Living well with and beyond gynaecological cancer
Contacts:
Gynaecology Cancer Support Worker (CSW): Cross bay: telephone: 07815464693
Gynaecology Clinical Nurse Specialist (CNS): Lancaster telephone: 01524 519598 / 07779423602
Gynaecology Clinical Nurse Specialist (CNS): Barrow in Furness telephone: 01229 406769 / 07779423761
This page explains about Supported Self Management and how it works. It contains information about your cancer and the treatment you may have received so far, as well as the tests that you may need in the future as part of the monitoring plan. It also contains all the information you need to contact your team and arrange to be seen if you have any worries.
The aims are:
- To increase your awareness of signs and symptoms to look out for.
- To give you the skills and confidence to check for signs and symptoms of cancer recurrence.
- Understanding and managing the physical and emotional effects of treatment and management.
- To direct you to information and support.
- Give you an opportunity to ask questions with our clinical team and meet your cancer support worker.
Your gynaecological cancer story so far
You might have had a number of different feelings when you were told you had cancer. Many people find coping with a diagnosis of cancer difficult. Gynaecological cancer and its treatment may have affected your life and how you feel about yourself and your relationships. This may have left you feeling apprehensive about your appointments to see your doctor or specialist nurse, and anxious while waiting for your tests and results as well as the uncertainty of needing treatment and what that would involve.
So how do you feel now you have had treatment?
- Numb
- Frightened and uncertain
- Angry and resentful
- Guilty
- Anxious
- Relief
- Feeling well
You may have some or all of these feelings, or even different ones.
Everyone reacts in their own way; sometimes it is hard to take in the fact that you have cancer at all. Experiencing these feelings is a natural part of coming to terms with your cancer.
Now you have had your treatment you will enter the follow up part of your journey for three to five years depending on the treatment you have had previously. This will include monitoring and discussions between you and your team to give continued support. We will discuss with you what is the best follow up plan for you.
What is Supported Self Management?
There is strong evidence that symptoms and concerns are addressed more quickly if patients report them as and when they occur, rather than waiting for a routine appointment. We have therefore changed the way we manage the care of patients. This type of follow up care is sometimes called Personalised Stratified Follow up (PSFU) or Supported Self Management (SSM). It aims to give you more open access to care.
The idea is to provide planned coordinated care, which may include nurse-led services and remote monitoring led by you. Self management allows you to be more in control of your care, but you can always contact your nurse or cancer team for help if you need it. This will help you avoid unnecessary journeys to hospital and waits in clinics. Having fewer hospital visits may also help you feel less anxious.
What to expect on Supported Self Management
During your treatment and care, a member of your team will discuss Supported Self Management with you. When your treatment comes to an end you will have a further discussion and decide if this is the right follow up option for you.
Once on Supported Self Management you will no longer have routine follow up appointments at the hospital. Your health care team will create a document describing the treatment you have had. This is referred to as a treatment summary. The summary will tell you what to expect now that your treatment has finished. It will include details of any tests or investigations that you might need, side effects or potential signs and symptoms you should be aware of and contact details for your health care team.
Your nurse can help you manage and provide the information you may need regarding your health.
If you are offered this type of follow up care, always make sure you contact your nurse if you are worried about anything. If you do not get in touch they will assume that everything is fine. If you have any symptoms or concerns you can contact us. If necessary, you will be seen urgently by the team at the earliest appointment.
Endometrial Supported Self Management is divided into two follow up plans.
The first is the surgical plan for patients who have had surgical treatment for their cancer. This means that you will be followed up for three years. Your Cancer Support Worker will send you annual health questionnaires which need to be completed and returned. These will be reviewed by members of your team and we will contact you if any action is needed.
The second is the radiotherapy plan which is for patients that have had radiotherapy or a combination of surgery and radiotherapy. This means you will be followed up for five years. Your Cancer Support Worker will send out an annual health questionnaire to be completed and returned, but in addition, your Cancer Support Worker will also send out a form known as an Alert B form which will be sent to you every six months throughout the follow up period. This is to help us monitor if you are having any late effects of radiotherapy treatment. All questionnaires will be discussed and be reviewed by members of your team and we will contact you if any action is needed.
You can still contact us at any time with any queries or concerns. You do not have to wait to receive a questionnaire to make contact with us.
Ovarian Supported Self Management will require follow-up for five years. Your Cancer Support Worker will send out an annual health questionnaire every twelve months which will require completing and returning. In addition, every six months you will have a CA125 blood test. The results and completed questionnaires will be reviewed by members of your team and we will contact you with the results and advise if any action is required.
Cervical Supported Self Management follow up will be made up of face-to-face clinic appointments for the first two years following treatment with your Clinical Nurse Specialist. You will then be added to the Supported Self Management pathway and followed up for a further three years whereby your Cancer Support Worker will send you annual health questionnaires which will require completion and then returned. The completed questionnaires will be reviewed by members of your team and we will contact you if any action is needed.
Signs and symptoms to look out for
Signs and symptoms can include:
- Bleeding and spotting from the vagina.
- Bleeding from the back passage.
- A change to your vaginal discharge.
- A lump or swelling in your tummy or pelvis.
- Pain in your lower back or pelvis.
- Pain during sex.
- Bleeding after sex.
- Blood in your urine.
- Change in bowel or bladder habits.
- Any change that is not normal for you.
It can take a while to adjust to what is now 'normal' in terms of your vaginal discharge. This can range from blood-stained to light or dark brown.
If you are uncertain speak to your Gynacology Cancer Support Worker or Clinical Nurse Specialist.
It is important you get any abnormal symptoms checked out.
How you can help yourself
You may be able to cope and make decisions if you have information about your type of cancer and its treatment.
Information helps you to know what to expect. You can ask your doctors or nurses to explain things again if you need to. You don't have to sort everything out at once; it might take some time to deal with each issue. Ask for help if you need it.
Exercise
Exercise and keeping active has shown to be beneficial both during cancer treatment and keeping yourself fit following a cancer diagnosis.
It is important to make sure that your physical activity is appropriate for you. If you need advice, contact your Cancer Support Worker, Clinical Nurse Specialist, or your GP who will be able to inform you of any appropriate local exercise programmes such as walking groups, cycling, swimming, yoga, tai chi, pilates and exercise classes at your local gym. As you gradually build up your strength, you can choose what activity you enjoy the most.
Being active has many benefits, such as:
- Reducing tiredness and fatigue.
- Reducing anxiety and depression.
- Improving your mood.
- Strengthening your muscles bones and joints.
It also helps to look after your heart and reduce other health problems such as diabetes, heart disease, and stroke.
If you are not used to exercising, you may worry about how to get started.
If you want to engage in exercise for the first time, start off slowly by taking a twenty minute walk at your own pace.
You might feel that it is not enough, but it is a good start. Increase your amount a little at a time. Share your plans to exercise with people you know are supportive.
Healthy eating
A healthy diet is important for general health and can help you maintain a healthy weight.
We don't recommend any set diet or exercise programme. Instead, we suggest some changes to improve your overall health, and that may also help with your recovery. Making healthy eating choices may include:
- Avoiding high calorie foods and sugary drinks.
- Eating more whole grains, vegetables, fruit and beans.
- Avoiding processed meats and limiting red meats.
- Avoiding or limiting alcohol if possible.
Fatigue
Fatigue is being tired physically, mentally, and emotionally. It means having less energy to do the things you need or want to do. Fatigue is one of the most common side effects of cancer treatment, and often occurs without warning. Every day activities such as talking on the phone, shopping, and even eating a meal can be very overwhelming. Cancer related fatigue is worse than everyday tiredness. It lasts longer and sleep does not make it better.
People have described it as overwhelming and sometimes affecting every part of their lives. Cancer-related fatigue can last for months to years and can sometimes continue after your treatment is finished. Although fatigue is a common symptom when you have had cancer there may be a medical reason as to why you are experiencing fatigue, such as anaemia, pain, anxiety, or stress. If you are concerned, ask for advice from your Cancer Support Worker, Clinical Nurse Specialist, or GP.
Tips to help with cancer related fatigue:
- Take it easy; set aside time in the day to rest.
- Take a short nap - no longer than an hour.
- Conserve your energy for important activities and ask for help when needed.
- Maintain your energy by drinking plenty of fluids and eat a wellbalanced diet.
- Get moving when you feel up to it; light exercise through the week will help preserve your energy levels.
Anxiety and worry
After treatment, some people will put their cancer experience to the back of their mind and hardly ever think about it. Others think about cancer often and find that those thoughts can be overwhelming. Some people may have fears about their cancer returning and how it will affect their future. Others may focus on some of the positive changes cancer has brought, such as new purpose and strength in life. Any one of these reactions is normal and it can be common to have a degree of worry at some point.
When to ask for help:
- If you are finding it difficult to rebuild your life due to the uncertainty about gynaecological cancer.
- If you worry that your cancer may reoccur.
- If you are struggling to sleep because you are worrying about your cancer.
- If you have little or no appetite.
- You have no desire to spend time with family and friends.
- If you have little or no interest in your normal routine.
- You can contact your Cancer Support Worker, Clinical Nurse Specialist, or GP for advice
Ways to manage worry:
Learn to focus on the ways gynaecological cancer has made you a stronger person.
- Talk to family and friends about your concerns.
- Join a support group.
- Write a diary about your thoughts and feelings.
- Get involved with an interesting hobby or things you enjoy doing.
- Try and focus on positive things in your life, no matter how small.
- Remember that as time goes by, the worries will fade.
- If depression, anxiety or any part of your cancer journey becomes overwhelming, seek advice from your gynaecology team or GP.
Talking to friends and relatives about your cancer can help and support you, but not everyone will be comfortable talking about it as they may be scared of upsetting you or getting upset themselves. It can strain relationships if the people close to you do not wish to talk but you can help increase trust, and support between you and them by letting them know and understand about what is happening to you and how you feel. Some people find it easier to talk to someone outside of your friends and family.
Cancer Research have cancer information nurses you can call on freephone 0808 800 4040, from 9am to 5pm, Monday to Friday. Or you may prefer to see a counsellor.
Counsellors are trained to listen and can help you to find your own ways to deal with things. Your Clinical Nurse Specialist and Cancer Support Worker will be able to refer you to a counsellor or psychologist who specialises in cancer care.
Support groups can provide a safe environment to share experiences with other people who have gone through similar experiences. You can learn new ways to handle different situations and talk about emotional issues that only people like you will understand.
These groups can offer an opportunity to learn different ways of coping. Your Cancer Support Worker can signpost you to any local support groups you may be interested in, and also advise of reading material and websites to visit.
Relaxation exercises
Relaxation can help to relieve the symptoms of stress and anxiety. It can help you to calm down and take a step back from a stressful situation. Although the cause of the anxiety won't disappear, you will probably feel able to deal with it better when you do not feel as tense.
All relaxation techniques combine breathing more deeply with relaxing the muscles. You may find it difficult to relax at first, but it is a skill that can be learned with time and practise. Practise deep breathing at a regular time and in a quiet place where you will not be disturbed. Loosen or remove any tight clothing you may have on, such as shoes or jackets. Make yourself feel completely comfortable. Sit in a comfy chair which supports your head or lie on the floor or bed. Place your arms on the chair arms or down by your side a little bit away from the side of your body with your palms facing upwards. If you are lying down, stretch out your legs, keeping them hip-width apart. If you are sitting in a chair, don't cross your legs. Good relaxation always starts with focusing on your breathing.
The way to do it is to breathe in and out slowly and in a regular rhythm as this will help you to calm down.
- Fill up the whole of your lungs with air, without forcing, and imagine you are filling up a bottle, so that your lungs fill from the bottom.
- Breathe in through your nose and out through your mouth. Breathe in slowly and regularly counting from one to five (don't worry if you can't reach five at first).
- Then let the breath escape slowly, counting from one to five.
- Keep doing this until you feel calm and breathe without pausing or
- holding your breath.
- Practice this relaxed breathing for three to five minutes, two to three times a day (or whenever you feel stressed).
Progressive muscle relaxation exercise stretches different muscles in turn
and relaxes them, to release tension from the body and relax your mind.
- Find a warm, quiet place with no distractions. Get comfortable, either sitting or lying down. Close your eyes and begin focusing on your breathing; Breathe slowly and deeply.
- If you have pain in certain muscles, or if there are any muscles that you find it difficult to focus on, spend more time on relaxing other parts.
- You may want to play some soothing music to help relaxation. As with all relaxation techniques, you will need a bit of practise before you start to feel the benefits.
- For each exercise, hold the stretch for a few seconds, and then relax. Repeat a couple of times, trying to keep to the same order for each muscle group.
Face: Push the eyebrows together, as though frowning, then release.
Neck: Gently tilt the head forwards, pushing chin down towards chest, then slowly lift again.
Shoulders: Pull them up towards the ears (shrug) and then relax them down towards your feet.
Chest: Breathe slowly and deeply in to the diaphragm (below your bottom rib) so that you are using the whole of your lungs. Then breathe slowly out, allowing the belly to deflate as all the air is exhaled.
Arms: Stretch the arms away from the body, reach and relax.
Legs: Push the toes away from the body, then pull them toward the body, then relax.
Wrists and hands: Stretch the wrist by pulling the hand up towards you, and stretch out the fingers and thumbs, then relax.
Spend some time sitting or lying quietly after your relaxation with your eyes closed. When you feel ready stretch and get up slowly.
Coping practically
Practical things that you and your family might need to cope with include:
- Money matters.
- Financial support, such as benefits, sick pay, and grants.
- Work issues.
- Childcare.
When going through treatment and follow up care, finances can be a worry and a major source of stress. We aim to provide patients with all the information and support they may need throughout this journey. We can identify what options are open to you and help you understand them. We want to make it clear and simple, so that you can make decisions about your personal finances.
We can:
- Help you think through practical options such as taking early retirement to look after a loved one.
- Review your mortgage and help you work out your options if you are struggling to keep up repayments.
- Guide you through an insurance claims process and explain the options available to you.
- Help you make a budget.
- Give you a better understanding of financial products and how they work and make financial jargon easier to understand.
Whatever your needs, our specialist team will support you to make financial decisions that are right for you. Talk to your Clinical Nurse Specialist or Cancer Support Worker to find out who can help.
Late effects of treatment
How pelvic radiotherapy might affect you:
Pelvic radiotherapy can cause early menopause by stopping your ovaries from working. This can cause symptoms such as vaginal dryness and loss of interest in sex. Pelvic radiotherapy can make the tissues in the vagina less stretchy. This is called fibrosis. Vaginal fibrosis can narrow the vagina, making it uncomfortable and difficult to have sex. Inside the vagina can also become thin, delicate, and easily torn. This can lead to pain, discomfort or bleeding and make intercourse really painful. Rarely, ulcers can form inside the vagina when the tissue tears. These can take a few weeks, or even months, to heal.
You may not feel like having sex while you are having a course of pelvic radiotherapy. The treatment can make you feel very tired and give you bladder inflammation and diarrhoea.
The effects of pelvic radiotherapy may last quite a while or you may not have any side effects. Any of these symptoms can happen months or years after your treatment. It is important to tell your Clinical Nurse Specialist or Cancer Support Worker if you are experiencing any of these symptoms while you are on Supported Self Management, so we can help alleviate your symptoms and put you in contact with people who can help you.
If you are on the radiotherapy Supported Self Management follow up plan (five years) then your Cancer Support Worker will send you a questionnaire (Alert B) every six months.
This will help us to monitor and assess if you are experiencing any late effects of treatment due to radiotherapy. We can then help with any issues accordingly, including a referral to the late effects of treatment team who have specialist knowledge and experience of how to manage your symptoms.
Please remember if you have any concerns, questions or something you are not sure of please contact a member of your gynaecology team.
Useful Contacts
Barrow in Furness - Clinical Nurse Specialist - telephone: 07779 423761
Lancaster - Clinical Nurse Specialist - telephone: 07779 423602
Cross Bay - Cancer Support Worker - telephone: 07815 464693
For further advice please speak to:
Macmillan Information and Support Service.
telephone: 01524 519578 or Email: macmillan.info@mbht.nhs.uk
Macmillan Cancer support charity
telephone: 0808 808 0000.
www.macmillan.org.uk
Cancer Care:
telephone: 03330 150 628
www.cancercare.org.uk
Gynaecological Cancer Resources and Organisations
Cancer Research UK - www.cancerresearchuk.org - freephone helpline,
tel: 0808 800 4040 Monday to Friday, 9am to 5pm.
Womb cancer support uk - www.wombcancersupportuk.weebly.com
The Eve Appeal - www.eveappeal.org.uk
Go Girls - www.gogirlssupport.org
National Cancer Institute - www.cancer.gov
Macmillan Cancer Support - www.macmillan.org.uk
Pelvic radiation disease association - www.prda.org.uk
Peaches womb cancer trust - www.peachestrust.org
Lynch syndrome uk - www.lynch-syndrome-uk.org
Living well with and beyond cancer half day events
tel: 01768 245954 or email: ppss@ncic.nhs.uk
Facebook Support Groups:
The Teal Ladies - gynae cancer support
Peaches - raising awareness of womb cancer
The Eve Appeal
Date published: 30/05/2022
Leaflet code: lc00013471/PIL204
Review date: 01/02/2026