Hi everyone,
I was diagnosed in 2004 and had right sided mx. In 2005 I decided to have a prophalactic mx on left side with bilateral recon with expanders at same time. The pain afterwards was kept at bay with morphine but I couldnt breathe properly and could feel the implant on the right side(where I had had rad) moving about! I could see straight away that it wasnt in right position and was shifting to my armpit! Following this I had a pulmonary embolism and nearly died. I still have expanders in but the right side is hard, very uncomfortable, smaller than left and still pushing into my armpit.I have been told that the ports ,which are still in , must be removed and should have been within 6 mths(mine have been in for 21/2 yrs!) and I now need a general. I am now faced with making a decision to have expanders removed and left flatchested , or attempt implant s being put in but risking same thing happening-help! Just dont know how I can face being flat chested but then frightened about having further surgery if cant be certain result will be ok. Feel frightened and very low- has anyone else been in this situation?
Hi Happyshopper (love your name)
Sorry to hear about your recon problems. My situation is not quite the same but I do share some of your fears.
I had bilateral mx and immed recon with expander implants in May. The implants were fully expanded with 400ml each at the time of surgery. The resulting tightness was close to unbearable and I still can’t breathe properly. I got fobbed off with " give it time to settle down" etc. and to some extent things have but it is uncomfortable. I have 4 months to wait before appointment to talk about op to put in permanent implants and fear I will be over stretched beyond repair by then.
Some days I think the expanders are not too bad - definately better than flat chest and I know I would struggle with protheses. Some people keep the expanders for ever and I think why go through more surgery- the permanent implants may be no better. On other days the expanders are so uncomfortable and I lose hope.
In your case, if you are going to have to have a general anaesthetic anyway why not try the implants? If the problem has been on one side maybe the surgeon can do something to anchor the implant better. Do you have a reconstruction nurse specialist at your hospital to talk it through or have you tried the peer support frome Breast Cancer Care - you just need to phone the helpline to request it. They try to match you with someone who’s had similar treatment/issues and you can talk one to one. I found this very helpful.
You can get through this.
Best wishes
Misha
Hi Misha I had my expanders out after 3 months and had the permanent ones in Jan this year … they are still very uncomfortable and tight I will never accept them as my own but couldnt handle the alternative I go back for the nipple in Oct but I wonder will they ever settle dont know anyone who has had them so cant compare
I’m 8 weeks post-op following bilateral mastectomy and immediate reconstruction with tissue expanders. The discomfort isn’t really lessening, in fact my Consultant increased my pain medication 2 weeks ago and started me on Tramadol and Lorazepam which makes me feel sick so I’m now on anti-emetics too!!
I went back to the Royal Marsden last week and it turns out the pain is being caused by my left expander moving!! I couldn’t beleieve it when the Consultant told me but she was able to move it with her hands and that reproduced the pain I’ve been getting in the ribs. She doesn’t know why this has happened and quite honestly told me that she doesn’t have any magic solutions for me. She has suggested I try wearing a tight fitting sports bra 24/7 until my next appointment in 4 weeks and see what happens.
The right hand implant is nicely in place where it should be but for some reason the muscle on the left hasn’t contracted around the expander.
At least I now know why which is something but if it doesn’t settle and I’m unable to live with the pain the only option will be to take the expanders out.Personally for me being flat chested would be preferable to living with this pain and tightness all the time. I’d be worried about having the expanders exchanged for somethig else as there’s no guarantee they wouldn’t be just as uncomfortable.
I did try Peer Support but they weren’t able to match me up with someone in a similar situation,
Trudie.
Hi all
bc left side age 28, chemo/rads. New primary right side age 36 chemo/bilateral.
When I first saw the PS he told me LD on the left & expanders in both, then implants.
As I said I did not want additional scars if possible I asked about expanders on both & no LD, he said we could give it a go but any problems (due to rads) we would have to review.
Well, had my expanders put in Jan this year, a few probs on my left side to start but expansion went well, a little smaller on left but not much. 2 weeks before implants went in I asked what sort of size will I be, ‘depends on the style & shape of the bra’ so no real answer, all I kept on getting was, don’t get used to the size of the expansion(D cup).
I am now 4 days post op & feel sick! Right side is an A cup, left side not even that big!! I wasn’t expecting to be big, but at least an A/B would have been nice, now my cup size is smaller than my 10 yr olds. I wish I had never had it done in the first place, I now feel so low I just want to hide, I can’t even cry I feel so mad. I have know worked out that to look in proportion I would have to get down to a size 6/8, so me thinks ok lets think of my options - I’ll get a gel bra to push them up, only to find the left will not push & the skin around it just creases. I just want to get blind drunk so I don’t have to deal with this, i thought after 21/2 yrs i could start rebuilding my life-how wrong i was, i just dont want to be here! Sorry for ranting. I go back & see ps on friday, havn’t a clue what i’m going to say, to be honest i don’t even want to go.
If i was you i would ask all the ‘what if’ questions you can think of, make sure you know all your choices & there likely outcomes(good & bad). I do hope it all goes well & you make the right choice for you, you take care.
Louise x
Hi Louise,
I’m so sorry to hear you feel like this. Do please give the helpline staff a ring and have a chat with the nurses here, they may be able to give you some suggestions as to what you can do. The lines are open Mon to Fri 9am - 5pm and Sat 9am - 2pm, calls are free, 0808 800 6000
Hope they can help you. Take care,
Jo, Facilitator
Hi Louise,
thanks for commenting on my situation- I cried when I read your message because that is exactly how I felt 21/2 yrs ago when I first had this surgery done. That is why I am so uncertain what to do now. I remember on the 3rd day post op after having these bilateral expanders put in , the pure shock of what I saw and felt. The expander on the left(prophalactic side) looked ok but the one on the right where I had the radiotherapy- I could see straight away that it was situated too far over (towards my armpit) and I could feel it sliding when I was breathing(couldnt take a full breath for a very long time due to the pure discomfort of it all. I was utterly inconsolable and felt it was my fault fort being so vain in the first place. To make matters worse my PS went off sick that day and wasnt told until 20 mins before my surgery- a complete sranger did it ( I never even met him) so felt even more it was my fault that it went wrong for not saying no(not that I was given the option). However, everyone wanted me to "embrace " these expanders, “it will all be ok in the end” , even though I felt just like you @ve described. It has hugely affected my confidence, and against my gut feelings I went ahead and had them inflated( I was encouraged by my PS and breast care nurse to continue as “now they are in, you might as well finish”). following as much expansion as i could bear (just about A cup ) it became apparent that the right side was indeed too far over and dinot open up fully as told it would do- yes, I had been right all along, it was in the wrong place! To cap it all, 10 days post op I had a PE, cellulitis which then resulted in trunkal lymphodema- got to laugh, havent you!!!
since then , my right implant has continued to migrate towards my armpit, very uncomfortable and I now have a contracture! So, here I am , faced with having them out (I have requested this after being told I need a GA to remove the ports which should have been taken out 6 mths after surgery) and still the PS is suggesting that I have other implants put in when the expanders come out!! I feel like getting on an aeroplane and flying off to somewhere so that I dont have to face any of this. I, like you , am regretting the day I went down the reconstruction route, even though I’m glad it has worked out for so many.
happy shopper
hi ,I’m sheila.i was diagnosed with bc 04 after my mammogram.had an implant in 05 which got infected then removed.had a tram flap oct06 again it became infected walking about smelling like a rotting corpse,a bit graphic but true.this was removed back to the drawing board,had a dorsi flap in june 07 3rd time lucky no problems.waiting for my nipple recon which will be done before christmas and i can honestly say i haven’t regretted one decision that i made.had a fantastic ps and all the nursing team ,you get to know them over the years.i now feel absolutely brilliant.good luck to all you ladies/gents.