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

SoniaE
Member
12 years ago
Sorry, forgot one thing. How are you Sharona now? Is it nearly a year since surgery? How are you feeling/how is your stomach feeling and such?

xx
SoniaE
Member
12 years ago
Sorry, forgot one thing. How are you Sharona now? Is it nearly a year since surgery? How are you feeling/how is your stomach feeling and such?

xx
Judy_Dennis
Member
12 years ago
Hi Sharona,

It's been interesting reading your diary thank you. I had DIEP reconstruction the right breast only just on 8 weeks ago now. All went well in the early part but having trouble with a small cavity under the breast and needing it dressed every couple of days, had hoped this wouldn't happen, also got an infection. Tummy also gave me grief in the middle but is much better now but still covered. Cavity has to heal from inside up of course and I get frustrated and emotional at this long haul. I am driving again and doing lots of walking around the farm but it is annoying that I can't get back to normal yet. Live in country Victoria and hoping that soon I can get rid of all these dressings. Wondered how you are going now?

Judy
Kitkat2273
Member
12 years ago
I had bilateral mastectomy with immediate recon (DIEP) on 28/5/14. I've been very lucky that my surgeon has never questioned my decision (prophalactic due to 3 generations of every female having breast cancer early tho negative for gene). OP was 12hrs and first op I've ever had. Had morphine pump post op and honestly minimal abdo pain and no breast pain (numb). 4 drains (in each breast and either side abdo) which I was discharged with and gradually removed over next 2wks. Abdo binder fitted Day 2 and I have to wear for 10 weeks - I find that I get back pain if I forget to put it on (I leave it off at night). My biggest problem post op was shoulder pain due to being in crucifix position during surgery which morphine did not touch - anti inflam helped best. Also being woken every 1-4hrs over first 4 days for checking flap had me almost loosing my mind. Luckily I had a nurse assigned to me only so she would bring me eye mask so I could avoid being totally woken. The warming blanket I had on for 5 days and that made me sweaty and itchy - lots of ice and cool face washers. My physical recovery went well with no complications - sitting out bed/toiletting day 2, walking bent over with walker day 3, showering self day 4 (borrowing a shower stool helps at home) discharged day 7. Had nurses daily to check dressings and drains and started wearing a bra day 14 (non underwired) - before this I bought a few singlets with built in support. I'm a Physio and so appreciate the importance of mobility - whilst in hospital I walked as many laps of ward as would make me a little puffy every 2hrs. From discharge I walked around house and 2x visits to coffe shop per day!! Driving week 3/4 and stopped using walker and standing upright week 2. My scars I massage twice a day with bio oil once scabs came off - they all look great except a small 2cm area on abdomen. I feel amazing - better than any drug this operation .. no more worries about yearly breast scanning!!
Judy_Dennis
Member
12 years ago
Hi Sharona,

It has been interesting reading your story as I am facing the DIEP reconstruction in two weeks. Getting nervous about it as I have been so good of late, have a tissue expander in and am hoping my right side will eventually feel more natural and comfortable once surgery is done. I live in country Victoria on a farm and will be travelling to Box Hill Epworth for my surgery, I was there previous with my masectomy, after a very sudden and unexpected diagnosis just before Christmas 2012. Hope you are doing well now and I was wondering about what clothing was best and what I'd be able to wear home? Do hope this is all well and truly behind me soon.

Kind regards,

Judy
Mich_x
Member
12 years ago
Hey Karonjulie

Perhaps join the breast reconstruction group that Louise Turner is talking about in the post above yours hun as that is a great place to go for advice, help and to see photos of what is involved if that is what you are looking for.

You can search groups on the right hand side of the page and find breast reconstruction and ask to join.

Also just checking you have been given or have ordered your My Journey Kit through BCNA as it is a wonderful tool to help you through your journey you are embarking on unfortunately hun.

Thinking of you and wishing you well with the decisions you have to make. It is a tough one to do. I know from my personal experience if I had my chance to stick to my guns I would have had a bilateral/prophylactic mastectomy but I wasn't given that chance as my surgeon was completely against it but personally it is a regret for me.

Lots of love always, Mich xoxoxoxoxo
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

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Diary of a DIEP flap bilateral reconstruction

65 Replies

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