At 41 years old, I had just married the man of my dreams. With two young kids in tow, I was moving us forward into the beginning of our best life. My boys would have a father figure. I would have a partner, my soulmate, my love. Literally as I was packing up my apartment to move, I received the call that no one ever expects: “The biopsy is back. I’m so sorry. It’s breast cancer.”
The next few weeks and months were a whirlwind. My instincts told me not to get swept away in the strong current created by the doctors: “must have more scans!”; “must schedule surgery!”; “go go go!” It is not easy to fight the waves, but your life is at stake and you and your family will be dealing with your choices forever.
During my treatment and recovery, I was an active participant in all the decisions, and none were made lightly. I selected my breast and plastic surgeons and oncologist carefully and trusted them completely from the beginning. And still, when I considered any treatment or procedure, I did a copious amount of research on my own and had long detailed conversations with them about the benefits and the risks of all the options. I asked lots of questions, including my signature one: “What would you do if this was happening to you?” I dared to challenge the doctors and the status quo. I took notes, recorded my appointments, and took someone with me to take even more notes. And, I read and read and read. Here’s a list of the questions I asked and my thoughts about what I learned.
What kind of surgery do I need?
Due to what was believed to be “multi-centric tumors” in my left breast, there was never a question of whether or not I would have my left breast removed: it had to go. I was left with only two options for surgery: a single or double mastectomy. I chose a double mastectomy.
How soon do I need surgery?
It turns out that in many cases, doctors are comfortable waiting a month or two — despite the urgency with which they try to get you scheduled. This time was so important to me because I was able to use it to learn about my choices, read stories of people who forwent standard medical care, and formulate my own opinion of what my plan would be.
Will I do breast reconstruction?
Breast reconstruction involves using implants or autologous tissue (tissue from a woman’s own body) to rebuild the shape of a breast. I never considered not reconstructing my breasts. As I move further away from the events, I can now see this as a viable option. However, I am still grateful that my body looks – relatively – whole.
Is there any information that implants are safe?
Well, no, there is not. There are cherry-picked short-term studies that the implant makers use to point to their “safety.” There is, however, much information that: 1) implants last 7 to 10 years on average, and will then need to be replaced, 2) silicone filled implants can discreetly rupture so regular MRIs are advised, 3) for years, many, many people have complained their implants made them sick, and many who had them removed regained their health.This information led me to decide to avoid implants and use my own tissue to reconstruct my breasts.
What is the point of chemotherapy and/or radiation once the breasts are removed?
The first answer is the required “fine print” from the breast surgeon: “While I will do my best to remove all breast tissue, microscopic amounts will likely remain and can be the site of a local recurrence.” Once pressed, the bigger answer is that they are a safety net. Both are used to “mop up” cancer cells that are potentially lingering.
There is tremendous pressure to follow the standard of care for your case when you are “so young” and have “such young children.” However, it was not anticipated that I would need chemotherapy or radiation. My breast surgeon and my plastic surgeon pressured me to “go straight to reconstruction” (one long surgery including mastectomy and reconstruction). Despite the breast surgeon’s assurances that I would not need either treatment, I decided to split the surgeries up in case I needed radiation, as having to radiate the reconstructed site is undesirable for aesthetic reasons. In order to get to have the appearance of breasts while waiting for my final treatment plan, I opted for temporary-saline filled tissue expanders.
The double mastectomy with expanders was scheduled for my son’s second birthday (2 months after diagnosis). I said, “No, that will not work for us.” I had surgery about a week later.
Why am I not healing?
A few weeks after surgery, I had the JP drains removed. (These are tubes inserted at the extraction site that create suction and remove the fluid your body makes when tissue is removed. This fluid is collected into a silicone bulb that is attached to the tube but is outside your body.) In a couple weeks, I noticed a boggy feeling in one breast. When I saw my plastic surgeon, she said it was a seroma (an accumulation of fluid). She said we would just watch it and hope it resorbs. It did not. About a month after the mastectomy, I had emergency surgery to put drains back in!
A month later, everything seemed to be straightforward: my drains were out, my incisions had healed and I was moving on to the next steps. As I undressed for an appointment with an oncologist, I noticed that my left breast was bright red and hot. These are the telltale signs of an infection called cellulitis. Emergency surgery was scheduled to clean the area and change the expander. A month later the same thing happened in the right breast with the same result. Time was marching forward. I was due to start chemotherapy, but the area where the last drain was removed wasn’t healing and serous fluid would periodically come out of it.
This went on for many weeks and it was eventually determined that I would need to start chemo even though I had this open site (that leaked fluid). A month into chemo, the site dehisced (opened along the incision) and another emergency surgery was scheduled. This time, the surgeon removed the right expander and did not replace it. In the absence of a foreign object, and despite two prior rounds of chemotherapy, I healed quickly and completely, and after a month off, I was able to finish the chemotherapy. My body made it very clear that it could not heal around plastic. If I had any doubt, this cemented my decision to rebuild breasts using my own tissue.
How can I help others?
The information that I accumulated through all these surgeries and decisions was hard won, and I wanted to share the bounties of my experience to help others. I wanted to sing my discoveries from the mountain top and make sure everyone knew they had choices in their care and specifically about autologous reconstruction. I found a local support group run by a prominent-local hospital specifically for young women with breast cancer. In the group, I found myself gently guiding others through the decision making, which can be so very overwhelming
After being an active member of the group for several years, I moved and could only participate with them in their Facebook group. I felt disconnected and wanted to connect again. My plastic surgeon and Our Bodies Ourselves contacted me with an opportunity to once again connect with this community. I was accepted to be a patient advocate on a panel convened by the American Society of Plastic Surgeons. This panel was tasked with creating guidelines for autologous breast reconstruction; basically, with creating a set of criteria that can be used to rate the surgeons. My co-panelists were almost entirely medical doctors and people with science doctorates. We spoke once and then met in person. I had a lot of catching up to do in order to understand the terms they used, but I was able to make my way through it.
By the end of the meeting I was once again connected. I am now leveraging my direct experience with the surgery and the knowledge I gained from people in my support group to help others. I remind them that there are so many variables to consider, and, that, most of all, information is king.