Beckie’s Story: A Double Mastectomy and Breast Reconstruction At 26
There are a lot of decisions we make in our twenties that will bear some impact on the trajectory of our lives. Beckie Calder-Flynn was only 23 years old when she tested positive for the BRCA2 gene mutation and was faced with one of the toughest decisions of her life. Beckie’s surgeon, Dr. Alexander Brown, an Oncoplastic Breast and Specialist General Surgeon at Wellington Regional Hospital, told me, “Of the 1 in 10 Kiwi women who will develop breast cancer in their lifetime (10-12%), about 1 in 400 of those women (0.25%) will have the BRCA gene mutation. Those with the mutation have a 50-80% chance of developing breast cancer, and a 40% chance of developing ovarian cancer.”
At 26 years old, Beckie is now at home in Queenstown (she usually lives in Wellington where she works as an environmental scientist) where she is recovering from a double mastectomy and breast reconstruction. I’m so humbled that she wanted to share her story here, with me, and with you.
“Before sharing my story, I just want acknowledge that the decision to have a preventative mastectomy is incredibly personal, circumstantial, only one of multiple options, and a privileged position to be in. There are many women who do not have the option to do this preventatively due to already having cancer, not being able to be tested, not being able to afford treatment, or not knowing it was an option, and I’m extremely grateful to have been in the situation where I had a choice, when so many others haven’t.
My decision to have an elective double mastectomy and reconstruction was the right choice for me, but it may not be the right decision for another woman considering it. While I had amazing doctors, relatives and friends, I didn’t have another woman that had gone through what I had (specifically with the BRCA2 gene mutation and being so young), therefore my hope is that by sharing my experience I can help others considering the same treatment, in the TTC community and beyond.”
When did you first learn that the BRCA 2 gene mutation was in your family history?
Being positive for BRCA1 or 2 means that you have a gene mutation that affects your cells ability to stop dividing (cells that lose this ability continue to grow, causing tumors and cancer). For those familiar with the story, this is the same gene mutation and procedure that Angelina Jolie went through a few years ago. Not all cases of breast cancer are linked to gene mutations, and family patterns do not necessarily mean that either of the BRCA 1 or 2 gene mutations are present, but family history (including the age at which people were diagnosed with cancer) is key information that doctors require before you are able to undergo genetic testing.
We lost my grandmother on my dad’s side in 1992 when she was 51 from breast cancer after being diagnosed at 49. My great aunt also passed away at a young age, and while she was never confirmed to have breast cancer there was a suspicion that was the case. My dad’s cousin was then diagnosed with breast cancer at 38, which was when we started to consider if there was an underlying genetic predisposition and began making enquiries about testing.
When did you decide to undergo testing, and what was the testing process like?
My family had to go through quite a process in order to have genetic testing for BRCA2. My aunt, who deserves all the credit for enabling me to be tested, had to trace through our family tree and “prove” that there was considerable evidence of a potential genetic predisposition to breast cancer that justified being tested. For anyone considering getting tested, your GP should be able to give you a referral to genetic counsellors, and mapping out known and possible cases of breast cancer in your family will help with determining if testing is an option.
A BRCA2 positive person has a 50% chance of passing on their gene to any of their children. My dad and his four siblings were all tested for the gene, and thankfully my dad was the only one who tested positive. This gave us the grounds for my brother and I to be tested in 2017, and that’s when we discovered that I carried the gene – my brother didn’t.
How did you feel when you got the results back confirming that you carried the gene? What types of things did it make you consider for your future?
I was disappointed and upset, but from the beginning I’ve always felt that knowing I have the gene, and being able to do something about it, is a gift that many don’t have. This positivity ended up serving me well when I finally made the decision to have surgery. After finding out I was positive, I went through genetic counselling and had conversations about reproduction, as the BRCA2 gene is also linked to ovarian cancer (but with different risks). We discussed egg freezing, embryo freezing (which means you can select embryos that do not have the BRCA2 gene and so do not pass it on to your children), and then preventative surgeries. This isn’t something I’m thinking about now, but many women also choose to have a preventative hysterectomy once they have finished having children to reduce their risk, as screening for ovarian cancer is much more difficult than breast cancer.
I also joined the breast cancer screening clinic at Wellington Hospital, where I went for yearly scans. Young women are not encouraged to get regular mammograms due to the exposure to radiation, so over the past few years I’ve been having MRIs as well as physical examinations. My understanding is that this protocol is available to anyone who tests positive for as long as they need it, and this type of surveillance can catch cancer very early on so can be an effective way to minimise cancer risk.
Having a genetic predisposition to an illness is a very abstract feeling; it’s an invisible risk that doesn’t affect your daily life until it manifests itself, which results in a kind of anxiety of waiting to see what happens. That anxiety was what made me begin to consider my options.
Talk me through your decision to undergo a double mastectomy and breast reconstruction.
When I found out I had the gene three years ago I decided that I would have a preventative mastectomy at some stage in my life. I made peace with this decision at the time, and didn’t worry about it for a couple of years while continuing to undergo screening and surveillance.
Over this past year I started thinking more about the timing of my mastectomy. I wanted to give myself the best possible chance of success in both the surgery and in my recovery, and I knew that being young, fit and healthy would certainly help with all of those things. I’m currently in a job with unlimited sick leave, I have health insurance, and my parents were able to look after me post-surgery. Pre-COVID, I was planning to move overseas at the end of 2020, and the prospect of more expensive and less accessible medical care and surveillance was extremely daunting for me. In the New Zealand system, I was able to get checked anytime I felt a lump and I had access to yearly scans – all without cost – but that wouldn’t necessarily be the case overseas.
A big part of my decision was weighing up the outcomes of each choice:
- I get a mastectomy early, knowing that I might never get breast cancer and will have to have more implant replacement surgeries in the future, but I won’t live with the risk or anxiety of the gene mutation manifesting in cancer.
- I put off a mastectomy for 5-10 years, continue with surveillance, but forgo some of the privileges I currently have like unlimited sick leave and my youth advantage, while also having the risk of getting breast cancer in the interim.
- I don’t have the mastectomy, I keep my breasts and hope that my genetic predisposition doesn’t materialise. I keep up with the surveillance, but I have the high risk, and associated anxiety, of getting cancer for the rest of my life.
With breast cancer affecting women in my family at a young age, I had a greater risk of getting it young. I also considered what a mastectomy would be like if I had already been diagnosed with cancer; in the case of my mastectomy, I only have one 12 cm scar under each breast, had breast reconstruction at the same time, I didn’t lose my lymph nodes or my nipples, and I didn’t have to undergo chemotherapy or radiation. For many women with breast cancer, reconstruction is not possible at the time of a mastectomy and for some women it’s not possible at all. Some women lose their nipples due to a loss of blood circulation or infection, some women have incisions that go up the breast as opposed to just under it, and often the lymph nodes down under your armpit are also removed (which can be extremely painful). For me, the surgical outcomes of a preventative mastectomy were better than waiting to have a mastectomy if I ever developed cancer, and combined with the benefits of being younger and more resilient to major surgeries I felt I was giving myself the best chance of a smooth recovery.
It’s worth noting that a double mastectomy does not reduce your risk of getting breast cancer to zero, as it is not possible to fully remove all the tissue and cells surrounding your breast, however it takes my risk to below 10%, which is lower than what a normal woman without any family history or genetic predisposition has. Of course, having a mastectomy is not without sacrifice or risk: There were the general risks of major surgery and possible complications and infections, as well as mastectomy-specific risks like losing my nipples due to reduced blood flow or my body not accepting the implants. Because I no longer I have mammary glands, I won’t ever be able to breastfeed, something I would have loved to do if I ever had children. However, having breasts doesn’t automatically mean you will be able to breastfeed anyway. Having a mastectomy younger also means that over your lifespan you will likely have to have more surgeries to replace the implants.
I also had to see a psychologist before the surgeon would formally agree to operate, something I would recommend to anyone considering any elective surgery that will change your lifestyle or appearance, to make sure I had considered all my options and how this decision would impact my life. My doctors warned that changes to my breasts, both visually and physically, can affect women’s sexuality and body image. While I haven’t yet experienced any changes, I find comfort in know that if I do, I have professional help available to me.
Talk me through the procedure itself, how did you feel on the day of the surgery and how did you feel when you woke up afterwards?
On the day of the surgery, I felt at peace with what was going to happen. Because of COVID-19, I wasn’t allowed any family with me at the hospital until after the surgery was over, and so (much to my dad’s heartbreak) I was dropped off at the hospital alone. I relied heavily on adrenaline and momentum before, during and after the surgery, as well as my positivity. The benefits of a positive mindset are well-documented, and my medical team were amazed at how happy and optimistic I was – in their experience, it truly does make a difference to patients and their recovery.
My specific procedure was a nipple-sparing bilateral mastectomy with reconstruction, meaning all my tissue from both breasts was removed while keeping my nipples, and implants were put in during the same surgery. The surgery involved cutting a 12cm incision under each of my breasts, removing all of my mammary glands and tissue (which was challenging for my surgeon as I have small breasts, so there isn’t much space between the breast tissue and my skin), attaching a mesh shelf to my chest wall for the implants to sit in, and then inserting the implants. I had two layers of stitches underneath my skin, and had two drains inserted above my ribs that snaked up and around my breasts to remove excess blood which had to be emptied daily for a week (featured in the photos below).
When I woke up, I felt like my chest had been whacked with a baseball bat from all angles, my scars were burning, and my elbows were aching badly after being strapped down at a funny angle. Despite being in a state of delirium, I vividly remember all I cared about was wanting to know if the surgeon was pleased with how the surgery went and sinking back into the bed with happiness when he said it went really well.
You are now four weeks post-surgery. How do you feel both mentally and physically?
I feel great. My pain is no longer constant and instead I just have moments of sudden pain and aching nipples – a lot of my nerves were cut in the surgery and as they regrow they hurt. Our breasts have nerves surrounding them as well as going through them and I’ve lost the nerves running through mine, meaning I now have very little feeling in my breasts and nipples. As the nerves heal this should come back to some extent, but right now I can’t feel people touching them. Having implants in place of breast tissue (as opposed to as well as breast tissue, which is the case for traditional breast augmentations) means that my chest feels different; my skin and muscles feel tighter and I’ve lost mobility and strength in my shoulders due to not being able to lift my arms. I’ve been really tired, but keep reminding myself that there is so much healing going on that I can’t see, and I’ve been wearing a post-surgery bra 24/7 unless showering, which I’ll keep wearing until eight weeks post-surgery.
Cosmetically, my breasts look the same but different. They are about a third of a cup bigger and they sit up higher and don’t move in the same way, but if you didn’t know, you wouldn’t know, certainly not when I’m wearing clothes. When I lie down they don’t fall in the same way, and I’ve found it’s not as easy to make them fit into certain bras or tops. When I bend over, you can sometimes see the ripples in the silicon implants as they move under my skin, and you can also see the tacks holding my mesh in place (see picture) but they will dissolve over time. I loved my breasts as they were, and was really upset and worried at the thought of them changing, but to my surgeon’s credit, they look amazing, and it will just require some adjusting. A friend likened this adjustment period to what happens after a woman gives birth – our bodies change so much and sometimes we are saddened by what we see, but we know that it was worth it for the outcome and that’s where we find comfort.
Mentally, I feel positive, relieved, and humbled by the love and support so many people have shown me. My recovery has made me think a lot about the experiences of people who have invisible illnesses or disabilities. When I wear clothes, you can’t tell I’ve had surgery or that I’m unwell, but underneath I’ve been in constant pain, actively avoiding bumping into people in public, have had to be far more cautious when driving, have afternoons when I can’t get out of bed, and have needed to ask for so much help. I never felt brave making this decision, especially considering the bravery of those who have actually experienced cancer, but hearing how many people have been inspired by my decision to face my predisposition head-on and not leave things to chance has made me feel as brave as people have said I am. In part, I felt I owed it to the loved ones I’ve lost who never had a choice.
If you are concerned about your breast health, Dr Brown recommends booking an appointment with your GP to discuss your risk and arrange further assessment.