last May for the treatment of stage 3 ILC and I too decided not to have reconstruction for the same reasons you just stated. At this point I feel very comfortable with my decision as I can now get on with my life and not have to worry about other surgeries and possible complications from reconstruction. Having had one breast for a year and using a silicone prosthesis, I am happy to embrace the "flat look" as most of my clothes fit well and I feel comfortable with the way I look. As in all decisions pertaining to our treatments I think you have to do what you feel will work best for you. If you decide to go with reconstruction later on I think it's still possible but you would need to check that.
Hope this helps!
Lass
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Apr 11, 2007 12:10PM djd wrote:

I had a mastectomy last week after years (literally) of dealing with post-lumpectomy complications. I've had BC twice, and due to all the radiation, it is unlikely that I can heal from reconstruction. So, for the time being, I am happy with the flat half of my chest.

I wouldn't mind getting the "good" side reduced to a nice perky A or B cup, but I have a hard time imagining going through more surgery voluntarily.

My "bad" breast has undergone 7 surgeries in the last 3 years

Donna

Dx 12/13/2004, IDC, 1cm, Stage I, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Apr 11, 2007 12:11PM purplemb wrote:

Marlee..well right now I have one and don't have one...I did reconstruction once, nope twice then decided I would be happier with out and guess what I was right..for me..I either wear a proth or not..just depends on the day...I almost wish I had forgone the two years of reconstruction crap i went thru...BUT there are many who are very happy too..so good luck...

www.pinkstock.webuda.com A website to find help

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Apr 11, 2007 08:16PM cincinnati wrote:

I was only 25 when I was diagnosed in 2003, and pregnant. Reconstruction was skipped since it would have meant I had to wait longer to start chemo. I said Do what you gotta do, doc, we can wait. Sadly, we lost the baby, and I had a S4 recurrence in the spring of 2006, right about the time I was considering a tram-flap. Oh well.

You know, for the first time I felt grateful that I was an A Cup!!!! ha!

I wear a prosthesis to work (I hate it, its a big ol Mrs. Doubtfire bra and I dont find it that comfortable) and I wear just a sports bra to work out and play volleyball. I do get looks, but I consider it a badge of honor. My little chest cavity has become a part of me, and that scar represents more than a fake tit EVER COULD!

I just got a job coaching a hs volleyball team, and Im rehearsing my, "Nice to meet you, yes im missing a breast so stop staring you little punk!" speech. Wish me luck!! tee hee hee!~
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Apr 12, 2007 01:21PM ArmyNavyMom wrote:

Marlee1, I had bilat masts 9 months ago, and am completely comfortable with my decision for no recon. I bought expensive prostheses and wore them exactly twice (going to give them away - size 4's any takers?) because they weren't comfortable. I get called 'sir' once in a while (my hair is still very short) but I have been able to laugh that off. I've always been a tomboy and so the flat look suits me better than my former D cups in many ways.

I'm comfortable with the flat look and wouldn't change a thing!

Good luck!
Anne
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Apr 12, 2007 10:33PM sandy_simpson wrote:

HI!
I had a mastectomy and chose not to do reconstruction. No more surgery or risk of complications for me. It is so easy to pop a fake boob in a bra and not worry about it. I just bought a new one and it is so lightweight. The old one was like toting a brick! Really, my philosphy is life is more than hair, housework and boobs so why bother with surgery. Only God can make them match perfectly. I have heard of women having complications after reconstruction. I do not need any more hassle with this. My husband loves me for me, not for my body. He is cut up from his cancer surgery so we match! We praise the Lord and are glad to be alive and do not focus on the outside of the person but on the heart! That is where the beauty lies. Not in boobs. Happiness is being able to smile no matter what is going on because our heart is right before God. And knowing that nothing, not even cancer can separate us from His love! Sandy
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Apr 13, 2007 08:44AM marlee1 wrote:

Thanks for your support Lass . . . before this posting I had never considered the "Flat" look. I had thought only of prostheses. Something new to consider.

I wish you luck, health and happiness
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Apr 13, 2007 09:08AM marlee1 wrote:

Thanks so much for your encouragement, Sandy. While reading about all of the possible side effects of each type of reconstruction, my partner agreed with my decision and teased "only if I can come with you and choose the size of the prostheses!" I am truly blessed, because he, too, agrees with you and your husband's philosophy of life . . . that what counts are you, your heart and your soul, not your boobs! We just want to get on with enjoying life as quickly as possible, and put the chemo and surgeries behind us. What kind of lightweight prosthesis and bra do you use now?
Marlene :-)
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Apr 16, 2007 09:38AM freeariesonline wrote:

I can understand your decision totally. I was diagnosed and had surgery last year. I had an expander implant put in during the surgery but because I'm a heavy set person the plastic surgeon couldn't reach the port to fill it. After chemo I developed an infection and ended up having to remove the implant permanently. I don't think I can stand another surgery! On top of that I'm trying to loose weight and have aready lost 25lbs since the chemo last year. And as any of us know the first place you start to loose is in your chest area! Even if I did have the surgery I'd probably end up lopsided again.

Robin

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Apr 17, 2007 01:10PM marlee1 wrote:

Thanks for your honest response. I'm so sorry about the loss of your baby . . . I hope that things have improved since then. I've been reading about comfortable lightweight prosthetic solutions from some of the other respondees, and will look into those before undergoing my surgery. I wish you good luck in your teaching job and in your new cancer-free life.
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Apr 17, 2007 02:51PM Erica wrote:

Marlee,
Check out the Airway Tritex Triangle--it's silicone but with a soft microfiber back that you can wear right against your skin. No mastectomy bra needed (I use a little Playtex bralette), and no perspiring from silicone near your skin! My local fitter ordered a pair for me (I had bilaterals) so I could try them first. Here's a link so you can see what it looks like: http://www.mastectomy.com/cart.php?target=product&product_id=93&category_id=48

BreastFree.org (breastfree.org); BreastFree Blog (breastfree.blogspot.com); Twitter @BreastFree

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Apr 18, 2007 09:55AM purplemb wrote:

Anne, send me your #4's , maybe some one at Pinkstock can use them...

I have a knitted proth that I just love...its lite, and forms to each bra....no sweating, etc....I have others, a silicone, one and foam...but they too sit in a drawer...

good luck
Mb

www.pinkstock.webuda.com A website to find help

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Apr 18, 2007 07:53PM Alyson wrote:

I am really happy about no reconstruction. Had a modified radical mastectomy on Jan 19. Have a great prothesis and some really lovely bras. Here in NZ only about 20% of women have reconstructions, for me it was not recommended at the time but I really don't think I will change my mind in the future. DH is perfectly happy about things says I don't need it and I don't want any more surgery.
I think we have to go with what we feel comfortable and not be persuaded and pressured by others opinions.

Alyson

If you are sent down a stony path God will give you strong shoes

Dx 12/19/2006, IDC, 3cm, Stage IIIc, Grade 2, 23/24 nodes, ER+/PR+, HER2-Surgery 01/19/2007 Mastectomy (Left); Lymph Node Removal: Axillary Lymph Node Dissection (Left)Chemotherapy 02/23/2007 Cytoxan, Ellence, fluorouracil, TaxolRadiation Therapy 08/10/2007 ExternalHormonal Therapy 08/10/2007 Femara
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Apr 19, 2007 09:08PM Sandra56 wrote:

I am 57 and had a bilateral mast March 2006, so it's been over a year now. I was nervous about recurrence and didn't really want radiation. I'm not sure if I'll ever have reconstruction, I think about it, but decided to wait about 5 years after surgery before considering.

The only time I think about having no breasts is when taking a shower and changing bras. I have an excess amount of flesh under the arms that the Dr. left in case I decided later to have reconstruction. I don't like the skin, but if I wear a leisure bra to sleep (I always did anyway, before) and a bra during the day, it holds in the skin, so that I don't notice it much. I just wish the Dr. had told me there would be these "dog ears" because I might have said not to leave that skin. I have talked with her about trimming back some of that skin under one arm, because it's a little annoying.

I have numbness under one arm that has been very slowly getting better. Other than what I mentioned, I don't have a problem with no reconstruction.

Because I had the bilateral, I've found that I can wear the little TLC soft forms that open in the back to facilitate stuffing with fiberfill. I thought I would like my lightweight silicone forms better, and they do pass the "hug test", but those soft forms feel great even though a "D" size and cheap at $22 a pair.

Someone wrote on this site somewhere that most people get reconstruction, I'm just really surprised to hear this and wondering if it's true.

So, I can tell you that, for me, no reconstruction is really Ok! I would ask the Dr. beforehand what exactly you will look like afterwards, any extra skin etc. And you can always have reconstruction later if you desire.

It sounds as if you have thought out your path carefully and will do just fine with your decision.
Sandy
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Apr 20, 2007 08:46PM Brendatrue wrote:

I thought I read that most people don't get recon and that about 20% or so do, but I am too tired to research this. Anyway, I have one breast after having no recon following my mastectomy last year. I do not regret it at all. I do feel sad at times over losing my other breast, but I decided that I just did not want to go through more surgery and aggravation at a time when I wanted to focus on healing and health. Of course, we are all different, and the important thing is making the decision that is right for you. Actually I find myself wondering whether I would feel more comfortable with a bilateral mast....
Brenda

Brenda

Dx 1995, IDC, 1cm, Stage I, Grade 3, 0/16 nodes, ER+/PR+, HER2-Dx 2006, IDC, 1cm, Grade 3, ER+/PR+, HER2-Dx 2009, IDC, mets, ER+/PR+, HER2-
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Apr 22, 2007 08:39AM bookworm759 wrote:

I'm very happy with my decision for no recon. I wear a very good prosthesis which feels super comfortable to me - I forget I'm even wearing it - and looks completely natural. Probably too shy to ever go natural in public - also I'm pretty full-breasted to begin with.

And I know that they say recon does not impede their ability to detect recurrence in the breast area, but personally, I like the ability to keep an eye on the mastectomy side without imaging techniques.
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Apr 22, 2007 10:37AM Erica wrote:

bookworm,
I'm with you about recurrence. I too was told that detecting recurrence is not a problem with reconstruction, but, having had bc in both breasts and bilateral mastectomies, I just like to be able to see and feel my chest. I guess it's very individual. I would worry if my chest was covered by tissue or even if I had implants under the muscles.

BTW, what type of prosthesis do you wear? If you feel like sharing, I and others on the boards are always interested to hear what types women find most comfortable. Do you have bras you especially like?

BreastFree.org (breastfree.org); BreastFree Blog (breastfree.blogspot.com); Twitter @BreastFree

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Apr 23, 2007 12:24PM marlee1 wrote:

Thank you all, especially Erica, for your encouragement and suggestions for prostheses and bras. I've bookmarked for later use the site you sent me. I do appreciate any and all help. I think I'm going to head to another Discussion Board on Chemo. I need to make a suggestion to those receiving Taxotere. One of the side effects can be a red, burning discoloration along the vein above the site of the infusion. My chemo was/is 4 sessions. I had a 3 inch discoloration the first session. The 2nd infusion resulted in the toxic burn from my wrist to my elbow along several veins. When I saw the dermatologist, they had never seen anything like it and did a worldwide literature, which resulted in locating 2 articles. The one from Germany said that they found that irrigating the site of the infusion right after the infusion of the Taxotere, prevented the toxic burning from occurring. When I told the oncologist and the oncology nurses, who did the actual infusion, about the dermatologist findings, they replied that they see the discoloration all of the time!!! I can't understand why they did nothing about it, unless they didn't know about doing the extra irrigation. Therefore, my suggestion to all of you, who may be receiving Taxotere, please ask about the extra saline irrigation to prevent the possibility of discoloration. It is really ugly and I find I'm wearing long-sleeves to forego questions and surreptitious looks.

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Apr 23, 2007 12:47PM sahalie wrote:

Hi marlee,

I had a bilateral mastectomy one year ago this month.
I had BC in left breast only.
I did not have reconstruction as I was dealing with the loss of my husband and trying to absorb that I had been diagnosed with bc.
I know we have the option for quite some time to decide whether to go ahead and have reconstruction but I have decided not to.

Years ago my Mom had bc, also bilateral mastectomy and reconstruction. They were beautiful. They were perfect. But she had perfect breasts to begin with.

My reason for not having reconstruction is that I just don't want to go back into the hospital. I am very happy with my decision and actually feel extremely free.

I wear only soft cotton tees under blouses or a soft collared shirt or blouse that feels good to my chest. I don't wear any bra etc. It's a very freeing feeling.

I have never noticed anyone checking out my flat chest and even if I saw someone's eyes fixed on my flat chest it just wouldn't bother me.

I wish you the best of luck in your decision making and send you a giant hug.
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Apr 23, 2007 06:03PM bookworm759 wrote:

Hi Barbara,

Don't mind sharing info at all.

My prosthesis is amoena, Tria Light 458 - climate control (i.e., it has a removable pad on the inside that is supposed to be cooling). Don't know about that, but it does fit me very well, and it's nice to remove the padding and really sorub it once in a while.

As far as bras go, I try out different ones, and I have more misses than hits. The best, by far, for me is the amoena 2133. I also just bought today the 2146 - a new style that's supposed to be very popular. The biggest tip though is that the bra has to really really fit. No more getting away with old stretched bras, they don't just do the job for us. I replace mine every three or four months.

Hope this is helpful. I'd love to hear recommendations from others as well.
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May 5, 2007 05:07PM rumoret wrote:

"I just feel I want to get on with my life and eliminate as many new surgeries, worries, side effects, etc. as possible, and make as quick a recovery as I can. "

Exactly how I felt. I also thought about removing the right breast and just go on without bras.....:) I know of two people who had reconstruction.....one had a failed flap reconstruction and resorted to breast implants...the other is still trying to get the implant to work out for her.....she has constant infections...skin was to thin due to radiation. Some people need boobs and others can do just fine without. I guess it depends on which group you belong to.

Hugs to my Sisters,

Dx 4/13/2006, IDC, 2cm, Stage IIa, Grade 3, 0/15 nodes, ER+/PR+, HER2-
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May 7, 2007 03:43PM wedbizqueen wrote:

I love my prosthesis. From the start, I decided on a mastectomy (right breast) because I had so many friends who had more trouble from the reconstruction than the mastectomy itself. I too have a husband who does not dwell on my body but my heart. My bra and prosthesis look great, I wear sleeveless v-neck tops (Doc built a small v in the skin...looks like cleavage!) My cup size is a D and you would never know I had BC by looking at my shape. I have no worries about implants, soreness from taking tissue from another area of my body...just plain happy with my decision.
Hope this helps!
WedBizQueen
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May 10, 2007 09:25AM BeeMack wrote:

I am more and more thinking no recon is the way to go for me. I was "small" anyway and it really doesn't look that obvious under jackets. I have a form and will probably look at a prosthesis as soon as the drains come out, but even my family says its hardly noticable! I too have had friends with flap surgery horror stories and others tell about the pain of the implants and the stretching. I think ...nah no more knives thank you.

Beck
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May 12, 2007 05:45PM DianeMarieWA wrote:

I am new to this site and will be having a LB mastectomy in June. After having read on another breast cancer site about pain with expanders, weekly fills, etc, I had pretty much decided that reconstruction just wasn't for me. Right now I am feeling like I just want to get the LB mastectomy behind me, heal, and move on with my life. Before I saw my surgeon earlier this week, I had actually considered asking for a bilateral, however my husband and I felt like he kind of discouraged me from having a bilateral. I guess my main concern/question revolves around how difficult is it to deal with the lop-sided issue if you choose not to undergo reconstruction (prosthesis?). Is this a major hassle, or just something you learn to live with as time goes on. I really want to be as sure as possible that I will be reasonably happy with a unilateral and no reconstruction. Did anyone really, really wish they had gone ahead with a bilateral?

I'd like to hear from others who had a unilateral mastectomy with no reconstruction, and how they feel about their decision. Any regrets, comments, or whatever you feel might help me make my decision would be welcome. Thanks!

Diane
_______________________________________
Count Your Blessings, Not Your Worries! <!--color-->

Dx #1 Left DCIS 1996 - lumpectomy and radiation; Dx #2 March 2007, recurrence Left DCIS, lumpectomy with unclear margins, LBM 6/8/07. Mild left arm lymphedema.

Dx 2/5/2007, DCIS, 0/1 nodes, HER2-
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May 12, 2007 11:54PM caaclark wrote:

Hi Diane,

I had a unilateral mast. (right side) last July, so coming up on a year. I opted for no recon. for a variety of reasons. I did not want to go through more surgery after chemo and rads and I just do not feel like the recon. options are all that great for me. I am thin so really my only option is the lat dorci but I am also physically active and do not want to sacrifice shoulder strength. I have also known people who have had bad results with reconstruction and I just do not want to risk it.

Now, although I did not do reconstruction I do wear a prosthesis. For me it was a very easy transition. I am a 34B so the prosthesis is a size 2 and fairly small. I am completely comfortable both physically and emotionally. I actually forget that I only have one side except when I am putting on and taking off my bra. In fact, I adjusted so easily to it that it sort of surprised me. I questioned my doc about doing a bilateral but she (and a few other doctors) advised against it. I think you will find that whatever you end up deciding will be the right decision for you. I actually enjoy it when I realize someone is trying to figure out which side is real and which is the prosthetic. It is impossible for people to tell. I have even had my girlfriends feel the non-cancer side and the prosth. side and they cannot tell the difference!

As far as intimacy goes, my husband and I have not had trouble with the change in my appearance. I was a little self conscious in the very beginning when I would get undressed but now we don't really even think about it. We have always had a strong marriage so maybe that is why. Sometimes I leave a tank top on instead of undressing completely but I would do that before I was diagnosed too.

I hope my answers helped you. I am sure some others will chime in soon.

Carol Clark- Author of WHEN OUR MOM HAD CANCER Diag.1/06 at age 40, 1.6cm, 6+nodes, stage IIIa, er/pr+, her2-, chemo, mast. rads, no recon

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May 13, 2007 07:49AM marshakb wrote:

Diane,

I had a single mastectomy in Dec. I often think I should have had the bilat. For a number of reasons. The main one is my cancer was lobular which is hard to detect. The other reason is the lopsidedness. I absolutely hate it. I am a small person, 34B. I would love to throw on a tshirt and leave the house without having to "even myself up". My husband could care less about the boobs. This is just my opinion, but at my size, I would rather have symmetry, even if that is flatchested. To me, what is the point of that one boob? My docs acted like saving one was doing me a big favor. (????) Of course maybe they thought they were doing my DH a favor. LOL

I did like you and asked about the bilat, got the answer that is seemed "extreme" and was so anxious to get the bad boob off, just went with their opinions. Reasearch and think this through and do what is right for you. We are all different. Hugs, Marsha

I'm not dead yet!

Dx ILC, Stage IV, 1/13 nodes, ER+/PR+, HER2-
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May 13, 2007 09:32AM OLBinNJ wrote:

I had single mast in "96 with immediate recon becuase I thought I neded it "for my head" at the time. I had almost constant pain with every expansion, the boob felt hard, didn't match the other one, and @ a year later I had so much scar tissue around the implant that the healed incision actually tore open. Had the implant removed and have used a prosthesis since then. There are issues with finding the right prosth and bras as well as swim suits, but I just feel better without the implant. Implants and recon work for a lot of people, but it didn't work for me.

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May 13, 2007 09:39AM wallycat wrote:

This is such a great thread!
My doctor (breast surgeon) too is trying to steer me from bilateral proph. mastectomy. He says it is drastic. I had ILC and worry constantly about the "sneaky" aspect of this so am HUGELY leaning towards removal.
I'm terrified of everything it seems...
that the cancer will come back, that the expanders will hurt, or if I go natural, that mentally, I will freak out looking at myself.
I appreciate you ladies so much for sharing your stories!!
Until this thread, I wasn't sure I could ever even consider no reconstruction but now am wondering if that is the best...to be able to have my "worry breasts" removed and still not face a more painful rconstruction.

THANK YOU all for sharing so much!!!!
(and for asking the questions!)

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012

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May 13, 2007 02:14PM Erica wrote:

wallycat,

I'm glad to read your post. When I was facing a single mastectomy (and deciding to go with bilaterals), there was so much information about reconstruction and almost nothing about deciding not to reconstruct. Even my mother-in-law, who has lived for almost fifty years without breasts (and without reconstruction), assumed I would have reconstruction. Only on these boards did I find the support I needed to refuse recon yet not feel isolated.

I had my surgery seven months ago and am feeling, if anything, more happy than ever with my choice not to pursue reconstruction. I decided on the bilats because I'd already been diagnosed twice with bc. Although my other breast had been treated with lumpectomy and radiation, I wanted to minimize my risk of a third occurence as much as possible. I haven't regretted my decision. But as you can see, many women are comfortable mentally and physically with a single mastectomy.

BreastFree.org (breastfree.org); BreastFree Blog (breastfree.blogspot.com); Twitter @BreastFree

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May 13, 2007 02:42PM wallycat wrote:

Erica,
was it difficult to see the actual mastectomies on your own person?? I think that is what scares me the most...the scars and seeing myself flat after decades of being a 34D.
I think if I knew I could live in my own head, I would be OK facing the world flat chested. Maybe have nipple reconstruction for cosmetic reasons and be done with this.
...and WOW, 50 year survivor with your MIL...EXCELLENT!!!

Thank you again for your thoughts.

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012

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