Delayed DIEP reconstruction

[Worried sister]

Thanks for that - if my sister doesn’t feel up to it, I’ll try it myself. 
Everyone’s been so kind - very much appreciated x

[delly]

@Robj53  -  Hi there.  I noted your earlier post mentioned a charity to contact, ref being "put in touch" with others who'd been through what you are considering. But that you'd forgotten which charity it was 😊

THIS one, the one you're on does, via it's Website address. It offers the "Someone Like Me" service, to either directly speak on the phone to, or by email, aside from also posting for info from others on the Forum. 

Have a look at the link and get in touch.

https://breastcancernow.org/information-support/support-you/someone-me

Good Luck to you with it all.  Delly x❤️x

[Worried sister]

Thanks so much for your long reply – it's great to hear you're doing so well, and very encouraging too. My sister's leaning towards implants at the moment, as we've also heard very different experiences (as everyone's different), but it really helps to find out more about the day-to-day recovery pattern.

If she feels she can, she'll take you up on your offer of questions – if not, I'll do so on her behalf if she still has any after seeing the plastic surgeon.

I do hope all goes well with your follow-ups – is the liposuction on your tummy again? I've heard the nipple tattooing's very effective. Does nipple-sharing mean they make two out of your other one? This is all so new and sounds a bit like sci-fi, to tell the truth!

Useful too to know about the heat/sweats, so that we can go prepared.

Thanks again for taking the time – this site is really great xx

[Fiveoclocksomewhere]

Hi

It’s Queen Victoria Hospital in East Grinstead- I guess there are regional equivalents across the country (and hope you won’t need further treatment)

xx

[greenfairy]

Hi, I have a vascular disorder abs had complications but may required further surgery - can I ask where the specialist centre is? Thank you.

[Fiveoclocksomewhere]

Hi

I'm 57 - had the mastectomy and DIEP last May when I was 56. I'm reasonably fit, eat fairly healthily (lie about the number of units I drink, etc), and am generally pretty healthy. My recovery was really good - and I suspect that's a combination of the factors above, the fact that the hospital followed the Enhanced Recovery After Surgery (ERAS) Protocols, and a huge dollop of luck. I was out of bed the day after surgery, and walking round (slowly and bent over, but still walking). The drains were all out within 3-4 days (I know different surgeons have different approaches) and I was home after 3 nights in hospital.  I think I was able to shower on day 2 after surgery - very cautiously, but that made me feel millions of times better. I didn't really have any pain, but again I think that's to do with the ERAS protocols and the fact that I was meticulous about taking paracetamol and ibuprofen for a couple of weeks, so I didn't give it a chance to break through. I went for a walk every day - initially round the block, and then (very slowly) building up, and slept a lot - God, did I sleep a lot! I have a desk based job and was off work for about 2 1/2 months - in retrospect, I could probably have gone back on a phased basis a couple of weeks earlier, but am glad I didn't. I couldn't go to the gym for 12 weeks, and have taken it fairly easy since then, but I think that's innate laziness rather than anything physical (if I'm honest).  Everything healed well, and next week I'm having liposuction and nipple sharing surgery, which will be followed by nipple tattooing at some point just so they look ok.  The hardest bit for me was the night before the surgery, and the night after - which was just very long and very hot - but the nursing staff were brilliant, and I just listened (sweatily) to podcasts all night.

I'd obviously rather not have had this experience at all, but given that's the hand I was dealt, think it was as positive as it could have been, helped of course by the fact that the surgery caught everything so no follow up was needed. The NHS was utterly brilliant - I'm lucky enough to live close to a major regional centre for complex, microvascular breast reconstruction, and can't speak highly enough about it.

I hope your sister's doing ok, and I'm really happy to try and answer any questions she, or you, may have. It's not a club you want to be part of, but the support I got from women on this site was amazing, and I appreciated it so, so much.

Take care

xx

[Worried sister]

Hi,

Your experience sounds as encouraging as it can get – my sister is looking at her options, and this is one the surgeon mentioned. It would be immediate reconstruction, as I believe yours was – not delayed. I wondered if I could ask how old you are? My concern is primarily about recovery time – she's 58 and pretty fit.

Thanks!

[sunshine1806]

fiveoclocksomewhere  - great you had good experience . I would have liked immediate reconstruction but wasn't an option. 

Same as OP, I'm looking at ( thinking about ) delayed reconstruction- but worried about build up to it and the actual operation, as opposed to living with 1 breast ( its been 2 years for me ) .....

[Jacaranda]

Really appreciate reading about your positive experience Fiveoclock somewhere. Thank you for that. You’ve given me confidence. x

[Robj53]

All the best with your surgery on the 7th July.  I’ve opted to wait until after the summer to have my surgery but no date as yet. I’m presuming the autumn.  But as you say, very little comment about how people have felt recovering from  DIEP.  
  

[Rosiecrocodile]

My delayed DIEP surgery is planned for 7th July and I am also worried about going for such a big (unnecessary?) surgery. I have a nice stomach so no real need for tummy tuck. My mastectomy scar is awful though - very puckered and ugly. I just hope I am not swapping one problem for another and giving myself a summer of discomfort into the bargain. So hard to find people to advise who have been through it. When is your surgery,?

[Fiveoclocksomewhere]

I should have added - I’m 56, and I thought I would find it easier to move forward from this if I had reconstruction (and whilst it’s early days, that seems to be the case). 

xx

[Robj53]

Thank you for your reply.  I’m so glad to hear of your positive experience with this surgery.  I feel more confident about making my decision.  

[Fiveoclocksomewhere]

Hi

i had a mastectomy and immediate reconstruction just over 4 weeks ago. I know everyone’s experience is different but for me, it’s been very positive (in the context of it being an experience that you wouldn’t want to go through, if that makes sense). I was out of bed and walking round on the day following surgery, abdominal drain removed, and discharged on day 3, and I’ve been home since then (sleeping for Britain!).  I haven’t had any pain at all - the anaesthetist was obviously brilliant, and I was meticulous about taking paracetamol/ibuprofen regularly for about the first 10 days, then realised I wasn’t in any pain anyway. Although my stomach is very tight, I was able to stand straight within a week (and was only slightly bent over before then). I’m walking every day, and whilst I’m making an effort not to overdo things, feel pretty normal, all things considered. The recovery wasn’t anywhere nearly as difficult as I’d thought it would be - but I feel very lucky, as I know other women’s experiences have been different. I suspect that the fact that the hospital followed the Enhanced Recovery After Surgery (ERAS) protocols probably made a real difference, as did the fact that I’m fairly fit and active normally anyway, but I’ve tried not to overthink things, and just go with how I feel. 

I hope this is helpful - wishing you lots of luck, whatever you do.

xxx

[Robj53]

I forgot I wanted to ask if anyone knows how you can get to speak to others who have been through this surgery?  I was told to contact a particular breast cancer charity and they would put me in touch with people about this.  However, I’ve forgotten who it is I would contact. 

[Robj53]

I forgot I wanted to ask if anyone knows how you can get to speak to others who have been through this surgery?  I was told to contact a particular breast cancer charity and they would put me in touch with people about this.  However, I’ve forgotten who it is I would contact. 

[Robj53]

Hi 

I had my left mastectomy almost a year ago and because of covid an immediate DIEP reconstruction wasn't an option.  I could have had immediate LD flap but on discussion with my surgeon that as I row as a sport, it was felt a DIEP would be a better option for me.  

I have asked to be considered for this surgery this autumn as I wanted a year post surgery to get fit again and prepared for the reconstruction.  However, I'm so up and down about opting for reconstruction.  I don't have any issues post mastectomy and happy with how I look on the whole but find using prothesis quite fiddly and am always aware and wondering if it has moved (I do pin the soft ones to my bra).  I'd like to feel more confident with the clothes I wear and in my early 50's feel its ok to want to have a new breast.  

However, I know it's a big operation and I would need to be completely recovered before getting back to my sport.  I'm worried about putting my healthy, fit self back though more surgery which isn't completely necessary but on the other hand its surgery that is offered to all women post mastectomy so I shouldn't feel guilty about wanting to have this surgery to feel 'compete' again.