Hi all.
I was diagnosed with triple negative breast cancer in june 2023. I have chemotherapy treatment from july till November followed by a lumpectomy and lymph node biopsy. Thankfully my lymph nodes were clear, however, blood test have revealed a faulty brca 2 gene so have now being told i need to have a double mastectomy and hysterectomy i have chosen to have diep flap surgery to reconstuct both breasts, i just wondered if anyone else on here has had this procedure done and could advise me on what to expect. My cancer nurse has been fantastic but obvioulsy not been through this so would like to hear someones first hand experience as as you can imagine im really anxious about this.
Thanks
Hi Janelle77
Sorry to hear that you have the faulty brca 2 gene. While I can't advice you about the surgery you are going to have done as I haven't had it, I noticed that you haven't had any answers yet so I thought I'd reply to you anyway and to direct you to the BRCA Positive Forum where you can also join to put your question in. Here's the link to that forum BRCA positive forum .
Wishing you the best of luck with your surgery.
Best wishes
Daisy53
Hi Janelle 77
I haven't had a double DIEP, but am 1 month post DIEP flap on the side where I had a mastectomy and implant 2 years ago. I had capsular contracture from the implant which eventually my breast surgeon agreed should be taken out. He referred me onto a plastic surgeon at a private hospital (funded by NHS) to look at the remaining options available as I also had skin damage on that side, purportedly due to radiotherapy . However my skin was absolutely fine until I had lipomodelling which my breast surgeon thought might improve cosmetic results (rippling) and also protect me from capsular contracture. It actually caused more problems . The skin was very red right up above my fake breast when I came round from that procedure and never went back to normal, and thus my DIEP flap has a much larger area of skin replaced than is usual.
Recovery from DIEP flap procedure was tough even on just one side, the main discomfort being in my abdomen, especially when using my hands to shuffle my bottom around on a bed when getting comfortable or getting off the bed. I spent the first night on an air bed in ICU with pillows under my knees and arms to avoid stretching the abdomen wound. I am a hyper active person and to begin with thought I would find it unbearable to stay in this position but the care I got was of a very high standard and once the nurses had moved me up a bit I felt more relaxed. They gave me quite a lot of morphine such that I was hardly bothered by the regular 15 min checks of blood supply to the flap and dozed through it .
I did have problems later from impacted bowel and regretted not requesting Laxido from my GP to take in with me. I suffer with IBS and diverticulitis but had not been requesting a Laxido prescripton for a while due to being on Abemiciclib preventative hormone positive breast cancer cycles, which causes diarhoea. However even when back on Abemiciclib, 10 days post DIEP op, I still had faecal impaction. I had been given stool softeners in hospital but was nevertheless unable to have normal bowel movements. By 2 weeks post op it was extremely painful when trying to pass a stool or wind. My GP prescribed Laxido which gradually softened my stool enough to have normal bulky bowel movements without pain.
I am now feeling very well apart from hard itchy areas around the wound of my new breast. The plastic surgeon explained that it is the areas furthest away from the new perforator in the arm pit which are most likely to get fat necrosis. As I had similar problems before surgery, and so much skin was replaced, I am not that surprised that I am having so much hardness above the breast and near my cleavage and am massaging these now that my wounds are just about healed. The middle of the breast is lovely and soft and it is nice to be able to hug people without worrying about causing them discomfort as had been the case from the outset, even before radiotherapy , with the implant.
I am now able to walk quite long distances, the usual stomach problems (from Abemiciclib) permitting and am following all the guidance and personalised exercises from my brilliant NHS Physiotherapist.
I will be allowed to start driving in another 2 weeks but was told by hospital physio that for 3 months I should not be hoovering, lifting anything heavier than a half filled kettle or doing any repetitive movements such as chopping. Further that I should not do any vigorous exercise for 6 months. I prepared and froze a lot of onions, celery and carrots in advance for hone cooked casseroles and had a close friend stay with me for the first 3.5 weeks post op who hoovered and chopped more veg for me before he left.
I was advised to buy full support pants fitting to my waist, bra extenders and proper full cup support bras a band width larger than usual in advance. I didn't quite get this right. The bras I bought being more post mastectomy only surgery. I thus had to order proper full support bras on a range of sizes to arrive whilst in hospital which the hospital breast care nurse then tried out. She recommended black ones and that you go down a cup size to make up for going up in band width.
I do get itching in the hard areas around the breast wound, especially above the breast where I already had skin problems. I have found Loratadine, an anti histamine, to help with this. I think the tiny amount of elastane in the new total support bras is an irritant when wearing the bras 24/7. I had mistakenly bought some sports bras and some front fastening bras which the BC nurse in the hospital told me were not suitable, a full cup support bra being needed to shape the belly tissue into a breast.
The YouTube video I found most helpful pre op is from somebody in US called Melissa , see youtu.be/64Qa-62yAbo (who did have a double DIEP flap) even though some of the advice she was given ( eg as to how high ypu can lift your arms post op) differs. I especially benefitted from her tip about sleeping on a settee on discharge. Mine is lower and firmer than a bed. Once home on day 4 post op, the only time I needed stronger painkillers than paracetamol was after a night trying to sleep on my own, higher softer bed. Once I realised the benefits of sleeping on a settee , my recovery was rapid and I have nor been taking painkillers for the last week or 2 .
Overall I am way happier with the softer DIEP flap than the implant and glad I had the procedure. I do hope this information helps, even though we are all different and my operation was slightly easier being only one side. I wish you all the best. Please do not hesitate to ask if you have any more questions.
I wish you all the best at this challenging time.
Abemified
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