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

Karonjulie
Member
12 years ago
Hello I have just been diagnosed with invasive ductal carcinoma and DCIS in my right breast and micro calcification in my left breast which came back benign. I have done a lot of reading and have decided to have a bilateral mastecomy. I feel like the surgeon turned up his nose when I suggested this. I spoke to my GP and discussed it and he agreed with my reasons for wanting both off. I feel like people are thinking I am going a bit drastic. So have decided to have diep reconstruction. Saw plastic surgeon today and I felt like she was swaying me to only do my right breast. She said it will be 14 hour surgery including the mastecomy. The risks are higher doing both. I felt like it was scare tactics. I walked out and said to my husband I want both done because no one can guarantee cancer won't grow in my left breast and I don't want to worry about it. I know the recovery s longer but the emotional side to me I am sure woud be the same if I only had one done. I am so confused!!!! No one seems to understand how I actually feel. When you are told you have cancer you just want it gone at what ever cost.
Jacqallen
Member
12 years ago
Hi Mary I have been devised to have my right breast reconstructed by DIEP- potentially 14 December - mastectomy with immediate recon. I would really like to read how you went - hope you are recovering well. Also - I am really confused about what type of reconstruction will give the best or at least closest symmetry - would appreciate knowing how you chose? If that is ok? Warm regards Jacqueline
LouiseTurner
In Memoriam
12 years ago
For me breast reconstruction has been the most difficult part of my BC experience. I had my bilateral, skin sparing mastectomy with TRAM flap reconstruction back in April, also at Westmead in DR Lams team. But the consultant that took my surgery was Dr Moradi.

I am back this Friday 11th for revision surgery and hoping to have some reshaping and tidying up done. Hopefully this will be the last procedure then on to nipple reconstruction.

Good luck to you with your procedure

Louise
LouiseTurner
In Memoriam
12 years ago
Hi ladies, I know some of you are already members of the private blog called Breast Reconstruction. In case you are not aware of it it is a place where women like Sharona, who have had various reconstruction experiences, are sharing their stories and including pictures. Pictures can be very helpful when considering these procedures.

I agree 100% that the more we share with each other the easier facing this surgery becomes.

If you would like the become a member please click the link below and request membership.

http://www.bcna.org.au/group/61026

warmest regards, louise
LouiseTurner
In Memoriam
12 years ago
Hi ladies, I know some of you are already members of the private blog called Breast Reconstruction. In case you are not aware of it it is a place where women like Sharona, who have had various reconstruction experiences, are sharing their stories and including pictures. Pictures can be very helpful when considering these procedures.

I agree 100% that the more we share with each other the easier facing this surgery becomes.

If you would like the become a member please click the link below and request membership.

http://www.bcna.org.au/group/61026

warmest regards, louise
Sharona
Member
13 years ago
Hi Mary

I am so sorry to be so slow to reply. I used the Zodee site and this is the link to the item I bought in my usual size. The lack of a waistband at the top made it more comfortable and it came higher than my new tummy button. I also liked the boyleg.

http://www.zodee.com.au/p28939-ambra-bodywear-killer-figure-waist-killer-boyleg-brief

It was 10 weeks ago that I had mine and I am recovering well. I am looking forward to 3 months post-surgery when my stomach muscles should be recovered and I can try to get them working a bit more. I am doing that already a bit with incidental activities (vacuuming) and some gentle yoga but if I do too much I can feel them aching.

My very best wishes for your surgery and recovery - listen to your body.
Mary_11
Member
13 years ago
Hi Sharona,

Could you please tell me whether you bought the full brief Ambra shapewear briefs on-line as I would like to do this before my surgery in a couple of weeks as you suggested.

Again thank you soooo much for all your tips and information (which I've read several times). I'm having only the DIEP for one breast and the other one will be reduced and lifted around 3 months after the major surgery.

xx Mary
Sharona
Member
13 years ago
I am so pleased that what I have written has proven to be helpful to people. I know that everyone is different and may have a different experience, all I can relate is what has happened to me as I go through this really big process. I do want to keep adding updates further on as most posts talk about close to surgery but we all tend to go quiet when we get further along out journey and get caught up in 'normal' life. I have never blogged before but I would now thoroughly recommend joining BCNA's online network. It has been really gratifying to recieve such thanks for my ramblings. Good luck with your surgery.
Mary_11
Member
13 years ago
Thank you so much Sharona, as I am going to undergo this surgery in around 4 weeks and before reading your "story" I really couldn't find much "specific" information on what happens or what to expect post surgery. What you have written is fantastic and so helpful with all the hints and I wish you all the very best. Reading what you have written has inspired me and made me feel much more positive about my up-coming operation.

xx Mary
Mary_11
Member
13 years ago
Thank you so much Sharona, as I am going to undergo this surgery in around 4 weeks and before reading your "story" I really couldn't find much "specific" information on what happens or what to expect post surgery. What you have written is fantastic and so helpful with all the hints and I wish you all the very best. Reading what you have written has inspired me and made me feel much more positive about my up-coming operation.

xx Mary

Forum Discussion

Diary of a DIEP flap bilateral reconstruction

65 Replies

Recent Discussions

Expander to implant surgery

Implant Reconstruction After Radiation

Leg Flap (without muscle) bilateral reconstruction

Unilateral mastectomy with delayed reconstruction

Second mastectomy