Cancer Care Guide

A Care at Home Guide for people with Cancer

Introduction

Diagnosis

  • Signs & Symptoms
  • Progression of cancer
  • Treatments & prognosis
  • Risk factors

Broad view

  • Coping with a diagnosis
  • Caring for someone with cancer
  • Supporting families
  • Case studies

Cancer care at home

  • Domiciliary care
  • Live in care
  • Respite care
  • Palliative care

Who delivers cancer care

  • What sort of care to expect
  • Care agencies
  • Care assessment
  • Questions about cancer care

Introduction

The term ‘Cancer’ strikes an emotional reaction from everyone. Statistics show that within a lifetime one in three people will be diagnosed with some form of cancer. This means that everyone has experienced or will experience a personal connection with a relative or friend that has been treated for cancer, living with cancer or sadly may have died from cancer.

It is important to realise that not all forms of cancer will result in an early death, many cancers are avoidable; treatable or containable. However, there are also many aggressive forms of cancer for which there are equally aggressive treatments, Research into the causes of cancer and into more effective treatments to eradicate it, is an ongoing and relentless process.

The effect that cancer can have on a person, their family and friends will vary depending on many factors. The general physical and mental health of the patient is paramount. No formula can be applied to test out patient resilience or reaction to treatments. Understandably it is paramount that appropriate care and empathy is afforded during all stages.

The message is that no one should have to face cancer alone and that everyone involved needs support and care

What is cancer?

In general terms, Cancer is a condition where the cells in a particular part of the body grow and reproduce uncontrollably. This excessive cell growth can cause lumps or blockages that may be limited to a specific area or may spread to many other parts of the body (metastasis). Cancerous cells can invade and destroy healthy tissue and vital organs sometimes at an alarming rate.

When these abnormal or rogue cells grow and form new cells, they are then capable of reproducing more abnormal cells. By creating a tissue mass, these rogue cells will affect the body’s normal functioning by causing vital organs to shut down gradually. Not all abnormal cells form a mass, for example, the rogue cells that cause leukaemia do not form tissue masses, but still, cause life threatening problems throughout the body.

Cancer has no respect for age, intellect or ethnicity although some forms of cancer are more prone to genetics, lifestyle choices and environmental factors. The three most common cancers in the UK are:

  • Breast cancer
  • Lung cancer
  • Prostate cancer

However, there are more than 200 identified types of cancer, which are diagnosed and treated in different ways.

Cancer statistics

There are a vast amount of statistics that give currently diagnosed cases of cancer; treatment success; deaths and projections on future occurrences.

The most recent significant statistics highlight the fact that more cases of cancer are being diagnosed and detected than there have been in the past. Additionally, there are significantly more people who are living with cancer as opposed to dying of cancer than previously reported.

In 2014 in the UK there were 356,850 new cases of cancer. In the same year, there were 163,44 deaths attributed to cancer.

In 2014 rate at which people were surviving cancer for 10+ years after treatment had increased by 50 % (NHS England & NHS Wales statistics).

42% of diagnosed cancer cases were preventable.

Not everything causes cancer as we are sometimes led to believe.

Cancer is not contagious.

An injury does not cause cancer.

Diagnosis of cancer

The signs and symptoms that are used here are generic and may be attributed to other medical conditions. If you or someone you know are experiencing any of these symptoms, it is always a good idea to talk to your GP.

Additionally, if your GP refers you to a specialist, it does not necessarily mean that you have cancer, but it does mean that your symptoms need to be checked out.

It is statistically proven that only a small number of people who are referred to a specialist will have cancer. Early diagnosis can mean that treatments are more successful.

Signs & Symptoms

Some of the symptoms that are caused by cancer are not specific to a body area. This means that if a symptom is experienced in one part of the body, cancer may actually be somewhere else in the body.

The following general symptoms may be due to cancer if it is evident that another illness or injury has not caused them.

  • Unexplained or unintentional weight loss.
  • Loss of appetite.
  • Swollen or painful legs that have been assessed for a deep vein thrombosis but no DVT was found.

Any of the above symptoms should be checked by your GP, who will look for additional signs and symptoms that you may have missed, such as experiencing severe fatigue and/or recurring infections.

Additionally, if you have ever smoked or are over 40 or have been exposed to asbestos, you will be offered a chest X-ray, ideally within two weeks of seeing your GP. This is important especially if you have a cough that has lasted for over three weeks; are experiencing shortness of breath; chest pain; tiredness; weight loss and lack of appetite.

Stages of cancer

Most cancers have four stages (1 to 4) however some cancers have a stage 0. The grade that cancer is given is determined by inspection of sample cells under a microscope and then compared to specific criteria on its resemblance to a ‘healthy cell’.

Biopsies that are taken from tissue masses (tumours) whose cells closely resemble healthy cells are ‘low grade, but samples from biopsies that are very different in structure to healthy cells are called ‘high grade’ meaning that they differ significantly from the norm and may spread very quickly.

Stage 0 – If cancer is given a grade 0, it means that the tissue mass is located near to where it originally started and had not spread to other tissues or organs. This type of cancer is usually curable and can be removed surgically.

Stage 1 cancers – usually refers to a small tumour that has not grown deep into surrounding tissue or spread through the body.

Stage 2 and 3 cancers – Refer to cancers that have grown deeper into surrounding tissues and may have spread through the body via the lymphatic system.

Stage 4 cancers- are the most advanced stage of cancer, it has metastasised and spread through the body and affected several organs.

Doctors refer to these stages of cancer to help formulate care and treatment plans; predict the chance of recovery and to predict the likelihood of cancer coming back after treatment.

Cancer Treatments & prognosis

Treatment will depend on the type of cancer, how far it has progressed and the patient’s current general health. The aim of any cancer treatment is to eradicate as many cancerous cells as possible at the same time as causing minimal damage to the healthy cells that surround the area of cancer.

There are three primary cancer treatments which depending on the cancer and the damage that it has caused can be used independently or in combination.

Surgery – This means that the tumour is removed and as many cancerous cells as possible so as they do not continue to cause damage or relocate to another area of the body.

Chemotherapy – The use of a cocktail of strong chemicals that will kill the cancer cells.

Radiation – Using X-rays to kill cancer cells.

With each of these treatments, there are side effects that can be unpleasant and may in the case of surgery be life changing. It is important to bear in mind that these treatments are effective and they are life-saving. Many of these traditional treatments can be made more effective and bearable through the use of complementary therapies such as aromatherapy; yoga; massage’ Tai Chi and art therapy.

Prognosis will depend on the type of cancer and how far it had progressed before it was diagnosed. It will also rely on the patient, their general health and their resilience. It is only in the very late stages of cancer that a prognosis can be accurately given as there are so many other influences that need to be taken into consideration.

Side effects of treatments

There is a range of therapies that can be used to help combat the side effects of cancer treatments and also maintain physical and mental health. Typical side effects may include nausea, pain, fatigue and depression.

Help may be needed to cope with daily living especially on days when fatigue and suffering seem to be insurmountable.

Other supportive services may include the use of oncology rehabilitation; counselling; stress management; nutrition therapy and homoeopathic medicine alongside more conventional medication.

Risk factors

Although the actual cause of cancer is unknown, there are specific risk factors that have been identified, these include:

  • Tobacco use (including secondary smoking). This can be prevented by quitting smoking or avoiding places where other people smoke.
  • Exposure to the sun. This risk factor can be reduced by using sunscreen and limiting time in the sun.
  • Exposure to radiation/chemicals. Prevention can take the form of following correct procedures when handling chemicals; biohazards etc.
  • Certain Viruses such as HPV. Elimination of this risk can take the form of immunisation and protected sex.
  • Some hormones treatments. The risk here may be in the form of prescribed hormone treatments or self-prescribed grown hormone therapy.
  • Alcohol abuse. This can cause abnormal growths in the mouth as well as causing premature ageing and wrinkles through dehydration.
  • Poor diet and lack of physical exercise. Risks are vastly reduced when a healthy diet is maintained and regular exercise is taken.

However these factors do not necessarily mean that the development of a cancer is a certainty, it means that there is a level of probability. Sometimes just growing older can cause a risk of developing cancer.

These risk factors can be avoided, but others cannot be avoided. One of the biggest risk factors is having a having a family history of cancer, but just like other risk factors, it does not mean that there is a certainty that cancer will develop.

Most people who have one or more risk factors may not develop cancer. However, several factors may act in conjunction with each other to cause healthy cells to become cancerous.

Broad view

Coping with a diagnosis

Being diagnosed with any serious disease can be life changing. It can also be a double edged sword as once a diagnosis is made the appropriate effective treatments and care plans can be put into place, but on the other hand, a diagnosis may bring the realisation of the worst possible fears that have been resounding for a considerable time.

The more information that you have about what to expect can relieve some of the stress. Information and support are probably the best tools that are needed. Initially, these are some of the general questions that you will need answers for:

  • What part of my body did the cancer start? Has it spread?
  • What type and stage of cancer do I have?
  • Is it treatable?
  • Is it curable?
  • Do I need additional tests or procedures?
  • What treatment options are recommended?
  • What can I expect during the treatment? What side effects can I expect and how can I minimise the side effects?
  • Is my cancer genetic? If so when should other family members be tested?
  • If my cancer is curable, what is the possibility of it reoccurring?

Bear in mind that not everyone wants to know all of the details about their cancer, while other prefer to just know the basics and leave any decisions and details for their doctors to manage.

If you know the details of how the treatments can affect, you can anticipate aspects such as hair loss, prostheses and adaptive devices. Advance advice can be sought from support groups about clothing, makeup and wigs. Consideration can also be given as to how treatment will affect daily life, as chemo and radiation treatments can impact on work schedules.

Exercise and nutrition during treatment should not be neglected as it can help to maintain good general health.

Caring for someone with Cancer

For the person who is diagnosed with cancer, there is the worry about their own health and morbidity. It can be just as difficult for them to talk about their illness as it is for family, loved ones or friends to engage in conversations. No matter how close the relationship, there is still the worry of saying the ‘right thing’ and not appearing terse or uncaring.

It can be difficult to cope with the uncertainty of the illness and the treatments. This can result in fluctuating emotions that bounce between good days and days that are not so good. Mood swings from anger to sadness to fear can be regularly experienced, especially during cancer treatments.

It is important that the person who has cancer is treated as normally as possible. They should be included in family and social events. Make them feel valued and that they are still accepted as part of a group If they feel that they are not up to taking part in a planned activity they will let you know, let it be their decision.

Do not take it as a personal affront if they do not want to talk about their illness with you; this is not because they do not want to confide in you, they would probably like the distraction of talking about everyday things. However, if they want to talk about their illness then don’t be afraid to be part of the conversation.

If they confide in you, be a good listener. Being a good listener does not mean that you have to offer a response, just listen. Even if you disagree with some of their decisions about their choice of treatment, then you must respect their choices.

Don’t be judgemental.

Supporting Families

It can be difficult as a patient to sometimes accept help, and likewise, it is the same for family friends and loved ones to accept help.

Friends and family will often help by running errands; preparing meals doing household chores and arranging transport for medical appointments and therapies. Accepting their help gives them a sense that they are contributing to your recovery, but at times it is important that accept help that is offered to them so that they continue to remain strong to support you.

Without support carers can soon have ‘caregiver burnout’. Family and friends may benefit from a support group where they can speak openly with others about what they are going through and develop appropriate coping mechanisms. It is paramount that they realise their own importance in your treatment and recovery.

Just like their loved one that has cancer, family and friends do not always want to talk about cancer. They can also have ‘bad’ days when they just need a break. It is important they also have a secure support network that they can call on to provide appropriate care in their absence no matter how brief.

Case studies

Michaela was diagnosed with breast cancer at the age of 66. She had found a lump under her right arm and immediately arranged an appointment with her GP. The GP organised for a biopsy and consultation with an Oncology specialist. The Oncologist arranged for the lump to be surgically removed.

However, on closer inspection, the tumour contained rogue cells that were regarded as particularly aggressive. The Oncologist felt that appropriate follow up treatment should include chemotherapy and radiation therapy. Her stay in the hospital after surgery was a brief two days before discharge.

Chemotherapy was to take place at her local hospital on 6 x three-week rotations. When the chemotherapy was complete radiation therapy started at the nearest centre which was an 80-mile round trip every other day for six weeks.

Her husband was able to accompany her to most of her appointments, but close friends supported them by taking it in turns to help with the transportation for radiotherapy. Another friend provided home cooked meals.

Housework and gardening were supported through a care agency that provided domiciliary care. This additional care also meant that Michaela had someone to talk who understood her treatment but was someone outside of the circle of family and friends that she could rely on and confide in.

Michaela did lose her hair during treatment and had severe nausea for a while. However, she made a full recovery and has been cancer free for 15 years.

Rita (aged 53) had been experiencing difficulties with her bowels for a considerable amount of time. She has been encouraged by her daughter to go and see her GP when she disclosed that she had blood in her stools and that she had lost a considerable amount of weight.

Upon examination, her GP found a large mass in the area of the lower stomach. He swiftly arranged for her to see an Oncologist. The Oncologist felt that he would like to start immediate treatment to try to shrink the mass. Rita underwent several rounds of chemotherapy.

She agreed to a type of chemotherapy that would not cause hair loss. After the chemotherapy had been completed, the Oncologist reviewed the progression of the cancer.

At this point, as there had been no shrinkage to the mass and in fact, it had got larger and had now encompassed the liver that the only way forward was with palliative care. This level of care was provided in liaison with the support of the GP and a care agency. Rita sadly passed away but was at home surrounded by her family.

Cancer care at home

Treatment for cancer usually takes place as an outpatient or in a day hospital. Patients who have a strong emotional support network are proven to be better able to cope with their treatment and with any side effects. Their network may come from family and friends, or it may come through a care agency or a combination.

Domiciliary care

Domiciliary care will support you by helping with personal care or with household care or both. Your carer will make sure that you have your medications, and help you find out information about additional therapies or support groups that you may like to attend. If you want they can also accompany you to attend your medical appointments.

Live-in Care

Live-in care may be an option especially if the person that is undergoing treatment lives on their own or their partner has health problems. A live-in carer will make sure that your daily routine remains unchanged and that you do not always have to rely on friends for transport to medical and treatment appointments.

They will also make sure that you choose your own meals and eat what you feel you can, given any treatment side effects such as nausea. They will also ensure that that you have pain relief when you need it. They can encourage friends and relatives to visit for short periods depending on how you feel at that time.

Other tasks can include housework, laundry and help in looking after pets as well as liaising with your GP and Oncologist.

Respite Care

Everyone needs a break some time, and people with cancer and his or her family and friends are no exception. The situation may arise where the primary carer may need to attend a work conference or the person being cared for may not feel well enough to travel and join in a family celebration.

In these circumstances, it may be an idea to access respite care so that the client feels that they are not preventing their close family from attending a function and likewise family do not feel that they are abandoning their loved one.

Respite care may be for a day or a few days and can take place in the familiar surroundings of home. The family are encouraged to check in with the carer (and this could be by text or a phone call) if they are worried.

Palliative Care

Palliative Care can provide support not just for the client but also for their family and loved ones to enable them to manage changes and develop coping strategies. By supporting the family, the client is also supported.

People who can benefit the most from Palliative care are people who have been diagnosed with a serious illness or complex health problems such as dementia, heart failure, and cancer. Palliative care can be available in any care setting but ideally in the client’s own home.

Palliative care can be tailored to the values, beliefs, culture, personal goals, and preferences of the client. Families and loved ones can also feel less stressed, more supported and additionally more informed than if their relative was being cared for in a care home or hospital.

Who delivers cancer care?

What sort of care to expect

You can expect a care package that is personalised to your needs and your requirements. The care package will be tailored to your preferences and your routines. This is important as due to fatigue some days will be better than others.

Care Agencies

Not all care agencies can provide the support that a cancer patient needs. A good care agency will aim to provide support that promotes client independence, but due to the nature of some of the treatments for cancer, a patient can often feel chronic fatigue, nausea; depression and isolation so will need additional support.

A care agency that provides a person-centred approach is able to understand that every client is unique, and the effect of cancer and cancer treatments can have variable physical, emotional and psychological effects. A good care agency will always encourage a client towards independence through positive attitudes that can enhance the quality of life.

Care assessment

As the effects of the illness progress or the effects of the treatments become apparent, you may find that you will need help and support for everyday living. The assessment is informal, and it involves a senior care manager meeting you in your own home. During this meeting, the care manager will get to know you as a person, how your illness and the treatment affects you and the level of care that you will need initially.

Questions about cancer care.

The aim of this list is to give you an idea of the type of questions that you may like to ask the senior care manager. This list is by no means exhaustive.

  • How much experience do you have of supporting people with cancer?
  • Will my carer have experience of looking after someone with cancer?
  • Will you be able to liaise with my GP and Oncologist about an aspect of my care?
  • Will my carer be able to help me with any of the side effects that I experience from my treatment? (e.g nutrition)
  • How will you oversee the quality of care that I receive?
  • Who is my contact if I (or my family) have concerns over the care I am receiving?
  • What happens I need additional care?
  • If I need palliative care, will you be able to provide it?
  • Are your carers able to provide emotional support for my family as well as myself?

The senior care manager will be able to answer these and any other questions that you may have about your care and supports. They may also be able to signpost you to additional information that is available.