After my sister's 2003-2004 cancer diagnosis and treatment, we didn't see any cancer curveballs for the next 11 years until my mother had a severe but successful battle with stage 3 bladder cancer. During those 11 years, my sister and her husband had two beautiful children and had to figure out what to do with the embryos they created before starting chemo to ensure they could have the family they wanted. Ultimately, they found researchers who could responsibly use their embryos and hopefully become part of breaking the pattern of breast cancer in our family.
In the meanwhile, I ultimately tested positive for the BRCA1 gene, and my medical team respected that I didn't want a prophylactic mastectomy as there are highly effective screening protocols for breast cancer through mammograms, ultrasounds, and MRIs. There are no such options for ovarian cancer, and the team strongly urged me to have my ovaries and fallopian tubes removed before I was 38. I did it in 2007 - just as I turned 38 after the birth of our third child.
Cancer is many different diseases; even breast cancer comes in many varieties. Cancer has radically different likely outcomes depending on when it is detected. USC's Dr. Peter Kuhn shared that "Early-stage, non-metastatic breast cancer has a 99% five-year survival rate. If diagnosed with stage 4 disease (breast cancer with distant metastasis), that number drops to 24%. The annual recurrence risk is about 10% for the first five years, then drops to about 5% for the next five years, then to about 3%, etc. Even 20 to 25 years after diagnosis, the risk is about 1.3%.".
Early screening - both self-exams and imaging - literally save lives. My sister's self-detection and advocacy saved her life. Radiological screenings have a lot of false positives, but they do identify 80% of breast cancers. Treatment was always necessary, and early detection made therapy highly effective.
I was lucky. My genetics and family history entitled me to no questions- I received annual mammograms, ultrasounds, and MRIs. I needed an order for the MRI, which entailed a quick phone call or email to my OB-GYN. She sent the order without question. If I thought I felt anything, an instant mammogram and ultrasound were assured. I joked that I was a Women's Health Center frequent flier. I would have the equivalent of Global Services if there were a loyalty program. Twice a year, I went for mammograms and ultrasounds or a bilateral MRI. I called it my bi-annual "I don't have cancer day" and looked forward to seeing Dr. Harriett.
There were nights I'd wake up if something felt off in my body or if I had a routine screening exam the next day, wondering - is this the day when cancer comes for me? I did not expect to be shocked or surprised by cancer's arrival, even though it was scary, sad, and disruptive. The burning problems and obstacles I face start with staying current with screening, determining when and how to tell life partners about my genetic time bomb, and what and when to share with our children if we elect to have children.
I'd worry that my cancer would be detected late and there would not be good options to extend my life. I feared that I would leave behind loved ones at a young age. I dream of cancer vaccines, genetic therapies to fix the mutation, better and earlier detection, and better and more tolerable treatment. I pray that my children will not face cancer as I did.
But most days, I didn't think much about cancer. I knew I had dealt with it before and would likely deal with it again. I try to see every day as a gift, but most days aren't extraordinary. I push the possibility out of my mind most of the time. The day when there's a screening test or a memorial of a diagnosis or death - those are the days that the cancer elephant in the room moves out of the corner and closer to the center of the room - consuming more mental cycles. When I think about cancer, I think about screening and treatment advances. I think about my plan for what I will do if cancer comes for me. I shared my plan with my husband when we started dating 27 years ago - so he knew what he was signing up for.
My experience began to change in late 2021 when my doctors saw a suspicious mass and did an MRI-guided biopsy. In the week between the biopsy and the pathology report, I found myself facing a cancer curveball pitch as I unwillingly stepped into the batter's box, waiting to see if life's pitcher released that ball with the telltale topspin of a curve. Tracey and I discussed my uncertainty and my thoughts about whether it was worth the time to consult with a plastic surgeon. Tracey thought it would be helpful, informative, and anxiety-reducing. She offered to join me for the appointment.
Having a second person with you at emotionally charged appointments like this is a good idea. At the center of the emotional release and surprises of a curveball pitch, patients (the batters) often don't hear details and may not remember them. In these situations, your second person can be the note-taker, question reminder, or calm-head. They also can be beneficial in conveying information to other people like extended family and friends. My sister, husband, sister-in-law, and best friend all played this role in the dugout of the game of my life - especially when I needed an approach for an unusual pitch.
As someone who likes control and information, I took Tracey's advice. I made an appointment with a plastic surgeon who performs the DIEP flap procedure, where surgeons harvest belly fat to form breasts and do micro-vascular surgery to connect blood supply to the new breasts—miraculous surgery with the fewest side effects and most natural results of all the reconstructions. I was concerned for the first time after three or four false alarms. I had a "bad feeling" about it. Dr. Harriet told me that, even for people with BRCA 1, 75% of the time, these suspicious areas are nothing. My sister suggested that we have a plan for after the appointment with Dr. Buntic that would be fun - and the plan was that she, Jessica, and I would have a girl's breakfast to enjoy some girl time. Girls for the girls, right?
My sister came with me to see Dr. Buntic. As he asked why I was seeing him, I mentioned the family, genetic history, and biopsy.
“I have the results - do you want to know?”
My sister was still parking the car. I was stunned and silent. That’s a very unusual state for me.
Dr. Buntic didn’t know me at all but read my facial expression and smiled.
“They’re good. Do you want to know?”
“Well, if you put it that way…”
“You don’t have cancer.”
I didn’t know that would be my last close call.
And our conversation moved to the possibility of prophylactic surgery. My sister joined us and sighed with relief at the good news. The three of us had a productive, low-stress discussion about the pros/cons of this procedure. Dr. Buntic referred me to a breast surgeon - Dr. Susan Lee Char - because she would do the mastectomies, and he would do the reconstruction. I figured that knowledge is power, so I scheduled an appointment with Dr. Lee Char. Dr. Buntic radiated competence and skill - I felt confident in his care. I conveyed that my intention, if I ever was diagnosed with breast cancer, was to have a bilateral mastectomy with a DIEP flap. He recommended I seriously consider the prophylactic procedure because I was strong and healthy - my recovery would be easier without having endured chemotherapy.
Breakfast was a celebration - another "Joelle doesn't have cancer day." We laughed. We ate. We toasted my continued good luck, defying my genetics.
When I consulted with Dr. Lee Char, she was terrific, like Dr. Harriet Borofsky and Dr. Buntic. Dr. Lee Char was delighted with the possibility of advising a patient who didn't have cancer and was considering eliminating her risk. We discussed two prospects for the surgery - Mastectomy + DIEP Flap immediately or Breast Reduction + 3 Months + Mastectomy and DIEP Flap. The first option was fewer surgeries. However, she was partial to the second option because I had D/DD breasts, and the possibility of skin necrosis for larger-breasted women with DIEP was about 25%. If we reduce me to C/D, the necrosis risk drops to 5%.
For the next few months, I wrestled with the decision of whether or not to do this surgery prophylactically. Ever since I learned I had the gene, I was adamantly against having this major surgery when I wasn't sick. I saw my mother with expanders in the hospital for days - she looked worn and scared. She seemed very uncomfortable. I saw my sister being hospitalized after her prophylactic bilateral mastectomies because she developed an infection that the doctors couldn't stop. Her breasts were angry and red. She was uncomfortable, in pain, and frustrated. Her prophylactic choice brought pain. She ultimately required a long course of IV antibiotics. Her new breasts had scar tissue from the surgery and infection. I knew that complications happen and the specter of cancer didn't disrupt my life. I was always sure that IF cancer came for me, I would have bilateral mastectomies because once the BRCA 1 genetic mutation is active, there's a high probability of multiple breast cancers. No, thank you.
But prophylactically, having this surgery felt alarmist and reactive - two things I very much am not. To do this surgery was challenging a core part of my identity - forged when I was the stable, calm person in my teenage home when my mother had chemotherapy. I pride myself on being level-headed and managing anxiety, so having surgery when I didn't have a disease felt illogical. Beyond potential complications, I'd lose sensation in my nipples and parts of my breasts. What would that mean to my sex life? What would it feel like to have breasts that you cannot feel? I was proud of "my rack," and the girls fed each of my children for a year. I was attached, and reconsidering a position I'd held for 20 years with any new information seemed frivolous and reactive.
I asked various people their opinions about the possible surgery. My physician friends and family were advocates, as well as my parents. My close friends were careful but clearly in favor of eliminating this risk. And my husband was supportive of whatever I chose to do with a preference for the surgery because he wanted me "around forever." For months, I thought about the decision and gathered opinions. I let everyone know that I didn't want to be asked about my decision - that I would let everyone know.
Ultimately, my physician sister-in-law, a multiple cancer survivor herself, made one of the best arguments - why not do it now when you are healthy and can control the timeline? And your body will find other ways to make up for lost sensation. She argued that my response to the surgery would be better and complications fewer if I did this when I was healthy. Chemo suppresses your immune system, so surgery after chemo brings additional risks.
My sister made another compelling argument by asking me why I would ever subject myself and my family to chemotherapy if there was a possibility of avoiding it. Given our shared chemotherapy memories and the impact chemo had had on our childhood and her wedding, her point was compelling.
All told, I'm not sure what changed. Perhaps it was "the breast cancer machine" where momentum gathers for surgery. Maybe it was the wasted emotional energy and physical pain from multiple suspicious biopsies. Perhaps after 20 years, I wanted to retire my frequent flier status at the Mills Women's Health Center. Maybe it was the appeal of being able to fit a significant surgery and recovery into my life when I wanted to do it - so I could enjoy my family vacations and schedule the required time off from work. I don't know when I decided, but in May 2022, I started talking with Dr. Lee Char and Dr. Buntic about scheduling options to understand the logistics and bring my always-active inner baseball manager onto the field. Once I decided to do the surgery, I was laser-focused on forcing it to comply with my schedule. With three attending surgeons and three fellows, plus anesthesia and lengthy surgery, I knew that advance scheduling was vital. Dr. Buntic wanted three months between the reduction and the extensive surgery. I wanted my surgery done after our winter holiday and early enough in the new year that I could count on being recovered enough to travel to watch my son play baseball during his first year at Hamilton College. Specifically to attend the mid-March Florida "spring baseball" in Orlando.
I scheduled the reduction for October 2022 so that I'd celebrate my parents' 55th wedding anniversary on our big family vacation in late December. Dr. Buntic did a great job and was incredibly responsive when I had questions or concerns post-operatively. I healed quickly - top 1% of healers, in his experience. Lucky genetics. I scheduled my mastectomy and DIEP with Drs. Buntic and Lee Char for January 10, 2023.
Prophylactic surgery is an intensely personal decision. Without any pressure and with extensive information from the doctors, as well as my mother's experience with the same procedure, I was able to assess my options and make a decision calmly. Having control over the scheduling so that my surgery would fit into our delightfully full lives was an attractive addition to the benefit of eliminating my cancer risk. I recommend that anyone with a family history or genetics and a possibility of prophylactic surgery get educated on their options and then make whatever choice is best for them. I suspect I'll always wonder about having delayed that decision, but not even BRCA-1 carriers with a strong family history have a crystal ball telling them what's coming.
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