When I was considering reconstruction options I went looking for accounts of people who had been through the process. There was not much there so I promised myself I would try to add to the information available. I am a few days into the process so will have to go back a bit to explain my situation. Bowel cancer diagnosis age 36 when having my first screening (aged 10 yrs less than my mother had been diagnosed, she died of it). Surgery and loss of 2/3 of bowel. Chemotherapy over following 7 months. Genetic investigations revealed HNPCC (lynch syndrome) so I have a continuing risk; I have annual colon screening and had a total hysterectomy to reduce my risk of associated cancers. When my sister was diagnosed with breast cancer I was told it was not associated with our genetics, just the 'background' risk of breast cancer, so i did not really believe it could happen to me - I had had my cancer.How quickly genetics research is advancing. I found a lump in 2010 and began my breast cancer journey which turns out to be genetically linked with HNPCC (not the more usual BRACCA genetics).

Having 'dealt' with breast cancer and all that trauma it was made clear to me that I have a level of ongoing genetic risk similar to having BRACCA genetics. The clinching question was "could you cope with a third cancer diagnosis?" The answer was no, not if I can help it. So I resolved to have a second mastectomy but I could not face actually doing it for a couple more years. I was interested in reconstruction as well but only considered implants so that total surgery time and my risk of complications (like DVT I have had before) was less. That was my plan but late in 2012 I decided that I wanted to check out all the reconstructive options before making my final decision. I live near Canberra but was referred to Prof. David Pennington in Sydney. I immediately felt as though I was talking to someone with vast experience, he explained the DIEP flap procedure and its advantages over TRAM flap and said that I did not have any insurmountable issues to prevent me having such surgery. He writes scientific papers on new procedures and exuded competence. The cost was a shock but I sold myself the idea of losing my remaining breast if I could go on to reconstruction after.

We drove up to Sydney a week ago and stayed with relatives then I had to be at Macquarie University Hospital for 6am Monday morning. Lovely looking new hospital. My husband could stay with me until I was taken through. Usual get changed, compression stockings, health questions etc and name wristband. ADVICE: keep them loose, I had a lot of fluid retention. I was wheeled through to the room outside the operating theatre and met the anesthetist. He could only find one vein and that cannula had to last a few days but it managed. Then Dr Pennington and the assistant surgeon came and drew on me, he was using measurements from a CT angiogram taken to show where the abdominal blood vessels were located. I was taken into the operating theatre moved over onto the table there, inflating calf compressors put on my legs and then I knew no more. My husband knew to expect a 10 hour surgery, we found it comforting to know that they stop for lunch in the middle. All went to plan, I don't remember being in recovery at all but was back up on the ward around 7pm. Very groggy and using a pca to give myself pain relief. I had a cannula for that, a catheter plus 6 drains in my body. My 'flaps' were checked every half hour for warmth and blood flow. I suspect that is why I am so close to the nurses station. Day 2 passed in a blur, you really do feel as if you have been hit by a bus, i was very dopey and had my eyes closed a lot but could hear things around me. Day 3 (Wed) was similar but the flaps were fine, I have not had any complications. Day 4 was when I would lose a lot of my attachments. The Canula, catheter and 4 drains came out. It was exhausting and I just lay in bed as it was happening to me. My dressings were all taken off, all the stitches stayed in place and lighter weight tegaderm dressings were applied.The physio got me up, which is a challenge with the abdominal surgery, but in some ways the anticipation of hurt was worse than reality. My brain had also cleared, I felt less dopey, maybe the anesthetic had worn off plus I was only less strong pain tablets. I was now getting myself I. And out of bed(slowly) and going to the loo myself. Day 5 (Friday) another drain came out but the remaining one in my abdomen was very productive so I was not looking at leaving hospital early. I had been told from the beginning to expect to stay in for 8 nights but heard that the lady done last week got out on the following Monday. It will all depend on the drain. I did the whole day just on paracetamol (and I have oral antibiotics). Day 6 much the same but I have realised that I need a bit more pain relief so have the odd endone tablet. Walking a bit further around the ward and up to concentrating on a bit of reading today, rather than just the tv screen. I have had the Tour de France on as I have been going to sleep. That extra noise was particularly good a few days ago while I was still bed bound and on the noisy calf compression machine. And what about the flaps/mounds/boobs? I look down and have shape there again and I like that. I am looking forward to seeing them without dressings and stitches. I forgot to mention that I have had a big elastic girdle on since the surgery. This is to support my stomach muscles and will probably be worn for weeks. It is hot and has rubbed my skin in places and was something I did not really know about beforehand. Enough for now, going for a walk.

Thank you for this Sharona. I am going through this next month, so am very interested in hearing your story. Good luck with your recovery, and keep blogging.. Xx

I'm scheduled shortly for a bilateral mastectomy and immediate reconstruction. Thanks so much for sharing your story.

Diary of a DIEP flap bilateral reconstruction

65 Replies

mum2jj
Member
13 years ago
You are doing amazing. It is great that you can go back on half days. I am sure if it is too much you could maybe have a bit more time off. Thanks again for all the frank updates. Take care and take it easy. Paula :)
mum2jj
Member
13 years ago
You are doing amazing. It is great that you can go back on half days. I am sure if it is too much you could maybe have a bit more time off. Thanks again for all the frank updates. Take care and take it easy. Paula :)
Sharona
Member
13 years ago
It is now about five and a half weeks since surgery. I am still tired and not at full strength but I am pretty functional. If I do too much one day I feel the tiredness on the next. This is my last week at home and I am due back at work on Monday (6 wks) which feels a bit daunting, I will aim to do half days for the first week. Earlier this week I took myself to a good physio I have seen before just to remind me about appropriate exercises for arms/shoulders to regain full mobility and what I can do with my tummy. She gave me some very gentle things to do to switch on my abdominal muscles but i really feel them afterwards so I am approaching those carefully. Interestingly she said that scarring 'settles' (not the right word) between 6 and 12 weeks so it is a good time to be moving and stretching so that mobility is not diminished. I said before that I am pain free when sitting still in my comfy chair but when I am moving or particularly when I wake up I the morning I am aware of all my surgery lines and the changed sensations of the nerves, my body is not settled/healed and does not fully feel mine yet, particularly my tummy. I tried on my old bras but they are too big now. However, an old swimming costume that I had thought of throwing out is now possible to wear again now that i have boobs again, i am really pleased by this. I measured myself trying to work out what size I am now - borderline A or B cup I thought. I went and looked at bras in a department store but needing wire free meant I did not know where to look so a couple of days later I went to Colleens (post mastectomy) in Canberra to be properly fitted. I ended up in a larger size than expected but that allowed for tightening the back over time, an A or B cup worked depending on the style and size. There were lots of lovely soft cup styles to look at and the foam cups give good shape to my new boobs that are a flatter shape than the old ones. I am pleased to now have some 'proper' underwear, helps me to feel more ready for work. Overall I am feeling happy with my new body and figure but also recognize that I still have a lot of healing to do and hope I can cope with work and all the home stuff and kids next week.
KatRoberts
Member
13 years ago
Hi Kim I am having bilateral tram/Diep surgery also on 30 August at Westmead public. Dr Moradi is my surgeon. Are you going with dr Hassell? Good luck for yours. Will be interesting to compare notes.. Kat xx Ps I am starting to get very excited, but very nervous too.. Just can't wait for it to be over so I can start healing..
Goldie_to_Raque
Member
13 years ago
Hello Sharona,,,thanks to Louise also for the suggestion of reading about your own experience. On the 30th August I am having a Bilateral Free Tram at Hunters Hill Private. I was unfortunate to have Cancer in both breasts in 2011 with subsequent mastectomies and the dreaded Chemo.

Two years without the right body has been damn awful and can't wait for some shape. When I was first diagnosed, the research I did on Cancer was massive, and now I find the need for knowledge to be the same. It seems that everyone who has had their Surgery shares wonderful information with those of of about to travel the same path.

I thank you for that. Knowing what to expect on a daily basis is just fabulous as I have to admit to some nervousness.

Shall keep reading all you have written to give me inspiration and courage.

Kim :)
Goldie_to_Raque
Member
13 years ago
Hello Sharona,,,thanks to Louise also for the suggestion of reading about your own experience. On the 30th August I am having a Bilateral Free Tram at Hunters Hill Private. I was unfortunate to have Cancer in both breasts in 2011 with subsequent mastectomies and the dreaded Chemo.

Two years without the right body has been damn awful and can't wait for some shape. When I was first diagnosed, the research I did on Cancer was massive, and now I find the need for knowledge to be the same. It seems that everyone who has had their Surgery shares wonderful information with those of of about to travel the same path.

I thank you for that. Knowing what to expect on a daily basis is just fabulous as I have to admit to some nervousness.

Shall keep reading all you have written to give me inspiration and courage.

Kim :)
mum2jj
Member
13 years ago
Wow. You are doing so well. Love reading your posts. I was interested when I read that your breasts are not big. I have been told that mine will be small as I am not a big lady and needing two breasts obviously means less tissue for each breast. I will be ok with that as i was never a big busted person. Just want some boobs. I told my Dr I would be happy with an A cup ;). Keep up the good recovery and thanks again for sharing. Paula
Janey235
Member
13 years ago
Oh Sharona that's brilliant news. You have done so well and I am inspired by your post. It's not too far away that I will go through a similar op to yours and you have helped considerably alleviating some of the nerves I am beginning to feel. I had the second opinion that my surgeon insisted upon today and his colleague was very good explaining further what I could expect with this huge operation. Covering all bases I guess that I need to know. My husband and I now have an appointment to see a Psycologist at the hospital which is also what my surgeon wanted us to do. So after that its all systems go. I can't thank you enough for sharing your very personal experience Sharona. I sincerely hope that your road to full recovery continues to run smoothly. I think I might take a leaf out of your book and diarise my own journey. Fingers crossed mine will go well too. Love Janey xxx
Sharona
Member
13 years ago
Hi Paula I am trying to recall the reasoning, I think that it reduced the length of what is already a very big surgery, possibly by about an hour. Also, if there are Any adverse findings with the pathology then that can be dealt with. Also in my case it could be done more locally and not in Sydney. Every surgeon may have differing views and each patient different needs. I must say that it was not nice to have no boobs at all for three months but helped me to appreciate all the more my new ones. Good luck with your surgery and really allow for time to heal, especially when chemo was more recent for you.
mum2jj
Member
13 years ago
Wow, amazing to read all you are going through. I too am planning the same. I was booked for earlier this year but have been cancelled twice due to some abnormal blood results. Still getting over chemo!!! I had a recurrence and so two lots of chemo in 18 months has taken its toll. However all the more reason for the prophylactic ,mastectomy. I was originally planning to have the mastectomy at the same time as the reconstruction. There is however now talk of doing them separately. Did your surgeon give reasons for separate surgeries? Thanks again for all you are sharing it is brilliant to have such warts and all info. Take care Paula :)

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Diary of a DIEP flap bilateral reconstruction

65 Replies

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