02/10/2020

‘It’s hard to watch others start families knowing that it will never happen to you,’ one woman tells Sabrina Barr

Every year, around 3,000 new cases of cervical cancer are reported in the UK. Despite approximately 99.8 per cent of cases being preventable, there are still many misconceptions surrounding cervical cancer.
Cervical Cancer Prevention Week, an annual campaign led by Jos Cervical Cancer Trust, runs from Monday 20 to Sunday 26 January. Each day, The Independent will be publishing content to help raise awareness and dispel myths regarding cervical cancer. Although cervical cancer can affect anyone with a cervix the term women will be used here for brevity.
Cervical cancer is a form of cancer that occurs in the cervix, affecting approximately half a million people across the globe on an annual basis.
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While individuals who have not been affected by the condition may have a basic understanding of what it entails, they may not comprehend the true scope the cancer can have, with some treatments causing infertility and difficulty having sex.
For women who have been diagnosed with cervical cancer, fears about the impact of treatment on their ability to have children are common, says Rebecca Shoosmith, head of support services at Jos Cervical Cancer Trust.
Many also find it impacts their sex life. This can result from physical changes caused by treatment, psychological feelings such as stress and fear, as well as changes to relationships.
Five women who were diagnosed with cervical cancer have spoken to The Independent about how their treatments have affected their fertility and sex lives, detailing the physical and mental impact of their experiences.
Claire, 39, a retail manager from Essex
Around four years ago, Claire was diagnosed with cervical cancer after exhibiting symptoms including back pain and spotting in between periods. She had never had a smear test done, having avoided them due feelings of fear and embarrassment. Within three months, Claire had to undergo a hysterectomy, meaning she would not be able to conceive any more children in addition to her two daughters. Her diagnosis and treatment had a huge impact on her self-esteem, at times making her feel less of a woman.
Claire, a 39-year-old retail manager from Essex, was diagnosed with cervical cancer four years ago (Claire)
I avoided my smear test. I didnt go to them. I put the letters in the drawer. Ridiculous, to be honest. I was really nervous about having them done, Claire says. I thought, Im young. Its never going to happen to me Ill be fine. Its a worry that I thought like that.
After years of ignoring the letters reminding her to go for a smear test on a three-year basis, Claire realised that something unusual was occurring to her body when she started to experience pain in her lower back and abdomen, spotting in between periods and bleeding after sex.
I thought, Im young. Its never going to happen to me Ill be fine. Its a worry that I thought like that
Two weeks after visiting a doctor, Claire was referred to a hospital, where she underwent her first smear test. The smear test confirmed that she had cervical cancer, a condition that she previously knew very little of.
Claires daughters were 15 and six years old at the time of her diagnosis. With such a significant age gap between the girls, the retail manager says she would have liked to have given birth to more children. However, the reality that she needed to have a hysterectomy the removal of the uterus meant this was no longer a possibility.
Claire with one of her two daughters (Claire)
I was devastated. Im such a maternal person, she states. The choice was taken away from me.
Following her treatment, the 39-year-old has found that some peoples line of questioning has been really insensitive, failing to take into account the fact that the decision to conceive more children is no longer one she is able to make for herself.
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Youve had two children so it doesnt matter. It does matter. It matters massively, Claire says, providing an example of one of the statements she has heard before. I find that really insensitive. It was my decision, and it was taken away.
In addition to the physical impact of her treatment, which Claire says has completely changed the shape of her body, her ordeal has also had a tremendous effect on her mental wellbeing.
For a little while you feel less of a woman. I found myself feeling very unattractive. It changed me completely as a person, she says, adding that she feels very self-conscious by the scars left from the procedure.
Claire hopes that by encouraging more conversations about cervical cancer, especially from a young age, it will no longer be perceived as a taboo subject.
Hannah, 38, a part-time creative account manager from Luton
In 2012, following a routine smear test, Hannah was diagnosed with cervical cancer on the eve of her 31st birthday. She had experienced no symptoms for the condition, discovering later that her previous smear test in 2009 mistakenly missed that she already cancer in her cervix. Meeting certain criteria meant that Hannah was able to undergo a radical trachelectomy, as opposed to a hysterectomy, which involved the removal of her cervix. Two months before her first surgery, Hannah met a man who would later become her husband, and with whom she has since had two children.
Hannah with her two children, aged one and four (Hannah)
While smear tests are one of the most effective ways of protecting against cervical cancer, they are not always 100 per cent foolproof, Hannah states. The part-time creative manager is one of a small percentage of women whose cervical cancer was not detected by her routine screening, an occurrence that she says highlights why it is mega, mega, mega important to never miss a smear.
After the smear test that identified the abnormal cells, Hannah visited a specialist doctor, undergoing a colposcopy so that a sample of tissue could be extracted. The sample confirmed that she had cervical cancer, and led her to believe that she would have to have a hysterectomy to treat the condition.
You can have children without having a cervix
Before elective surgery, you go in knowing itll be one outcome or the other. So we went in thinking I was going to be having a hysterectomy, Hannah explains. With all the scans and stuff they can only tell us to a certain extent until theyre actually really in there looking at everything.
Hannah describes herself as a glass half empty kind of person, and so she went into the surgery believing she would not be able to conceive children when it was over. Her now-husband, on the other hand, believed there was a chance of a different outcome, a prediction that turned out to be true.
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During surgery, the doctors were able to perform a radical trachelectomy, removing Hannahs cervix and the upper third of her vagina. The procedure was the first of its kind to be conducted at the hospital where Hannah was being treated.
Throughout Hannahs treatment, she was still in the early stages of a relationship. Despite her partners aversion to medical environments hes very phobic of needles, he doesnt like hospitals and he doesnt like blood Hannah recognised that he was a good one when he remained by her side.
I thought well you know what, if he is willing to come to hospital with me and hold my hand going through all these various procedures, and the fact that I was going to face a hysterectomy at one point, in my head I thought, Well, hes a keeper then, isnt he.
Part of Hannahs surgery involved having a permanent stitch, called a transabdominal cerclage. The transabdominal cerclage, she explains, basically closed off her womb. This meant that while she would be unable to give birth to a baby through a vaginal delivery, she would still be able to conceive and give birth via Caesarean section.
Hannah met her partner two months before undergoing surgery (Hannah)
You can have children without having a cervix, says Hannah, whose two children are aged one and four. 
I do like to think theres a bit of a shining light and a little bit of hope for women who have had a cancer diagnosis to go on and have children. But I dont want to give anyone false hope, because there is more of a chance youre going to face a hysterectomy if you have cervical cancer.
For Hannah, she hasnt experienced any change to her sex life since undergoing treatment for cancer, explaining that for her, the only changes are internal.
Stressing the importance of going for smear tests, Hannah affirms that there are very few physical procedures that are nice to go to. However, in her opinion, people should view procedures such as smear tests and prostate checks as routine as going to the dentist.
Maria, 34, a kitchen and bathroom designer from Pembrokeshire, Wales
When she was 25 years old, a smear test discovered that Maria had abnormal cells on her cervix. She was later informed that she had a tumour on her cervix and would have to undergo a full hysterectomy to treat cervical cancer. Maria, whose son was eight years old at the time of her diagnosis, was given the option to freeze her eggs, but chose not to as it would have delayed her treatments. Maria says her body confidence has definitely plummeted as a result of her procedures, while the removal of the top part of her vagina has impacted her sex life.
Maria was diagnosed with cervical cancer at 25 years old (Maria)
Prior to being diagnosed with cervical cancer, Maria says her knowledge of the condition was very, very limited. I knew that it was a cancer and that it was within the female genital organs, and that was probably about it, she says. I didnt know the causes of it. I didnt know anything.
The kitchen and bathroom designer explains that she decided to have a smear test when she began experiencing pain and irregular bleeding. Having had her first smear test at 20, as was routine in Wales, she had waited slightly longer than the recommended three years before having her next one. 
Having been diagnosed on 7 October, on 18 November within a matter of weeks she had undergone a hysterectomy, which not only removed her womb and the top part of her vagina, but also resulted in her going through the menopause in her mid-twenties.
One of my consultants said to me, Youve got to think of the child you have, not the ones you may have in the future
Before the procedure, Maria was given between 24 and 36 hours in which to decide whether or not to freeze her eggs.
One of my consultants very wisely said to me, Youve got to think of the child you have, not the ones you may have in the future. And thats always stuck with me, she says. Its one of those little phrases that Ive always looked back on and thought, Yeah, I made the right decision.
Maria adds that her decision was purely what was right for her and her son, especially considering she did not have a partner at the time.
Theres so many options these days, theres IVF, surrogacy, adoption, fostering, she says. Just because you cant personally have a child doesnt mean you cant be a parent.
Maria chose not to freeze her eggs, so as to not delay her treatment (Maria)
While Maria states she is not the most maternal person, she can understand that if a person without children had been in the same situation as her, they may have opted to have their eggs frozen prior to treatment.
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As part of her treatment, the then-25-year-old had to go through chemotherapy, radiotherapy and brachytherapy. Brachytherapy is a procedure that involves radioactive material being placed inside the body in order to combat cancerous tumours. It is implemented predominantly to treat cervical, womb and prostate cancer, Macmillan Cancer Support explains.
The insertion of radioactive rods resulted in the complete closing up of Marias vagina. This, and the fact that her hysterectomy caused her to have a shortened vagina, has had an impact on her ability to have sex with partners of a certain size.
Ive got a restriction on how big I can have, she explains. I use what they call dilators, which are all different lengths and girths, for about six to eight weeks after brachytherapy. Theyre the sort of shape and size of a test tube, but white plastic.
Theyre not the most pleasant thing to have to do, but if it meant that later on in life I could have a normal sex life, if there is such a thing, then yeah you have to kind of go with it and do it.
Amanda, 29, a veterinary receptionist from the West Midlands
In March 2018, a biopsy for a suspected polyp revealed that Amanda had a cancerous tumour. She did not know a great deal about smear tests or cervical cancer, having previously set aside her invitation for a screening through fear of the unknown and embarrassment. Having undergone five weeks of radiotherapy and chemotherapy followed by three weeks of brachytherapy, Amanda then had an operation to remove potentially cancerous lymph nodes from her pelvis. While she previously said that she never wanted children, no longer having the ability to conceive completely changed how she felt.
Amanda was diagnosed with cervical cancer following a biopsy for a suspected polyp (Amanda)
I feel somewhat lucky in a sense that I had never really wanted children, Amanda says. So to a woman who only dreams of having a family, it must be heartbreaking. But having said that, it has been extremely difficult.
Having been 27 when she was diagnosed with cervical cancer, the now 29-year-old says that it has become difficult for her to watch friends settle down and have families knowing that she is no longer able to become pregnant.
Emotionally, I felt I had failed as a woman and lost all purpose. It was a very dark time, Amanda states as she reminisces about the time of her diagnosis.
Its hard to watch others start families knowing that it will never happen to you
Despite having previously not wanted to have children, Amanda explains that she receives insensitive remarks from other people on the topic all the time.
People ask me if I have children or when Im having children and I try to play it off with, No, I dont want kids. But every so often the person asking wont accept that answer and keeps going on and I have no choice but to tell them that I cant have children, which then makes them feel guilty for asking.
One particularly hard-hitting moment came a few weeks ago, when a woman in Amandas workplace stated that a womans sole purpose in life is to reproduce. I literally felt like I was hit with a bus, Amanda summarises.
Amanda says she regularly receives insensitive comments from people asking whether she wants to have children (Amanda)
The treatments Amanda underwent have had a long-lasting effect on various aspects of her life, one of the main areas being her sex life.
When she first discovered she had cervical cancer, she felt a tremendous amount of guilt towards her partner, as she thought she had taken away his chances of being a father.
Furthermore, the side effects of the brachytherapy meant Amanda had to use dilators to try to stretch her vagina., due to the scar tissue caused by the treatment.
The dilators are cold, hard plastic tubes. Using them felt so medical that that was all I could associate sexual contact with, Amanda explains.
Read more
Having numerous doctors, oncologists, nurses and, at one point, a room full of students prodding around down there really is enough to put you off sex for a long time. And also, I was scared to have sex, as when I tried it was painful.
While Amanda feels as though she is old before her time, she also senses her mental and physical confidence growing every day.
Im starting counselling soon, so Im hopeful that will help me and I can start feeling like a 29-year-old woman again, she states.
If you are one of the unfortunate ones like me and have been told you will be infertile, just remember that having children does not define you as a woman. We can achieve so many great things without being a mother.
Mary, 46, a writer and part-time Morrisons employee from Maidstone, Kent
A decade ago, the results of a routine smear test informed Mary that she had cervical cancer. She had to undergo a radical hysterectomy, in addition to chemotherapy and radiotherapy, which caused vaginal scarring. Three years after her cervical cancer diagnosis, Marys bowel stopped working and she had to have an emergency colostomy bag. While initially intercourse with her husband caused her some pain, the couple of 26 years were able to improve their sex life with the guidance of Marys consultant. She and her husband have a 25-year-old son.
Mary was diagnosed with cervical cancer in 2009 (Mary)
While some women who are diagnosed with cervical cancer may not have much prior knowledge about the condition, this was not the case for Mary. Having had pre-cancerous cells identified in her cervix previously, and having supported a friend who underwent treatment for pre-cancerous cells, she says she was quite well-informed about cervical cancer before her diagnosis in 2009.
Following her diagnosis, Mary was informed that she had to have a hysterectomy, removing her ovaries, a section of tissue around her pelvis, the top of her vagina, 27 lymph nodes in her thighs, her cervix and her womb, all through keyhole surgery. 
She and her husband, to whom she has been married for 12 years, had already decided they did not want any more children, as their son was 15 years old at the time. The thought of freezing my eggs or finding a surrogate was too much to deal with! Mary says.
Cervical cancer will affect your sex life and fertility, but it neednt define you
However, Mary was concerned that her sex life with her husband would be impacted by her treatment. 
My hubby wasnt bothered. He just wanted me well, she recalls. During treatment we had lots of cuddles. I was too ill for anything else. He would help me bathe and looked after me.
In the years following Marys treatment, she experienced a loss in her sex drive, in addition to feeling sore and dry in her vagina. She was also on HRT (hormone replacement therapy) and had to use dilators in order to try and stop the vaginal scarring caused by her procedures.
Using an inflatable dildo helped immensely hubby found one online it was softer and more flexible, she states. In fact, as a couple we are trying to find or create a dildo specifically for women who are suffering from vaginal scarring.
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The drug used in the trial belongs to a group known as NKB antagonists (blockers), which were developed as a treatment for schizophrenia but have been sitting on a shelf unused, according to Professor Waljit Dhillo, a professor of endocrinology and metabolism
19/40 Doctors should prescribe more antidepressants for people with mental health problems, study finds
Research from Oxford University found that more than one million extra people suffering from mental health problems would benefit from being prescribed drugs and criticised ideological reasons doctors use to avoid doing so.
20/40 Student dies of flu after NHS advice to stay at home and avoid A&E
The family of a teenager who died from flu has urged people not to delay going to A&E if they are worried about their symptoms. Melissa Whiteley, an 18-year-old engineering student from Hanford in Stoke-on-Trent, fell ill at Christmas and died in hospital a month later.
21/40 Government to review thousands of harmful vaginal mesh implants
The Government has pledged to review tens of thousands of cases where women have been given harmful vaginal mesh implants.
22/40 Jeremy Hunt announces ‘zero suicides ambition’ for the NHS
The NHS will be asked to go further to prevent the deaths of patients in its care as part of a zero suicide ambition being launched today
23/40 Human trials start with cancer treatment that primes immune system to kill off tumours
Human trials have begun with a new cancer therapy that can prime the immune system to eradicate tumours. The treatment, that works similarly to a vaccine, is a combination of two existing drugs, of which tiny amounts are injected into the solid bulk of a tumour.
24/40 Babies’ health suffers from being born near fracking sites, finds major study
Mothers living within a kilometre of a fracking site were 25 per cent more likely to have a child born at low birth weight, which increase their chances of asthma, ADHD and other issues
25/40 NHS reviewing thousands of cervical cancer smear tests after women wrongly given all-clear
Thousands of cervical cancer screening results are under review after failings at a laboratory meant some women were incorrectly given the all-clear. A number of women have already been told to contact their doctors following the identification of procedural issues in the service provided by Pathology First Laboratory.
26/40 Potential key to halting breast cancer’s spread discovered by scientists
Most breast cancer patients do not die from their initial tumour, but from secondary malignant growths (metastases), where cancer cells are able to enter the blood and survive to invade new sites. Asparagine, a molecule named after asparagus where it was first identified in high quantities, has now been shown to be an essential ingredient for tumour cells to gain these migratory properties.
27/40 NHS nursing vacancies at record high with more than 34,000 roles advertised
A record number of nursing and midwifery positions are currently being advertised by the NHS, with more than 34,000 positions currently vacant, according to the latest data. Demand for nurses was 19 per cent higher between July and September 2017 than the same period two years ago.
28/40 Cannabis extract could provide new class of treatment for psychosis
CBD has a broadly opposite effect to delta-9-tetrahydrocannabinol (THC), the main active component in cannabis and the substance that causes paranoia and anxiety.
29/40 Over 75,000 sign petition calling for Richard Branson’s Virgin Care to hand settlement money back to NHS
Mr Bransons company sued the NHS last year after it lost out on an £82m contract to provide childrens health services across Surrey, citing concerns over serious flaws in the way the contract was awarded
30/40 More than 700 fewer nurses training in England in first year after NHS bursary scrapped
The numbers of people accepted to study nursing in England fell 3 per cent in 2017, while the numbers accepted in Wales and Scotland, where the bursaries were kept, increased 8.4 per cent and 8 per cent respectively
31/40 Landmark study links Tory austerity to 120,000 deaths
The paper found that there were 45,000 more deaths in the first four years of Tory-led efficiencies than would have been expected if funding had stayed at pre-election levels.
On this trajectory that could rise to nearly 200,000 excess deaths by the end of 2020, even with the extra funding that has been earmarked for public sector services this year.
32/40 Long commutes carry health risks
Hours of commuting may be mind-numbingly dull, but new research shows that it might also be having an adverse effect on both your health and performance at work. Longer commutes also appear to have a significant impact on mental wellbeing, with those commuting longer 33 per cent more likely to suffer from depression
33/40 You cannot be fit and fat
It is not possible to be overweight and healthy, a major new study has concluded. The study of 3.5 million Britons found that even metabolically healthy obese people are still at a higher risk of heart disease or a stroke than those with a normal weight range
34/40 Sleep deprivation
When you feel particularly exhausted, it can definitely feel like you are also lacking in brain capacity. Now, a new study has suggested this could be because chronic sleep deprivation can actually cause the brain to eat itself
35/40 Exercise classes offering 45 minute naps launch
David Lloyd Gyms have launched a new health and fitness class which is essentially a bunch of people taking a nap for 45 minutes. The fitness group was spurred to launch the napercise class after research revealed 86 per cent of parents said they were fatigued. The class is therefore predominantly aimed at parents but you actually do not have to have children to take part
36/40 ‘Fundamental right to health’ to be axed after Brexit, lawyers warn
Tobacco and alcohol companies could win more easily in court cases such as the recent battle over plain cigarette packaging if the EU Charter of Fundamental Rights is abandoned, a barrister and public health professor have said
37/40 ‘Thousands dying’ due to fear over non-existent statin side-effects
A major new study into the side effects of the cholesterol-lowering medicine suggests common symptoms such as muscle pain and weakness are not caused by the drugs themselves
38/40 Babies born to fathers aged under 25 have higher risk of autism
New research has found that babies born to fathers under the age of 25 or over 51 are at higher risk of developing autism and other social disorders. The study, conducted by the Seaver Autism Center for Research and Treatment at Mount Sinai, found that these children are actually more advanced than their peers as infants, but then fall behind by the time they hit their teenage years
39/40 Cycling to work could halve risk of cancer and heart disease
Commuters who swap their car or bus pass for a bike could cut their risk of developing heart disease and cancer by almost half, new research suggests but campaigners have warned there is still an urgent need to improve road conditions for cyclists.
Cycling to work is linked to a lower risk of developing cancer by 45 per cent and cardiovascular disease by 46 per cent, according to a study of a quarter of a million people.
Walking to work also brought health benefits, the University of Glasgow researchers found, but not to the same degree as cycling.
40/40 Playing Tetris in hospital after a traumatic incident could prevent PTSD
Scientists conducted the research on 71 car crash victims as they were waiting for treatment at one hospitals accident and emergency department. They asked half of the patients to briefly recall the incident and then play the classic computer game, the others were given a written activity to complete. The researchers, from Karolinska Institute in Sweden and the University of Oxford, found that the patients who had played Tetris reported fewer intrusive memories, commonly known as flashbacks, in the week that followed
Having been told that the radiotherapy would likely cause scarring that could get worse, having sex with her husband left Mary in immense pain, as she explains that it felt as though she had a huge graze inside of her.
Her consultant recommended using lubricant, and Macmillan nurses advised that Mary and her husband find water-based lube. Since then, Mary says she and her husband have a great sex life.
Its a lot to take in when youre told you have cancer and then told you may experience more symptoms and problems, Mary says.
Keep talking and take time to find out whats right for you.
You can contact the Jos Cervical Cancer Trust free helpline on 0808 802 8000. Click here to check the helpline opening times.