My Brca2+ Journey - Part 3
Beginning my care at the MidWest Breast Clinic in Limerick felt like I was finally making a huge step on my screening journey. Once you make your way through the maze of a hospital to the 4th floor of the Leben Building, you’re greeted to a waiting room with lavender walls with pink and purple blown glass light fixtures and you take comfort in being away from the otherwise chaotic parts of the hospital.
My initial appointment at the breast clinic was to meet my new breast consultant (and surgeon) and her nurses: my breast care team. It was also when I informed my team that I wished to be added to the waiting list for my prophylactic surgery. Having just spent over a year in limbo, I anticipated an equally long waiting period for my surgery and therefore wanted to be added to the list as early as possible. This was entirely my own choice, but was a result of the then three cancer scares I had faced in the years leading up to this point.
As a young woman who hasn’t started a family yet, I found myself placed in a position not regularly talked about even within the BRCA communities. Commonly, people with BRCA mutations find out later in life - after having kids or even after menopause. Because of my age, I’ve had to make decisions not just for me, but for my potential family, and none of those decisions have been made lightly. In short, I’ve had to consider how I want to look, how I want to conceive my future children, and how I want to feed them.
When faced with the decision for prophylactic surgery options, I was given many, but these were the ones I considered the most:
Flat/No Reconstruction : Removal of the breast tissue and no reconstruction resulting in a flat chest.
Pros: quick recovery time and no follow-up surgeries or maintenance.
Cons: no breasts and possible psychological effects of that.
DIEP Flap Reconstruction: Removal of breast tissue and immediate reconstruction done using muscle and fat from belly or thighs.
Pros: most natural looking reconstruction as it uses body’s own fat, no upkeep or additional surgeries
Cons: lengthy recovery due to essentially two surgeries and more extensive scarring (belly and chest), advised to seek this reconstruction only after having children in case of possible complications should I require a caesarean section.
Implant Reconstruction: Removal of breast tissue and immediate reconstruction done using silicone implants.
Pros: quicker recovery time, can have this reconstruction at anytime as it does not affect any other part of body
Cons: will require maintenance (replacement surgery every approximately 10 years)
Nipples - To Keep or Not to Keep?
Pros: More familiar looking breasts
Cons: Slight increase for potential cancer, you just don’t know if they’ll be as responsive as before, how they’ll look, etc.
In all honesty, the anxiety of waiting to do this surgery after having kids was too great for me - I didn’t want to bring a child or children into the world with the possibility of getting cancer and not being able to raise them. With this decision came an obvious consequence: I won’t be breastfeeding my future children. This decision also affected my options for reconstruction as a DIEP flap had an increased risk for future complications should I need a caesarean section to give birth. In other words, I’ve had to seriously consider and to a certain extent, plan the next decade of my healthcare all at once. After much consideration, listening to my doctors and my body, I made the plan for a non-nipple sparing double mastectomy with direct-to-implant (put over the muscle) reconstruction. I rang my doctors to tell them of my plan and they proceeded to make the arrangements to begin the process.
Now this was in July of 2022 and as I had a lengthy weight time before, I had anticipated a date sometime in 2023 to be given to me. Upon meeting with my two breast surgeons, Drs. Ann Merrigan and Chwanrow Baban, I was told I could have my surgery as early as November of that year! This was such a relief for me and I went home feeling elated and the lightest I’ve felt in years.
Over the next few months, I was in and out of the hospital nearly every week for appointments to make sure everything was still on track. After a delay with my final routine MRI, I was informed that my surgeons hadn’t in fact scheduled me for November as they originally said and were unsure of when the surgery could happen. As you can imagine, knowing the recovery time of such a surgery and after gearing myself up for it for literally months, I was heartbroken by this news. I literally cried for days. But I then remembered that even in these times, you still have avenues to pursue. Sometimes, when you’re given answers you don’t like, you just need to keep asking until you get the right one. I proceeded to ring the breast clinic everyday for a week to request a surgery date be given to me and guess what - it worked! I was booked in for December 5th, 2022.
While the relief of having a surgery date in place was so powerful, I still felt the weight of the previous months and years on my back. It wasn’t over yet, but I was beginning to see the light at the end of the tunnel.
