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The Issues We Need to Discuss as Young Women With Breast Cancer

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A cancer diagnosis is obviously devastating at any age. Forget chemo-induced puking and hair loss, the issues facing younger women going through cancer treatment run much deeper, but are often ignored and belittled by healthcare professionals. However, with 10 percent of breast cancer patients being diagnosed under the age of 45, and approximately 850 a year under 35 in the UK alone, these issues need to be discussed openly:

1. Mortality rates. A cancer diagnosis is scary enough, but to find out that you’re more likely to die if you are diagnosed under 35? Well, that sucks! We have more life to live, yet are more likely to die from it. This is due to the cancer normally being more aggressive when it’s diagnosed at a later stage. It’s picked up when symptomatic, rather than at an early stage on a mammogram. Plus prognoses are often spoken about in one, five, or 10 years…but that only takes me to 43. I want to live much longer than that.

2. Fertility issues. Chemotherapy can cause infertility, and some women will be on drugs for the following 10 years, so even if they are not left infertile, the 10-year delay can push them past the “child-bearing age.” This issue is often the most heart-breaking side effect for younger women – having to mourn their infertility while their healthy friends are happily procreating around them. There is the possibility of freezing embryos and eggs, but only if there is time and funding is available, or they have the cash to fund it themselves. Shockingly, many young women don’t have their options discussed before starting treatment. That needs to change.

3. Having a young family. If infertility isn’t an issue, they may already have young children or babies. Many are diagnosed while pregnant or breastfeeding. They have to “carry on as normal” throughout their treatment, juggling the 101 things moms have to do, alongside constant hospital appointments, surgery, treatment and dealing with all of the “yucky” side effects. Alongside this, they have the heartbreak of explaining what is happening to their children and dealing with their children’s reactions and fears, while facing the very real possibility they might not be around to see them grow up.

4. Career. Many young women are diagnosed in the throes of their career. The constant hospital visits for surgery, scans, blood tests and treatments and the resulting side effects and recovery times make it almost impossible to continue a 9-5 job, let alone put in the additional hours. There are also other lingering side effects that continue long after treatment has finished, such as extreme fatigue and “chemo-brain” (cognitive impairment as a result of chemo that can make your head feel really foggy and affect your memory and ability to concentrate which is extremely frustrating) that can make it almost impossible to perform like before. I know of far too many young women who have missed out on promotions or been demoted following their cancer diagnosis. With the pressure on young women to prove themselves, this creates a huge hurdle and can lead to financial issues.

5. Early menopause.
Boom! Straight into hot flashes (volcanic lava hot), insomnia, night sweats, mood swings, anxiety, weight gain and dryness (whispers) *down there.* Rather than being eased into menopause over many, many years, our hormones are prematurely turned off and the result can be extreme. And since the plan is to lower estrogen as much as possible, it is difficult to take hormone replacement therapies (HRT) or natural remedies, and we are often left to just deal with it.

6. Body issues. I know we all have body issues regardless of our age, but even I have to admit that mine are fewer in my 30s than in my 20s and teens. My body is unrecognizable since my treatment and chemo. The younger you are, the more you don’t want to be seen as “different” and many are single and have yet to meet their life partner. To be left “one-boobed,” overweight and scarred can severely knock the confidence in many young women.

7. Isolation. No matter how amazing your friends are, they are less likely to understand, as we just haven’t had other friends go through cancer at our age. They also have their own busy lives to get on with. In hospital for my treatments and surgeries, I was often the only one under 50 — cue lots of tilting heads and pitying looks.

However, the good news is there are some brilliant resources out there for young women – and they proved invaluable for me. For breast cancer, Breast Cancer Care runs Younger Women Together weekends and there’s a brilliant secret Facebook group called Younger Breast Cancer Network (set up by my friend Vickie who was also diagnosed in her 30’s) with over 2,500 members all under the age of 45 in the UK. It provides support from diagnosis to beyond treatment, as well as those whose cancer has spread. It also offers the opportunity to meet others of a similar age and at a similar treatment stage local to you. Vickie also works tirelessly to make things better for us young folk with charities and hospital trusts. For those facing other cancers, Shine Cancer Support is for those in their 20’s, 30’s and 40’s and has regular local meet-ups and workshops. Just connecting with others your age going through the same thing is therapeutic and makes you feel less alone.

For those of us lucky enough to still be here, we try our best to go on and fulfill enriching, happy lives with many of us doing things that act as good examples to those in the early stages of diagnosis. Many women I’ve met through my cancer journey continue to fundraise, speak publicly, set-up businesses, campaign for better care or drug availability and and have created charities and support networks. They are all determined to make something good from something awful.

A cancer diagnosis is devastating at any age. We need to make sure the relevant help and support is offered to each and every person.

The Mighty, in partnership with Fuck Cancer, is asking the following: What do you wish you had found on Google when you were first diagnosed? Find out how to email us a story submission here.

Originally published: July 15, 2016
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