Breast Cancer Awareness Month: 15 things survivors want you to know

It’s breast cancer awareness month, which means women everywhere are being reminded to check their breasts for signs for lumps or any abnormalities, and a huge number of fundraising initiatives are taking place to generate more money for treatment of the disease.

And that’s important because the statistics remain concerning. According to Breast Cancer Now, one in seven women in the UK will develop breast cancer in their lifetime, while around 55,000 women and 370 men are diagnosed with breast cancer every year in the UK.

This equates to one woman being diagnosed with breast cancer every 10 minutes.

That makes it highly likely we’ll know or love someone who has been affected.

But despite an increasing awareness of the condition and its signs and symptoms, there’s so much that we can’t really understand about the disease unless we’ve been actually been through it.

Actually receiving that diagnosis and undergoing treatment shines a light on certain experiences you’d never really imagine and unless you're a breast cancer survivor yourself, there are aspects of the illness that you simply can’t prep for.

With that in mind we spoke to those who have faced breast cancer head on about the parts of their journey they really want you to know about.

Get to know your boobs from an early age

“Young women are reminded all the time that boobs are sexualised and the more I talk to young women the more it seems that they feel almost disconnected from their bodies,” says Clare O’Neill who was diagnosed with breast cancer two years ago and is the Healthcare Engagement Coordinator at CoppaFeel!

“As a Boobette I remind girls that their bodies are for them, no one else, and that they should not be scared of them or embarrassed, they should love their bodies and look after them.

“Women know their boobs better than anyone else and we are not routinely screened for breast cancer, so screening starts with us. We should be checking our boobs regularly to get to know what's normal for us.”

READ MORE: 80 per cent of women don't know that alcohol increases risk of breast cancer

Breast cancer touches young women too

“I was diagnosed with breast cancer at the age of 31, a 2.8cm 'Grade 3' cancerous lump on my right breast,” says Lauren Mahon, breast cancer survivor and founder of Girl Vs Cancer and co-host of You, Me and the Big C.

“I knew breast cancer touched many women, but I had no idea it touched women in their 20s or 30s. I’ve since learnt that breast cancer is the second most common cancer and impacts a wide range of people regardless of their age, gender, race, ethnicity, socio-economic status or lifestyle.

“We need to raise further awareness and encourage women of all ages to be mindful of their breast health.”

Getting checked isn’t embarrassing

But people still perceive it to be so. New research from Estée Lauder Companies UK & Ireland revealed that 22% of women still find breast checking an embarrassing topic to talk about. What's more, over one in three (37%) women say they have never spoken to anyone about breast checking.

And this is having a knock-on effect to the number of women checking themselves with one in five UK women under the age of 40 admitting to never having checked their breasts for signs of cancer.

Dr Zoe Williams, who will host a live self-check routine on her IGTV channel (@DrZoeWilliams) this Thursday (Oct 3) is surprised that so many women don’t feel confident to check for signs of breast cancer or feel embarrassed to talk about it.

“We must change this and make it the norm,” she says. “Women should be encouraging other women to talk more openly about their breasts across generations in their community, including their mum, grandmother, auntie, sister, or friend, to really inspire conversations around the importance of breast health, self-checking, and simply supporting those who might be unsure of what to look for. Any changes that are found should be presented to their GP. While it’s likely not to be anything serious, earlier diagnosis and treatment will improve chances of survival.”

“It's time we remove the lingering embarrassment and uncertainty, and normalise self-checking,” adds Lauren. “We can make a change by reminding the women in our lives of the importance of breast health, so we can catch breast cancer earlier.”

Men get breast cancer too

According to Clare anyone with breast tissue can get breast cancer, and that includes men. Though breast cancer in men isn’t overly common – the NHS suggest around 350-400 cases occur in men each year – increasing awareness is crucial to saving lives.

“While women are significantly more likely to suffer from breast cancer, it is an issue that can affect men as well,” explains Dr Jan Schaefer, Chief Medical Officer at MEDIGO. “In fact, men have a 1 in 1,000 chance of getting it and, while the risks are significantly higher for women, men should also be aware of any potential warning signs.”

Schaefer suggests men check their breast regularly. “Press your fingers flat against your chest (right hand for the left pectoral, and left hand for the right) and move your fingers in a clockwise motion,” he advises. “Check the entire area, starting from the outside and moving towards the nipple, looking out for any unusual bumps or lumps. An unusual lump is typically hard, not painful and doesn’t move around.”

Once you’ve done this, check your nipples, looking out for any unusual discharge by gently squeezing each one in turn.

“You should also check for visual signs, such as the nipple turning inwards, a sore or rash around the nipple, or the surrounding skin becoming hard, red or blistered,” he adds.

You might feel alone, but you're not

“When I was diagnosed with breast cancer, I felt alone and isolated, but I wasn't,” explains Lauren. “Those that matter – your friends and your family - will be there for you, and you need to allow them to be.

“It's also important to assemble your 'cancer crew,' those that have been touched with breast cancer. They'll know their stuff and will understand you when you feel nobody else does.”

Breast cancer is different for everyone

It is such a broad disease and no two people with breast cancer are the same, Clare says. “The diagnosis, stage, grade, treatment and recovery can change from person to person,” she adds.

There is not a 'one size fits all' treatment for breast cancer

“Because there are different types of breast cancer, there are different treatments,” explains Sara Liyanage, author of ‘Ticking Off Breast Cancer’ (Hashtag Press, £12.99). Sara was diagnosed with HER2 positive and oestrogen positive primary breast cancer in October 2016 at the age of forty-two.

“Some people will have a lumpectomy (surgery to remove a tumour in the breast) and some people will have a mastectomy (surgery to remove one or both breasts). Some people will have their lymph nodes removed. Some people will have radiotherapy to their breast. Some people will have chemotherapy.

“Of those who have chemotherapy there are a number of different chemo drugs depending upon the type of breast cancer,” she adds.

“Some people will have hormone therapy (if their breast cancer is hormone positive) and some people might have biotherapy or immunotherapy. Everyone's treatment regime is different.”

Rehabilitation is a marathon, not a sprint

According to Clare treatment is punishing and the process of recovery is frustrating. “It requires patience and kindness,” she says.

“Recovery/rehabilitation is unlike that of other diseases because even when you are medically 'stable' or even 'cured', you may feel worse than ever,” she adds.

There is no such thing as getting an ‘all clear’

Contrary to what you might believe, you are not told by a doctor that you are ‘all clear’, warns Sara. “Instead, the medical team check out the area where the tumour originated and with its continued absence, (i.e. it hasn't grown back) they can declare that you have "no evidence of disease" (you are 'NED').

“You have check-ups for a number of years to check that the cancer has not come back,” she adds.

READ MORE: Eat less fat to reduce breast cancer risk by a fifth, says science

Breast cancer is not a death sentence

Contrary to belief, most breast cancer is curable. “People also live with breast cancer,” adds Clare. “Some people with secondary breast cancer are incredibly healthy.”

The impact of breast cancer does not end when treatment ends

“When you are sent off into the world as NED, you are constantly living in fear that the cancer will come back - either as a local recurrence (which is where a tumour grows back in a similar place to the original tumour) or that it has metastasised (which means that the cancer cells have spread to other parts of the body and it becomes incurable secondary breast cancer),” explains Sara. “This fear can be crippling for some people.”

Find your new normal

Clare says it is important for patients, healthcare professionals, family and friends, employers, co-workers and everyone else to understand that cancer is unique in the way it affects people.

“We are mostly feeling fine when we are diagnosed and then feel worse with treatment,” she explains. “In that respect is is unique compared with other diseases.

“From my personal perspective, my priority was to be cancer-free, but when I was cured I felt terrible,” she continues.

“Like many cancer patients the treatment has had lasting damage and my treatment wasn't nearly as aggressive as other people's treatment can be.

“It's a cliche but I think it's important for people to understand that people with cancer have to find their new normal, and that can be a small shift or a big one, good or bad, but there will be a change.

“It took a while for me to realise that I was never going 'back to normal' but I'm two years post diagnosis and I'm happy with my new normal.”

Pregnant women can get breast cancer too

Roughly 200 women a year in the UK get breast cancer during pregnancy. “Women should not be ignoring symptoms just because they're pregnant,” advises Clare. “It can't hurt to get it checked out! Your GP should refer you to the breast clinic for an ultrasound with any unexplained symptoms of breast cancer. Pregnancy is not always an explanation for a new symptom.”

READ MORE: Red wine, coffee, fruit and vegetables could help protect against breast cancer

Breast cancer treatment can cause the menopause

Regardless of your age when you have breast cancer, the surgery, chemotherapy and hormone therapy can (often, but not always) induce the menopause. “And because it is a medically induced menopause rather than a natural one, it can cause intense menopausal symptoms for years after the end of the cancer treatment,” explains Sara. “For example, hot flushes, night sweats, anxiety, brain fog, fatigue, loss of libido, weight gain and infertility.”

It's not just a lump!

“When I discovered my symptom I saw a dimple in my boob before I found a lump,” Clare says. “I could easily have ignored it, but I knew it wasn't normal for me, so thankfully I got it checked.

“I was diagnosed early and I am now in remission. We should all be looking as well as feeling our boobs regularly so that if we do ever have any symptoms, we can spot them early.”