I think that the simple fact is that what I do is hard to understand; if I’m honest, my colleague physicians and even other non-Plastic surgeons don’t really know what I do. And therein lies one of my fundamental problems when it comes to helping my patients.
So, here is the question: how do we help our patients to really “get” what we do when we propose a DIEP (or any other flap for that matter) after a mastectomy?
This is something that tends to occupy my thoughts a good deal, and as with most things, this is driven by my own experience. Some of the most harrowing moments in my career have had nothing to do with scary things in operating theatres; rather, these moments have all related to interactions with patients.
I’ll paint a picture for you: day 1 post-operatively, and a lady with a bilateral DIEP flap breast reconstruction is taken urgently back to theatre to attempt to salvage one flap which has developed complications. I am called in to help a colleague dealing with this difficult problem and we manage to resolve the issue. I am on call that night and I get a call at about 4am the next morning to tell me that again, the flap we thought we had salvaged has “gone off” – it appears that the artery has been blocked with a clot. This is almost a classic scenario when DIEP flaps fail. So at 4am, I am in the hospital, trying to explain to a patient what has happened and what this means.
If you consider this as a make-your-own adventure story, we are at a fork in the road: we can travel two paths from here.
The first path is one in which the patient has a true and complete understanding of what she has put herself in for pre-operatively. She has had time taken in the outpatient clinic to really explain how a free flap works, how it can go wrong and what this means for her. She has spoken with her surgeon, the nurse specialist and the breast surgeon at length, and she understands the inherent risk in what is proposed. Ideally she has even had a chance to meet or talk with another woman who has already undergone a similar procedure so that she can understand from the patient’s perspective what a DIEP flap involves. She comes into hospital calm (or as calm as humanly possible), because she knows that if all goes according to plan, she can expect a logical progression towards a reconstructed breast, and that even if there is a problem, her surgeon has things under control. There is always an answer. She is understandably upset when I tell her what is happening, but she is able to process the information and she trusts that we will do our best for her.
The second path involves a patient who has had a recent diagnosis of breast cancer. She is in a blur, her family don’t understand, and whilst her boss tries to be accommodating and to give her time off from work, this is a stress. She has gone from her GP to the radiologist to the breast surgeon and she now has a diagnosis of breast cancer and that means she needs a mastectomy. What does it all mean? She thinks “I’ll be disfigured! I won’t be a woman any more. What will my husband/partner do?” She gets sent off to the Plastic Surgeon so that she can be considered for a DIEP flap. She sees a member of the surgical team who rushes through a quick explanation (because there are always too many patients in the clinic), races through the details of this complex surgery (because sometimes it is easy to forget that we need to simplify the language we use), and she signs a form. A week later she has an operation that she doesn’t really understand which apparently means that she will have a breast recreated from her tummy (somehow!). She has a complication after the surgery which means she has to go back into surgery and she might lose the reconstructed breast!. She is tired and angry and upset and everything that can go wrong has gone wrong and all she can think is “why is this happening to me?”
Now, obviously I am being a little over the top and pushing these two scenarios to the extremes, but I am sure you can appreciate that I am trying to highlight incredibly significant issues. Whilst patients don’t always fall into such extreme groups, what I have described above is based on my own experience – most importantly, I have had to deal with women who have found themselves in the latter group, and those experiences weren’t something I would choose to repeat.
If a patient in that second group has no complications, that is great, but I assure you that even if she has the perfect operation and the DIEP flap is as close to a real breast as possible, she still won’t be happy. Her experience is totally dominated by her negative emotion. Whereas our lady from the first group, she could have a perfect outcome – and she will be incredibly relieved and happy – or she could have a complication, and whilst upset, she will still understand and she will know what is going to happen and that her surgical team have her best interests at heart. Obviously, I would much rather my patients fall into the former group.
Truly understanding a complex reconstructive procedure like a DIEP flap takes time. It takes a surgeon who is prepared to say the same thing more than once. It takes a patient who is calm and is able to appreciate what is being said. And when all is said and done, sometimes the only thing that helps a woman truly understand what is happening, is talking to another woman who has already been there.