Moving Forward from a Cancer Diagnosis

The impact of a diagnosis of cervical cancer is a big challenge for any woman. For those of you who have finished treatment you may feel a sense of relief. However hearing, “We’ll see you in three months” might have made you feel a little abandoned by the doctors and nurses that supported you. You may be feeling a tad bewildered and still in shock after your diagnosis and treatment. From listening to people who have been through the cancer experience, professionals and researchers know that many individuals will be feeling as you do [1] [2] [3] [4]. Getting back to everyday life after living through a cancer diagnosis and treatment is a big deal. And, as you know, diagnosis and treatment for cervical cancer brings its own challenges.

We hope that the following information on living with the impact of cervical cancer will help you begin to put the pieces of your life back together. In addition to this information our support services can help you meet other women who will understand what you are going through. Our online forum is accessible 24 hours a day. We may also have a support group near you that can put you in touch with other women who have been through similar experiences. Many women who have been through cancer find meeting others a huge support

Finding a New Normal

That day out with your best friend, the really important business meeting, the family holiday you were all looking forward to. A diagnosis of cervical cancer interrupts plans and puts life on pause. No matter when in your life you get the news, it brings stress and lots of questions as cancer always does.

Whatever age you are, cervical cancer hits your femininity like nothing else. Let’s face it, the tests and treatment you have to have are invasive. Your medical team looked at and treated parts of your body that are usually private. This was not what you had next on your To Do list. This was not what you wanted to have happen.

But you got through it – the biopsies, the surgery, the chemotherapy, the radiotherapy. Somehow you clenched your teeth, took a deep breath and you have finished your treatment. But what happens now? How do you take on the challenge of everyday life again?

You will find information here on ‘finding a new normal’. This will be different for everyone. The way you will respond to life after treatment for cervical cancer will be a personal one. However, there are certain issues that are helpful to know about and that women say they would have liked to have known. We have included that information on these pages.

 

Physical healing

It takes time to adjust to life after treatment. Whatever treatment you have had, you will need time to recover. You might feel tired. Your body has gone through a lot. Rest when you need to. It may be a cliché, but it is really important to listen to your body and take things one step at a time.

There will also be physical changes to your body that have been caused by your treatment. These may take time to adjust to. For some women there could be long term side effects that will have an impact on how their body works and feels.

While you’re recovering try to let others help you. Having a friend around for a coffee whilst you are sprawled out on the sofa may actually be a welcome distraction.

After you have been diagnosed with cancer the standard follow up program by your gynae-oncology team will be for a maximum of five years, with the intervals between appointments growing larger as time goes on. This is because after two years the risk of recurrence is reduced. Follow up programs are individually tailored to the treatment received, for example, chemo-radiotherapy patients will have scans in some centers (others not), some are nurse led. Your medical team will let you know what your follow up program is. If you’re feeling worried about any unusual symptoms please do contact your medical team. They will want to know if anything is wrong.

 

Emotional healing

You may still be feeling like, “Will I ever wake up and not think about it?” For some women the emotional impact of cervical cancer is the hardest to heal. Yet, there are so many people out there who can help. So please do not think that hurting is the only way to be. You could start with a chat with your Clinical Nurse Specialist (CNS) at your hospital or your GP. If you are overwhelmed by your feelings, speaking to a professional trained in providing emotional support may help you through this difficult time.

 

Sex and intimacy

Many women’s sex lives are interrupted by cervical cancer. You will need to put this part of your life back together slowly. Your sex life can alter as a result of physical changes caused by the treatment you have had. Physical problems that women report after cervical cancer treatment can include: loss of desire to have sex, pain during sex, having an orgasm can be difficult to achieve or different compared to before they had treatment. These changes can be caused by hormonal changes, damage from treatment, and psychological and emotional stresses brought on by your diagnosis and treatment.

Your relationship with your partner may have changed as a result of your diagnosis and this may be causing changes in your sex life. You may also now feel very differently about your body and your femininity.

If something has changed there are specialists that can help you. You can discuss the changes you have noticed with your CNS, they should be able to recommend some options to help.

Sex and Intimacy

 

Your sex life probably wasn’t the first thing on your mind when you found out you had cancer or during your treatments. It still may not be a priority or you might be happy with how things are.

It doesn’t matter if you’re 18 or 80, single, in a long-term or casual relationship, or whether you’re attracted to men or women, how you feel sexually may have changed since diagnosis. In our recent sex and relationship survey, 90% of you had experienced changes within your sex life as a result of cervical cancer. Some felt it had improved, but over half of you are not satisfied with how things are now. Some changes to your sex life may require more specialized care, but other changes may be simple to improve and your Cancer Nurse Specialist will be able to offer you support and help.

Whilst this section is about sex, it’s important to remember it is ok to want or not want to be sexual – it’s only a problem if it’s causing a problem for you. If you are currently in a relationship, you may want to read this information with your partner.

Sex isn’t just about the act of intercourse, we’re complex beings us humans (yes men as well!). Things that affect your sex life include what’s happening for you emotionally, socially, personally, culturally and physically.

Your thoughts and feelings towards sex may have changed, for instance:

Treatments may affect how you view your body and/or how your body works
Where you are in the cancer journey will also impact on sex
Your relationships may have altered. It’s normal to go off sex at times of stress and fear and it can follow that you start to avoid other forms of intimacy as well. Changes in your sex life can be caused by both physical and emotional issues

“Normal” sexual response or what happens to your body during sexual encounters (including masturbation) has been researched for years and various stages or steps have been identified. These include desire/willingness, arousal, readiness (sometimes called plateau), orgasm/satisfaction and resolution; the stages are interlinked and overlap each other. Cancer, its treatment and the other factors mentioned above can interrupt any of the stages.

This section will look at key changes that may have a negative effect on you sexually. These include:

  •     Loss of desire
  •     Arousal difficulty
  •     Sexual pain
  •     Loss of sexual satisfaction or altered orgasm

These pages aim to give you information on why your sex life has changed and some tips on how you might improve things. Most importantly, we want you to know that you are not alone and, if you need it, help is available. Your GP or cancer team should also be able to offer advice and information, also the links in this section point to self help from professional sites and books. Some of you may benefit from professional help with a psychosexual therapist, information about how to access services is also included in this section.

Living with Side Effects

 

 

Side effects from treatment may occur. These can happen during and or immediately after sugery or radiotherapy. They tend to settle in the weeks following treatment. Sometimes side effects may develop months or years after treatment has finished. These are called late effects. They tend not go away on their own. Your medical team should be able to offer advice and help on how to manage them.

If you are experiencing side effects from treatment, you are not expected to put up with them. There is no need to suffer in silence. There is help out there. There are different specialists that can help you deal with any of the following: bowel or bladder changes, gynaecological issues, sexual health, pain and many more. If you are concerned make sure you seek advice and a referral from your CNS, Gynaeoncologist, or GP. You deserve the best quality of life possible.

 

Early menopause and HRT

Going through the menopause can bring many challenges, but do not despair, there are treatments to help you. Menopausal side effects can be reduced by taking hormone replacement treatment (HRT) as tablets or skin patches. These can be prescribed by your gynaecologist or GP. For those wishing to opt for a more natural approach, a qualified homeopath/naturopath can advise.

If you have had a hysterectomy and your ovaries have been removed, this means you will go through the menopause. Radiotherapy for cancer of the cervix affects the ovaries and can bring on the menopause, this doesn’t always happen but if it does it will usually start within a couple of months after the treatment starts. The menopause means that your periods will stop and you may have menopausal side effects such as hot flushes, dry skin and possibly loss of concentration. Some women become less interested in sex and notice that their vagina is dry.

Your hospital may even have a specialist team for women in your situation. So do speak up if you are affected by hot flushes, vaginal dryness, feelings of sadness, irritability, mood swings, and problems sleeping. If you decide with your doctor to go on HRT it can also take a while to get the prescription correctly adjusted and you may need a referral to a specialist. If you are concerned make sure you seek advice and a referral from your CNS, Gynaeoncologist, or GP.

 

Loss of fertility as a result of treatment

Your treatment for cervical cancer may have caused changes to your body that now mean you will be unable to have children naturally. The impact of having this option taken away so suddenly cannot be underestimated. It will take time and perhaps support from a professional or other women in a similar situation, to come to terms with this loss. For some women this change will feel like a bereavement and this is not as strange as it may sound as grief and bereavement follow loss in our lives. You may also experience a sense of isolation from your peers who may be starting their own families.

 

Losing the chance to complete your family as a result of treatment

Perhaps you have children already but if you haven’t completed your family the impact of your fertility ending so suddenly without choice can be difficult to accept. You may not have had time to adjust to this new situation and it may feel that for a while you are grieving the loss of the possibility of future children. Allow yourself time and do use any of our support services to talk to others who are facing similar experiences.

If you want support to help you deal with these complex and emotional issues your GP or CNS are always a good place to start. If you decide after speaking to them to seek private therapy or counselling, see our information on this.

 

Going forward

The cancer experience can make us reflect on what’s important in our lives and some of us start making changes for the better. Perhaps you will decide to reduce the causes of stress in your life and make more time for things that give you a lift or make you feel good.

Worried About it Coming Back?

For all of us, accepting that we cannot control every aspect of our lives can be really difficult. After cancer, feelings of anxiety and fear can escalate. The worries we used to hold at bay grow louder and can threaten to dominate our existence. To keep the worry in its place you have to get to know it better. When do you worry most? What sets off those little voices? Is it a particular type of conversation? Is it surfing the net on “cervical cancer”? Is it just before a check-up? Or a routine visit to the GP?

Get to know when worry preys on your mind and create strategies to contain it. Here are some ideas.

Relaxation, Meditation, Yoga

You might not have had a go at any of these practices before but it is worth considering them as they can help you to relax both your mind and body.

Relaxation or meditation encourages your mind and body to enter into a state of calm or rest. This can give you a sense of relief from stress and can help you to feel more able to take on life’s challenges. Getting into a daily routine with this may help train you to focus on your breathing and give your overactive mind a rest.

Yoga or Pilates will also help to strengthen your body as well as focusing your mind on your breathing rather than your worries. Yoga is an ancient practice going back thousands of years and is believed by its practitioners to unite mind, body and spirit.

Both yoga and Pilates help to build ‘core stability’. Core stability refers to the muscles around your pelvis (including your pelvic floor muscles), back and abdomen. Having strong muscles in these areas help to stabilize the body during movement and because your pelvic floor muscles help with urinary continence having a strong pelvic floor can help with some bladder problems.

Your local cancer support center might have exercise and relaxation classes. The teachers at these centers will be sensitive to your needs if you are recently recovering from treatment. If you decide to go to classes at a yoga center or leisure club have a quiet word with the teacher and let them know if you are still recovering from the effects of surgery or treatment.

All cancer centers will have an information and/or a support area for patients so you can find out what is available locally. See our links page for national organisations offering services.

Keep a Busy Mind

An engaged mind is less likely to wander off into fears and ‘what ifs’. So find things to do that you can concentrate on. For some women, going back to work fulfils this purpose.

Alternatively, supporting others with cancer has been shown by research to have a positive impact [1]. It raises self-esteem and can give you a sense of meaning, when life might otherwise seem quite arbitrary.

It may take a while for you to be ready to support others, but you could help us raise awareness of cervical cancer and the support services of Jo’s Cervical Cancer Trust. Read about different ways you can get involved

Talking to Others who have been There

There is nothing like talking to another woman who has a shared experience and has found her way of coping with life after cervical cancer. You can meet other women through our Let’s Meet days or through our network of local support groups. You may also want to visit our online forum. Our forum provides a safe space to connect with other women who understand what you’re going through.

Getting Emotional Support

Cancer can have a huge impact on emotional wellbeing and it is important to acknowledge this [2] [3]. A fear of your cancer coming back can be consuming and it can leave you feeling scared and overly focussed on your health, on every ache and pain. For some women going to a counsellor or psychologist to talk through what they are feeling can be helpful to adjust to everyday life again. Whether it’s a space to speak about your fears of recurrence or coming to terms with the changes cervical cancer has brought to your life seeing a professional who specialises in supporting people through cancer can help.

Ask your Clinical Nurse Specialist (CNS) if it is possible to be refered to a Psycho-oncology team (not all hospitals have these). You may be offered Cognitive Behavioural Therapy which will help you manage difficult thoughts and feelings or Mindfulness Based Cognitive Therapy which will again help you manage your anxieties. Both techniques can support you emotionally and mentally.

You might also find that focussing on other areas of your life, such as hobbies, pastimes or making time to do things that you feel nourish and support you, can really help you to work towards finding a ‘new normal’. Give yourself time to adjust to life and get the support you need. If you need support, find out about the different services that we offer.

Symptoms of Recurrence

You are the best person to know if there is something wrong with your body. It is common for women to experience symptoms after treatment for cancer that may not necessarily be related to their cancer or treatment. However, if these symptoms last longer than three weeks then you should contact your GP or hospital.

Symptoms to report:

  •     Bleeding – from your vagina
  •     Pain after sexual intercourse
  •     Discharge from your vagina
  •     Pelvic pain – that’s pain in your lower abdomen (tummy)
  •     Leg swelling – lymphoedema can also cause leg swelling, but it is important to get any new swelling checked out
  •     Bowel/bladder changes that are not due to the side effects or late effects of treatment particularly bleeding
  •     Back ache that persists
  •     Lumps in the neck
  •     Breathlessness
  •     Unexplained weight loss
  •     Pain that persists and may cause disturbed sleep.

At the end of the day, you will get to know your body and if you have any concerns it is very important to let your hospital team know about them. Your team will prefer to see you as soon as possible so don’t hesitate to contact them. They can put your mind at rest or order tests to find out what is going on. Don’t suffer in silence, this will just make you more anxious. It’s better to get it checked.

If your Cancer has Come Back

If your cancer has come back, we’re sorry you have to face this again. A recurrence of cervical cancer can be unexpected and for some women more upsetting than the initial diagnosis.

Give yourself time to digest the news, don’t feel you have to inform everyone immediately. Deciding when you let others know will help you regain a little bit of control of the situation. You will have their reactions to deal with as well as your own emotions, so be discerning and make a plan for who you are going to tell. You might be able to share this plan with your partner or a friend.

Further Treatment Options

When cervical cancer returns it should be taken on a case by case basis. You might be offered chemoradiotherapy or surgery and you may be eligible to join a clinical trial. Your hospital team will be able to advise you further about the types of options available. Your Clinical Nurse Specialist (CNS) will help you navigate treatment choices and decisions. Remember it is okay to ask questions; doctors and nurses are used to this and expect it.

You may want to request a second opinion regarding your treatment options. This means your GP or consultant will refer you to seek a second opinion from another doctor, this could be at the same hospital or in some cases it might be a different one. This option is not for everyone. Many women find comfort in sticking with the hospital team that treated them initially, you may have built up a relationship with them and this can be helpful at this stressful time.

Getting Support for You

Getting support during this time will help you manage the news and make decisions. Support can come from a variety of places including your GP, CNS, local cancer support centre, our support groups and online forum. We will soon have a dedicated space on our forum for women going through a recurrence of cervical cancer so you can express yourself freely with others in a similar situation.

You might not have thought about it before, but your local hospice may also provide support and therapies. Your instant reaction might be, “Don’t be ridiculous I’m not that ill.” Palliative care literally means holistic care and this is what hospices specialise in. The therapists are trained and experienced in supporting you, body and soul, to get the most out of life. They are not only there for people whose cancer is very advanced. You can ask your GP or CNS for a referral, alternatively you can call and ask about accessing their therapeutic out-patient services.

Friends and family can also be sources of support. They may also try to protect you. If you find them being overly protective or controlling you need try and make sure you let them know what help you do and don’t want. Your CNS can help you to plan for these discussions.

Complementary Therapies to Improve your Sense of Wellbeing

Your local cancer support centre will have a range of holistic therapies available, free of charge to people undergoing treatment for cancer. Complementary therapies are used alongside your medical treatment received in hospital. These treatments can help you to relax, ease tense muscles and help you to return to a sense of equilibrium at a stressful time. There are a range of therapies available such as acupuncture, aromatherapy, massage, reiki, and reflexology. They will be delivered by a qualified therapist.

Many women find these types of treatments very supportive during a recurrence of their cancer and some patients’ find these treatments help reduce the side effects of treatment e.g. acupuncture for nausea during chemotherapy. These treatments aren’t necessarily proven to reduce side effects, although there is an interest among the research community in examining the benefits of complementary therapies, however they seem to bring relief and comfort to many people who use them [1].

Speak with your local cancer centre and find out what might be available to you. If you decide to seek complementary therapies privately and pay for your treatment ensure your therapist is registered with one of the organisations listed below and that they have experience of helping people with cancer.

Creativity

Research has shown that many people going through cancer find relief in writing down emotions and feelings. You could try keeping a daily journal or using this more occasionally. It’s a way of managing your deep seated feelings and enabling you to digest or begin to ‘process’ them.

Creative activities such as drawing, art therapy or creative writing can be a wonderful way of enabling you to express emotions and get in touch with another side of yourself.

Your local cancer support centre or hospice will be able to offer you access to these sorts of supportive therapies and activities for free.

References

Worried About it Coming Back?

  1. Pistrang N, et al,. 2012. Telephone peer support for women with gynaecological cancer: benefits and challenges for supporters. Psycho-Oncology 22(4), 886-94.
  2. Johnson R.L, et al,. 2010. Distress in women with gynecologic cancer. Psycho-Oncology, 19 (6), 665-668.
  3. Macmillan Cancer Support website: The emotional effects of cancer http://www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Emotionaleffects/Emotionaleffects.aspx. Accessed 28.07.13

If your Cancer has Come Back.

  1. Cancer Research UK website: http://www.cancerresearchuk.org/cancer-help/about-cancer/treatment/complementary-alternative/research/complementary-and-alternative-therapy-research. Accessed 14.06.2013

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