anyone abandoned their implants and gone breast free?

Had my mastectomy in november, am bigish breasted 34F/FF fitted with Anita posthesis in Jan, am wearing a Panache bra(no pockets just straight) got fitted at Bravissimo. I am delighted that top on and off, can’t tell I’ve had breast surgery.
I must say that I have had to rethink some of my clothes as cleavage is no longer an option, and some necklines show the hickman insertion site, I am really pleased to look myself when dressed,it feels like I’ve lost less somehow.
I can’t see me wanting reconstruction, surgery fills me with fears for problems, would avoid unless life compromised severely by the problem that surgery would fix. As said on another thread we each make up our own mind if psychological issues are with the risks.
Pat

Hi greenfingers

This is such a difficult one, and I guess that everybody has to go with what feels best for them.

I just wanted to add a thought. Having gone this far through the reconstruction process, why not give the silicone implant a go? I know that sounds simpler than it is, but I wonder whether - having got this far - you might in the future regret at least giving it a go. After all, you will still have to have an operation to remove the expander implant.

I had my reconstruction 3 weeks ago, and I have got an expander implant in at the moment. Mine isn’t too bad at the moment, but I have only had 2 inflations so far. I understand your discomfort though, no immitation is ever going to feel like the real thing. But all the posts that I have read on this forum say that the silicone implants are so much more comfortable.

Maybe you could talk to your consultant about bringing forward your surgery?

Good luck with whatever you decide to do.

Dennise x

Hi all,
Yes, I abandoned my implants and went breast -free!
Had mx 2004 (aged 39),didn’t want recon and managed very well with prosthesis. In 2005/6 had prophylactic mx but was “advised” to have bilateral recon at the same time,in hindsight against my better judgement!
So, I had bilateral implants (expanders) , and never felt well since they were done. It was very painful, tight, and to top it all, I had a pulmonary embolism 10 days post surgery. I had gone into hospital really fit and well, and came out a wreck, basically.
I was also quite shocked at the number of women in there who were on their 4th/5th op to “correct” or “repair” their recon- something i hadn’t really considered, having supposedly taken the “easiest” option of expanders.
I spent the next 3 months undergoing expansion - this left me tight, uncomfortable and what resembled very firm rock-like mounds stuck on my chest. This was then followed by one of the implants migrating under my armpit,shrunk, followed by capsular contracture.
I made the decision to have them removed in 2008, despite the PS saying he would replace them with silicone implants.This would have involved further surgery to "fix2 the pocket where the migrating implant was, so it would hopefully not do it again. also ,there was no gaurantee that i wouldn’t develop contracture again, which would then enevitably lead to more surgery.
Although it was daunting going breast free, it was distressing at the time initially post op because it was like having a bilateral mx, all over again. But, for me, it was absolutely the right decision and I don’t regret it at all. The worry of having to have more surgery has gone, no more visits,complications, ops, dressings etc.
Since then, i got fitted up with my prostheses, which look great under clothing - no one would ever know! I even have 2 sizes(a slightly bigger evening pair! The bras from Amoena are great- really comfy (couldn’t wear a bra with the recon-only crop tops).
I can only say that I would NEVER consider recon again and am more than happy the way I am. Of course, I wouldn’t have chosen to have both breasts removed- I had to so that i could save my life! But I’m Ok without them.
Good luck with whatever you decide.There is no right or wrong answer!
XX

Hello again

I have now made an appointment to see my BCN to discuss having my implant out and she has promised to show me some prostheses so I can see how heavy they are etc.

A new worry is whether I will be left with baggy skin after the implant is removed. I had a skin-sparing mastectomy so have most of my skin but no nipple. Also will the muscle that has had the implant stuffed under it go back flat again? If I go ahead with this operation it will be done by the same surgeon who did the mastectomy and put the implant in (he’s a general surgeon) rather than a plastic surgeon, but I guess I can ask him to leave me as “tidy” as possible.

Any advice welcome.

Janet

Hi Janet

The whole point is that you want your reconstruction to be as good as it can possibly be, not to be as “tidy” as possible. It sounds like you need to have a heart-to-heart with your surgeon, and he should understand your anxiety.

Maybe your general surgeon has had lots of experience in this area? Have you asked if the are any photographs of previous reconstructions he has done?

If you are not happy with his answers, then definately push to have a plastic surgeon for your operation. You have been through a lot already, and you deserve the best result possible.

It is natural to feel anxious, I am part-way through the reconstruction process and empathsize completely with you. I have found that getting answers to my questions from the specialists really helps.

Good luck.

Dennise xx

Hi Janet,

I absolutely understand your concerns about what things will look like if you decide to have the implant removed - I was exactly the same. I had a plastic surgeon who did mine - you may want to get a second opinion from one to see what they say- I think a good, tidy appearance postop can help you deal with the process. I certainly noticed the difference- a general surgeon did my 1st mx and the scar was fine and ok, but it wasn’t until the PS did the bilateral recon, so redid my recon scar, that I noticed the difference. The scar was really neat.
When I had made the decision to have the implants removed I voiced my concerns as to what the finish would be and like you, I was concerned with having “baggy” bits left. I had one side where the mx was done for ca(thus removing as much skin as poss), and one side (prophylactic) which was skin sparing. The PS promised me he would give me the best result he could, and he certainly did. I have 2 very neat,fine symetrical scars with no bagginess at all, despite having had the expanders in for over 2 years. The muscle underneath seems ok, but the tone is not as it was before. The appearance is absolutely flat and neat, so I have been very lucky and had a great PS.
This is a big decision- don’t be rushed into anything. Seeing the BCN is an excellent idea, and by seeing prostheses before will help.
Maybe something I could advise you with - I believe alot of centres (plastic surgery) now offer women due to undergo “deconstruction” (and before recon) an appt with a psychologist, to help you explore what option is best for you and provide any psychological support you may need to support you in the decision making process.
This was offered to me only on the evening of the surgery(a bit late, and had I known about it before I think that I would have made use of it for alonger period before!). I found it very useful, and because the contact had been made, I knew that the proper support was in place for me afterwards should i have needed it (I didn’t).

Good luck and if you want to PM me , please do.
XXX

Thanks happyshopper for all your advice. I’ve sent you a long PM - first time I’ve done this so just hoping it’ll arrive ok. Really helpful to be in touch with someone who has already had implants removed and is satisfied with result. Janet x

I know that I am entering this conversation late, but I have a lot of experience with this issue. I had 13 reconstructions – none of which – worked! So, I tried many prosthetics, including the stick to your chest type. There were not many options in 1987, when I had stage 4 ductal invasive BC Left B. And after 10 years of pain and 13 surgeries, I decided to finally get them out! Took a while to get anyone to remove them! But then I tried Amoena trias, but eventually just began to go boobless! For years and years – I felt funny sometime and a little jealous, but I used camis and shirts with pockets and other forms of concealing or at least minimizing the look. And I was even married in a backless gown with only one boob! So, yes I have tried it. Now, however, I have been advised that I need the balance of a prosthetic. Here where I live, there are so many options to choose from. I have a very nice silicone gel [my best], an Amoena Swimform triangle [multi use!] and a Calypso Swim form in heart shape [a sample and I have found that these swim forms, though hollow, can be worn everywhere usually – a soft piece of cotton keeps the sweating down – and a wonderful new type which is just a tiny soft bag of microbeads. I have found several companies – Silique, TLC Microbead Breast Forms, Bosum Buddy Forms, Jillianna Breast forms. There is a blog called breastfree.com which even shows how to make one. The same site has a pattern for a KNITTED TITTY! or you can find it at Knit Tit. I just wanted you to know that there are optons for filling out that are many and varied. I am kind of a bully and I did bully one manufacturer into sending me one to try. I did not like it because it did not meet my expectations. But if you people over the pond can google “microbead breast forms” you will find them. The same for knitted breast forms or for OF ALL THINGS! breast forms made of Memory Foam [yes! as in BEDS]. So go for broke and be comfy and maybe show someone else that they will survive too because you will be noticed. That is okay! Really. But if you want to try something soft and simple and can be used for swimming too, try the bean bag ones. I do like the new pretty nightgowns and such, but really would not use them. I just like pretty things and don’t think that it would be necessary, right? I mean, if you are wearing pretties, for your guy pretties, then he knows anyway! lol. JUST REMEMBER, WE ARE LUCKY AND WE HAVE TO KEEP EVERYBODY GOING AND EVERYTHING WE SAY CAN HELP. SO ANY IDEAS CAN BE THROWN AROUND! I have a friend in the UK who only uses USA products because she says that you are limited. I would not know, but she does purchase our LAND’S END line of swim suits by catalog and online which come in regular and pocketed types. And they are very reasonable and often on sale. So, bye for now – just be you! You are fine!

Thank you Linn, I’m just home after seeing my surgeon who has agreed to do bilateral mx for me (one will be prophylactic as I have some risk factors for recurrence). I’m now having my final think before deciding what to do and your post really helped. I’m intending to go ‘breast-free’ some of the time at least, but I’m afraid about how I’ll feel once the surgery’s done. Anyway you’ve made me feel good and made me laugh - I’m definitely going to knit a titty! x

Hi ladies

Although I didn’t have recon after a bilateral mx I largely go breast free and love the freedom of it.

As a pear shape with narrow shoulders this does mean that I am not in proportion but hey, i’m alive.

The decision you make is a very personal one and you have to follow your instinct.

Dawn flower

Thanks Dawnflower xx

Hi all

I have seen my BCN to discuss having my implant removed as it’s so uncomfortable. Now have appointment with surgeon in 10 days time. BCN said she was sure he wouldn’t mind the removal of the implant but would need a lot of persuading to remove the skin too and leave me flat (my wish)in case I change my mind later and want a different kind of operation. Apparently a lot of ladies are so shocked by what they look like flat that they ask for recon as a result. I can’t imagine that I ever will having rejecting the alternatives on offer after careful consideration and hating the implant feeling.

However, I had a skin-sparing mastectomy and don’t fancy having a lot of loose skin “hanging around” after the implant has been removed.

Has anyone else had a similar experience, either with the implant removal or the skin issue?

I’m so pleased to read that so many of you are comfortable with going breast-free. It seems to me the most honest and simple of all the alternatives. If I can’t have my real breast back (which I obviously can’t) then I don’t want a pretend one - well not inside, anyway!

Janet x

Hi Janet,
well done for making a difficult decision. I’m in on tues for my bilateral mx. I can’t comment directly, but I spoke to my surgeon about the skin-sparing mx as I’m 99.9% I won’t want recon at all. He agreed that he would not leave me any ‘flappy bits’ but would leave some give in the skin. He says this way it will be neat but leaves room for an implant if I change my mind. I’m going to remind him to leave it all as flat as poss when I see him before the op, because I think I’m going for an exciting tattoo over the scar once it’s all healed!
When you see the surgeon he might well agree to do as you ask provided he’s aware that you’ve thought carefully and aren’t in a state of emotional upset, you sound very level-headed to me. You’ve tried the recon and decided not to continue based on careful thought and research. It’s your body, and it’s your decision as to how you want it to look in these circumstances. My surgeon has a reputation for not doing prophylactic mx, but he agreed to do the bilateral because I’d thought about it and researched it (much to the surprise of my bcn!)
I hope yours is receptive, lots of luck with it - by the way I was advised to write down my reasoning and Qs which was very good advice - easy to forget what you were going to say…
best wishes, Lynne x

One thing I forgot Janet, my bcn was really against me having an immediate recon which was my initial instant reaction to being told I needed a mx, and told me that many women who do it regret it. She says that many of her women who think they’ll have a later recon change their minds and are fine with the flat chest. She also said later that if you decide to have a recon you need to be ‘committed’ and to be prepared for it to go wrong - when it is often even more difficult to deal with than the mx itself. She’s very sensible, very experienced and very lovely, and it’s interesting that she’s got a completely different take on this than yours! x

Hi Lynne

Many thanks for your reply and my very best wishes for your operation next week. It sounds as though you have a good medical team and, like me, you’ve done your research very carefully.

I am encouraged by the comments of your BCN which I can add to several stories of reconstructions going awry either told to me or read on here. I also found a site called “The Scar Project” which is highlighting the prevalence of breast cancer in younger women in the US by a series of artistic photographs post-mastectomy. While there are some acceptable recons, there are other awful ones and, to me, they all look so fake. I think the most beautiful ones are the flat ones (with the exception of one with wrinkly skin!). i like the sound of your tattoo.

I’ll be looking out for news of how you are and will be thinking of you next week.

Janet x

Thank you Janet, I’ll be thinking of you too and waiting to hear how you get on.
I’ve seen the Scar project photos, and agree that they make some interesting points. I thought of the tattoo initially when reading up on recon and medical tattoos for nipples - I thought I’d have a flower or a dragon or something instead. I then decided against the recon and researched the tattoos more - I’ve attached a couple of sites which have lovely stories and pics on them just for interest.

needlesandsins.com/2010/10/mastectomy-scar-tattoo.html

triangletattoo.com/women.htm

That’s for the future anyway, it makes me feel better to look ahead a bit.
Wishing you luck with the surgeon
Lynne x

hi Janet,

I have Pm’d you with a reply to your pm but being the techo wizard that I am (not!) I am not sure if you received it - apologies if you haven’t.
Looking back at when I had my deconstruction surgery - my surgeon (plastic surgeon) also said he wouldn’t remove surplus skin for the same reason- if I decieded to pursue further recon later, it would make things very difficult if all the excess skin was removed.As your BCN has said, it is an important thing to consider. I saw the PS for about a year (prob about 4- 5 times) before my surgery, during which time he discussed replacing the implants. I certainly listened to all that he had to say, and because we had built up a good rapport during that time he knew I was certain when I said that I wanted the implants removed and not replaced. I explained to him that i didn’t want to be left with saggy, excess areas and he reluctantly agreed to give me a flat appearance by taking as much as he felt was OK to do so.
I have been very pleased with the results following the op and he has given me 2 neat, fine scars which are symetrical - a PS has that extra attention to detail I believe!
I bought some Bio oil for after the surgery and about 4 weeks post op I started massaging this across the whole area and scar lines - not sure if this helped but I’d like to think so!
The decon op was a walk in the park compared with the original recon surgery and my recovery was much quicker. i think I was driving within 2 weeks and I took about 4 weeks off work. Do remeber though that I had both sides done and my scar was one huge line from side to side, with only about 1 inch of whole, uncut skin in the middle
of my chest! i’m sure with one side being done, the recovery time may be quicker?
Again, my advice is to take your time and find a surgeon you feel really comfortable with who listens to what you want - it’s your body!
I hope this helps- please let me know how you get on or have any more questions
Take care, XXXX

Hello again HS

Have only just found your pm - many thanks. I don’t think the system sent me an alert that it was there this time.

Thanks for all your details - it’s so helpful to be prepared for any counter-suggestions the medical team may come up with. I am very sure I won’t ever want a reconstruction done in the future, even if I end up having another mastectomy, so am hoping I won’t have to fight too hard to get a tidy result. I am also hopeful that a plastic surgeon will do the reconstruction as “my surgeon” doesn’t operate in the day surgery theatre apparently.

One of my daughters is going to come with me to back me up if necessary. She’s a very assertive young lady so will be excellent support.

I’ll let you know how I get on at the appt on 16th. Thanks again.

Janet x

Dear Janet,
When I read your post you sound very much the way I felt (and still do) about your decision. I have absolutely no regrets about having no more recon and am now just able to get on with my life without the cloud of having to have more recon surgery following me around.
That is the issue with recon - it is very rarely the one-stop op and often continues with further and further surgery to get a result which is acceptable for the patient(and surgeon). There are often long waiting times between surgeries, meaning it is often difficult to get on with your life. And sadly, when recon goes wrong the psychological trauma it can cause is dreadful.
Of course, there are good stories too and the alternative of being breast free is often too much for some to even consider.
I strongly feel that there should be more done to help women come to terms with and accept their new body shape rather than recon as being the only answer.Again, it’s a really individual decision. None of us had our breast(s) removed without good reason - it was done to save our lives and/or increase our chances of survival. There is no right or wrong answer regarding what happens afterwards (ie recon or no recon)and only you can make that decision.
From my own perspective, coming off the “recon rollercoaster” was the best thing I did.
I wish you (and all the other ladies here) the very best of luck with your choices. Take care one and all, XXXXX

Hi all

I haven’t posted on this thread before but I thought you might be interested in my story. I had a mastectomy in September 2007 following adjuvent chemotherapy but developed such awful back shoulder and neck pain from the imbalance of my body that I opted for a further mastectomy operation in Ocrtober 2008. The pain disappeared and I felt so much better. I didn’t want reconstruction surgery as I was concerned about the possibility of recurrence that could not be detected until too late.

I quite often don’t bother wearing my prosthesis, it all depends on which clothes I am wearing and on the activity. I don’t care what anyone else thinks I am at that stage in my life and I now have secondaries that I just want to be comfortable. There are a lot of women with very small breasts so I try and choose clothes that don’t require boobs to make them look good.

As many of you have said it is very personal but I am happy with my choice. I would have loved to keep my boobs but it wasn’t to be.

Sue x