Hi Ladies,
Not been on for a while as been taking a much needed holiday in the Sun.
I am hoping someone else can help me with a question. I went for an ultrasound on my LD recon breast on Monday as I have noticed a lighter area of skin appear (as it did above my tumour) and have had pain along the top edge of my breast. The sonographer couldn’t see any reason for the skin change or pain but took pictures of what she called “cystic changes near the chest wall” which she said are probably left from the surgery. She said she didn’t think it was anything to worry about but just to keep an eye on my breast.
I am due to phone the Onc on Monday for the official results however just wondered if anyone else had heard of this following surgery?
Thanks, O, x
Hi Ostrich
I have the same thing, 2 patches about the size of a 5p piece on my sqarish recon. I showed it to the GP (BCN is elusive) who reckons it may be due to cysts atop capsule around implant and said he had seen similar in women who had boob jobs. Did not think it warranted ultasound before next scheduled visit at clinic.
Good luck for Monday and keep us posted.
Jane x
Hi
I struggle with this. There are no protocols for sscreening so-called reconstructed breasts, indeed, it is known by my oncologist that the Chirf Radiologist locally won’t do a scan if the results will be difficult to interpret!!! This would be the case with an LD flop where tissue and skin have been moved and I daresay it is the case for TRAM flaps, DIEP flaps etc.
As a person who has a high risk of recurrence at the chest wall I am told repeatedly that a recurrence would manifest itself on the skin but in the same sentence am told that it is not rare for a recurrence on the chest wall itself!!! So without scans then how are they gonna find it???
In your shoes I’d press for a scan and not be fobbed off. I was fobbed off and it cost me my flesh - they will not do it again with my knowledge.
Get peace of mind, whatever it takes.
Good luck and report back.
Thanks for your thoughts Ladies,
I agree that its troubling that they don’t routinely scan reconstructed breasts for further issues (I was initially told by my Onc that they wouldn’t do any checks on recon other than a quick feel at check ups and that they don’t routinely scan). I know there is a risk of BC in the “healthy” breast but I am more paranoid about the BC breast because thats where the cancer was and as you say Dahlia - if they don’t scan how are they going to know? They can’t assume that every recurrance will be in the skin as they don’t presume to take every last bit of breast tissue (and thereby the risk of it spreading to the chest wall) otherwise there could be no risk of recurrance in the skin let alone the fact that they don’t examine every lymph node connected to the breast (ie the ones in the sternum etc).
Due to this lack of regular scans I obviously jumped at the chance to have a scan of my recon following my concerns over the skin changes and it was through this that the “cystic changes” were noticed.
Will be interested to see what the Onc says tomorrow ie whether they are certain thats what they are, whether they will do any further testsing to see/confirm and/or what (if any) monitoring they will do of them.
One of my concerns is that they will just “leave it and see” under the banner that they are sure they are cysts and cysts are always benign and don’t become malignant.
Its so hard to trust your body after BC and to trust the so called experts with your body.
Will let you know how I get on and best of luck to you two, xxx
Dahlia - i like the “LD flop”. Yes, that would describe mine quite well. The “quick feel” does nothing to reassure, does it? Mind you I am past caring and decided not to go for a “How are you” chat(ithe correct answer being fantastic and anything else dismissed as “you ladies fuss” ) and quick feel. Not worth my time.
Good luck Ostrich and fingers crossed.
Best
Jane x
I know what you mean Jane re the expected answer and anything else you almost expect the eyes to roll! For the level of examination they give anything out of the ordinary would have to be the size of a grapefruit for them to notice and chances are I would have noticed it by then!!
Ultra sound results ok, see Onc again in August. Its funny isn’t it that you find out more from the sonographer than the doctor reviewing it? The sonographer told me there were cystic changes by the chest wall but that she believed they were fluid left from the surgery whereas all I was told by the Onc’s secretary was that everthing was ok. Don’t know which is best as I now find myself wondering if cystic changes could be anything else! *sigh*
You must be so relieved.I am reliev3ed for you! Actually you are right about the sonographers, if they are allowed to tell you, at my hospital they aren’t but you can sometimes press a few of them who must realise that it is agony to wait for weeks for the Doc to pronounce “you’re okay”. I hate the way the Consultants and Docs drip feed you stuff.
surgery theory fits with my GP’s take on it so hopefully more than one opinion - albeit we don’t know if our patches are similar.
Also, do you mind me asking - have you got your LD flap “finished” yet? I think I am a couple of months ahead og you and there has been nothing said - should have settled as much as it ever will by now and wonder if I will have to live with a patchwork lump for much longer. Also, was anyone satifised with a recon nipple - wondering if it would help me feel finished and maybe happier??
Thanks
Jane
Love to all
Jane x
Hi Jane,
my recon isn’t finished yet. Surgeon doesn’t want to do anything more until the end of this year and then will be replacing the implant with a slightly bigger one (as its shrunk a bit and is a bit saggy at the bottom towards my armpit) and tatooing the nipple. He will also be putting an implant in the other one and reducing it slightly. He is also going to do some revision work on my back scar if I want it (am undecided on that one).
I am much happier with it than I was and do look forward to being “finished”. Mainly to have two self supporting boobs and looking forward to wearing tops without bras. At the moment I have one self supporting and one in need of help bra. I’ve never been able to go bra-less as they were too droopy before but like the “enhancement” of the LD recon and the idea of having “good” boobs as a consequence of all this treatment.
Hopefully someone “finished” will be able to let us know whether they are happy with the end result.
Hi Ostrich
So glad you are feeling better about it. do you mind my asking, can you let OH see it or do you hide it? sorry if this is a bit personal but it is the acid test for me.
Surgeon sounds promising!Are you getting a false nipple and tatoo or just a tatoo?. I can not figure out whether the nipple is automatic or do they just mean a tatoo. My whole thing is like an elephant around the underarm buut there is no "fold " under the recon as it appears to have slipped.
My real boob has gone south so it now looks equal to the much lower - but square - implant. I would love to be finished but no-one has mentioned it and my relationship with the BCN is so tense I won’t call her. Last time I did she said “I have sick people to deal with, you are cured so get on with your life”. Sort of makes it feel like she considers it job done.
I wonder if it is expensive to get revisions privately? It might be wotrth it if it make me feel human.
Take Care
Jane x
Hi Jane,
I do let my hubby see it, I sleep in just pants so its on view however if we are being intimate I have to wear a bra. I can’t lie there and feel sexy with it mainly due to the lack of nipple and the fact that whilst it might look like a firm boob I couldn’t bear him touching it and think it will always be a case of look but don’t touch even when its “finished”. Can’t explain why though.
I think the nipple thing is a false nipple made from the skin and then tattooed to match re colour.
How often are you seeing your surgeon? I still see mine every 3 months. I have to say that it was down to me pushing that I wasn’t happy with it that he said what he was prepared to do. I think in his mind it was a good job whereas in my mind it wasn’t a good looking job. I told him that had I planned a boob job and it had turned out as it is then I wouldn’t be happy and since it will never now be a sexual object for me then I certainly expect a better cosmetic result. Since then he has taken time to explain to me what he sees for me as an “end” result and made suggestions that I am happy with.
There is certainly that “let it settle” attitude and whilst that initially frustrated me now I am happy to wait. My back wound opened up 3 weeks after surgey and then took 6 months to heal (finally finishing in March) so the thought of more surgery now makes me cringe because I couldn’t bear any more complications. I am back to full time work now and want to have a bit of my pre BC “normal” life for a while before I get it finished probably early next year.
I don’t speak to my BCN. Found her a complete waste of time with the “thats why we call you patients, boom boom” attitude!
Hi Ostrich
Thanks for that - know what you mean about the look but don’t touch - I have not been intimate since the op but know that if I was I would not want it (or even the real one) touched now. Don’t know why but the idea is quite upsetting. Still can not imagine letting a partner see it though and if I can not be uninhibited that I can’t do sex.
Wonder if fake nipples actually resemble real ones - it is impossible to tell from photos how real they are, or whether they project as much as a real one. The BCC leaflet is not very explicit and I can not find any accurate info, never seen one either. Turns out my hospital do not offer it and it is not mentioned at all.
Like you I protested that my recon looked poor but was told that I was very lucky. Think the surgeon just is not that good at it and defensive.
Thanks again
Jane
BCN sounds like a real comedian!
Re the surgeon, I saw him whilst weekly for three months when I had healing problems but was discharged when it finally stopped bleeding. I will see him at the one year check.
I had not thought of the possibility of more complications but that is a good point. Wondered about your change of implant - do they do it through the front scar?
Maybe you are happy to wait because you trust it will happen?
Well done for making sure you get what you want.
Jx
Jane from what I understand the nipples look pretty good and are even a bit 3D in that they have a sticky out bit in the middle of the fake aereola (sp?). One of my cyber friends has just had one so I’m going to ask her how it is now that it has settled.
You can get stick on ones but I’ve never been offered one and don’t want one either (afraid it might go astray!).
Surely if your hospital don’t do them then they should send you somewhere where they do? Also if your surgeon thinks things are okay and you don’t couldn’t you get referred to another PS (one that does nipples too) and see if he is more willing to do cosmetic work until you are happy?
I am not sure where they will go in for replacing the implant. I only have the scar on the back and the one around the “nipple blank” as it was a skin sparing mx. Good question though. Don’t think they will go in through the “nipple blank” cos that skin has only got used to being on the front and wouldn’t there be more worries about it dying if it got messed around again? Hmm, will ask my surgeon when I next see him in August. Also going to ask about scaring on “good” boob as don’t want to end up with loads of scars however as, like you, they’re not likely to be sexual things I want to show off again I may well be happy with a couple more scars so that I can wear nice sexy tops without a bra (I’ll just have to dash to the bathroom and slip a bra on if I am planning to slip out of the sexy top if you get what I mean!)
xxx
Hi Ostrich
Thanks for being so frank - i read an article on the web where some woman said that getting the nipple done made her free like she was a more feminine sexual person again and was surprised by how she felt as she had thought it was not that important to her. She says she is content to be “viewed” now. Mmmm.
I hate the one nipple thing - everyone knows which is the m-op side and I hate it but I wonder if the “new nipples” project as much as a normal one.
Think I will have to save up or take a loan and go private asI have been told that there simply are not the surgeons availble for cosmetic work and that, obviously the surgeons have more important work to do. I did not have a ps - i had the oncology surgeon who is dedicated but does make one feel “fussy”.
I really wonder about the implants access route. I would like this one out but I don’t want that scar opened again, it looks horrible as it is.
Would be interested in your pal’s experience!
Take care
Jane x
Hi Jane,
Will try to remember to ask my pal - back to full shifts at work this week and am pooped (56 hours on to include earlys, lates and nights) so if I forget then just kick me.
I know what you mean re mx nipple and non - how do you explain it to those NOT in the know when you have only one “reactive nipple”?
I also have a pretty big areola and quite projecting nipple and having thought about it will ask my PS whether he can actually match the ‘reaction’ of my “old” boob. Its a toughie cos there are presumably always gonna be times when one side is “excited” when the other one doesn’t know what all the fuss is about or times when one side is chilled out wondering why the other side is all het up!
The things we face that perhaps never crossed our minds!!!
Re your PS etc. Surely that is cr~*p. We (as does everyone, cancer or not) have the right to choose our surgeons and the very approach of your surgeon that its not “important” suggests to me you should be speaking to PALS or just stamping your feet about it all. I had a surgeon quite seperate from my Onc as my local hospital didn’t do immediate recon so I had to be sent elsewhere.
Kick up - remember we have choices. They are not Gods. Until you are happy don’t just bow down and say “okay, whatever you think is best”.
(The above advice is based on personal professional experience as a police officer and now being a “service” rather than an office. AS a member of the public, service user etc you have rights and opinions they have to listen too, xxx
Hi Ostrich
Thanks for this - a dilemma indeed! Hope all goes well for your return to ft work and stay safe.
Luv
Jane x