finding recovery hard after failed DIEP

I’m really struggling mentally and physically after a failed DIEP and would really appreciate any tips/stories people are able to share. I had a mastectomy with full lymph node clearance and a lumpectomy with SNLB just over 5 weeks ago.  After lots of deliberation/heartache I opted for a DIEP reconstruction one side and lumpectomy rather than a double mastectomy.  Initially the surgery went well but after a few hours the flap started to fail and they were unable to salvage it.  I was given an implant instead.

I spent 8 days in hospital.  I was totally unprepared for how little mobility I’d have after the surgery and movement/strength in my torso/arms. I was left feeling very vulnerable and unsupported for the first couple of nights in hospital.  I was fit and active before I had the diagnosis and lucky that I was able to continue with some v light exercise during the chemo.  5 weeks after the op and its still hard for me to stand up straight and walk comfortably.  The team say this is because I am slim and meant I was ’done up tightly’ after the surgery as a result. The abdominal wound is healing well but the stomach area is v v tight and I’m in a lot of discomfort.  I’ve got v limited movement in my right shoulder and a lot of nerve damage. I’ve still got quite a bit of swelling around the side of my chest and had an infection where the fluid built up which has luckily cleared with antibiotics. I know these are fairly normal but I’ve now been told that the arm problems are partly due to the amount of time I spent in surgery.

I’m due to have radiotherapy because of the size of the tumour/lymph node involvement and am terrified of the effect on this on the implant.  The surgeon was categorical that radiotherapy with an implant would lead to capular contracture which is why I went for the DIEP.

Everthing I have read/conversations I’ve had have reinforced the idea that tissue reconstruction is a much better, more natural-looking option with less risk of complications. I feel devastated that I’ve gone through all this surgery and have this huge recovery time and have an ended up with an implant . I’ve been told that you’re supposed to discuss the size/shape of the implant - obviously I didn’t get a chance to do that. The implant is larger than my natural breast after the lumpectomy and I feel very self-conscious and unbalanced. It feels really unnatural. The imbalance is likely to be worse after radiotherapy as I’m aware my natural breast may shrink and my implant may stiffen!

I used to enjoy exercise and use it a de-stressor and I’m finding it really hard being so inactive and unable to do things around the house or garden.  Surely the longer I do less, the longer it will take me to regain my activity level? I’ve seen a physio who has told me to focus on breathing and improving posture for the next few weeks.  What would help me the most is a rough idea of when I can get back to being more active but no-one seems able to do this.  I’m scared that at this rate, I will have had a recurrence by the time I’m back to fitness!  

I’m also finding it incredibly hard mentally to deal with the changes to my body and the fact that I’ve got a much longer and steeper recovery because of the extra surgery I had.  If the reconstruction had worked, then I think I would be fine and feel that it’s all been worth it - but as it is I’ve all this scarring, discomfort and recovery for nothing.  I know I’m lucky to have come of the surgery with a breast shape at all, that it would have been worse if it had failed later on,  but I’m often feeling upset  and I’m finding it very hard to be positive.

i have just read through your post - my goodness, you need some emotional support after all this trauma, and with the aftermath of how you are feeling.  I have no relevant experience to share with you, it’s just that I feel for you, and I hope that the hospital has some support service/Macmillan nurses.  Wish you better days.

Hi I had a double mastectomy diep flap reconstruction 12 weeks ago, I am so sorry that yours did not go as planned. I just wanted to say in my experience 5 weeks out is still early days and it took until about 8 weeks until I was pain free. I am still uncomfortable tummy wise now it’s still v tight. Exercise wise - I just do a lot of walking and listen to my body, I know when I have done to much as I get swelling. I was advised not to do any weight training until at least 12 weeks post op. 
I hope that you get the support you need. Call MacMillan to see what advice/counselling they can offer, that’s who I was directed to for support. 
here if you need an ear. Be kind to yourself x