DIEP flap reconstruction - anybody in the same boat?

FormerMember
FormerMember
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Hi all,

I have been on the cancer journey for more than 2 years and I now feel I need contact with ladies who are going through the same experience.

I was diagnosed with stage 2 HER2-pos invasive cancer in November 2019. I went through chemotherapy, lumpectomy and radiotherapy. All looked great. I had a complete response to the chemo. But there was this 2mm DCIS that they found where the tumour was. And it was a sign that all might not be over.

During a check in November 2021 I mentioned a hard area / lump which I was not sure was there before (after all the treatment nothing in my breast feels normal anymore). A biopsy showed DCSI. It took almost 3 months with cancelled surgeries and a scare that I might also have radiation-induced sarcoma (thank god that turned out to be wrong), but I finally had a mastectomy last week with a DIEP flap reconstruction.

Now I am home and feel teary and down. My swollen breast and tummy and the scars are terrible to look at and I feel my body is mutilated. I cannot stand upright because of the skin being pulled so much and I am still nauseous more than a week after the surgery. On top of that I am concerned that the DCIS is actually invasive as there was a lump.

Has anybody gone through something similar? I need to hear some encouragement that all will be fine.

  • FormerMember
    FormerMember

    Hi Tiger I'm sorry you feel so crap atm  I had mastectomy and reconstruction like you . tummy was the worse bit could get comfy in bed couldn't stand up straight for weeks but on a positive it gets easier by the day   have little walks do the exercises . I used bio oil for scarring still use it really rub it in especially on tummy area. I have a lovely flat tummy now and boob looks great after nipple and tattooing. I'm back at the gym that was 6 months later. look after my granddaughter walk my daughters dog . can't believe this time last year the mess I was in like you. it will get easier people say God you look amazing however they don't know how you feel its very normal. I'm on venlafaxin now it really lifts your mood helps with hot flushes if you get them . maybe with a chat with your bcn

    Good luck Thumbsup 

  • Ah I know!! It’s bloody rubbish. I’m sorry. I had my mastectomy and diep 4 weeks ago and it’s really hard. Take lots of painkillers, just do the best you can to get about a little bit, it’s painful but it does help to try and stay mobile, just a little walking from room to room, do your exercises, moisturise and rest. Rest a lot in between. You do start to feel a bit better and it gets better each day, already the scars are fading a bit. I hope you start to feel better soon, big hug xx

  • FormerMember
    FormerMember in reply to FormerMember

    Thank you, huntsmoor! I find the tummy problematic as well. I start to feel a little more comfortable in bed and my hubby says I am walking a little more upright. I cannot yet go for walks because of the tight tummy, but will do this as soon as I can. It is good to hear that it will all pass. 

  • FormerMember
    FormerMember in reply to Anna12345

    Thank you, Anna, for your encouraging words and the big hug! I am actually not in a lot of pain (I seem to have a high pain threshold). I have only been on paracetamol and ibuprofen since the operation. I will take your advise and walk from room to room more often. I usually get outside to improve my mood. It is hard not to be able to move much at the moment. 

  • It really is, I’m incredibly active too ordinarily, I walked around the garden too in those early days. They said to me you’re better off taking pain relief and moving about rather than not taking it and sitting down, hope it improves soon x

  • FormerMember
    FormerMember in reply to Anna12345

    I have not been into the garden yet. Will do this when this storm is gone. Slight smile

  • Yes today isn’t the day to start!! RoflSee no evil

  • FormerMember
    FormerMember in reply to FormerMember

    your welcome everyday is a milestone your look back and think how did that happen how did I do that . baby steps x

  • FormerMember
    FormerMember in reply to FormerMember

    yes, baby steps. Last night I was able to sleep without a blanket under my knees for the first time. One further step into the future. 

  • Well done. Small victories really count.  I found as my recovery progressed it is helpful to have a pillow to my left so I could rest my right arm on it to sleep on the side, I had a right side mastectomy x