Research shows that only 4% of women diagnosed with breast cancer are under the age of 40. So if you find yourself one of the unlucky ones, it can be a particularly tough pill to swallow. Breast cancer as a younger person comes with its own nuances and challenges. It has all of the “normal” layers of having breast cancer, with young families, financial strain, body image and fertility issues thrown in for good measure. An extra layer of the swamp to wade through. Let’s break it down and discuss. 

When I was first diagnosed with triple negative breast cancer in 2019, I was 35 years old. The second time round I had been 40 for a total of 1 day. Of all of the things I would be confronted with on the rocky road of breast cancer, facing it as a young woman and mother would prove to present the most unexpected hurdles to jump. 

Shock.

First comes the shock. As a young and otherwise healthy person, you tend not to see it coming. I had no breast cancer in my extended family. No cancer at all in fact. I had given birth to a beautiful baby girl only 5 months before. I felt happy and well. Vital. It came at a time when I truly had everything to live for, and completely floored me. I looked around at others my age. No one had cancer. They were all busy with work, their families and enjoying life. Just as I should be. 

I’d look around me at other cancer patients in the various waiting rooms I found myself in. My eyes would meet with one’s much more wise than my own. They would be glancing at me, curious, questioning, sympathetic. And it would occur to me that I was the youngest one there. It felt as though I was having some sort of bizarre and awful out of body experience. Even now I am 40, I notice the same thing.  It feels bitterly unfair, but I know it will pass. 

Dependents to worry about.

People who are diagnosed with breast cancer as a younger person are more likely to have families to look after. Little, or perhaps big, ones that depend on you for everything, and that you love more than life itself. 

My first thought at the time of my diagnoses was, and still is, for my children and husband. The sheer terror of leaving them without their Mom and wife is my single biggest reason to fight this. I admit that the second time round in particular, the crushing reality of knowing what was coming was almost too much. The thought of refusing chemotherapy came to my mind countless times. I genuinely considered not doing it, even though I know that with triple negative you need to throw everything at it that you possibly can. I was ready to run away from it. 

But then I would look at my childrens sweet faces. My daughter was 5 years and my son 16 months when my recurrence showed up. Just babies. They needed me and I knew I had to do whatever it took. In a way, it made things easier as it took the choice away. 

On the flip side, having young children whilst going through treatment for cancer also comes with additional requirements from you, at a time when you are already running on empty. Relentless financial responsibilities, finding extra child care when it’s needed. Regulating everyone else’s emotions around your hair loss and sickness. You often have disturbed nights, and are constantly exposed to the plethora of childhood viruses that they pick up from school or daycare. Far from avoiding sick people to avoid getting sick yourself, you are wiping their various infected body fluids as they cling to you. 

Unfortunately there is no such thing as a rest day with a young family to take care of, especially if you live far away from your support network as we do. Keeping up with my little ones whilst having chemotherapy is one of the biggest tests of endurance I’ve ever had to face. 

Fertility.

The majority of women under 40 are pre menopausal. Chemotherapy and hormone suppressing drugs such as Tamoxifen might halt or slow your menstrual cycle. This medically induced menopause might be temporary or permanent, depending on your age and how your body responds. It comes with the unpleasant effects of menopause at any age, including hot flashes, mood changes, weight gain and vaginal dryness. 

On top of that, chemotherapy attacks any cells that are fast growing or moving, including your ovaries. This can render you infertile going forwards. All of this means that you need to make some pretty big decisions about your fertility. And fast!  

IF you want to have children in the future, you have 2 options. The first is to do a round of IVF to harvest and preserve your healthy eggs before chemo begins. The second option is to have an ovarian suppression implant placed in your stomach once a month for the duration of chemotherapy. You will hear this referred to as Lupron or Zoladex. The idea is that it puts your ovaries “to sleep” so that they are hidden from the chemotherapy. It is an insurance policy, but not water tight.  

The road I took.

At my first diagnosis I had one child. She was only 5 months old and suddenly we were faced with deciding whether or not we wanted more. My oncologist pushed for me to do the egg preservation but I was blindsided, terrified and didn’t want to delay treatment. My overwhelming priority at the time was to be around for the child I already had. So I went with the monthly implant instead. 

Once all treatment had finished, I waited the recommended 2 years before trying for another baby. In that time, even with the growing feeling that our family was incomplete, I came to terms with the fact that it might never happen. I was 38 by then, my body had been through a lot and I didn’t want to get my hopes up. Thankfully much to everyone’s surprise, I fell pregnant immediately. I went on to have a happy healthy pregnancy, and we completed our family with a beautiful baby boy. If you’re curious you can read my pregnancy after breast cancer story here. 

Of course not every story has such a happy outcome. It’s important to carefully consider your options. Fertility might not even be a factor for you. This time round, at age 40, I have chosen not to do any fertility preservation at all. We are done having children and I must admit it is nice not to be dealing with an extra medication and side effects on top of chemo.

Ultimately it is your body, your life and your choice. Take your time with this one.

Body image and loss of identity. 

Something else I wrestle with as a younger woman with breast cancer is my body image. It makes sense that younger people, especially women, are likely to be more aware of their personal appearance than older people. We have yet to experience the body changes that come with being older, and are not expecting such a drastic change so suddenly. 

Chemotherapy makes you lose your hair, weakens your nails and can even age you faster. Undergoing a mastectomy, be that with or without reconstruction, changes your body. Looking at yourself in the mirror when you are in the depths of treatment can be jarring. 

Add to that the loss of sexual desire and weight gain that can also accompany treatment and it’s like living in a stranger’s body. I am currently post single mastectomy and 8 weeks into chemo. My husband is 7 years younger than me, and I often question what he must think when he looks at me. 

This is a reminder to myself and to you, and I can say this from experience. It will get better. Your hair, eyebrows and lashes will come back. Before you know it you will be twisting your hair up on a hot day because it’s making you sweat again. You will figure out ways to dress your newly shaped body, and become comfortable with your scars. For now you just have to take it day by day in order to survive. But one day in the not too distant future, if you’re lucky, you will look in the mirror and think “there she is!” 

Navigating work commitments and financial strain. 

Most people under the age of 40 are not lucky enough to be retired yet. Sadly our jobs and financial obligations don’t just stop when we are diagnosed. We have to do what we can to stay afloat, and provide for ourselves and our families if we have them. 

A cancer diagnosis and resulting treatment can put a strain on your job and finances. It is time consuming, especially at first. Appointments, scans, procedures, phone calls, organizing time off work and additional child care if needed. It is a logistical nightmare, and that’s even before treatment begins! Oftentimes something has to give, and as that can’t be your treatment it will likely be your work commitments. 

If you are on contract, all you can hope for is sympathetic employers and reasonable sick pay. I am self employed so lucky not to have a boss to answer to. But it means that when I’m not working, I’m not getting paid. So, my savings are taking a hit. It is stressful, and I push myself to work when I know I should be resting. I wouldn’t recommend that, by the way, it’s imperative to take care of yourself and reduce your stress levels when dealing with cancer.  

My final thoughts.

Experiencing breast cancer as a younger person comes with a lot of unforeseen challenges. It can be a minefield to navigate. But let me tell you a secret. There are also benefits to having cancer young! 

Yep you heard right. As a younger person you are likely to be stronger and in more preferable overall health than elderly patients. This means that younger women often recover faster from surgery, and tolerate chemotherapy better. Our hair grows back faster, and we “bounce back” more swiftly. It is easier to keep moving, both physically and mentally. 

My oncologist said that with younger people they tend to treat as aggressively as they can, because we tolerate it better and have (hopefully) many more years ahead of us.  

So in the words of a dear friend of mine; “big girl panties up and get it done!”