A Personal Account of the DIEP Reconstruction
When I was researching the different types of reconstruction, I wanted to know what it was like "in real life" to have each of the procedures. I was lucky enough to have met some lovely ladies online who were willing to share their stories with me. They've also agreed to share their story and photos here as well.
I'd like to introduce you to Di Winstone. Di was diagnosed in February 2016 and had
a 45mm lump, another which was 20 something and 1 node cancerous with calcification in the other breast. She had triple negative, grade 3 breast cancer. Di was given the option of surgery first and then chemotherapy but chose to have chemotherapy first, followed by surgery. During the chemotherapy, Di was monitored and had the joy of being told that her tumours had shrunk to being almost undetectable prior to surgery.
This is Di's story:
First of all I went to see one of the Plastic Surgery nurses who specialises in breast reconstruction. She went through all the various types of reconstruction available and showed my husband and I images of each, showing before and after pictures. Up until this point, I had been very chatty and happy, as it is comforting for any woman having a mastectomy to know they will have a new breast made, or breasts if having a bilateral mastectomy, which I was. Remaining flat was not an option I was willing to consider, for me personally. Seeing the images (some were quite brutal) made me actually realise what I was going to go through and yes, it was upsetting. This wasn't a cosmetic boob job but it was the best I was going to get and that was good enough! I would advise having your partner or a friend with you at this appointment as it can be quite emotional for some.
Due to the complexity of the surgery, few breast centres offer DIEP flap breast reconstruction. The operating time may be twice as long as with the muscle-sparing free TRAM, and the blood flow to the DIEP flap may not be as good as that of the muscle-sparing TRAM operation—something to seriously consider about prior to choosing this method.
I already had a good idea that the diep procedure was what I was going to choose (I knew my hospital offered this type of recon) but needed that reassurance going through the other options. Implants were not an option for me as I was going to require radiotherapy following surgery. I was told from the beginning that implants would be damaged by the radiation therefore they would not consider offering me this type of reconstruction. Some other procedures gave a smaller sized result. Diep felt right for me as it would give me good sized breasts and also a tummy tuck at the same time. I was a good candidate for this surgery as had enough of a tummy to make two new breasts, a tummy which would soon become flatter than I could ever imagine. I had a second planning appointment, this time with the Plastic Surgeon himself who confirmed I was able to have this procedure. I was told not to lose any weight before surgery as he just had enough to work with. Every cloud........
A CT scan is required for preoperative imaging of the blood vessels in the abdomen. This too will be part of the requirements of your surgeon to confirm you are eligible for this technique. They may be able to use a previous CT scan you had recently during your diagnostic tests or may require to perform another one with contrast.
As I was having a bilateral mastectomy and immediate diep reconstruction, I was pretty anxious about the length of time I would be in theatre. I was told it would take 10-12 hours but in reality I was in theatre for 14 hours. Obviously if you are only having one breast removed and reconstructed this will take less time, or perhaps your reconstruction will be delayed with you already having undergone your mastectomy surgery seperately. Your surgeon will advise how long the procedure is likely to take in your case.
I went in to hospital the day before surgery for the usual preoperative checks and also to be marked for surgery. Earlier in the day I was really anxious and tearful at times but in the evening I managed to calm down and focus on the fact that the operation would remove the cancer, which is of course the most important part. I slept okay and when I woke up on the day of surgery everything happened in a whirlwind then I was shortly being wheeled down to theatre, with my husband walking alongside. I bubbled and sobbed the whole way down. Before I knew it I was waking up in recovery.
If you are having a long procedure like mine, please be prepared for possible back and shoulder pain due to being on the operating table for such a long period of time. For me this was the worst pain in the hours that followed, soon after surgery. Your nurses will quickly establish pain relief to get this under control, if you are still struggling you will be seen by the acute pain team who can try different drugs until they get your pain under control. When in recovery and back in the ward, you will be under 30 minute observations by a nurse who is with you all night, this will continue your first day. They need to check all the usual obs but additionally they need to ensure the new breast(s) has good blood flow and that there are no signs of failure. Your surgeon will go through these risks with your prior to surgery and advise you could be back in theatre should any serious complications arise. The nurses observations will then decrease to hourly, 2 hourly and so on. It is vital that the breasts are kept warm, to keep the blood flow.
Day 1 will be a tough day for you, the simplest of tasks like having a bed bath will be quite painful as you attempt to move even a fraction. You will have drains in your chest, I had 4, your stomach will have been cut from hip to hip and your chest strangely is the least painful in the early days, well it was for me.The drains are there to drain the fluid/blood in the chest as healing starts. My 4 drains were, 1 on either side of my hip and 1 on the outside of each breast. The drains don't cause you pain they are just a pest as they get in the way. When buying nightwear or daywear for hosptial consider low cut hipster style bottoms as the drains catch on your pj trousers, leggings etc.
Day 2 you may manage to get out of bed, they will encourage you to do this and it is worth the effort, trust me. Even if it is just to visit the bathroom. You will not be able to stand up entirely straight, don't be alarmed if you are like an old woman in posture as you just cannot straighten for the first few weeks. Each day you manage something little that you couldn't do yesterday but the recovery is very slow. I was in hospital for 7 days then off home to begin my recovery alone.
Once you are on your feet, your nurses will give you drain bags which look like something you'd make in sewing at school. This means you can pop them over your shoulders when walking. They are keen to remove the drains as quickly as possible to avoid infection. Your consultant will decide when they can be removed (this is based on how much fluid/blood is still draining out).
Showering is very difficult and you will need the help of a nurse the first few days as your dressings need to be waterproofed and with drains to contend with, an extra pair of hands are needed.
To assist with managing pain, please keep on top of your painkillers, trying never to miss a dose. Wear a soft, supportive bra (not wired) at all times and take the strain off of your stomach with a pillow under your knees. As you are able to start walking, take baby steps and slowly increase the time you can be on your feet.
The first moment I stood infront of a mirror, alone, taking in my new body I was pleasantly surprised. My surgeons had done a remarkable job and my new breasts were full, natural and perky! This along with my incredibly flat stomach was such a relief to see. I cried with relief it was much better than I expected. Just be prepared for a pretty brutal looking scar to your tummy which will of course fade over time and of course, you no longer have nipples (unless you are eligible for nipple sparing surgery).
Sleeping is pretty uncomfortable at home as you no longer have the hospital bed to move into the exact position of comfort. You may be advised to sleep upright and you will have to wear a soft bra for many weeks, all day and all night to ensure you have full support as your new breast(s) settle. Your breast care team will advise you further. It is really important to look after yourself and your scars, please do not attempt to do anything more than your body will allow. Listen to your body. Your family will need to be on hand to help with laundry and housework for the first few weeks. If you live alone, perhaps arrange to stay with someone when you first come out of hospital. Let people look after you.
You will continue to visit your clinic weekly as healing continues and to have your dressings changed, until they are happy to dismiss you. I did have complications and required an additional couple of operations in the first 6 weeks. This can be due to skin or tissue dying and possibly even your scar not healing. Fat necrosis is very common after breast surgery and as you can see from the photo on the right, I had a patch of necrosis that meant I needed further surgery to remove it. You may feel lumps soon after as well, do not be alarmed, your plastics team will advise if these will break down or require to be removed surgically. You also may need your breast(s) to be drained if fluid builds up after your drains are removed.
At the time of writing this I am 9 weeks post surgery and recovering well. I hope to return to work in possibly another couple of weeks time. I will require some cosmetic improvements in a few months once things settle as I now have one breast smaller than the other due to my additional operations where they had to remove dead skin and tissue. I am not concerned about this nor is my surgeon who will again be able to restore the shape he had initially after my original surgery.
If I had to do this all again, I wouldn't change a thing. It hasn't been easy but it was the right surgery for me and worth the difficult days to see the end result.