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

Sharona
Member
12 years ago
Sorry to have been slow to add to this diary. I feel as if I have been doing everything slowly for a while. Anyway, I was able to leave hospital after 8 nights as was originally estimated. I was really pleased to be going home. The 3+ hour journey was surprisingly ok and the seat belt was not a problem. I had so looked forward to my own bed but I had not lain flat since the surgery and could not do so, i was quite confronted and had to sort out a pillow pile. That is my next tip, work out how to be really comfortable at home but probably sleeping on your back and with head/chest up to some extent. I had a couple of very quiet days at home then a day trip back to Sydney to see my surgeon. He took off all the dressings, removed steri strips and stitches around my belly button. He said it all looked fine but from my point if view it was not pretty and there is a lot of semi numbness in my abdomen which feels weird. Unfortunately my new belly button is going to take a bit longer to heal (seemingly this happens sometimes) so I have had to see my GP/practice nurse most days for a dressing change. To my GPs astonishment I was allowed to drive 2 weeks after the op but I only did so because hubby had to go back to work (remember if you do not have medical approval to drive after surgery your insurance may not be valid). At 3 weeks driving is fine but at first doing anything was a challenge at home. Healing from week 2 to 3 has felt really slow, but there has been definite improvements, but it is slow! Physically I am still not up to a great deal and still taking panadol for pain/ discomfort. When I saw the surgeon he reminded me that I could get out of the big elastic abdominal support once I had some 'nanny knickers'. I wish I had bought some beforehand as I did not feel able to go near a shop for a couple more days. I have never worn 'support wear' before and they seems to vary a lot. Buy somethiing before surgery. My Target purchase is ok but more comfortable is some Ambra shapewear I bought online. I can now shower with relative ease and have started massaging some vitamin oil along my scar lines. My new mounds still have bruising on them from the surgery. I was told by the surgeon to work on arm mobility and had 10 days to be able to get both arms straight up above my head. On one side that is fine but on the other I am still very tight and cannot do this without discomfort. So overall I am progressing but at that really frustrating stage of recuperation. The surgeon says it will take 6 weeks for my haemaglobin to recover and my GP suggested iron tablets. I will be seeing him in another week and know that I will be feeling much better by then. Thanks for the thankyous for doing this diary, it is my pleasure, it is a warts and all description and I recognize that I need to give it more time. My body still feels rather strange and I am looking forward to losing all the redness of tape allergy and scars and enjoying my new look.

I just remembered another of the warts in this recovery. The back of my head felt bruised after surgery which I presume is due to the many hours on the table but at about 2 1/2 weeks I started losing hair from that part of my head, it brought back really bad memories or losing hair with chemo but was confined to one part of my head and a few days later it has settled. At least it did not become a bald patch, just a bit less hair.
Sharona
Member
12 years ago
Sorry to have been slow to add to this diary. I feel as if I have been doing everything slowly for a while. Anyway, I was able to leave hospital after 8 nights as was originally estimated. I was really pleased to be going home. The 3+ hour journey was surprisingly ok and the seat belt was not a problem. I had so looked forward to my own bed but I had not lain flat since the surgery and could not do so, i was quite confronted and had to sort out a pillow pile. That is my next tip, work out how to be really comfortable at home but probably sleeping on your back and with head/chest up to some extent. I had a couple of very quiet days at home then a day trip back to Sydney to see my surgeon. He took off all the dressings, removed steri strips and stitches around my belly button. He said it all looked fine but from my point if view it was not pretty and there is a lot of semi numbness in my abdomen which feels weird. Unfortunately my new belly button is going to take a bit longer to heal (seemingly this happens sometimes) so I have had to see my GP/practice nurse most days for a dressing change. To my GPs astonishment I was allowed to drive 2 weeks after the op but I only did so because hubby had to go back to work (remember if you do not have medical approval to drive after surgery your insurance may not be valid). At 3 weeks driving is fine but at first doing anything was a challenge at home. Healing from week 2 to 3 has felt really slow, but there has been definite improvements, but it is slow! Physically I am still not up to a great deal and still taking panadol for pain/ discomfort. When I saw the surgeon he reminded me that I could get out of the big elastic abdominal support once I had some 'nanny knickers'. I wish I had bought some beforehand as I did not feel able to go near a shop for a couple more days. I have never worn 'support wear' before and they seems to vary a lot. Buy somethiing before surgery. My Target purchase is ok but more comfortable is some Ambra shapewear I bought online. I can now shower with relative ease and have started massaging some vitamin oil along my scar lines. My new mounds still have bruising on them from the surgery. I was told by the surgeon to work on arm mobility and had 10 days to be able to get both arms straight up above my head. On one side that is fine but on the other I am still very tight and cannot do this without discomfort. So overall I am progressing but at that really frustrating stage of recuperation. The surgeon says it will take 6 weeks for my haemaglobin to recover and my GP suggested iron tablets. I will be seeing him in another week and know that I will be feeling much better by then. Thanks for the thankyous for doing this diary, it is my pleasure, it is a warts and all description and I recognize that I need to give it more time. My body still feels rather strange and I am looking forward to losing all the redness of tape allergy and scars and enjoying my new look.

I just remembered another of the warts in this recovery. The back of my head felt bruised after surgery which I presume is due to the many hours on the table but at about 2 1/2 weeks I started losing hair from that part of my head, it brought back really bad memories or losing hair with chemo but was confined to one part of my head and a few days later it has settled. At least it did not become a bald patch, just a bit less hair.
Sharona
Member
12 years ago
I really cannot comment on what is best, it is a decision that must be considered with doctors consultation, each of us is different and have different bodies so one technique vs another has to be tailored to each individual.
mjp77
Member
12 years ago
Can you tell me what is good silicone implant or DIEP Flap....

And do you need more surgery after that?

Thank you

MJ
mjp77
Member
12 years ago
Can you tell me what is good silicone implant or DIEP Flap....

And do you need more surgery after that?

Thank you

MJ
Cathy_D
Member
12 years ago
Hi Sharona, I have too agree with Janey, thanks so much for this blog it is so good to get imformation from someone who is going through it. Much better than reading a brouchere or getting it from a Doctor or nurse. I can relate so much better to your blog. Good luck with your recovery. I also feel I can't wait to look down and see two breasts again even though I am a little nervous about being so long on the table. Your blog does ease all these feel a bit, so thanks again. Thinking of you in the coming days.
Cathy_D
Member
12 years ago
Hi Sharona, I have too agree with Janey, thanks so much for this blog it is so good to get imformation from someone who is going through it. Much better than reading a brouchere or getting it from a Doctor or nurse. I can relate so much better to your blog. Good luck with your recovery. I also feel I can't wait to look down and see two breasts again even though I am a little nervous about being so long on the table. Your blog does ease all these feel a bit, so thanks again. Thinking of you in the coming days.
Janey235
Member
12 years ago
Sharona this information is really invaluable. You have given me great tips for my turn. Thank you soooo much for sharing your experience. I hope that you continue to improve rapidly and everything goes well for you. You really are a darling. Sending hugs and kisses your way, love Jane xxxx
Sharona
Member
12 years ago
Well it is now a week since my surgery and Day 8 with night 8 to come. I am improving slowly, getting in and out of bed is easier as my stomach muscles have woken up again. Getting sick of hospital and want to go home which is probably a good sign. My surgeon came in to see me early this morning but everything is progressing as expected and although the final drains output is reducing it is not enough to allow it to be taken out. Hopefully tomorrow. What to wear - well for the first 3 or 4 days I was in a hospital gown with shoulder ties. I had to keep my chest warm so a small towel was over the flaps as well. After Thursday (day 4) I have been wearing undies and front opening pajama tops plus a light dressing gown. I had brought pajama bottoms but found them too difficult to deal with until today. The best has been a loose fitting cotton nightie. The ideal would be one with a few buttons at the front ( I found that one of mine just had pretend buttons that did not open so I had to lift the whole thing up for flap checks). It has not bothered me but be prepared for an almost complete loss of modesty, and nurse shift handover time there could be 5 people in the room and one will check the new breasts. Somehing else that has been useful for me is a drain bag to go over my shoulder. I just brought the one I had been given when I had my first surgery. I thought I would have read my novel by now but although I feel pretty clear headed I am tired and there is no such thing as a full night of sleep with obs going on or tablets being dispensed. I would love to be able to lie on my side as I usually do but I do not think that will happen for a while. I sleep with elevated head and feet and suffer a bit from an achy back at times which the physio says is inevitable. Pain has been a bit less today and I can stand a bit straighter so I am healing
Sharona
Member
12 years ago
Well it is now a week since my surgery and Day 8 with night 8 to come. I am improving slowly, getting in and out of bed is easier as my stomach muscles have woken up again. Getting sick of hospital and want to go home which is probably a good sign. My surgeon came in to see me early this morning but everything is progressing as expected and although the final drains output is reducing it is not enough to allow it to be taken out. Hopefully tomorrow. What to wear - well for the first 3 or 4 days I was in a hospital gown with shoulder ties. I had to keep my chest warm so a small towel was over the flaps as well. After Thursday (day 4) I have been wearing undies and front opening pajama tops plus a light dressing gown. I had brought pajama bottoms but found them too difficult to deal with until today. The best has been a loose fitting cotton nightie. The ideal would be one with a few buttons at the front ( I found that one of mine just had pretend buttons that did not open so I had to lift the whole thing up for flap checks). It has not bothered me but be prepared for an almost complete loss of modesty, and nurse shift handover time there could be 5 people in the room and one will check the new breasts. Somehing else that has been useful for me is a drain bag to go over my shoulder. I just brought the one I had been given when I had my first surgery. I thought I would have read my novel by now but although I feel pretty clear headed I am tired and there is no such thing as a full night of sleep with obs going on or tablets being dispensed. I would love to be able to lie on my side as I usually do but I do not think that will happen for a while. I sleep with elevated head and feet and suffer a bit from an achy back at times which the physio says is inevitable. Pain has been a bit less today and I can stand a bit straighter so I am healing