Enjoying sex after cancer for young people
Read about the author Samantha Evans
Every year around 2,200 15 to 24 year olds are diagnosed with cancer in the UK. This group is known as teenage or young adult or TYA. Cancer is more common in TYA than in children but relatively rare compared to cancer in adults.
The impact of having a cancer diagnosis for anyone can be devastating, but many people are living amazing lives after treatment and beyond, including TYA.
However, one aspect of the effects of cancer treatment is being overlooked for this age group, and that is sex and relationships. A Clic Sargent online survey of 125 young people diagnosed with cancer asked about the impact of the illness on their personal and sexual relationships.
The results showed that young people are more than 50% likely to have questions about relationships and sex after they are diagnosed with cancer, suggesting that many questions go unanswered. Young people are struggling to find the information they need after a cancer diagnosis, compared to finding answers to their questions when they were well.
As a result, Clic Sargent have a sex and relationship Agony Uncle, Matt Whyman, who offers advice to the questions TYA may ask about sex and cancer.
Sex Education and Young People
A new report on Sex and Relationships Education entitled Shh… No Talking, launched by Terrence Higgins Trust (2016), found that this generation of young people have been taught poor SRE that is infrequent, low quality and almost never LGBT inclusive.
They found that from over 900 young people aged 16-24, 75% had not been taught about consent, 95% had not learned about LGBT sex and relationships, 89% were not taught about sex and pleasure and 97% missed out on any discussion around gender identity.
Where SRE is being taught, it is often outdated and irrelevant for today’s young people who turn to the internet for their information.
Negotiating your teenage years is a minefield with the normal worries many teenagers experience from emotional turmoil, raging hormones, sexual confusion and relationships, so it’s hard to imagine growing up during this time when you are diagnosed with cancer and worrying if you will ever have a relationship.
Many TYA who have cancer shy away from having a serious relationship because they are too anxious to explain how their illness makes them feel. Many are upset by the way in which their body looks from losing their hair and weight gain, to the scars left behind after treatment and surgery.
Talk to your Doctor
Like many people, not just young adults, they struggle to ask their doctor embarrassing questions, leaving them uninformed and worried about what is happening to their body. If you don’t feel comfortable talking to your doctor or consultant, speak to your clinical nurse specialist who can offer you more advice about sexual issues and any anxieties you may have.
Being able to talk about sexual issues can be difficult, leading to relationship strain, in addition to dealing with a cancer diagnosis. However some people find their relationship becomes stronger as they confide their fears and worries about sex and intimacy.
The impact of cancer upon your sexual function
How cancer impacts upon someone’s sex life also depends on the type of cancer they have as some cancers such as gynaecological, breast, bowel, genital and prostate cancer can impact more upon sexual function than other cancers.
Testicular cancer is unusual compared to other cancers because it mainly occurs in younger men. It accounts for just 1% of all cancers that occur in men but is the most common type of cancer in men aged 15-49 years.
It is one of the most treatable forms of cancer with more than 96% of men with early stage testicular cancer being completely cured. Even in more advanced cases where the cancer has spread to nearby tissue, there is an 80% chance of being cured.
Impact on fertility for men and women
Treatment for testicular cancer can include surgical removal of the affected testicle and chemotherapy. Both treatments have side effects which can affect sexual function. Fertility options should be discussed with the young person to make them aware of what treatment is available when they want to or are thinking about starting a family.
Gynaecological cancers can affect younger women, impacting upon their sexual function and fertility. Sexual side effects include vaginal tightness, vaginal dryness, decreased sexual sensation, loss of fertility and low libido.
A new Psycho-Oncology analysis of the published literature (2017) indicates that many cancer patients are not receiving support for fertility sparing choices or advice and recommends that all cancer patients of reproductive age should be provided with fertility information and referrals for fertility preservation. One of the reasons is that oncologists oncology may lack appropriate fertility knowledge and be unsure whose role it is to provide fertility support.
The impact upon younger people is often neglected, especially women who experience an early menopause as a result of treatment and the effects of hair loss on body image. This can affect how they make relationships and overcome loss of fertility.
Younger women who have cancer can experience a surgical or medical menopause, which can affect their sex lives. Coping with a cancer diagnosis and going through debilitating treatment, to be left with a low or no libido and physical symptoms, is life changing. Some women are sadly infertile after treatment, impacting further upon their health.
More advice is needed for younger women about their fertility and what options are available to them to preserve their fertility. This is often overlooked or considered an afterthought when younger women have a cancer diagnosis but being unable to have children affects both your physical and mental health, which in turn, impacts upon recovery and quality of life post treatment.
A new survey by Breast Cancer Care (2016) found that 53% of younger women were not given the chance to discuss the possible impact of their treatment on fertility despite national guidelines recommending younger women should be offered fertility preservation before starting breast cancer treatment.
The Royal College of Obstetricians and Gynaecologists published a scientifc paper about Fertility Sparing Treatments in Gynaecological Cancer (February 2013) offering options for women undergoing gynaecological cancer treatment and surgery.
The Cancer and Fertility UK Campaign has been set up by Becki McGuinness who was left infertile by aggressive cancer treatment when she was just 23-years-old. Now 30, she has launched a national campaign to ensure women facing cancer are given all the fertility options she should have been offered which would have preserved her fertility.
Sexual Health Advice for LBGT people with cancer
Often sexual advice is focused on heterosexual people with cancer, disregarding the sexual experiences of lesbian, gay, bisexual and transgender individuals, despite them experiencing the same sexual problems following cancer.
The impact on fertility may not be an issue for some lesbian or gay people but some people want to have a family and shouldn’t be dismissed by healthcare professionals.
Body image is hugely important to many people and losing your hair or being left with scars on your body can greatly affect your body confidence and relationships.
The LGBT Foundation have collaborated with Macmillan to create an informative booklet supporting Lesbian, Gay, Bisexual and Trangender People affected by Cancer.
Prostate UK have created a booklet for gay and bisexual men
Body Image
Losing your hair
One of the biggest worries is losing your hair when you have cancer. For some, it doesn’t matter that much but for other TYAs this can feel devastating. Wearing wigs, hats or scarves can help, with some young people embracing this temporary change to their appearance. Hair grows back very quickly and some people even find it’s more vigorous than before treatment. Several of my friends have said one positive thing about hair loss is the need to wax or shave their legs and bikini line disappears!
Scars
The impact of scars can be difficult to deal with but scars do fade over time, and there are many good concealers that you can use to cover them up if you feel self conscious. Explaining your scars to a new partner can be difficult but you will find that if they care about you, they will be understanding.
Having a mastectomy
Research from Breast Cancer Care (2018) has found that eight in 10 women diagnosed with breast cancer say they are unhappy with their sex lives after undergoing treatment. 83% of those surveyed had been diagnosed over three years ago, suggesting that some women continue to struggle for a long time without support.
Having a breast removed after cancer can be hard, with many young women feeling they have lost their sexuality. Any form of cancer can impact upon a person’s sexuality but it can be more problematic after breast cancer, because the breasts are intimately connected with sexual attractiveness and erotic play.
Some women feel uncomfortable being naked in front of their partner or feel discomfort when touched by their partner, either on the site of their surgery or in their genital area, often as a result of chemotherapy and drug therapy which can make these parts of the body sensitive or painful.
Many women mourn the loss of their breast, others rejoice that it has gone with their cancer. Feeling self conscious about the way you look is common, but many people do not even realise that you have undergone a mastectomy. Confronting the physical changes to your body is important and will enable you to feel confident about how you look. Involving your partner in this process can help too.
Weight gain
Gaining weight can often be a result of treatment, being less active or eating more when you feel anxious. This can lead to low self esteem, but changing your eating habits and taking regular exercise such as walking can help control weight gain, improve your overall sense of well-being and speed up your recovery. Exercising has been proven to help recovery and coping with side effects of chemotherapy. Getting friends and family involved in exercising can be beneficial in boosting your fitness but also giving you time to talk too.
Colostomy/ileostomy bag
Younger people affected by bowel cancer may have to have a temporary stoma bag following surgery to allow their bowel to heal. This can be extremely distressing and affect their relationships. Worrying about leaks and the smell can be stressful. However, your stoma nurse can allay any fears you may have and show you how to care for your stoma.
Hannah Witton, a sex educator has been vlogging about her experience of living with a stoma and offering really useful tips and advice about how she enjoys sexual intimacy with her partner.
Overcoming sexual problems
For some young people, physical sexual issues impact upon their sex lives from experiencing an early menopause which can cause vaginal dryness, low libido, hot flushes and mood swings, vaginal tightness as a result of surgical intervention or radiotherapy, decreased sexual sensation which may affect your ability to orgasm and erectile dysfunction for men.
However many of these sexual issues can be overcome through getting the right information and treatment to help you enjoy a great sex life, whatever that may be.
Surgical or medical menopause
Many of the side effects of cancer treatments can bring about symptoms of the menopause which can be distressing. Hot flushes, night sweats and vaginal dryness can affect your sexual relationships. Menopausal symptoms often affect younger women who have had breast or gynaecological cancers, making them mourn not only the loss of their breast, ovaries or uterus but also their sexuality through changes to their sexual function. Counselling can help women find ways of dealing with this.
However many younger women struggle to get the right avice or even appropriate advice for their age as much of the literature/sex advice is aimed at older women going through a natural menopause.
The Daisy Network offers great support for young women experiencing the menopause.
Infertility
The impact of cancer treatment on your fertility will depend on the treatment. Therefore, discussing all your fertility options prior to treatment is important such as freezing your eggs or sperm or egg donation and your consultant or Oncology Nurse Specialist will be able to offer help and advice as to what you can do.
Guidance from the National Institute for Health and Care Excellence (NICE) states that women with breast cancer should have the chance to discuss the impact of cancer and its treatment on future fertility and offered fertility preservation options including embryo and egg freezing if their breast cancer treatment may lead to infertility.
If this is not discussed with you during any consultation, raise the topic with your consultant or clicnical nurse specialist to ensure you get the right information about your fertility preserving options, whatever type of cancer you have.
Negotiating your relationship
Meeting that someone special when you are a young adult or teenager can be pretty scary and exciting at the same time. Many TYA worry about how they can tell their new partner about their cancer but being honest and explaining about what you’ve been through or are going through is the best way.
Often it is a lack of understanding about cancer that frightens people so informing them about your illness can help them overcome any fears they may have too.
Those who can’t take this information onboard probably aren’t mature enough to cope with it which is sad but it may make your relationship difficult to continue.
Enjoying sexual intimacy and pleasure
When you start having sex as a young person it’s a matter of exploration and finding what works for you. Sex education is poor in the UK and even with calls for it to be compulsory, what is being taught has to be relevant to young people.
Overcoming your body image issues can be hard but talk to your partner about how you feel, allow them to caress your scars, tell them where it feels comfortable to be touched, what feels painful or tender and where you have decreased sensation. Change positions to find one that suits you, use cushions and pillows to make yourself comfortable, you don’t need to stick to your bed for sex.
Practical solutions to enjoying sex
Sex isn’t just about penetration, it’s whatever feels good, pleasurable and consensual. So become a foreplay expert, discovering new ways to experience great sexual pleasure through mutual masturbation, massage, using light bondage, reading erotica or watching erotic films together.
It is important to remember that not everyone is in a relationship but still wants to enjoy sexual pleasure and ensure that they will be able to enjoy sex if and when they do meet someone.
Lydia Brain who had womb cancer when she was 24 says,
“From experience, I found a lack of information on how to safely and enjoyably get back into sex post surgery, and much of the information out there is for heterosexual couples. I am single and have, for the most part, muddled through following my instincts. There is no one quick fix or light bulb idea that will suit everyone because we are all different”.
Invest in a sex toy to play together or for solo pleasure, showing your partner where you like to be touched. Sex toys aren’t just for women, there are some great male products for you to enjoy and enhance your sex play with.
Sex toys are only recommended for people aged 18 and over.
Vaginal Dryness
Vaginal dryness tends to be a menopausal symptom and therefore often a result of cancer treatment, especially after gynaecological or breast cancers but many women, young or old, suffer from vaginal dryness at some time during their life. Hormonal changes after childbirth, the menstrual cycle, stress, and the menopause can cause vaginal dryness.
Sex should never be painful so using a good quality lubricant is essential. Don’t think using a sexual lubricant as a problem, but just as a way to enjoy more pleasurable sex.
When choosing a sexual lubricant or sex toy, consider what it is made from, just as you would when choosing cosmetics and personal hygiene products. Many people are unaware that some lubricants and sex toys can be harmful to health due to the type of material they are made from and can cause allergic reactions, leading to irritation, burning, stinging and vaginal thrush.
Having cancer treatments can lower your immunity to infections, therefore be more vigilant about what sexual lubricants you use as many contain parabens, including some available on prescription from your GP. YES organic water based lubricant is available on prescription so ak your GP.
You may need to try a few lubricants to find one that suits your needs, rather than just sticking with one your GP has prescribed. Ask to change to a different one if you don’t find it helpful.
Using an oil based lubricant first and applying a water based one on the top creates a double glide affect, which feels more comfortable and can help sex last longer. However, oil based lubricants are not condom compatible so stick to water based lubricant if you are using condoms.
Some people prefer a silicone lubricant which feel more slippery and can be used with condoms, making it a great alternative to oil based lubricants. It’s also great for anal play too.
Vaginal Tightness and Scarring
Some healthcare professionals suggest that you buy a sex toy to help any sexual problems following cancer treatments as some may cause vaginal tightness and surgery can leave scar tissues which can feel tight, making penetrative sex feel uncomfortable or painful. Using lots of lubricant and a slim vibrator can really help. Many women are prescribed medical dilators to help stretch their vaginas which can feel uncomfortable.
Combining medical dilators and vibrators offers different experiences for many women. Medical dilators can help to stretch the tight tissues of the vagina whilst a vibrator can promote blood flow to the healing tissues and feel pleasurable too, especially on the clitoris.
Using a slim vibrator can help promote healing of scar tissue by increasing the blood supply to the area. Gentle manipulation of the vibrator over the scarred area can help to stretch the tissue, make it feel less tight. It can also promote the production of vaginal secretions, lubricating the vagina and making it feel more comfortable. Using a good quality lubricant nourishes the scar tissue and can speed the healing process.
Decreased Sexual Sensation
Using a vibrator can increase sensation in the affected area which may have diminished following surgical or medical intervention or drug therapy. The gentle vibrations can stimulate the numerous nerve endings in the clitoris and vagina, creating waves of pleasure, thus enabling the woman to recognise pleasurable sensation rather than experiencing pain or discomfort.
By exploring your body in this way, it can help you to recognise what feels good and what doesn’t, which in turn, will help you guide your partner during sex.
When penetrative sex isn’t possible, using sex toys as part of your sex play can enhance sexual stimulation, allowing you to enjoy sexual pleasure and intimacy. Both male, female sex toys and couples toys are fun to use and often offer different sexual sensations from penetrative sex.
Sex toys can help Erectile Dysfunction
Some men may develop temporary erectile dysfunction following surgery and medical treatment after testicular cancer, either as a direct result of surgical intervention or as a result of anxiety, stress and performance issues. Using male sex toys, such as a cock ring, male masturbators or vibrators can help overcome these problems.
At Jo Divine we believe that sexual health and sexual pleasure go hand in hand and have created a health brochure with suitable products to help people with sexual issues. Working with medical professionals, we hope to encourage patients and HCPs alike in talking more freely about sexual problems that can occur following cancer treatments.
So don’t give up on your sex life when you have cancer, there are so many ways to overcome any problems that may occur to enjoy great sexual intimacy and pleasure.
Young people blogging about their experience living with cancer
Becki is 30 and blogs about coping with the daily side effects of Osteosarcoma even though she is 7 years in remission : www.copingwiththebigc.co.uk. She has also set up www.cancerandfertility.co.uk to raise awareness about all the fertility options she wasn’t infomred bout before her treatment.
Lydia Brain was diagnosed with a inflammatory myofibroblastomic tumour in her uterus at the age of 24. Undergoing surgery she was put into a surgical menopause and is infertile. As an advocate and campaigners for GRACE and Trekstock champion she is using her experience to raise awareness about having womb cancer as a young woman, recognising the symptoms and why HCPs need to take notice of your symptoms whatever your age. You can follow Lydia @lid_jar
Karen Hobbs blogs at “quarterlifecancer.com” about having cervical cancer. She also has an amazing comedy show “Tumour Has It” which takes you on her journey of having cervical cancer at the very young age of 24.
Useful websites
Clic Sargent : www.clicsargent.org.uk
Trekstock : www.trekstock.com
Shine Cancer Support : www.shinecancersupport.org
GRACE: Gynae-Oncology Clinical Research and Excellence: www.grace-charity.org.uk
Womb Cancer Support : www.wombcancersupportuk.weebly.com
The Eve Appeal : www.eveappeal.org.uk
Jo’s Trust : www.jostrust.org.uk
Ovarian Cancer Action : www.ovarian.org.uk
Macmillan : www.macmillan.org.uk
Young Womens Breast Cancer blogspot : www.youngwomensbreastcancerblog.blogspot.co.uk
Breast Cancer Care : www.breastcancercare.org.uk
LGBT Foundation : www.lgbt.foundation
Bowel Cancer UK : www.bowelcanceruk.org.uk
The Daisy Network :www.daisynetwork.org.uk
The Dovecote:www.thedovecote.org
College of Sex and Relationship Therapists : www.cosrt.org.uk
Jennifer Young : www.beautydespitecancer.co.uk
RecoBra : www.recoheart.com/recobra-story
LoveMeAndMySecret :www.lovemeandmysecret.com
HipHeadWear : www.hipheadwear.co.uk