Hi i have just finished chemo thankfully!. I have discussed with my surgeon to have a double mastectomy with permanent expanders. I had a lumpectomy and axillary lymph node clearance in feb but not clear margins left side.
Has anyone had permanent expanders so no need for implants ?
How do they feel ? Ive seen so many posts saying they are horrendous .
Im due radiotherapy after has anyone had issues with theres after radiotherapy ?
Are you happy with them ? Im certainly not looking forward to 4 drains one was bad enough.
My surgeon is using my own skin so no mesh anyone else have this ?
I have tissue expanders which I was told could be permanent if i wanted - they have removable ports which were used to inflate them fully after I had recovered from surgery.
After a few months I am very used to them, and in clothes they look fine, but I would say they are very firm, and the edges are more obvious than with permanent implants. For these reasons I’m going to do the exchange for permanent ones at some point in the next year.
Hope this is helpful, feel free to ask anything else and I’ll see if I can help x
Hello, hope you don’t mind me jumping in. I’m due to have either implants or permanent expanders next Friday as part of immediate reconstruction. I’m stressing on how they will look. The nurse said they’ll decide on the day if my skin is strong enough etc… how are you coping now and how long did it take to recover, was it painful and how flat were the expanders. Sorry for all the questions… much love
Hi jnra
I have got expanders, I was told they could be permanent if I wanted but I am going to have them exchanged as although they feel
perfectly comfortable, they are quite firm to touch and I’ve been told permanent implants will be softer.
My surgeon said it would be best to have the expanders rather than immediately have permanent implants, mainly in case I needed radiotherapy, which I did, and then any shrinkage or tightening in the implant can be addressed when they are exchanged. They inflated the expanders to 75% capacity during the surgery, and said this was possible due to there being a good blood supply to the skin. This meant that in clothes I have never really looked or felt much different than before the mastectomy (I was a size a/b cup so not very big anyway). Even after my left implant shrank quite a lot after radio it is still not noticeable with clothes. Without clothes they do look a bit lopsided though, plus I don’t have nipples so looks pretty odd all round! I thought this would bother me a lot but it’s actually been fine - I think as I know it’s not the final thing and should look much better after the exchange.
So my advice would be if you have the expanders ask if there will be the possibility for exchange if you need/want it. Also I didn’t realise that the expander ports (that they use to fill them) would be quite large and hard. At first they felt uncomfortable to lay on, but after a while I got used to them and now don’t notice them at all - but just good to be prepared!
Lots of love and happy to chat or answer questions if helpful xx
Thank you, really helpful. The nurse said I can chnage them later on. Did you have chemo too or just radiotherapy? I’m dreading my results and praying to the lords and manifesting hard that I won’t need chemo.
How was your recovery, was it painful, were you up and about after a day or so, could you wash your hair etc…
I didn’t have chemo but it was touch and go for a long while - I ended up doing the optima trial where they genomically test your tumour and (as long as you are in the test group not the control group) if it’s ’low risk of recurrence’ on the prosigna test, you don’t have chemo. It’s for people with early, hormone positive, HER2 negative tumours, with 1-9 lymph nodes involved (.I had 2 plus 1 with micrometastases). Hopefully you don’t have any lymph nodes involved and won’t need chemo but the trial could be an option if you do
Honestly, the mastectomies have been the easiest thing about this whole thing! It was uncomfortable at first but I could manage with paracetamol and was really up and about after a day (although moving around slowly of course!) my main tip is get a drain belt to carry your drains in, makes everything so much easier! And a wedge cushion so you can sleep propped up. I also put a travel neck cushion round my neck to
help me sleep sitting up.
Thank you, really great advice. I’ll definitely ask about the test if it comes to that. Hopefully some tamoxifen and I’m good to go - although I’ve heard that’s not great. But I’ll take it any day over chemo!!
Yes fingers crossed! I had no symptoms whatsoever on tamoxifen (maybe bloating for a day or 2 but that’s it) and am now on ovarian suppression and just have mild hot flushes xx
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