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Diagnosis and Treatment Is Just the Start: Issues Facing the Young With Breast Cancer

31/03/2016 17:13 | Updated 31 March 2016

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

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 and diagnosed at a later stage as it's picked up when symptomatic, rather than at an early stage on a mammogram. Plus prognoses are often spoken about in 1, 5 or 10 years...but that only takes me to 43. I want to live much longer than that!

Fertility issues. Chemo 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 if they get funding or have the cash to fund it themselves. Shockingly, many young women don't have their options discussed before starting treatment but that needs to change.

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 mums 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 that they might not be around to see them grow up.

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 putting in the additional hours. There are also other lingering side effects that continue long after treatment has finished, such as extreme fatigue and chemobrain (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 HUGELY frustrating) that can make it almost impossible to perform as you used to. 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 more so than men nowadays, this creates a huge hurdle and can lead to financial issues.

Early menopause.
BOOM! Straight into hot flushes (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 as the plan is to lower oestrogen as much as possible, we can't take HRT or natural remedies and are left to just deal with it.

Body issues. I know we all have body issues no matter what our age, but even I have to admit that mine are fewer in my 30s than in my 20s and teens. My body is unrecognisable 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, so to be left one-boobed, overweight and scarred can severely knock their confidence.

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 that there are some brilliant resources out there for young women - and they proved invaluable for me. For breast cancer, Breast Cancer Care run 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 30s) with over 2,500 members all under the age of 45 in the UK. It provides brilliant support from diagnosis, beyond treatment and for 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 20s, 30s and 40s and has regular local meetups and workshops. Just connecting with others your age going through the same thing is therapeutic and makes you feel less alone.

The other thing with a diagnosis earlier on in life, is that for those of us lucky enough to still be here, we try our best to go on and fulfil rich and happy lives with many of us doing things that act as good examples to those in the early stages of diagnosis. I know lots of other women who I've met through my cancer journey who fundraise, public speak, have set-up businesses, campaign for better care or drug availability and and have created charities and support networks - 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.

Anikka Burton is the founder of www.notanotherbunchofflowers.com and was diagnosed with breast cancer in 2011 at the age of 33

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