Wickman (left) with her mum. They both tested positive for the BRCA1 mutation, and at 25, Wickman underwent a preventative mastectomy. — MAGGIE WICKMAN/TNS
I’ve never had cancer. But it has still shaped my entire life.
I’m a BRCA1 “previvor”.
You may never have heard that term before; it was coined by an organisation called FORCE over 25 years ago.
I carry a gene mutation that increases my risk for breast and ovarian cancer and other kinds of cancer, and that’s why, even though I’m in my late 20s, I’ve already undergone high-risk surveillance and a preventative mastectomy (removal of the breast).
I’ve also had to spend a lot of time thinking about how to preserve my fertility.
All this may sound like a lot for someone my age, but I don’t regret the path I’ve taken at all.
Thankfully, the journey of someone close to me helped show me the way.
My mum learned that she was BRCA positive when I was three years old.
By taking preventative steps – including a prophylactic mastectomy – she was able to prevent getting cancer.
Her experience was a turning point for my whole family.
By the time I was 20, I knew I needed to get tested.
I was nervous, but what you hear all the time – that knowledge is power – is true.
I needed to know.
And I wasn’t surprised to learn that I did have the mutation; in a way, I’d been expecting it my whole life.
Initial monitoring
Though I’d witnessed everything my mum went through, my experience was very different from hers.
When she found out she was BRCA positive, she was well into adulthood.
She was married and already had children.
I, on the other hand, was just starting my life.
I was young, single and not planning to have kids anytime soon.
But our goal was the same: taking steps to avoid getting cancer.
My immediate reaction was that I wanted a mastectomy as soon as possible.
But my breast surgeon counseled me to process the information before making a decision I might regret.
I am so grateful for her guidance because looking back, I definitely wasn’t ready.
And that’s OK!
The choice is extremely personal. There is no right or wrong answer.
I opted to focus on monitoring initially.
My doctor recommended a mammogram, and it was great; there were no problems, and I was told “see you in a year”.
But the next year, just a few days before my 24th birthday, they found a lump.
Though an MRI (magnetic resonance imaging) and biopsy showed it was benign, given my family history, the doctors wanted me to have a preventative mastectomy.
But I had just started graduate school and didn’t have eight weeks to recover from surgery.
So, I upped the monitoring, alternating mammograms and MRIs every six months.
Not only was this nerve-wracking; it also resulted in multiple, painful biopsies.
I hustled so that I could graduate early and get my mastectomy as soon as I could.
I was ready to put this all behind me and start my life.
Considering fertility
On Nov 30, 2022, I finally had my surgery.
I opted to have what’s known as expanders – temporary implants used in breast reconstruction after mastectomy to stretch the skin and tissue.
This was followed by an “exchange” a few months later, where the expanders were removed and I received my implants.
Since then, I’ve had a few revisions to fix things like keloid scarring and the position of my implants.
Now, I am working with my healthcare team to monitor for ovarian cancer, which is, of course, another aspect of the BRCA mutation.
I go in every six months for a vaginal ultrasound and blood work.
Like a lot of women my age, I’m not yet ready to have kids.
But previvors have to think about fertility differently.
I don’t want to get a full hysterectomy (removal of the uterus), but I am considering getting my fallopian tubes removed.
I’ve already met with the fertility team, and I’m planning to freeze my eggs.
I want to do everything I can to ensure that I don’t pass my BRCA mutation on to my future children.
Creating a community
When all this began, I never would have imagined documenting my experience on social media.
But I felt really lonely going through this process.
I didn’t fit in with the cancer community.
Because I had never actually been sick, those in the community didn’t view me as having a similar situation to theirs.
At the same time, I didn’t see anyone my age opting for the kind of prevention measures I was taking.
I was experiencing my own kind of trauma and loss, but felt like no one was validating it.
So, I decided to serve as an example, and hopefully, validate others who might be experiencing the same thing.
After all, one in 400 individuals have a BRCA mutation.
Many of them are young women just like me.
Since I started posting on TikTok, I have been shocked by the response.
People message me saying they feel seen.
Young women tell me they didn’t even know genetic testing was an option.
ALSO READ: Nine questions about genetic testing for cancer
There are so many of us walking around with invisible risk, and no one is really talking about it.
I shared my experience, immediately post-surgery, scars and all, so that others don’t feel isolated.
I want people to know there is a community for us, we just have to find each other.
That’s why I am excited to participate in events such as National Previvor Day on Oct 2, which takes place in the middle of National Hereditary Cancer Week (Sept 29 through Oct 5 – both typically marked in the United States).
It’s a chance to raise awareness about the risks we face, not just physical, but emotional and social.
It’s about creating space for stories like mine and about making sure everyone understands their individual risk and the options available to them.
Being a previvor isn’t just something I am.
It’s something I live, every day, every appointment, every decision.
I want other young people to know that if you’re navigating hereditary cancer risk, you don’t have to do it alone.
For more information on hereditary cancer, visit www.facingourrisk.org. – Chicago Tribune/Tribune News Service
Maggie Wickman is a 28-year-old TikTok creator and behavioral health professional residing in Chicago, Illinois, US.
