Hi Ozbabe - I had a bilateral mastectomy and Diep recon on 15th October so im 2 months down the path. I have no regrets at all (but then I don't know how I would be feeling if I'd made a different decision ‍♀️)... what would you like to know? Happy to share 

I had cancer on one side - multiple tumours over a large area so in the end a lumpectomy wasn't an option (initially it was borderline but as the tests and diagnosis went on they found more and more)... like you I was then concerned about being unbalanced. Then the MRI showed up abnormal tissue on the other side. It turned out to not be cancerous but it was enough to enable me to push for a double mastectomy. They wouldn't agree to do both sides without recon (not sure why but probably because one side did not actually have tumours and they were concerned i'd regret it later) so then having established that a mastectomy without recon was out of the question, I didn't want to be flat on only one side so that meant a DIEP (I didn't want the imbalance of just one implant either) and my reasoning was that you get one chance with DIEP so given I already had abnormal signs on the apparently healthy side, and I had enough belly fat thanks to lockdown comfort-eating (!) for me it was best to have both sides done at the same time... and I was really lucky to have a sympathetic surgeon who understood the rationale and recognised it wasn't blind-panic on my part, but logical and calm

It's difficult to say how it compared to other options and everyone has a different outcome - so many factors involved - but my experience was that the pain was fine - I was off morphine after a day, then I took the max paracetamol and ibuprofen for about 2 weeks then stopped both by the end of week 4. They sent me home with morphine but I never needed it... nice to have it just in case. The worst thing I found was being incapacitated... I could get out of bed and shuffle to the bathroom the morning after the op, but having four drains means every time you want to move it's a complicated process. So you really have to force yourself to make the effort to get out of bed and move around because it helps the recovery but it's a performance each time.... the pain was manageable with the drugs though... I've had more painful trips to the dentist if I'm honest

Once the drains get removed (in my case one a day over a 5 day hospital stay) it gets easier with each one. I've read that some surgeons leave the drains in for much longer though, and others hardly use them at all, so best check that because it differs... I guess the other thing I would say is that you end up in a lot of elastic which doesn't hurt but it's exhausting and it does get you down eventually. Again, every surgeon/ patient/ experience is different but in my case I had a post-mastectomy/ sports bra and also the lovely Spanx that go up to just below your (reworked) boobs and I wore them day and night for 6 weeks. I had a few moments of feeling trapped in it all... But if you can stick with it I do think it's worth it. It's certainly helped me with keeping the swelling to a minimum, and it helps everything to settle in the right place too.

Thank you so much for your honesty .

It's good to be able to hear other peoples experience.

feeling anxious about my appointment this afternoon as not had a good experience so far it's been 8 weeks since diagnosis but due to complications I have been delayed .I'm hoping that this recent wave of pandemic doesn't delay me further now .

Hi Ozbabe. I had a mastectomy and DIEP flap reconstruction on one side 2 weeks ago. Like notmyidea I'm glad I did it. I lost the nipple but kept my breast skin. The surgery was amazing - with a bra on I look just the same as before but with a completely flat stomach. I haven't been in pain, it's more that my stomach is sometimes uncomfortably tight and my breast is a bit tender. The two nice surprises are that I can raise my arm straight up in the air (because the stitches are internal, to the chest wall) and that I have a fair bit of sensation in the reconstructed breast. I'm now taking about 4 paracetamol a day but doubt I'll need to take them much longer. I don't have any gauze dressings anymore. I have 1cm width brown micropore tape over my stomach scar and around where my nipple was. I'll be wearing the control pants and bra for another month. I stayed in hospital for 3 days and had 2 drains which were removed before I was discharged. Since coming home I've taken things pretty easy but I have been doing the physio exercises and building up my walking. To my complete surprise I am now walking 6km a day. I've been told that I'm recovering particularly quickly so I'm aware it's not the same for everyone.

Wishing you all the best with your appointment and as you work out what's best for you.

Hi Elizab

Thank you , you sound like the model patient .

were you super fit prior to surgery ? 

As you say getting on and moving as soon as possible helps the recovery . I'm not one to sit about so that won't be a problem .

Were you provided with bra / pants or did you have to purchase your own ? And if so where can you get them from ? 

I hope your appointment goes well today and you get some progress. The waiting is the worst of it. I worried about the delays... at times it feels nothing is happening but behind the scenes they are preparing. In the end, after the waiting and the tests and the waiting and the appointments you think are going to change something it end up being a 10 minute chat and "come back in two weeks"... and more scans... Initially I was told at least a 6 week wait for DIEP but once I made a firm decision and told my BC nurse it was what I wanted, I was in the operating theatre two weeks later.... so the final bit can happen fairly quickly if there is a slot

I'd say I was moderately fit until about 6 weeks before the surgery - I walked the dog every day and did occasional yoga/Pilates. Then in the 6 weeks leading up to it I stepped up the exercise and did lots of full body workouts with weights! I think I was looking for something I could control! I was diagnosed in July so it was a long, at times, agonising wait. But I got my tissue results yesterday and the tumour didn't grow at all between July and November so there was no negative impact although it was tough mentally. It took a couple of months and lots of biopsies to determine whether my calcifications were pre-cancerous (they were) so that was part of the reason for the delay.

I got the bras from Nicola Jane. I'd suggest only getting 2 or 3 because I found that the bra that was comfortable straight after surgery now isn't and I much prefer the other one. My hospital said they needed to be back-fastening and to also buy a bra extender as the breast can be swollen. I needed a bra extender for a couple of days. I bought control pants from Amazon - a brand called Angool. My ward mate had the same. I'm a size 8 and was surprised that small was too small! The medium is still tight but at least I can breathe!! I've been told to wear compression stockings for 3 weeks afterwards. The hospital gave me one pair - I had another already from my sentinel lymph node biopsy which was done 6 weeks before the DIEP. That was to check my lymph nodes were clear because if I'd needed radiotherapy I would had to have a delayed reconstruction once the radiotherapy was complete.

Thinking of you this afternoon.