Last week, news stories about patient safety and medical devices, including breast implants made major headlines. Patients, many with open lawsuits, were sharing their horror stories. We were staying on top of the media coverage as many women in the Rethink network choose implant reconstruction and we’ve advocated for shorter wait times for breast reconstruction in Ontario. We also strive to ensure reconstruction is considered part of cancer treatment and our Care Guidelines for Young Women state that “You should be fully informed about breast reconstruction options, including the option to opt out altogether. You should be told about the possible risks, as well as the reality of the look and feel of reconstructed breasts.”
Normally it’s my job to work with our team to help the women we support process headlines but this time I was having to first process them myself. I had nipple sparing bilateral prophylactic mastectomies and implant reconstruction earlier this year.
A few days before the media frenzy, I got a direct message on my personal Facebook account from a woman named Terri, who was a patient advocate for Canadian Women with BIA-ALCL concerns. She said she’d been following Rethink for a while and wanted to reach out because she was hearing from a growing number of breast reconstruction patients who had not been warned their specific implants could cause a secondary cancer. She offered to do anything she could to support our organization.
Understanding The Risks
After first googling the acronym to make sure I knew exactly what she was talking about, which is breast implant-associated anaplastic large-cell lymphoma (BIA-ALCL), I googled her and landed on a YouTube video of her sharing her story in 2016. My heart went out to her as I sat, listened and watched this lovely woman tell her story for the first time. She’d had a breast enhancement. She hadn’t been told of the risk with the textured implants that she chose. She was one of those rare cases that got BIA-ALCL and she was fighting for her life.
I quickly replied saying I’d love to connect, and we set up a phone call.
My next step: figure out how to tell her that I’d undergone risk reducing bilateral mastectomies and reconstruction earlier this year and that I’d chosen the textured implants that made her gravely ill after my surgeon informed me of the risk associated with them; and, that I stuck to my decision.
Yes, I’m a leader in the breast cancer space and I chose the textured implants. Why? My goal was to look as natural as possible. Achieving the right projection on a tall body like mine is easier with the textured implants. I really did not want to look like some Hollywood B-list starlets (who shall not be named) who have super round implants against very boney chests so I was drawn to the teardrop shaped, anatomical implants. I also liked the idea of them staying in place. I have a friend who chose the smooth implants for her reconstruction and she woke up one morning with one boob under her armpit. That sounded super scary to me.
Plus, implants seemed like the status quo. I know so many women who have had implant reconstruction that I hadn’t even considered anything else. I wasn’t a candidate for autologous or “flap” reconstruction (DIEP), where they use fat from the stomach to create new breasts (not enough tummy fat), so implants were professionally recommended. I was shown all the different options for types of implants and the pros and cons of each were discussed.
To be completely honest, the stats around the risk for BIA-ALCL didn’t freak me out. I’d been living with a 30-55% risk of developing breast cancer so a less than 1% risk of another cancer seemed really low in comparison. Also, I knew that a risk with prophylactic mastectomy is that it can have a huge (negative) impact on quality of life, intimacy, body image, and self-confidence. Being able to preserve your own aesthetics can help with those issues so I felt the closer to natural shape was important. It’s why I chose nipple sparing, too.
I’m certainly not trying to promote the textured implants. It’s the personal choice I made at the time being informed of the risks.
Anyone facing cancer treatment is also facing myriad decisions, many of them involve deciding what risks you will or will not take with drugs or procedures. These decisions often need to be made under a time pressure as you try to quickly absorb all kind of new, quite scientific or clinical information and figure out your personal stance.
Like when I had to make a decision about Sentinal Node Biopsy (SNB) at the time of mastectomy surgery. My breast surgeon suggested the SNB even though all my previous breast biopsies were clear. She explained that they would biopsy my post-mastectomy tissue with a fine-tooth comb and just in case they found a rogue cancer cell hiding in that tissue, it would be helpful to know if there was any involvement with the lymph nodes. If I didn’t do the SNB at the time of my surgery and if they did find something, they’d have to go back and take a higher number of nodes, which could be more painful and increase risk for lymphedema. After getting on a few message boards and talking to other patients, I passed on the SNB. Here’s my email to my surgeon:
“Sorry to leave my decision til the 11th hour. Tough one.
I’m going to pass on the SNB and cross bridges IF something shows up, which we obviously hope does not!
Thank you for your patience. I will see you bright and early Wednesday morning.”
My post-mastectomy pathology came back clean so of course I was relieved I’d said no to the SNB. But when I look at that email 10 months later, it brings me back to my “before surgery” self. If I knew then what I know now, what would I do?
Then Vs. Now
I would rethink a lot of things but not necessarily because of the media reports surrounding breast implants that have exploded this past week. I was already rethinking a lot mostly because adjusting to my reconstructed breasts was taking longer than expected. I can’t say definitively if I would still undergo the prophylactic mastectomies or if I would choose the same implants or chose implants at all because it’s all still pretty new. I can say that I much preferred my own breasts. I’m still giving myself some time though.
While I haven’t had major side effects from the implants (just shivers from drafty windows and overall numbness), I feel like my slightly stiff-ish fakies are in the way (even with pretty low-key movement). Perhaps it’s because they’re placed under my chest muscles and that makes them go very slightly out to the side. Truthfully, it’s less about look now and more about how I feel living and moving with them. They don’t quite feel like me.
I’m also learning a lot after the fact. After attending a conference for high-risk women in the states this past fall, I learned that some US surgeons place the implants above the chest muscle, which I think I would have preferred. I also learned I would have been a candidate for autologous or “flap” reconstruction (DIEP). While the most common DIEP technique uses tissue transplanted from your belly (where I don’t have much fat), there are surgeons in the US that also use your thigh or buttocks, both places where I do have something extra to work with.
When I first heard about DIEP, it sounded pretty intense. The flaps are more complex and more difficult to perform. You’re under for longer and the recovery is longer, too. Unlike implants that are prone to breaking down over time and requiring additional surgeries, they’re pretty much good for life. And, while the thought of the DIEP procedure kind of freaked me out in the past (i.e. my belly becomes my boob, what?) in retrospect, I now think I would have appreciated boobs that were still made out of me—with warm, living tissue and a greater possibility of recovering sensation.
These choices are all personal ones. They are difficult to make. You can be told a lot of things up front but you don’t know how you’ll really feel until you’re there in it. And, your choices also depend on what is available in your area – that goes for both Canada and the US.
As for the headlines and stories around medical devices? It’s upsetting. It’s been horrible hearing about the challenges so many women have experienced not just with breast implants but with hip replacements and vaginal mesh. Through my work at Rethink, I’m involved in the cancer drug approval process. Rethink has an opportunity to bring the patient voice forward when new, innovative cancer medicines are being considered for funding. We interview patients who’ve been on the therapy and write a detailed submission about their experience, including quality of life. It’s a very rigorous process and a lot of work but it’s so important. So where is the patient voice input when it comes to approval of medical devices?
Where Do We Go From Here?
I think we put a lot of trust in our health-care teams, in government and in industry to make sure our treatments are safe. These reports have shone a light on some of the risk with medical devices, including breast implants, and show that there is a lot of room for improvement communication about risk, reporting, safety testing and regulation. We can’t change the past but we definitely need to do better now for the future.
I am happy to report that I had a wonderful call with Terri. I was so relieved to hear that her health has improved post ex-plant and treatment for her BIA-ALCL. She’s on a mission to ensure all women are making fully informed choices when it comes to implants. We are all about empowering women to make informed choices too.
For more info. on what you need to know about implants right now, click here.