I didn’t expect to be diagnosed with terminal breast cancer at 47. Whilst I knew there was a small possibility, I didn’t really expect my cancer would return along with an incurable diagnosis. But here we are.
If we know anything, it’s that life often throws us curve balls, this one being the biggest, shittiest one you could ever imagine. Being diagnosed with terminal breast cancer is unimaginable and something I still struggle to believe, even though I know it’s very real. As I walked out the hospital I remember telling myself and those I loved that I would beat this, that if anyone can I would. That I would defy the odds and live with this for a long time. This became my mantra and one I still tell myself most days.
As hard as it is to imagine, life goes on. Living with cancer is far from easy, but this diagnosis has driven me to try and live more vividly and fully than I had before. I may be diagnosed with terminal breast cancer but right now I’m well and not ready to go anywhere.
It takes an army to live your best life when life gives you lemons. Here’s some of the ways I cope:
I got busy living. Embracing life, enjoying the little things. I love my adventures and intend to live big.
This work is never ending. I believe I can do anything I set my mind to. It applies more now than ever before. Facing my fears, choosing my beliefs and letting go of those that don’t serve me. All of this work is central to my determination and belief that I can thrive with stage 4 cancer.
Do your own research, read books. Make sense of your cancer and take control based on what works for you.
Focusing on all the reasons I want to keep living, rather than the fear of dying. Looking forward. To the experiences and adventures I’m yet to have. My husband. My family. My friends. My business. Early on, I was so terrified, I couldn’t imagine life six months out. Eventually once the dust settles I just started focusing on living instead.
They are indicators not inevitabilities. There are exceptions to every rule. All we can do is walk our own journey, and be grateful and determined to defy the odds
Understand my disease
I spent a long time reading and researching different protocols so I kew my options. I have tried to understand what my body is trying to tell me. How to nourish myself, to appreciate, to let go. I try and take it as an opportunity to change the way I treat my body and the environment around me.
Focus on healing
I have also learnt that maybe this journey isn’t about finding a cure. A magic bullet. It’s about healing. The type of healing that never stops. Everything I do is about trying to heal my mind and body. There are so many options. The important thing is to trust the decisions you make and believe in yourself. My life has taken on a new normal, and whilst it doesn’t fit my old view of what my life would look like, it brings different joys and appreciations every day.
I’m only a year into my stage 4 diagnosis. As you can imagine, it’s been A LOT. It’s a process of continuous learning, about myself, my disease, my healing. My focus is on filling my life with love and adventures and creating something amazing as a legacy.
So when life gives you lemons, shake yourself off, take a deep breath and make shit happen.
Sara Cohen is founder of luxe sustainable womenswear brand www.hakinakina.com. Having alreadyrecovered from breast cancer once, she was in remission for several years, until last April when she found her cancer had returned and was by definition terminal. 5 years ago, having recently recovered from cancer she was looking for swimwear that suited her active lifestyle and offered the high level of protection she needed to cover up her radiation burns. She was left with minimal options; so when she moved to New Zealand she decided to take matters into her own hands. Armed with a background in marketing and 5 years in women’s wear, she opened her own business and a line of swimwear to give women the freedom to play without compromising comfort, beauty or the environment. Find out more at hakinakina.com or connect on Instagram @hakinakina.active.
17th – 23rd January 2022 marks Cervical CancerPrevention week. We’ve joined forces with the experts, bringing you this guide, to raise awareness of cervical screening. If you have a cervix, this one is for you.
Here, Dr Deborah Lee from Dr Fox Online Pharmacy talks about the importance of not delaying cervical screening when invited but also to see if there was anything we could be doing to avoid this type of cancer.
Did you know?
There are around 3,200 new cases of cervical cancer each year in the UK.
Cervical cancer is the 14th most common cancer in the UK.
Cervical cancer can be prevented by having regular cervical smears.
The most common age group for women to be diagnosed with cervical cancer is in women aged 30-34 years.
Since the 1990s, the incidence of cervical cancer has fallen by around 25%. This is likely to be due to the success of cervical screening.
The number of cases of cervical cancer is predicted to fall in the coming years due to the success of HPV vaccination.
Around 850 women still die each year in the UK from cervical cancer.
Since the 1970s, the death rate for cervical cancer has fallen by around 75%. Again, this is likely to be due to the advent of cervical screening.
Risk factors for cervical cancer
HPV – 99.8% of cervical cancers are due to infection with the Human Papillomavirus (HPV). This is a sexually transmitted virus. There are over 100 subtypes. HPV 16 and 18 are high-risk subtypes, and these are the target of the current HPV vaccination campaign. Low-grade HPV subtypes, including those which cause many visible genital warts, are not a risk factor for cervical cancer.
Many women with HPV infection never develop cervical cancer, meaning other factors are also important for the infection to progress. Cervical cancer is more common in those who also had an early age of first sexual intercourse, before the age of 14, or who have had 6 or more sexual partners. Cervical cancer risk is lowered in women whose sexual partner has been circumcised.
Women with genital herpes are also at an increased risk of cervical cancer.
Smoking – 21% of cervical cancers are attributed to smoking. The risk of cervical cancer is increased by 46% in current smokers as compared to lifetime non-smokers.
HIV – Cervical cancer is six times more common in those infected with the Human Immunodeficiency Virus (HIV). However, this risk is significantly reduced in women who are taking highly active antiretroviral therapy (HART).
Oral contraceptives – Up to 10% of cervical cancers are thought to be associated with the use of oral contraceptives. However, the risk is only attributable after five years or more of use. There is no need to panic and stop taking the pill. The benefits of taking the pill are considerable and should not be underestimated. Pill users should not be unduly concerned but are strongly advised to attend for their cervical smears regularly, and to try not to smoke.
Ethnicity – Cervical cancers are more common in ethnic groups who are reluctant to come forward for screening. This means cervical cancer is more common in women who are Black, Hispanic, Asian or from low-income households.
Women who were given diethylstilbestrol (DES) – Some women were given DES, a potent synthetic estrogen, between 1940-1970, to try and prevent miscarriage. This is known to increase the risk of cervical and vaginal cancers.
The UK Cervical Cancer Screening Programme
One important aspect of cervical cancer is that it has a very long premalignant phase, during which it is possible to identify abnormal cells – by having a cervical smear. These abnormal cells can then be treated. Doing this prevents these cells from transforming into cervical cancer cells.
Adult women aged 25-64 years are invited to have a cervical smear once every 3-5 years in the UK. Those aged under 50 are asked to come once every 3 years, and those aged over 50, every 5 years. Trans men (who were female at birth) are not automatically invited but can request a cervical smear if they still have a cervix.
The smear itself is also tested for the presence of HPV. If HPV is present, you will be invited to have smears more often, or referred to colposcopy, where your cervix can be examined more closely with the aid of a special instrument called a colposcope. This gives magnified images of the cervix.
What is a cervical smear?
A cervical smear is a simple test, in which a plastic spatula is gently rubbed over your cervix (the neck of the womb) to collect some cervical cells. These are then sent to the lab to be looked at down the microscope.
To be able to do this, the doctor or nurse taking the smear, needs to see your cervix. This means you do have to remove your underwear, lie on the couch, and allow them to insert a vaginal speculum. This is an instrument, made of plastic or metal, which looks like a duck’s beak.
The secret is to try and relax as much as you can. This helps the smear taker to be able to manoeuvre the speculum as they need to, to get a good view of the cervix. Try not to get too anxious. Doctors and nurses who do smears are very well trained and will do all they can to put you at your ease. It can be uncomfortable having a smear, but it shouldn’t be painful. It usually only lasts – perhaps 30-60 seconds. This is a very short inconvenience for a test that could save your life. You can watch a video of how a cervical smear is taken here.
How many women have not had a cervical smear?
It is very worrying that in 2019, 1 in 3 women aged 25-64 had not had a cervical smear. In a survey conducted by Jo’s Cancer Trust, 2000 women were asked about their experiences of having a cervical smear. An incredible 915 had either never had a smear or had delayed an appointment to have one. 71% said they felt scared, 75% felt vulnerable, 81% were embarrassed, and 67% said having a smear would make them feel out of control. 58% were scared it would be painful.
Having taken cervical smears for over 30 years, I can tell you, taking a smear is a straightforward process, that for the vast majority of women, is easy, quick, and almost painless. The smear taker will respect your dignity, cover you with a blanket, ask permission to start the procedure and stop at any time if you ask them to stop. You do not need to feel out of control. Doctors and nurses who work in sexual health or GP surgeries, spend all day looking at female vulvas and vaginas – they are perfectly used to it, and nothing will surprise or shock them. You can feel completely at ease with these medical practitioners. Any female doctors or nurses will no doubt have had a smear test themselves and know how it feels.
What is far more of a worry, is not attending for your smear, but having to come to the clinic in the future, with a possible undiagnosed cervical cancer.
Getting your smear results
You should get a letter in the post about your results, usually within 4 weeks. If your smear is normal, you will be told to have another smear in 3-5 years depending on your age. Sometimes, there may have been difficulty interpreting the smear, and it just needs repeating in 3 to 6 months. If you do have abnormal cells, you will be referred to the Colposcopy clinic so a Gynaecologist can take a closer look at your cervix. If HPV is present, but your cells look normal, you will simply be asked to have another smear in 12 months. The important thing is to follow instructions and attend for your subsequent visit as requested.
How accurate are cervical smears?
It’s important to remember that no tests are ever 100% accurate. There is always a small chance the smear could show an abnormality that isn’t cancer, or, could be wrongly classed as negative, meaning something abnormal was missed. In between smear tests, if you have any symptoms such as bleeding in between your periods or after sex, or abnormal vaginal discharge, it’s important to see your GP or go to the Sexual Health clinic without delay.
Prevention is better than cure
After a detailed look at the statistics, experts believe that for a woman aged 33 – 64, attending for cervical screening will reduce her chance of developing cervical cancer over the following five years, by 60-80%, and reduce her chance of advanced cervical cancer by 90%. However, cervical screening is less effective in younger age groups. In general, doing cervical smears in women under the age of 25 has not been found to be beneficial.
If you have any concerns about your smear test, you could book an appointment with your GP or practice nurse, just to discuss the situation and take a list of written questions. They will be happy to help you. You can take a friend or relative to your smear appointment with you.
You can also ask for a doctor or nurse of the sex of your choice to take your smear, although you may be asked to come back on another day if this can’t be actioned at the same visit.
You will also be offered a chaperone when you have your smear. You can accept or refuse – some people prefer another person there to hold their hand, while others prefer as few other people in the room as possible.
Try and find out all you can about having you smear before you get to the clinic. Knowledge is power, and it will help you feel more confident. For example, take a look at Jo’s Trust – Cervical Screening.
What can you do to reduce your risk of cervical cancer?
You can have a smear at any time so long as you are not bleeding. In the past, smears were preferable around midcycle – on day 14 – but these days this is rarely needed. If you are on a form of hormonal contraception, you will not be ovulating anyway, and will not have a day 14. This might be needed in older women, who are having natural cycles, if it has been hard to get enough cells on the smear in the past. But don’t let the day 14 issue confuse the situation.
If you are aged 40 plus, and find smears uncomfortable, you might benefit from using some topical estrogen in the vagina for 4 -6 weeks before your smear test. Ask your GP or the sexual health doctor or nurse about this. You do need to stop using the cream or pessaries at least 2 days before the smear test.
In the UK, HPV vaccinations are offered to girls and boys aged 12 and 13, when they are in year 8. They then have a second dose 6 -24 months later. The idea is to create HPV antibodies before they become sexually active and encounter the HPV virus through normal sexual activity. HPV causes cancer of the cervix, vulva, vagina, anus, penis, as well as some head and neck cancers.
Between 2009 and 2018, over 10 million doses of the HPV vaccines were administered. The vaccines have been proven to be safe and highly effective. In a recent 2019 study, which included over 66 million young men and women, HPV vaccination showed an 83% reduction in high-risk HPV in teenage girls and a 66% reduction in women aged 20-24. There was also a 51% reduction in precancerous changes to the cervix in teenage girls and a 31% reduction in women aged 20-24.
Some studies suggest the viral load of HPV is higher in the cervix of women who smoke than in non-smokers. The reasons for this are not well understood, however, a toxin in cigarette smoke known as Benzo[a]pyren has been shown to stimulate HPV multiplication.
Protect yourself from HPV by using a condom
Consistent and careful use of condoms can help prevent the acquisition, not just of HPV infection, but also other STIs. It can also help cause regression of abnormal cells if they are present on the cervix. However, having sex with an HPV infected partner, even once, without a condom, is likely to result in the transmission of infection. Most UK adults will be infected with HPV at least once in a lifetime.
The best sexual health advice at present is that women should use a condom for STI protection as well as, not instead of, a reliable method of contraception to prevent an unplanned pregnancy. If a male partner will not use a condom, women do have the option of using the female condom, the Femidom.
Cervical cancer is linked to an increased number of lifetime sexual partners. For good sexual health, you should try to avoid multiple partners , or overlapping partners, as this is associated with increased risk.
Helen Baker founded and runs We Are All Smear Ready, a craftivism campaign to raise awareness of the importance of cervical screening and addressing the barriers of body image and embarrassment, two of the main barriers to attending appointments. She says;
‘With body image and embarrassment being two of the main barriers to attending a smear test, this Craftivist campaign spreads the message that you don’t have to be beach ready to be smear ready, we are all smear ready. It really doesn’t matter how your lady garden looks, nurses have seen all varieties and don’t care what yours looks like.
With so much focus on the external aspect of our bodies we can often overlook how important it is to look after our bodies internally but these mini handcrafted pants as a gentle reminder that cervical screening and HPV vaccines are the best ways to protect yourself from cervical cancer. By making and sharing mini pants and boxers during Cervical Cancer Prevention Week, we can help to spread this important and potentially life-saving message to anyone with a cervix.’