What Not To Say To Me About Breast Reconstruction After A Double Mastectomy

The first time I was diagnosed with breast cancer was in 2011. I was fortunate to have access to excellent medical care in a state-of-the-art cancer center. My husband, adult kids and other family did all they could to help me. My friends and ward family offered amazing compassionate care.

While none of the support could completely remove the impact of cancer from me, I am constantly grateful for the huge difference it made. 

And, in the midst of all this privilege and support, some of the most difficult moments, the moments when someone said something so unaware, or ignorant, or insensitive, that it just throws me off balance and makes me try to catch my breath, these moments come back at times when all the hideous concern that cancer will never be completely gone from my life rears up and overshadows all parts of my life.

The treatment for that first cancer involved several surgeries, radiation, and oral chemo that caused severe side effects. 

Here are some things that were said that I ask you to put on a “What not to say” list.

• “At least you didn’t have to have a mastectomy.” – There is no at least with cancer.
• “Aren’t you going to have plastic surgery to make things even? Your breasts are lopsided now.” – To lead with more concern about image, and especially your own view of proper image, is to diminish my experience of fighting for my life.
• “My sister went through this and did fine. I don’t understand why you are making a big deal about needing a break.” – Each person has a different experience with all aspects of treatment, and with side effects. I knew people who had no side effects from oral chemo. The side effects I had included these – my finger joints froze, I couldn’t walk without intense neuropathy pain, the 20 minute hot flashes included intense nausea, head pain, and panic attacks. I should never need to compare or justify how I am dealing with the impact of treatment.
• “You are lucky you don’t have to go through this with young children at home.” – There is no “lucky” when it comes to me having cancer.
• “I hope you are not listening to the doctors. They just want to poison you. Just change your diet to this special one, and the cancer will be gone. It worked for this person who wrote this book.” – My cancer team saved my life. Keep your conspiracy theories to yourself.

I understand that these things were most likely said with good intentions. And, I want to help people who are willing, to be aware that even good intentions can come across as harmful at times.

The second time I was diagnosed with breast cancer was 2021, just over 10 years after the first diagnosis.

The weeks following the diagnosis were full of more tests, imaging, genetic consultations, many appointments with various surgeons and oncologists, conversations with women who had similar experiences, me trying to satisfy my voracious need to devour enough information and research to understand what recommended course of action to follow, me starting each day forcing myself to pull out of a fetal position and crawl out of bed. 

Great advancements had been made in autologous reconstruction surgery following mastectomy. Since a double mastectomy was recommended for me after this second diagnosis, this was an important option for me to consider. As much as my breasts were covered in lumpectomy and biopsy scars, and discolored and uneven from radiation and surgeries, they were a part of my identity and expression of my life. I was unwilling to consider replacing them with artificial or foreign material. The complications and risks of implants were not something I was willing to take on when I was needing to take such drastic steps to battle cancer. 

But autologous reconstruction surgery would involve transferring skin and fat tissue from my abdomen, along with the blood vessels that fed it, and grafting the vessels and tissue onto my chest to reconstruct breasts. When conditions are right, and skilled micro surgeons do the work, there is no need to compromise abdominal muscle or risk herniated abdominal wall. It is a very intensive, involved series of surgeries. But once recovery is complete, the results are healthier, safer, and will never need to be redone. 

It is still a difficult decision to face. Loved ones helped me wrestle with it, listening to me go over the science, the stories, the pros and cons, the prayers, the blessings, the fear, the anger, all the things. 

Finally, a plan of treatment was formed. 

Less than 2 months after diagnosis, I had a double mastectomy. It was decided that once pathology determined whether or not I would need radiation or chemo, then the reconstruction surgery could be scheduled. The pathology showed there was additional cancer in both breasts, but the margins and lymph nodes were clear. I focused on healing from the surgery so I could start on the reconstruction surgeries. Wanting to avoid complications, I had chosen not to have any expanders. I will not try to describe how it looks because it is too hard to write and practice calming breathing at the same time. I hoped the first of the reconstruction surgeries would be a few months after pathology cleared me for it. But I soon learned that hospitals were limiting this type of surgery because of increased covid numbers, staff shortages, then the high number of RSV cases. Each time I called to check with the surgery schedulers, I was told it was further out than before. This has gone on for 18 months. This week, I finally had good news. I have a pre-surgery appointment, and a probable surgery date in a few months. 

Through all this, and the amazing support and service, and love from so many, I have another list of what not to say. This list is more specific to mastectomy and breast reconstruction surgery.

• “Breasts are overrated. Losing them is no big deal. You don’t need them anyway.” – Seriously. Not. Helpful. A mastectomy is an amputation. Nerves are severed, and they bundle and continue firing long after the incisions heal. Not only is there the shock of the visual missing, there is a constant sensation of zingers with nerves trying to send messages where pathways have been severed. There is a constant reminder of what is missing, and never will be what it was. This long time of waiting for the next surgery, my body is off balance, and nothing is where it is supposed to be. I feel like I am walking on a boat at sea, always trying to adjust my balance. Along with that, I have had to learn to deal with people staring, not at my breasts, but at the absence of my breasts. 
• “It’s just a boob job. They do those all the time.” – This is not a boob job. This is a complicated series of surgeries that will carve up various parts of my body, moving skin and tissue and vessels , with micro-surgeons grafting the skin and vessels to reconstruct breasts, then use specialized equipment and staff to monitor blood flow constantly until the tissue heals and maintains. Multiple surgeries follow to achieve complete healing. Nothing about this process is “just a boob job”. Nothing about this is casually considered or hastily decided. Nothing about cancer is “just” anything. 
• “Hey, at least you will get a tummy tuck.” – Again, this is cancer related. This is not a makeover. This is not a tummy tuck. This involves micro-surgery and grafting blood vessels and skin and nerves. I won’t go into all the gruesome details of how this is not a tummy tuck. It is not in the same universe as a tummy tuck.
• “Don’t get vaccinated. That will increase your risk. They don’t have to test the safety of those.” – If you want to ignore medical science, and peer reviewed, rigorous testing, thereby supporting the conspiracy theories created by a few rich oligarchs who want to destroy this country and all democracy, keep it to yourself. And, while we are on the subject – if you don’t care enough about my life to wear a mask or get vaccinated, keep your distance. There are 3 things that I am warned will increase the likelihood that the surgery will fail – If I am or was a smoker (I am not and wasn’t), if I am diabetic (I am not), or if I have covid within months of the surgery, or long covid (trying not to). Don’t be a factor that could increase that risk for me. And stop supporting any legislator who thinks they should have more power to make decisions about my health than my doctors and I have. And, yes. Legislators are considering allowing insurance companies to no longer cover the safest and most effective surgeries related to cancer reconstruction, so this is also an activist issue as well as a personal one.

In hopes of a little bit of balance, here are a few things I recommend that you do say to someone who is dealing with cancer…

• I am so sorry.
• Cancer sucks. I am here if you need me.
• What can I do for you?
• I am listening.
• I offer you thoughts and prayers and blessings – and I am bringing dinner.
• What is hard for you right now? Is there any way I can help with that?

If you don’t know of anyone who is dealing with a cancer diagnosis, I ask that you look at this list and see how it could fit with someone who is going through a painful faith journey deconstruction and possible reconstruction, or a difficult paradigm shift. That is another type of amputation, a mourning for what life was and is no longer, and a yearning for reconstruction. 

Just something to consider.