Living with and Beyond Cancer

  Looking after your mind is just as important as looking after your body. A cancer diagnosis and treatment can affect people in different ways and at different times. Your mental health is important: make sure you do things you enjoy. If you feel depressed or anxious, and these feelings last more than a couple of weeks or start to interfere with everyday life, seek help. Sources of support include your GP or online/local support groups for survivors of cancer.

• Mental health for children, teenagers and young adults - NHS
• Contacts for your emotions and mental health - Young Lives vs Cancer

   You may find it difficult to get back to socialising with friends and family.  Your interests, views, or physical capabilities might be different now, and it can take time to understand your "new you".  Try not to compare your social life or recovery with others.  You may wish to seek out young adult cancer support groups and trips or online communities to meet others who understand your experience.  A great way to get socialising again is via some of these opportunities, for example; Teens Unite activities and the Ellen MacArthur Trust. 

  Going back to work or applying for jobs can be difficult after cancer. 

It is important to know that employment post-cancer for a young adult is supported by legal rights under the Equality Act, requiring employers to make "reasonable adjustments" to prevent substantial disadvantage due to cancer. 

Some resources to support you are here: 

• https://www.younglivesvscancer.org.uk/cancer-info-support/work/ 
• Returning to work after cancer treatment | Teenage Cancer Trust 
• Work and cancer | Macmillan Cancer Support 
• Money and jobs support for young people - Centre 33

Fatigue means feeling very tired and exhausted all the time. It can affect your body and/or mind.  Fatigue affects everyone differently - some people feel very mentally tired but physically okay, or the other way around.  It can vary throughout the day and it is a common side effect of cancer and its treatments. There are ways to manage fatigue and there is help available to manage tiredness.

• Managing and treating cancer fatigue | Cancer Research UK
• Tiredness (fatigue) and cancer | Macmillan Cancer Support
• Fatigue | CCLG - The Children & Young People's Cancer Association

Cancer related cognitive impairment is often referred to as ‘chemo brain’. Cognitive function is our ability to think. It involves the processes of memory, language, attention, planning tasks, multitasking, and how we respond in certain situations. 

Even small declines that happen in your cognitive function can have a significant impact on everyday lives. Any decline in cognitive function is called cognitive impairment. 

CRCI can be caused by both the cancer itself, as well as other cancer treatments, and made worse by related factors such as anxiety, fatigue, medications, hormone imbalances and just feeling generally unwell. It usually resolves sometime after treatment, but unfortunately for some this continues well beyond the end of treatment.

• What is cancer related cognitive impairment (CRCI)? | The Royal Marsden
• Cognitive changes (chemo brain) | Macmillan Cancer Support

Some cancer treatment could affect your fertility; your treating team should have made you aware of this if it is relevant to you. If your ovaries are producing eggs after treatment and you are having periods, your window of being fertile may be shorter than expected and you may have an early menopause. 

It may be possible to reassess your fertility after treatment and ask for a referral to a specialist fertility doctor to discuss this with you if you wish. 

You should never assume you are infertile: you should always take care to use contraception unless you are trying to conceive, and, as part of a general healthy lifestyle, to protect yourself from sexually transmitted diseases.

• Support for premature ovarian insufficiency
• Early Menopause due to cancer treatment
• CCLG reproductive health fact sheet 

Some cancer treatment could affect your fertility. Your treating team should have let you know if this is the case for you. If you are told you could be at risk, it is possible to check your fertility by carrying out a sperm count. Your treating team or GP can give you more information about this. 

You should never assume you are infertile: you should always take care to use contraception unless you are trying to conceive, and, as part of a general healthy lifestyle, to protect yourself from sexually transmitted diseases.

• Semen analysis for fertility
• CCLG reproductive health fact sheet 

Some cancer treatments can affect your endocrine glands. These glands produce hormones that control the way your body works. This includes:

• your growth
• when you go through puberty
• being able to get pregnant or make someone pregnant (fertility)
• your metabolism (the way and speed at which your body processes energy)
• your energy levels

Any potential problems will depend on which glands have been affected and this will depend on the treatment you had and the area of the body that was treated.

• What are Hormones? - Pituitary Foundation
• Endocrine problems | CCLG - The Children & Young People's Cancer Association

 Some chemotherapy drugs may lead to heart problems. You are particularly at risk if you received high doses of certain drugs, and if you received chest radiotherapy. Monitoring may be required, depending on level of risk, and a heart specialist may be involved in your care. Your treating team should let you know if this is relevant to you.

Please seek help if you have symptoms of concern such as shortness of breath, chest pain, dizziness or palpitations as it may be a sign that something could be wrong with your heart. Make sure you inform the medical team or GP that you have had previous cancer treatment that could affect your heart so they know how to treat you.

• Cancer treatment and heart health
• CCLG heart issues late effects
• IGHG-Cardiomyopathy-surveillance-recommendations_2022.pdf 

 Treatment you received can affect your bones leaving you at a higher risk of thinning of the bones, a condition called osteoporosis, which increases the risk of fractures. This happens as part of ageing in the normal population but may happen earlier in life due to factors such as a lack of exercise, treatment with steroids and some other chemotherapy drugs or radiation.
 

Another potential problem with your bones is avascular necrosis (AVN). This is where the bone breaks down, often near a joint. This is most common in those who have received a lot of steroid therapy. Depending on which joint is affected, people may experience difficulties with walking or sporting activities. Sometimes specific scans, such as an MRI scan, may be helpful in diagnosing avascular necrosis or similar problems. Specialist advice from an orthopaedic team is helpful in discussing the best treatment options.

• Bone health - osteoporosis
• Bone health - AVM
   

Female CTYA cancer survivors who were treated with chest radiation and/or upper abdominal radiation where breast tissue is exposed to radiation, need to be aware of the increased risk of breast cancer.

Due to this increased risk, you should enter the national enhanced screening programme for women at higher risk of breast cancer. In young women this usually includes an MRI scan. Screening should commence at the age of 25, or 8 years after you first had radiotherapy, whichever is later. Please make sure your GP is aware of this so that they can make the necessary referral into the programme.

• cclg-late-efcts-breast-cancer-2022.pdf

If you have received head or brain radiotherapy, or methotrexate chemotherapy, you may develop problems relating to cognition and / or memory.

Please speak to your medical team if you are struggling in school / college / university.

A psychometric assessment may be  helpful at appropriate time points after your treatment to help assess learning and implement any additional support that may be needed.

Head or brain radiotherapy may increase your risk of developing second tumours which may be benign such as a meningioma, or, in rare cases, malignant. 

Symptoms of concern should be promptly investigated, such as persistent or recurrent headaches, repeated vomiting, blurred vision, or loss of function or weakness of limbs, or altered sensation along the limbs, or any symptoms suggesting fits.

• Cognition and learning difficulties | The Brain Tumour Charity

Some cancer treatment could affect your fertility; your treating team should have made you aware of this if it is relevant to you. If your ovaries are producing eggs after treatment and you are having periods, your window of being fertile may be shorter than expected and you may have an early menopause. 

It may be possible to reassess your fertility after treatment and ask for a referral to a specialist fertility doctor to discuss this with you if you wish. 

You should never assume you are infertile: you should always take care to use contraception unless you are trying to conceive, and, as part of a general healthy lifestyle, to protect yourself from sexually transmitted diseases.

• Support for premature ovarian insufficiency
• Early Menopause due to cancer treatment
• CCLG reproductive health fact sheet

 Chemotherapy and radiation can affect the health of your teeth. Survivors of cancer may be at increased risk of developing cavities, having abnormal development of the teeth, roots of the teeth and the protective tooth enamel, as well as small or absent teeth. It is important to share a history of cancer treatment with your dental health professional and attend regular dental check ups every 6 months to preserve dental health. 

If you had radiotherapy to your pelvic area, it is normal to experience some late effects from the treatment, however this will be individual to you. Your treating team and GP will help support you with this if they occur.

Bladder and bowel problems: you could experience urinary incontinence or frequency and/ or frequent bleeding. You may have constipation or diarrhoea and in rare cases, blockages in the bowel.

Sexual dysfunction and / or infertility: it is important you have a referral to the correct specialist depending upon your reproductive organs: a gynaecologist or urologist (or your GP), to discuss these issues if you have concerns.

Radiation-induced fibrosis: this is when tissue hardens and scars.

Restricted growth: in children and young people who have not finished growing, there may be some restricted growth of bones and tissues in the area where radiotherapy has been given.

Osteoradionecrosis: weakening of your bones in the hip joint or vertebrae in the lower back, which may or may not be painful.

Lymphoedema: fluid collecting in the tissues near to blocked lymph glands affected by radiotherapy. Ask you team about being referred to a specialist lymphodema clinic.

• Late effects of pelvic radiotherapy | Macmillan Cancer Support