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Recovery & Follow-Up Care
This section talks about the recovery process after treatment for cancer. As with all of of the content on our website it is for information only and should not be used as a substitute for medical advice – your doctor(s) will be able to advise what is best for you.
LIVING BEYOND CANCER
The treatment for head and neck cancer, particularly surgery and radiation therapy, depending on where and what treatment is required, can cause some long lasting side effects which can have an impact on people’s quality of life. We’ve included some of these on this page as well as some of the support that is available.
The good news is that there are many, many people who have beaten cancer and are living long and happy lives. With the ongoing research and progress in cancer prevention, treatment, and cure, the outlook continues to improve for those affected by cancer.
TISSUE SPARING RADIOTHERAPY AND THE GOLD STANDARD
The advances in radiotherapy have made it easier for medical teams to spare healthy tissue when administering radiotherapy. Our radiotherapysection details some of the different kinds of radiotherapy which could be used in your treatment. The more advanced machines will be able to target the tumour very precisely, targeting the radiation at the tumour and not the area around the tumour. We advocate for the ‘Gold Standard of Care‘ and what that means is ensuring that all patients are offered the most advanced and tissue sparing radiotherapy treatment.
It is important that you discuss your options with your medical team to make sure that you have been offered the most appropriate treatment for you and your cancer. Some types of cancer, depending on their location and aggressiveness, will require similarly aggressive treatment which will make it hard for the medical team to spare healthy tissue around the tumour. Other cancers will be treated with less aggressive treatment – it all depends on the individual case.
It can sometimes be difficult to think of or remember questions that you want to ask your medical team, so we’ve put together this PDF (Questions to ask your doctor) which may be of use to you.
POTENTIAL LONG TERM SIDE EFFECTS OF TREATMENT
Some side effects may not become apparent until long after treatment has ended, and others will be more immediately apparent. The physical side effects you may encounter will depend on your individual circumstances and treatment, while mental health issues can affect anybody, whether they have cancer or not.
This is a very important aspect of health and one that can sometimes be overlooked when the focus is on getting your body physically well. Your mental health can affect your day to life and have physical side effects too.
Mental health issues can mean suffering from depression. This can leave people in a constantly low/bad mood, irritable, low self esteem, feeling hopeless or helpless, having thoughts of suicide or self harm, have trouble making decisions, feeling anxious and lacking in interest and motivation. Physical side effects can include disturbed sleeping patterns, changes in appetite (both under eating and over eating), loss of libido, loss of energy and constipation.
Depression can affect everyone and is a very common health condition. There is help out there. If you are struggling to cope then your first port of call is your GP. They can assess your condition and they may prescribe medication, or they may refer you to a counsellor or mental health professional like a psychologist.
There are other mental health conditions which can affect people if they have been through the rigours of a cancer diagnosis and treatment. Feeling anxious, particularly about the cancer reoccurring, is common and can lead to depression, ‘checking behaviour’ (for example constantly checking the neck for lumps) and put strain on relationships. There is help out there though and here are some useful resources:
- GP – your family doctor is always a good place to start if you have symptoms of any illness and that includes mental illness. Click here to find a GP in England, Scotland, Northern Ireland or Wales.
- Mind – a mental health charity which has resources and information about mental health.
- Samaritans – Samaritans provides confidential, round the clock support to anyone feeling low or struggling to cope. People contact them about all kinds of things including health worries, financial concerns, anxiety, relationship breakdown, depression and thoughts of suicide. You can contact Samaritans 24 hours a day, 365 days a year by calling 08457 90 90 90 or from the Republic of Ireland call 1850 60 90 90. You can also email for support via firstname.lastname@example.org. Volunteers also provide face-to-face support at our branches during set opening times. Please visit the website to find your nearest Samaritans branch here.
- Sane – an on-line resource which can offer more information about mental illness and support that is available.
- Breathing Space – a Scotland based charity which offers information and support for mental health difficulties.
There are other resources out there and we have chosen some of the larger organisations who can offer information and support. We are not responsible for their content. If you have any resources you recommend or advice you would like to share contact us here.
PHYSICAL SIDE EFFECTS
We have looked at the short term side effects in the respective sections on chemotherapy, radiotherapy and surgery. This section will look at some of the issues which can last long after the treatment has ended. This is one of the major challenges of treating head and neck cancer – ensuring the cancer is treated properly while limiting long term effects which have a negative effect on quality of life.
- Dysphagia – or in English, difficulty swallowing. The neck has thousands of nerves and dozens of muscles which enable people to talk, eat and swallow. Until you cannot use them properly you won’t even think about them. There is help available. Ask about a Speech and Language Therapist if you have not been referred to one. A Speech and Language Therapist will be able to show you exercises which will strengthen the throat and teach you how to swallow again.
- Xerostomia – in English, dry mouth. This is a very common side effect of radiation treatment as it can damage or even destroy the saliva glands. This can be a permanent condition depending on type of treatment and the location of the treatment. The sparing of tissue is one of the biggest challenges when treating head and neck cancer and the newer radiotherapy machines can spare more. Dry mouth can mean having to carry water/chewing gum to keep the mouth moist, changing diet to ensure plenty of softer foods and sauces, can cause difficulty when sleeping and difficulty when speaking.
- Lymphoedema – or Lymphadema – is a condition which affects the lymph system. The lymph nodes are part of the immune system and are small pea sized glands which can become swollen when the body is fighting infection. After treatment the lymph glands can sometimes have trouble draining fluid – this is called lymphoedema. It cannot be cured but it can be eased by a lymphatic massage (where the area is gently massaged to drain the fluid), sleeping sitting upright can help, as can compression garments and eating well.
- Fatigue – it might be a long time before a patient gets their levels of energy back to pre treatment levels. Some people will recover fairly quickly but not everyone. Fatigue can last for a long time after treatment, no matter how much rest people take. It can be very frustrating but there are some things which can help: resting when tired, regular sleep patterns can help, having a balanced diet to ensure you are getting lots of the right kinds of nutrition, light exercise can also help build stamina and lessen fatigue.
- Anaemia – this is often a cause of fatigue too and is an extremely common side effect of cancer treatment and most patients will suffer from anaemia during their treatment. Some may require a blood transfusion to boost their red cell count. Anaemia can last after treatment has finished and it can be treated with iron tablets or iron injections.
These are some of the issues which can affect the long term recovery for cancer patients.
There is lots of help available though and we have compiled a list of useful resources which will guide you through the support that is available to patients and their families.