Frequently asked questions about neuro-oncological research and clinical trials
This term was suggested by people who have had cancer because it was felt that the word 'survivor' meant specifically those in whom cure was fairly certain (perhaps a long time after their diagnosis and treatment).
Many others are living with fairly stable cancer or with some degree of uncertainty that it could come back, often for a number of years. These people too felt very strongly that they needed support and regarded themselves as survivors too. Others simply do not like the label 'survivor'!
So the term 'living with and beyond' tries to include all of these groups, whether you are living with cancer as an ongoing health problem and may be on and off treatment over time, or whether you have been 'signed off' after cancer in the past.
Follow-up care depends on your particular type of cancer and the outlook from the treatment that you have been given, also on whether or not you have any ongoing problems linked to the cancer illness or the type of treatment that you have received and the risk of any long-term effects on your health in the future. So the answer is - it depends!
Usually, in the early period after treatment, people need to have careful and more frequent checks by specialist teams. This is to assess how well the cancer has responded to treatment, to check if the expected side effects are settling down, and also to ask about any other concerns.
Appointments are more spaced out over time as the likelihood of problems becomes less. However, most cancer recurrences tend to be noticedin between,not during, clinic visits. For this reason and others, follow-up needs to be more flexible and geared to the individual patient. All healthcare professionals, whether in hospital or in the community, now recognise that more can be done to support a person's recovery after the experience of cancer and to encourage steps to a healthier lifestyle in the future. This is part of the survivorship work.
All patients should have a follow-up plan explained to them at the end of treatment, and be given guidance on what to look for and who to contact if there are any worries in between visits.
We want to make sure that all patients are given guidance about problems thatcoulddevelop some time after treatment. There are patterns of late effects that are now well-recognised to be due to treatment in the past - for example osteoporosis. Where these are quite likely there should be a plan to check regularly. This might be via the hospital or the GP.
Remember that at the ages most people develop a cancer, - 60 to 70 years plus, many people do have other health problems. So the important message is - if you think you have a new problem please seek advice. The problem may not be linked to your cancer in the past.
This depends upon your own situation. Some tests, such as blood tests and scans, are important to check for any early sign of cancer activity. However these have to be balanced against the risk of the cancer returning and the anxiety of having lots of tests - as well as the possibility of having extra doses of radiation from repeated scans.
Once beyond the immediate post-treatment phase, most scans are requested when a problem develops when the aim is to check whether or not the cancer is the cause.
In some patients, other tests will be advised to check for possible later effects of treatment. As ever this depends on the treatment given - for example, thyroid function tests or heart checks. This plan should be part of information given to everypatient at the end of treatment and discharge from follow up.
If you feel you have not had enough information either about the cancer itself or treatment effects, then there are ways to help:
This is a hard one to answer. First of all, of course, most people are worried before having tests and appointments, and this worry is mainly about the fear of receiving upsetting and unexpected news
For some people, when they have gone through a difficult time initially, just coming back to the specialist centre can bring back those memories and feelings. Others find particular tests, such as MRI scans, particularly difficult.
There are several steps you can take to improve your health after completing and recovering from your treatment.
Be physically active
Once you have recovered from you treatment and your specialist gives you the go ahead, start to build up your activity levels. Try to be active every day and gradually build up the amount you do, eventually aiming for at least 30 minutes per day.
To get started and for more information the following resources may be helpful:
Maintain a healthy weight
The aim following treatment is to be as near to a normal healthy weight as possible. If you have experienced weight gain, aim to reduce it gradually by following a healthy eating plan.
For more information:
If you have unintentionally lost weight or are underweight and are struggling to regain it:
Ask your hospital doctor or GP for a referral to a registered dietitian if you want help managing your weight.
Eat a well balanced nutritious diet
Eating a well-balanced nutritious diet can help you feel better and may reduce the risks of a cancer returning or the development of a new cancer. The following is a brief guide to the dietary advice recommended:
For further information on each of these sections in more detail, see The Christie information booklet 'Eating well following treatment and recovery from cancer' and the podcast 'Moving on with your eating'.
Moderate alcohol use
The Department of Health recommends safe limits that for woman are no more than 2 to 3 units of alcohol per day and for men no more than 3 to 4 units a day.
Aim for 2 to 3 alcohol free days per week. You can also mix it up by including soft drinks and exploring alcohol-free beers, lagers and wines. When you do drink alcohol moderately, linger with the experience and savour the choices you can make for a healthier approach to alcohol use. Remember going over the limit not only puts your physical and mental health at risk but can also cause insomnia, fatigue, anxiety and low mood. Don't let too much alcohol hinder your successful recovery. Let your family and friends know that you have made these changes. They can come on board and reap the benefits too.
Number of units in some common alcohol based drinks:
For more information, see the NHS 'Drink Smart' booklet available from The Christie or visit
Go smoke free
Stopping smoking is the best way to improve your physical and mental well being. Stopping will help you recover more quickly and improve your energy levels and respiratory functioning. It can even help prevent cardiovascular disease and memory loss.
We recommend you stop smoking before treatment to help prevent and reduce side effects of treatment in the long term and reduce risk of further disease and new cancers developing.
Minimise the harm from passive smoking by encouraging your friends and family to avoid smoking around you and (even better) stop smoking themselves. For more information and support for you and your family please contact our skilled and supportive Smoking Cessation/Alcohol Advice team on 0161 446 8236 or 0161 918 7175
The Christie has ' Healthy Lifestyles' webpage covering smoking cessation, alcohol, nutrition and exercise.
Macmillan Cancer Support has several ways in which they can help you around finance and employment. You can contact any Macmillan information and support centre in your local area. They are usually in your local hospital or you will find the contact details on the Macmillan website.
Alternatively you can call the free Macmillan help line on 0808 808 0000 between 8am and 8pm. They are there to help, advise and guide you. Your local Citizen Advice Bureau will also be able to help you.
It is very important when planning to have a family that you are fit and sufficiently well to offer the best chances for a baby. You may have already talked these things through with your doctor during treatment although often some thoughts arise or become more important later on, when treatment is finished. Cancer treatments can affect your fertility. It is important to talk through your individual care with your doctor.
It is important to follow contraceptive advice and to talk to your doctor first before planning a baby. If you think you might be pregnant it is also very important to let the doctor know. Advice about fertility is very specific to you and your circumstances. If you do not feel you can talk to your doctor then ask them about your local fertility clinic. You could also contact them by phone or letter at first if you feel uncomfortable about talking.
There is a fertility clinic at Manchester Royal Infirmary.
The Macmillan Information booklets below offer many names and addresses of organizations who may help with fertility and for those couples who are unable to have children, they offer information and support. There are also local organizations that offer advice on fostering and adoption