Discomfort under implant after reconstruction

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I had a mastectomy in April, and an expander implant at the same time. Am currently having Rads, then at some point will have it removed and replaced with maybe a silicone one.

My question though is if anyone else gets nerve/ muscles aches under the implant? Most of the day it’s fine, but sometimes it feels like I’ve got a band underneath. Sort of like the feeling when you’ve worn a bra which is too tight. My Oncologist told me it’s quite common due to both tissue removal of mx and also the fact that an implant is a foreign body. I hadn’t heard of it before, so was wondering if anyone else has found it a problem.

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Hi, I had a mastectomy in February with an expander implant at the same time. Yes it does ache at times, as you said, a bit like having the bra too tight. I find it varies too depending on the type of bra I wear. I admit I still wear bras with underwires - so probably I’m not helping matters. It isn’t that bad though and comes and goes.
I have finished having the expansion and am just waiting for the surgeon to decide the next move. There is one odd thing that happens though and I don’t know if anyone else has had this - the boob seems to rise up sometimes. Especially noticeable if I’m wearing a low top it can sometimes (and for no apparent reason)swell up over the top. It can stay like that for a while - hours and then sinks back down again. A bit off putting when I work with Year 11 boys!! I keep meaning to mention it to the surgeon but keep forgetting. Has anyone else had this problem?
Val x

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Thanks Val - that sounds similar to me. Not too bad, just a nagging ache.

Mine sort of did what yours does, but in my case it’s because the implant flipped. They couldn’t inflate it at first as the port flipped too. They did flip the port back, but when inflated the implant moved as you describe, though with me it meant it moved so high up that it looked more like a growth than a breast. Honestly it was way beyond perky! In its deflated state it’s okay as it still gives me shape, so decided to stick with that until my skin’s recovered from the Rads. With yours could it be lymph fluid trying to drain and giving the breast less room? I had nodal clearance and sometimes still feel quite swollen and the Onc said that was the reason.

xwelcomex - sorry you’re feeling the same. When are you expecting to be given the implant then? My surgeon reckoned it might be a year before my skin was strong enough.

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Pm’d you Julie

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hi there

I had expander in feb followed by rads in june / july. I’m not getting on so well with the expander, I just don’t like the constriction and recently, pain. It feels hard and ungiving. Got so bad I have begun to think about opting for breast free life…Going to see surgeon next week to discuss this with him…

Green fingers

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Let us know what he says Green Fingers. Am thinking I might go the same way myself…

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Hi

I had a temporary implant (not an expander though)put in at the same time as my mastectomy two months ago. I really am not happy with it because every time I use my right hand or arm to do very ordinary tasks the muscle oontracts across the breast area making it sort of twitch which is a very unpleasant feeling and looks horrible. Also I am conscious of the implant all the time - like having an orange stuffed in my chest. It seems to be pointing more into my armpit than forwards so it looks like a flat pancake with creases in from the front i.e. pretty hideous.

I got so fed up last week I phoned the hospital with a view to asking to have it removed and just have an external prosthesis as you are suggesting. My breast care nurse got me an appointment with a different surgeon from the one who did my op (he’s on hols) and this lady surgeon spent ages telling me that there are much better reconstruction methods available and that I should be thinking about one of them. Being flat chested just wasn’t an option for her! She said that if you think of the tummy flap procedure as a Rolls Royce (the best), the back flap one as a Volvo (safe and reliable but not very exciting) then implants are like a rusty Ford Fiesta in comparison. That made me feel like the poor relation I must say.

Anyway I’ve been sent away to think it all through again and have been writing messages on various forums trying to see what advice others can give. Therefore vey interested to come across this thread and find that I’m not the only one who’s not enjoying their implant. I don’t have actual pain as such but by the end of the day it all aches from the muscle contractions that have been going on.

Were you warned about any of this discomfort before you had the implant put in because I wasn’t?

Janet

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Hi Janet - Nope, I wasn’t warned about it at all. To be honest though mine was always going to be temporary, and the surgeon said why not see how it feels/ have some shape after the op/ over the summer. I think for me she was right, as now I know exactly how an implant feels and psychologically it wasn’t such a shock after the mastectomy, as I still had a breast, even though it’s not mine! Also means I can now make a more informed decision when it comes to reconstruction.

I think what I don’t like is that it feels so hard and unnatural. There’s no movement in it whatsoever, so your description of having an orange stuffed in your chest really chimes. I’ve always thought because mine’s slipped that might be what the problem is, but from what you’re saying it’s normal. Interesting all this though - we should definitely pool information. If nothing else it might help others.

  • I love your surgeon’s car analogy. Very apt!
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Hi Julie

It’s so good to be able to share this sort of information with someone in the same boat rather than just reading the leaflets and descriptions of what happens in a perfect world!

I spent ages last night trawling the internet looking for personal accounts of LD flap reconstruction, which sounded to me to be a better option than having a permanent implant. Guess what, found several that were talking about the same sort of muscle contractions that we’ve been having - presumably from the transplanted muscle from their back. Am trying to assess what proportion of ladies who are happy with their recon would bother to come on to these forums to say so. I reckon it’s much more likely that those having problems or are unhappy with the outcome of their surgery will be posting. Therefore trying to stay positive about the idea of an LD op as being the best alternative. Cannot face the Rolls Royce tummy job -very long operation, microvascular surgery, long recovery time and possiblility of tissue failure if blood supply not good enough. However it’d be lovely to have a flat stomach again!

I’ve also looked for accounts of people who are happy with being totally flat chested and wearing an external prosthesis. There are some tis true, but have also found several who refer to feeling very lopsided and hating the “amputee look” of their body and the weight of the “thing” they drag around in their bra. So it seems there’s no easy answer to all this. What matters most of course is getting rid of the cancer. For me the next consideration is how I feel physically and emotionally and last comes the “how I look” bit.

Just been to the petrol station and realised that even pressing the pads to put my pin number into the pay machine sent my muscles into spasm and had my breast area twitching. Really fed up with it.

Will be interested to know what you decide to do. Do please keep in touch.

Janet

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Yes will keep in touch - let me know if you find out anything new.

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Hello to you all, sorry to hear about your problems. My experience asa fairly similar- I had a right mx in 2004 for invasive ductal ca, DCIS and Paget,s disease. I then had a prophylactic left mx in 2005, and had bilateral recon with expanders at the same time.

Unfortunately it didn’t work out well despite the assurances of my lovely PS. When I looked the following day, the expander inplant on the affected side was sitting to the side, almost under my armpit. I was assurred it would move back (it didn’t) and I developed a pulmonary embolism, despite being fit and active post surgery.

I also developed a reaction and infection around the implant, on and off, for the course of the 2 years they were in for.

The discomfort was unpleasant, never went and the expansion period was very uncomfortable, to say the least! This is largely due to the radiotherapy, I was since told.

My PS was keen to offer an exchange for “proper implants”, which “he thought” would be better, couldn’t guarantee it though, and some “work” would need to be done to fix that side to prevent further migration of the implant. I could, however, try an alternative method
of recon (lat flap or diep)
Anyway, 2 years came round and the implants were more and more uncomfortable, and the one on the affected side became harder and smaller - capsular contracture.

I took the decision to have them removed and done with once and for all - had the op in 2008, and feel much better for it. It was a decision that was right for me, so may not be for anyone else. I feel that I have adapted very well to life without breasts. I tell myself that I didn’t choose to be like this - breast cancer did that - but this is the best result for me. I am a young 46 year old, and can choose what size I want to be with my prostheses! No one can tell, I feel much better since they came out, and I don’t have to worry about anything else going wrong, or needing to have further corrective surgery.
Out of all the choices, I had chosen the least traumatic proceedure. However, I think that whatever procedure you opt for, it does not always appear to be as straight forward as the procedures are often made out to be and are seldom completed in one operation. In fact, it can take many procedures to complete with no guarantee of a good outcome, and I think that is something to be prepared for. At the end of the day, you need to do what is right for you.

Good luck with your decisions XXXXXXX

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Hi all

Very interested to read these further accounts. I met a young woman today who told me her PS said they expect about 30 - 40 per cent of temporary implants to be successful. That means your body rejecting it or encountering problems like infection etc. I think the reason they push ahead with it all is that at the time when you initially have to make this decision your choices are rather limited and it seems the view is ‘some reconstruction is better than none’
On the point about rolls royce / volvo etc this chimes exactly with the most awful pre op meeting I had with my PS and his registrar.
The registrar started out with a long description of why you wouldn’t want to have expander implants and how your own flesh from the back or abdomen was definitely the way to go. Next thing the surgeon pops in and feels my buttocks, tummy, bakc and boobs and proclaims that I am too thin for either of those options and the only available thing for my size / shape would be expander implant. At the time I was mid way through chemo and suffering terribly with side effects and not very capable of long term thoughts. So I went with what they offered me.
And, psychologically it probably was best to wake up with two bumps under the bed clothes, not one. But now, with the level of discomfort and ongoing awareness of what feels like a jelly mould under my skin - I do fantasise that not having a reconstruction would be easier.
I reckon you are right, Jaloco, there are problems with whatever route you take.
That said, I met someone with a recon from her back and she showed it me and even invited me to have a gentle squeeze. It felt incredibly soft, really like a breast and she was VERY happy indeed with it.
So there we are. Maybe the PS will feel I have put sufficient weight on to go with that??
It’s really helpful to hear other more about other people’s experiences as it helps me think of more questions for my appointment next week.
Thanks all

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Hi,
I thought i would add my experience because I had an LD flap and have been really happy with it. I had mx and ld flap with implant done in March unfortunately I got an infection and had to lose the implant in April. The ld flap on its own looked and felt like a breast but was about one size smaller than my other boob (Im an E cup). I originally had muscle contracture which was unpleasant but not painful and didnt last too long. I would say within 8 weeks i had no other side effects from my back muscle being on my front!! I had my implant put back in 3 weeks ago and apart from a little leakage from the scar im pleased with the outcome. It doesnt look identical to the other one but then it was never going to be that perfect, but ive now finally reached a point where im pleased with my cleavage, have no pain whatsoever and my confidence is starting to come back.
I wish you all luck in the decisions thats right for you.

Deed
xx

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Green Fingers, that’s awful - talk about foot in mouth. What a terrible consult! Here’s hoping your next one is better. Let us know how you get on.

Deed, thanks for posting. Glad you’re pleased with your new breasts then! Always good to hear a positive amidst some negatives.

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Hi

Following this discussion with interest - I am due for a double mastectomy 14 December and will be having further discussions next week to discuss best reconstruction options.

The options for discussion are expander implants or LD flap (with possible implants). Other flaps aren’t really an option as I am on the slim side and with not enough to build 2 breasts from my abdomen.

I’d really like to know if anyone has had implants and is happy, as that is the way I am planning on going! Am I right that if you really don’t get on with the implants you can have a flap at a later stage? Did you have the expanders that stay in or the ones that get changed for a permanent implant? What were your reasons for choosing one option over the other?

Would really like to know more.

thanks

Claire

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Hi Claire

I’m so sorry you’ve got an unfriendly surgeon, but it’s her skills in the operating theatre that matter the most I guess. Have you been allocated to a breast care nurse as I have found it useful ringing mine when I’ve had queries and she really hasn’t minded how often and how trivial the questions. In fact it was her that got me referred to a different surgeon so that’s how I found out there were other options to the implant route.

To answer some of your questions from my experience - I had a fixed volume temporary implant put in at same time as mastectomy (right side) about two months ago and have appointment to see plastic surgeon at end of January to discuss replacement with a permanent one. Now I have found out I’m eligible for one of the tissue transfer procedures I am finding out all I can about the pros and cons as I believe firmly that to be informed is to be empowered!

My experience of the temp implant has not been that good (see above posts) but today I have spent ages looking for some better bras than the cheap sports bras that I bought to wear immediately post-op while I waited for the swelling to go down. So my bank balance is a bit lighter now but I’m hoping that having some better fitting bras may just help relieve some of the discomfort I’ve been having. I’ve actually bought some post-surgery ones with a pocket for a prosthesis (which I obviously don’t need) but they fit nicely, are lightly padded and seem to give support in the areas that ache the most. They’re obviously not going to stop the muscle twitching but might make me less aware of heving the implant there, which would be a significant improvement.

I didn’t really make the decision to have an implant at all. My surgeon told me I needed a mastectomy following a biopsy and while I was adjusting to that news he started waffling on about reconstruction and I was so shell-shocked at the time that I just asked his advice and went with it. He told me it would keep my options open if I wanted a different procedure in the future. Am now quite keen on an LD flap but wonder what happens if that doesn’t work well. Can you go back to implants only I wonder? You can certainly do it the other way round ie implants then LD flap. And of course you can at any stage opt for no reconstruction at all which I am keeping in mind if I can’t get a comfortable resolution in the next 12 months.

For me, getting rid of the cancer was number 1 priority. Now I’m concerned with feeling the best I can physically. Last of all I’ll think about how I look, dressed and undressed.

Hope your discussion next week goes well and helps you to decide
what to go for.

Janet x

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Hi green fingers

You have my sympathies - these medics need to think before they open their mouths!

May I ask what you thought of the back-flap reconstructed breast that you were shown. I know you said the lady was very pleased with it herself, but did you think it actually looked like a proper breast? Do you know if she had an implant under it as well? I am concerned about getting some forward projection as my temporary implant is just like a flat pancake (mostly under my armpit!)and as it’s not an expander it’s not going to change until I either have the permanent implant put in or have a flap procedure.

Thanks in advance for any info

Janet x

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Hi Claire - Sorry you’ve got to have a double mx just before Christmas and that you’ve got a grumpy Surgeon!

I have an expander implant, but it’s flipped (see further up thread - apparently it’s very unusual though!). Still gives me some shape, which felt right psychologically for me. My surgeon said it was the only reconstruction she’d consider, as they weren’t sure if I’d need Rads. Rads can wreck your skin, so she said an LD reconstruction would have to wait. She also said there’s some advantage in having an implant pre-Rads as it stretches the skin. That was another factor which made me choose it.

Very hard decision to make really, but even though I’ve had problems with aches, I’d still on balance choose to have an implant. My logic hinged on the notion that I may as well try one as it was always a temporary fix. I always knew it would have to be exchanged, removed or that I could have reconstruction later, so it felt like a low risk choice to make.

Ask your Surgeon for pictures and statistics on each option maybe? That might help. Also, I second what Janet said about BC Nurse. Mine was brilliant at letting me talk it through - far better than the surgeon, who always seemed a bit rushed.

Ask more questions if you want to. Be happy to try and help.

Julie

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Hi there

Janet, the lady who invited to feel her breast (!) is incredibly happy with her reconstruction. She said it the flesh is soft and falls about the same amount as her other breast (though I would say she is not particularly large breasted)

Which raises another interesting questions - what impact does having the remaining breast minimised have? My surgeon has said, we’ll take that down by a size or two and lift it, well it’s amazing to have someone so interested in evening my breasts up, but I wonder what would that feel like? WIll I end up not being able to sleep on either side?
Sleep being my number one priority as it is disturbed by hot flushes / discomfort. And since my capacity to deal with life and the ongoing tiredness from treatment (which ended in July) is directly linked to how rested I feel, I don’t want to take any decisions which could interfere with my sleep.

In fact the opposite is true, my decisions will be based on comfort primarily, then looks. So, what a lot to consider…

Speaking of comfort, you are quite right, finding the best bras is important. One peculiar thing I find is that I need the strap at the side to be quite low as the new distance to my armpit on that side is small (following ALND). IF the band is wide it irritates the skin in my armpit so during the radiotherapy I bought maternity bras and I love the softness of them.

That’s a helpful point Julie, that by having the expander first it does leave options open. And I am incredibly grateful for that and, even though I am recording the difficult bits here, just to balance up the experience, I have broadly been happy with my new breast as it has made me feel more confident going back to work / the world etc. This is not to be overlooked as I did find my confidence after all the treatment was at an all time low as I didn’t trust my emotions / energy and felt strangely dislocated from the world. That has passed over time and I think the reconstructed breast has helped me in this. I add this for the benefit of other women thinking these things through.

Good luck CLaire with your operation. If you decide for implants you might ask if they can do a strattice? This is where they add a skin graft and i had it and it meant I could have the reconstruction immediately even though they knew I would also have radiotherapy. The rad nurses were amaxed at how well my skin help up during the rad and when I told them I had pig skin implants they were very interested as they hadn’t heard about it. I think it is still quite a new procedure but it’s worth asking. It protects the implant as well and improves the viability of recon before rads.

If you want to know more ask away. It’s so hard when you are in this decision stage so feel free and good luck with everything. :slight_smile:

I’ll let you all know how I get on with the surgeon on thursday and thanks for all the comments as it’s helping me think about the questions I need to ask.

All best Greenfingers