"The hardest decision of my life." What you don't know about having a preventative mastectomy.

"We’ll remove them, and we’ll remove those when you’re done with them," said the surgeon as he casually pointed to my ovaries and my breasts (I was breastfeeding my baby at the time).

To the surgeon, it was a black and white decision, but as the patient, all I saw was grey.

I carry a BRCA gene mutation (sadly my only resemblance to Angelina Jolie) so in 2017, I had my fallopian tubes and one ovary removed, and then in 2019 I had a risk reducing double mastectomy. 

This BRCA gene mutation puts me at high risk of developing cancer, and I join many other women (and men) in the same position in this ‘high-risk for cancer’ community.

While you're here, watch a quick video on how to check your breasts. Post continues after video.

I had the surgeries that many health professionals advised me to have so that I could avoid developing cancer like several of the women in my family before me. Deciding to have those surgeries were the hardest decisions of my life. 

Imagine being told you had a 66 per cent chance of winning on a horse. Would you bet on it? I would, take my money! 

Those were the odds I had for developing breast cancer in my lifetime. Many women in the high-risk community grapple with odds like these (and much worse) and then we are expected to base our major health decisions on these risk estimates. Some women in the high-risk community don’t even carry identified gene mutations; they simply have a strong family history of cancer, which makes it even trickier to estimate risk.

Being told you are at high risk for developing breast and ovarian cancer brings about a myriad of questions and heavy decisions.

What if I remove perfectly healthy breasts?

What if I was never going to get cancer?

How will I handle surgically induced menopause?

How can I decide to have major, body-altering surgery based on a risk estimate?

How to make this big D so as not to get the big C? 

There are many ways to reduce the risk of cancer, which include medications, screening, and lifestyle factors, but most women are advised the best course of action is best to remove our breasts and our ovaries (and fallopian tubes) to reduce our risk. 

These surgeries affect so many parts of a woman’s life; aspects such as hormonal balance, physical ability, looks, sexuality, confidence and the ability to reproduce. Yet most of us aren’t even referred to a psychologist as standard practice. 

Doctors are all about the physical: It should be an easy decision because you don’t want to get cancer like other patients.

Well, it’s actually not easy at all. In my experience, doctors focus on simply removing the physical risk. They aren’t so fussed with the other factors that contribute to a person’s wellbeing, like relationships, family planning, and mental and emotional health. 

I get it; doctors want patients to avoid a cancer diagnosis, but I think there needs to be more of a balance. Giving someone a blood test result and a pamphlet with a few ‘recommendations’ for managing risk and then waving them goodbye is not balanced.

My pamphlet. Image: Supplied.

I know women who are at high risk for cancer who schedule their screening MRIs and mammograms on certain days of the year, just in case something shows up and they don’t want to ruin their kid’s birthday with a cancer diagnosis. 

I delayed my mastectomy because I wanted to breastfeed my three kids, as that was important to me. Other people worry about what their partner or society will think about their surgeries. There are those impacted by the cancer experience of people in their families before them. There are women who find it hard to fit all the annual health screenings in each year, so they opt for surgery so their lives are less hectic with appointments. There are also people who fear the guilt of potentially passing on the faulty gene to the next generation. 

There are so many considerations for the high-risk individual and decisions can only be made based on the information and the circumstances that surround them at the time. But we need support to do this.

To act or not to act? A fellow high risk for cancer community member who was grappling with her decision recently contacted me. She was distraught at her options: decide on major surgery to minimise her risk, or live with the risk and cross her fingers. 

It baffled her why people affected by cancer weren’t given more support or referred for counselling to make such big decisions. And she’s right. It’s a lonely decision to make.

Do you decide to reduce your risk by having major surgery or do you live with the uncertainly of cancer that may or may not be lurking? Of course, I know how every person who has been diagnosed with cancer would respond to that question. A surgeon once told me that once you get ovarian cancer, the horse has bolted, and that horse bolted for my mum.

My friends and I celebrating what I thought was a wise decision to have a double mastectomy. Image: Supplied.

As high-risk people progress through life, we hit the milestones that are listed in the pamphlet. It’s not much of a choice really, but then neither is cancer. All decisions we make are equally valid and should suit the individual at the time. And we must remember that depending on our stage in life or the options available, our decisions can change too. What was right for someone a year ago might not be right for them now. 

In a few years’ time, I’ll be faced with the decision to remove my last, wonderful ovary which will launch me into an early menopause and reduce my risk of ovarian cancer, but will put me at increased risk of cardiovascular disease, osteoporosis, and cognitive impairment (to name a few things). I hope that science will give me another choice but sadly I know that this decision is 90 per cent made already. 

I will never know if I was going to develop breast cancer. That used to overwhelm me, but now it’s a distant thought that only visits every now and again. The recent discussions I have had with those grappling with their risk management decisions make me realise how happy I am to have reduced my risk and have the surgeries. That decision was right for me and my situation.

Feeling healthy and happy in 2021 running with my daughter. Image: Supplied.

I did something really hard, which impacted so many aspects of my life, but I was lucky to have the knowledge and support to make informed decisions. Something the women before me did not have.

It’s awful that people who are at high risk for cancer must make these decisions, but at least we get the choice before cancer happens. Just imagine a future where science has progressed far enough that our kids aren’t faced with the same big decisions.

For support and information about being at increased risk for developing cancer, visit Pink Hope.

Feature Image: Supplied.