A letter to all physicians from Barb Bordwell, member of the Facebook group “Flat & Fabulous”, regarding breast reconstruction (or lack thereof) and patient decision making.
I am a member of a Facebook Closed Group of the same name that has now grown to over 360 members. Some who chose no reconstruction from the beginning, some with failed reconstructions who have deconstructed, some with medical conditions that make reconstruction too risky or impossible, and some who are still at the front end of their journey and considering all of their options. Our members include the whole range from those who wear breast forms sometimes, always or never. And even some among our midst, who with our blessings and full support, will one day change their minds and go on to have reconstruction.
I sense that you and many of your surgical colleagues care about women who have had mastectomy or facing it whether from breast cancer or the threat of it. Yet as I hear the stories and see the photos repeated over and over, it becomes immediately apparent there is a huge disconnect between patient expectations and the reality of the actual results, whether from initial mastectomy or from deconstruction. At the very same time, there are a small percentage of stellar examples so we know it can be done. What we do not understand is why stellar is not the norm and what we too often see is not the exception.
For the vast majority of us who choose mastectomy without reconstruction, our expectation is smooth, flat, fairly symmetrical scars and a chest that is not unlike a prepubescent child with scars and no nipples. That is the typical patient expectation. We accepted that as the expected reality when we made the decision. Instead, what too many are alarmed to discover upon waking is that they have been left with large pendulous pockets of extra skin, dog ears, scars that wander all over the place, and looking at times as if a summer sausage was encased under the skin and then the adjacent area sucked down to the chest. They are then told they can “easily” have it fixed in a year or so. Excuse me?!? Even an episode of the Doctors that I saw online left the impression that a woman’s only options are frankly a mess or full on reconstruction. I am here to say that is a flat out lie, I know it, you know it and they know it.
Often among the many reasons we chose no reconstruction was to prevent the need for any further medically unnecessary surgeries or procedures to the highest degree possible. We are asking for a Breast Surgeon to give us their very best and something we can live with.
With Pinktober upon us, my reason for writing to you is to hopefully open a discussion between the Breast and Plastic Surgeons who care for us and the patients. I imagine some will say their patients do not typically come screaming in over the extra skin. Probably not. After all, the reason they chose no reconstruction was to avoid additional surgery. Even if they complain, what can you offer them but …more surgery. They then are faced with the very thing they did their utmost to avoid or suck it up and try to live with it. There is this too often heard remark from surgeons “…I left the extra skin in case you ever change your mind about reconstruction.” News flash to those in the medical field: your question should be “What if she does NOT change her mind?” and the answer to that question should NOT entail additional surgery to achieve.
The following is what I and some of my sisters in scars discuss that we would like to see:
1. No reconstruction and/or Flat & Fabulous are offered equally with all of the reconstruction options. For the most part, we are grown women who are perfectly capable of deciding what is best for ourselves and our families. We are the ones who have to get up every day and look in the mirror and therefore it should be up to us to make the fully informed decisions. It is time for shaming and bullying of patients by doctors and other professionals to stop.
2. That Flat & Fabulous will just be seen as normal. I live that reality. Sounds like the bra burning of the 1960’s but in fact most people we pass in daily life rarely notice and even more unlikely to care if they do notice. If we suddenly had big ones, people would notice, but small or flat – not so much.
3. That the surgical outcome expectations for those choosing no reconstruction will be ever better. There are a few among you who need to be brought up to acceptable standards or weeded out, perhaps a couple I would be tempted to send to prison. Strange as it might sound, I know a few veterinarians who are so accomplished, I wish they were working in human medicine.
4. To understand there is more to the discussion leading to decisions than just longevity. If one chooses no reconstruction, for many (not all) symmetry and balance are of utmost importance and therefore justify a contralateral prophylactic mastectomy. Not everything can be boiled down to simply what is medically necessary. In the same vein, a patient comparing her life with the choice of lumpectomy with radiation and hyper-surveillance, against her life with mastectomy, may choose mastectomy as the lesser thing in the long run. Granted her length of life may be equivalent but she may see her quality of life between the two as very different. I compared the two and chose the bilateral mx including the contralateral prophylactic. Have never once questioned whether I made the right decisions for me. Each one of us needs to search her heart and make the right decisions for her and statistics are just not the whole story.
5. To the Plastics, a gentle reminder that we are living breathing human beings and not just simply living canvases for your artwork. Why do so many of you refuse to do revisions to simply remove all the extra tissue left from the original surgery in order to give us what we expected on the first go round which was as smooth, flat and as aesthetically pleasing as possible? BEFORE you try to even dare to suggest reconstruction, can you truly say that it would be equal or less in time on the table, recovery, additional procedures and costs over her lifetime, as a simple one time revision? Until we conjure up Samantha to twitch her nose, we all know the answer to that question is a resounding NO.
This is an opportunity for you and your colleagues, whether breast or plastic, to bridge the disconnect between our expectations as patients and the typical surgical outcomes. We have large circles out there and sadly every day brings more women coming behind us. I think we can likely agree that a well-informed patient with realistic expectations is a plus and that is the main reason that I am reaching out to you and your colleagues. Pinktober seems the ideal time to bring it up and right now today are women, both in the Flat & Fab group and outside it, who are gathering all the information to make their own difficult decisions. I would love to hear from you all. If you would like photos, I am sure they could be provided. All the way from what we think is ideal, to acceptable, to completely unacceptable.
P.S. Did you notice that I did not once suggest what any patient “should” do? That is for them and only them to decide.