Freephone helpline 0808 808 5555 information@lymphomas.org.uk www.lymphomas.org.uk treatment Being diagnosed with lymphoma can be a life-changing event. It is not just all the adjustments you need to make to your home life and working life that the tests and treatments involve your whole outlook on life can change. Having an illness like lymphoma is likely to affect how you feel about yourself and your relationships with other people, including your sexual relationships. In addition, as part of your treatment you might be recommended to have treatment with chemotherapy or with radiotherapy or sometimes with both. Some of these treatments can affect your sexuality how you feel and function sexually. It is important to remember that although these changes can be very distressing at the time, they are usually temporary. Many people find it difficult or embarrassing to talk about their sexual feelings and experiences or about difficulties they are having, even with healthcare professionals but be assured that there is plenty of support available to help you with any concerns or questions you might have. Knowing a bit about what to expect can be a helpful starting point and this information aims to: explain how having lymphoma can affect your intimate and sexual relationships explain how chemotherapy and radiotherapy can affect your interest in sex and in your ability to enjoy sex suggest some practical ways of coping with any sexual difficulties you might experience provide sources of further information and support. This information doesn t discuss in any detail how lymphoma can affect fertility or describe the methods that are used to safeguard your fertility during lymphoma treatment. Contact our freephone helpline (0808 808 5555) if you would like to talk to someone about fertility or if you would like further information about this aspect of your treatment. Sexuality can mean different things to people at different stages of their lives, but for most people it is an important aspect of life. Whether we are young or old, gay, straight or bisexual, in a relationship or single, being able to acknowledge and express our sexuality is important to us. 1/8
Our sexuality is not just the physical sexual act it is one of the ways we experience ourselves as people, it gives us our sense of self, how we see ourselves. It is interlinked with how we express ourselves, how we look, what we wear, how we behave, our relationships. Some people with lymphoma have told us that their doctors and nurses never asked them about their sexuality or warned them about the changes that could happen and that they didn t feel able to discuss their concerns. Your doctors and nurses are there to help you, however, so try to talk to them about any anxieties or problems you have. You shouldn t feel it is not important enough to mention. Your medical team might be able to help you or they might refer you to someone else who can. Some people will experience sexual difficulties when they are ill or undergoing treatment; many people lose all interest in sex during this time and for a while afterwards. For most people, knowing what to expect and knowing who to contact if they are concerned is all that is needed to get through this time. Other people might benefit from professional support if they experience more severe or longer lasting sexual problems. Sex during treatment There is no reason to stop having sex because you have lymphoma or because you are having treatment. Be assured that you can t pass lymphoma on to another person by having sex with them. Maintaining an active sex life if you want to can give you a boost, both emotionally and physically. Ask your medical team if there are any specific precautions you should take if you are currently on treatment, however. You might be advised not to have penetrative sex if your blood counts are low as a result of chemotherapy, for example. This is because of the increased risk of bruising and bleeding if your platelet count is low and because you are at increased risk of infection if your white blood cell count is low. There are also some precautions you will be advised to take if you are on chemotherapy in order to protect your partner. Traces of chemotherapy drugs can remain in your body fluids (such as semen and vaginal fluids) for about 5 days after each treatment. You will be advised that you should protect your partner from being exposed to these drugs by using a barrier contraceptive (condoms or femidoms) during this time. You should also avoid oral sex during these 5 days. If you are having sex during your treatment, it is important for both men and women to start or continue with a form of contraception in order to avoid pregnancy. This is because the treatments can cause changes that can be harmful to an unborn baby. In addition, it is difficult to treat someone who has lymphoma if they are pregnant. Women are usually advised to wait for approximately 2 years after the end of their treatment before getting pregnant. Men are advised to wait for about 3 months (some doctors advise waiting for as long as 1 year) before getting a partner pregnant. The time you are advised to wait will also depend your individual situation. Please talk to your doctor or nurse if you hope to have children after your treatment is finished. 2/8
Common sexual difficulties You might find that you and your partner experience sexual changes or difficulties, both during and after treatment. This is not uncommon, so don t feel that you are unusual or alone if this happens. These difficulties are sometimes a worsening of sexual problems that were there before you had lymphoma or they might be new problems. Don t hesitate to ask for help if sexual problems are concerning you. Your medical team will have been asked about these problems before and they will be able to help or will refer you to someone who can help you. People who are going through treatment commonly find that they are less interested in sex and this is probably the most common change people notice in their sexuality. It is quite normal to feel this way. A few people feel aroused but have difficulty getting an erection or reaching orgasm this is nearly always temporary and usually resolves once the treatment is finished. There are a number of reasons why you might lose interest in sex or have sexual difficulties during this time, including: your feelings for example if you are feeling frightened, stressed or depressed, if you have lost confidence in yourself or your body, if you feel out of control of your life your partner s feelings their concerns for you and your life together, their fears that you are too fragile or that it would be inappropriate to make love changes in your relationship with your partner you might both find it difficult to adapt, for example to change from being the more caring or supportive partner to the one who now needs support fatigue this is often the main obstacle to keeping your sex life going. Fatigue can be caused by the lymphoma itself, by the treatments and by the emotional and physical effort involved in going for all the tests and treatments changes to your body image and how you feel about this such as loss of your hair, weight loss or weight gain, having a central line (such as a Hickman line). These changes can make you feel less feminine or masculine and less confident, even if your partner tries to assure you that they still find you attractive other physical side effects of treatments, such as nausea, constipation or having a sore mouth. Some treatments can also reduce your desire to have sex (your libido), cause problems getting or keeping an erection or can make sex uncomfortable or painful (see below). Try and talk to your partner about what is happening. Or show them this article. It might help to explain your feelings about sex and why you have lost interest or are finding it difficult. You need to reassure one another that you still love each other and still need physical contact even if you don t want to have sex for a while. Often a simple hug or a cuddle can give a partner a huge amount of reassurance at a time when other things feel so different and uncertain. Your feelings will probably change over the months of your experience of lymphoma and its treatment and if you can communicate how you feel about sex with your partner they will be better able to understand what is happening and support you in this aspect of your life. 3/8
You might still feel interested in sex but find it hard to summon up enough energy or to become aroused. If you are tired, try having sex at different times of the day when you have more energy, rest beforehand or have sex in a less strenuous way, trying positions that are more comfortable for you. There are other ways of showing your affection for one another during this period in your lives. Try and explore physical intimacy that does not involve having penetrative sex, such as oral sex, touching, having a bath together; some people find it helpful to explore the use of sexual aids. It might help to talk to your doctor or nurse about any concerns, fears or sexual problems you have (there is a list of questions you could ask on page 6). Do not be embarrassed most doctors and nurses have undergone training to support you with these concerns. In a few cases they might suggest that you try sexual therapy or medical treatments (see below). You might find that simply talking to a professional person such as a counsellor can help with sexual problems. On page 7 there are organisations listed which can help you to find a counsellor in your area who you could approach. Side effects of lymphoma treatments and your sexuality Some radiotherapy and chemotherapy treatments also have some more specific effects on sexual function, and we will give you some information on these side effects over the next few pages. How lymphoma treatments can affect men s sexual function Men s sexual function, including arousal, erections and ejaculation are very unlikely to be affected by chemotherapy. This is because chemotherapy does not affect the production of testosterone (the male hormone) in the testes. A few chemotherapy drugs, such as vincristine, can affect the nerves in the genital area. This is called neuropathy and this can cause problems with having or maintaining erections in some men. This is known as erectile dysfunction and it usually improves after the treatment is finished. Radiotherapy to the testes and, to a lesser extent, to the pelvic area can reduce the amount of testosterone that is produced by the testes. This can also happen after total body irradiation (which is sometimes given before stem cell transplants). This can decrease a man s libido and cause erectile dysfunction. If your testosterone levels remain very low after the treatment is finished your doctor might prescribe testosterone replacement therapy (by injection or skin patch). If erectile dysfunction doesn t resolve, there are treatments that you can be given to help with this, including tablets (such as sildenafil, also known as Viagra but always seek medical advice before using this drug), penile injections, vacuum pumps and penile implants. These are described more fully in Macmillan s Sexuality and cancer booklet (contact details on page 7). Men can also experience painful ejaculation if they have had radiotherapy to the pelvic area recently. This is because the radiation can make the urethra (the tube the urine and semen pass through in the penis) temporarily inflamed. This usually begins to improve once the treatment is finished. 4/8
Some men experience dry ejaculations after having radiotherapy to the pelvic area. This can be a bit uncomfortable but passing urine before sex has been found to help some men. The feeling of orgasm may change, but it can be just as pleasurable as before. There are assisted fertility techniques available to help you and your partner to become pregnant if dry ejaculation persists and causes fertility problems. If you have developed a complication of allogeneic (donor) stem cell transplantation called graft-versus-host disease or GVHD you can have penile problems, pain and erectile problems. Your medical team should be able to refer you for specialist help, so don t hesitate to mention any problems to them. How lymphoma treatments can affect women s sexual function Some chemotherapy drugs and radiotherapy to the pelvic area can interfere with the production of hormones and eggs in the ovaries. As well as your menstrual periods becoming irregular or stopping, this can cause menopause-like symptoms such as vaginal itching, burning and dryness. This can make penetrative sex uncomfortable or even painful. There are lubricant and moisturising products available that can be put into the vagina to help relieve these symptoms and make sex less uncomfortable. Some of these have to be prescribed by your doctor, such as the hormonal creams, Ovestin and Gynest. Others can be bought in chemists or online, such as the non-hormone gels, Replens MD and Sylk (these are also available on prescription from the hospital or GP). Sylk contains kiwi fruit derivatives so avoid this if you are allergic to kiwi fruit. There are many water-based lubricants you can buy, including Astroglide and lubricants from the Durex range. These are available at most chemists and many supermarkets. Olive oil BPC is a good, cheap alternative and can be bought at the chemist (but can t be used with latex condoms because the oil damages the condom, which can then split). These problems of vaginal dryness and discomfort usually resolve and most women are able to resume having sex more comfortably within a few weeks of the end of treatment. If you experience an early menopause you might need longer lasting treatment to help with vaginal dryness. Please telephone the helpline (0808 888 5555) if you would like more information on early menopause. Because of the changes that lymphoma treatments can cause in the vagina, some women develop vaginal infections (thrush) during their treatment for lymphoma. If a thrush infection develops you might notice itchiness around your vulva area and a creamy-white discharge. In addition, sexual intercourse can be more uncomfortable or even painful. Anti-thrush treatments are available on prescription from your GP and also over the counter from chemists. Your partner should be treated too if you have had sexual contact with them. If sex becomes very painful or if you notice unexpected bleeding when you have sex you should consult your doctor for an examination. They can advise you on whether it is safe to continue having sex and might suggest treatment for any infection or inflammation that has developed. 5/8
Although this is not common after radiotherapy for lymphoma, radiotherapy to the pelvic area occasionally affects the vagina more severely. This can cause narrowing or scarring of the vagina, which can lead to longer lasting sexual difficulties. Your medical and nursing team will be able to give you advice on how you can minimise the effects of this and suggestions on how to manage any sexual difficulties that it causes. Radiotherapy to the pelvis can also sometimes reduce women s levels of sexual desire because of reduced hormone levels in the ovaries. Speak to your team if you feel this is a problem for you. Women who develop GVHD after an allogeneic stem cell transplant can have problems with vaginal inflammation and narrowing, which make sex painful. As with men, seek help from your team if you are experiencing these symptoms. Getting support If you have a partner it is important to discuss your feelings about sex if you feel able to do this. Don t hesitate to mention sexual difficulties to your medical team, your clinical nurse specialist or your GP. They will not regard any questions or problems you have about sex as trivial and they are good sources of information, treatment and support. Some people don t like to talk to people they know about sexual matters. You are welcome to contact our confidential helpline if you would like to talk to someone about sexual problems you are experiencing (0808 808 5555). The organisations listed on page 7 are also useful sources of information and some offer counselling services or can advise you about what is available in your area. Acknowledgements We are grateful to Dr Josie Butcher, Consultant and Director of the Psychosexual Medicine and Therapy Service, Cheshire and Wirral Partnership NHS Foundation Trust and to Dr Barry Quinn, Macmillan Consultant Lead Nurse for Cancer and Palliative Care, Ashford and St. Peter s Hospitals NHS Foundation Trust for reviewing this article. We are also grateful to Dr Woet Gianotten, Consultant in Oncosexology in the Netherlands and co-founder of the International Society for Sexuality and Cancer for his help with this article. Questions to ask about sexuality Can I continue to have sex during treatment? Is it safe? What contraception should I use? Are there any other precautions I should take? Will the treatment affect my ability to have and enjoy sex? If so, how long could this last? Is there any help available if I/we develop sexual problems? Is there someone I can speak to about this? Are there suitable counsellors in this area? Where can I get information about fertility and family planning? 6/8
Useful organisations Cancer Help UK Angel Building 407 St John Street London EC1V 4AD 0808 800 4040 (cancer information nurses) via website www.cancerhelp.org.uk College of Sexual and Relationship Therapists (COSRT) Has a list of qualified COSRT members who offer a range of treatments encompassing sex therapy, psychosexual therapy and relationship therapy. PO Box 13686 London SW20 9ZH 020 8543 2707 info@cosrt.org.uk www.cosrt.org.uk Macmillan Cancer Support Produce a useful and comprehensive booklet, Sexuality and cancer. 89 Albert Embankment London SE1 7UQ 0808 808 0000 via website www.macmillan.org.uk Relate Relate s services include relationship counselling for individuals and couples and sex therapy. They have 70 centres across the country and a network of counsellors and can also provide telephone and online counselling. Premier House Carolina Court, Lakeside Doncaster DN4 5RA 0300 100 1234 www.relate.orluk References Goodhart F, Atkins L. 2011. The cancer survivor s companion: practical ways to cope with your feelings after cancer. London: Piatkus. Sadovsky R, et al. Cancer and sexual problems. Journal of Sexual Medicine, 2010. 7: 349 373. Schover L. Sexuality and fertility after cancer. 1997. New York: John Wiley and Sons Inc. British Medical Association and the Royal Pharmaceutical Society of Great Britain. British National Formulary. 64 th edition, September 2012. Hordern A, Street A. Issues of intimacy and sexuality in the face of cancer: the patient perspective. Cancer Nursing, 2007, 30: E11 E18. 7/8
How we can help you We provide: a free helpline providing information and emotional support 0808 808 5555 (9am 6pm Mondays Thursdays; 9am 5pm Fridays) or information@lymphomas.org.uk free information sheets and booklets about lymphoma a website with forums and a chatroom www.lymphomas.org.uk the opportunity to be put in touch with others affected by lymphoma through our buddy scheme a nationwide network of lymphoma support groups. How you can help us We continually strive to improve our information resources for people affected by lymphoma and we would be interested in any feedback you might have on this article. Please visit www.lymphomas.org.uk/feedback or email publications@lymphomas.org.uk if you have any comments. Alternatively please phone our helpline on 0808 808 5555. We make every effort to ensure that the information we provide is accurate but it should not be relied upon to reflect the current state of medical research, which is constantly changing. If you are concerned about your health, you should consult your doctor. The Lymphoma Association cannot accept liability for any loss or damage resulting from any inaccuracy in this information or third party information such as information on websites which we link to. Please see our website (www.lymphomas.org.uk) for more information about how we produce our information. Lymphoma Association PO Box 386, Aylesbury, Bucks, HP20 2GA Registered charity no. 1068395 Produced 12.10.2012 Next revision due 12.10.2014 8/8