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Coping with caregiving
What is cancer?

Cancer is the name for a collection of related diseases characterized by the excessive growth of cells.

These cells grow beyond their usual boundaries; invade adjoining parts of the body, spreading to other organs. These excess cells are able to multiply without stopping and may form abnormal growths, usually called tumours. Other common terms are malignant tumours and neoplasms.
There are in fact many subtypes and each requires a specific management strategy.

different types

There are more than 200 different types of cancer

There are more than 200 different types of cancer affecting almost any part of the body, and each has its own name and corresponding treatment. As cancer tumours grow, some cancer cells break off and travel through the body via the blood or lymphatic system, forming new tumours in distant parts of the body away from the original tumour.


cause of death globally

Cancer is the second leading cause of death globally and accounted for 8.8 million deaths in 2015.

In the European Union, almost 1.3 million people died from cancer in 2014. This was more than one quarter (26.4 %) of the total number of deaths.

This makes cancer an extremely challenging and serious illness. When this happens, it is called metastatic cancer, as the process by which cancer cells spread to other parts of the body is called metastasis. For many types of cancer, it is also called stage IV cancer.

The good news is that new and innovative treatments are helping people eliminate the disease or turning the cancer into a controlled and manageable chronic disease. The reality is though that cured people as well as those with chronic cancer may require prolonged carers support just as much as those undergoing active treatment.

A series of individual and environmental factors are highlighted by research as being associated with a higher risk of cancer. These include: tobacco, chemicals (carcinogens), obesity, infections, exposure to radiations, and autoimmune diseases.

Some dietary habits such as heavy consumption of red meat, chronic alcohol consumption, and long-term exposure to food additives are also considered as generating a higher risk of cancer. In addition, heredity can play a role.

The Prognosis And Dietary Habits

The prognosis and dietary habits

The prognosis is the likely course that the cancer will take. It is determined by a number of factors, including the size, location and stage of the cancer, the type of cancer, treatment options and their effectiveness, the person’s age and health status….

“Cancer is a fluctuating condition with long treatment cycles. So, the carer may move in and out of caring due to periods of remission, or the nature of the treatment.”

The person affected by cancer may be proposed one of several of the treatments below:

Surgery: Surgery involves removing all or part of the cancer with an operation. It is an important treatment for many cancers.

Hormonal therapies: Hormonal therapies work by altering the production or activity of particular hormones in the body. Targeted (biological) therapies: Targeted (biological) therapies interfere with the way cancer cells grow and divide.

Chemotherapy: Chemotherapy uses drugs to treat many different types of cancer. It is most commonly given as an injection into a vein or as tablets or capsules.

Targeted (biological) therapies: Targeted (biological) therapies interfere with the way cancer cells grow and divide.

Radiotherapy: Radiotherapy is the use of high-energy rays, usually x-rays and similar rays (such as electrons) to treat cancer.

Stem cell and bone marrow transplants: Stem cell and bone marrow transplants are used with high-dose chemotherapy to treat and control some

The majority of people with cancer receive chemotherapy as well as surgery or radiation therapy. The aim for curative therapies is to eliminate all cancerous cells and “cure the cancer,” resulting in “complete remission.” Complete remission means that tests, physical exams, and scans show that all signs of your cancer have disappeared. Depending on tumour characteristics, treatment goals can also include controlling the disease rather than curing it.

Palliative care is for people living with a terminal illness where a cure is no longer possible. It may also be used for people who have a complex illness and need their symptoms controlled. Although these patients usually have an advanced, progressive condition, this isn’t always the case.

Palliative care aims to improve the quality of life of these patients and their families, through the prevention and relief of pain and other problems associated with the illness.

Breast Cancer

There are different types of breast cancer

Ductal carcinoma in situ (DCIS) is the earliest form of breast cancer. DCIS is when there are cancer cells in the ducts of the breast. These cells are contained (in situ) and have not yet spread into normal breast tissue. DCIS may show on a mammogram and is usually diagnosed through a breast screening.

Lobular carcinoma in situ (LCIS) is not breast cancer, although its name can be misleading. Changes in the cells lining the lobes show a woman has an increased risk of developing breast cancer later in life. But most women
with LCIS don’t get breast cancer. They do however have regular check-ups with breast examinations and mammograms.


Most invasive breast cancers start in the ducts of the breast.

Invasive breast cancer means the cancer cells have spread outside the lining of the ducts or lobes into the surrounding breast tissue. Most invasive breast cancers (80%) start in the ducts of the breast. About 1 in 10 invasive breast cancers (10%) start in the lobes of the breast. This type can sometimes be difficult to diagnose on a mammogram because of the way it grows. Some women may need a magnetic resonance imaging (MRI) scan.

Uncommon types of breast cancer

Inflammatory breast cancer This is when cancer cells grow along and block the tiny channels (lymph vessels) in the skin of the breast. The breast then becomes inflamed and swollen.

Paget’s disease of the breast This shows as a red, scaly rash (like eczema) on the skin of the nipple. Women with Paget’s disease may have DCIS or invasive breast cancer.

Breast Cancer

Though it also concerns men, breast cancer is the most common cancer in European woman. 1 in 8 women in the European Union will develop breast cancer before the age of 85. An average of 20% of breast cancer cases in Europe occur in women when they are younger than 50 years old; 37% occur between the ages of 50–64 and the remaining cases in women above this age. Breast cancer therefore affects many women during their years dedicated to working and raising a family.


European woman


younger than 50 years old

It is estimated that 91,585 women died from breast cancer in 2012 in the European Union. The increasing number of breast cancer cases may be due to changes in lifestyle habits: for example a more sedentary lifestyle, weight gain, obesity and sociological changes, such as women having fewer children and having them later.

The prognosis is determined by a number of factors, including the size of the breast cancer, the stage of the breast cancer, the type of the breast cancer, the person’s age and health status…. New and innovative treatments are helping people diagnosed with breast cancer live longer than ever before. Still, breast cancer may come back or spread to other parts of the body after treatment.

You may want to know more about the disease and treatments. While many websites provide information on cancer, it is important you rely on information that is trustworthy. Check the sources of information listed in your country information sheet if available, or ask your general practitioner to direct you to information sources you can trust.

The cancer carer’s journey

“My advice would be to be well informed in advance about what the carer’s job means concretely, e.g. what are the tasks, risks and burdens. To become a carer is a serious decision. Be aware of all aspects and be ready to prevent potential difficulties.”

Each situation is specific, and will depend upon the type of cancer, the prognosis, and the family situation… And in how far your loved one is prepared to speak openly about the disease and ask for help. Here, people who have been caring for someone with cancer, describe some of the roles and tasks they have typically undertaken.

First, they help the person on a daily basis as their autonomy has been reduced because of the disease. This entails helping with shopping, cooking and cleaning, dealing with administrative tasks, and also with personal care when needed.

Supporting a person with cancer may also involve contributing or helping to manage the financial costs linked to the illness and its treatment, and planning for the future caring situation.

They also provide emotional support to the person with cancer and other relatives. Indeed, they are often the ones who have open communication with the cancer patient and other family members, relatives and close friends about the cancer diagnosis and prognosis. When supporting a relative with cancer, they engage with health and care professionals and are involved in discussions regarding treatment options.

In case of at-home treatment, they may ensure the coordination of health and care interventions, facilitate the person’s adherence to treatment (for example making sure he/she goes to his/her medical appointments, takes his/her medicine, as well as carrying various healthcare tasks such as giving injections, changing dressings, and helping manage the side-effects of treatment.

“I have been a link between the outer world and the patient, (…) explained treatment and prognosis details where there was no time for it from a professional, participated in running the household and activities.”

“The disease still represents a certain barrier to healthy active people”.

People taking care of a person with cancer are sometimes confronted with negative attitudes towards cancer, or experience discrimination in their social life or work place. Such attitudes mainly come from a lack of information and knowledge about cancer and the role of carers.

Emotional Support

Emotional support

Role of carers

Work place

Breast cancer

When it comes to Breast Cancer, people may have false understanding and think it is now easily curable, and therefore underestimate the burden of treatment, as well as the threat to life and the tiredness or fatigue that may be associated with the diagnosis itself and the subsequent treatment. Such views may also be true for other family members, friends and employers.

Diagnosis itself


“Ask for help from other carers, professionals, family and friends. We usually underestimate the level of help family and friends are willing to provide.”

Think about the actual needs of your loved one, and how this may evolve over time. Taking care of a person with cancer may imply various roles and tasks, some of which you may not be prepared to handle. You may feel under pressure to take this role. Caring activities may also be difficult to combine with your professional and personal responsibilities. You may think about asking support from your family, friends and neighbours, finding out about statutory support, or getting support from civil society organisations.

Naturally, children live in hope; this means that young people who take care of a relative may need particular support, allowing them to build their own life through education and social activities.

Be yourself

You cannot hide the soul and the sorrow.

Caring for a loved one with cancer can be overwhelming; indeed you may experience many different feelings.

You may find it useful to try and talk about your feelings with the person you are taking care of, if it is relevant, and with other external persons.

If you are feeling isolated, you may find support with civil society organisations helping people with cancer. This can be face to face, online or over the phone.

Talk about your feelings
Talk about your feelings
Cancer organisations
Cancer organisations

“Ask for help from other carers, professionals, family and friends. We usually underestimate the level of help family and friends are willing to provide.”

“My advice would be not to put too many things in your life on hold, despite the uncertainty.”

Managing these different roles is made all the more difficult by the changing nature of the disease as well as of the needs of the person, particularly as they may go back and forth between treatments, periods of recovery, and ups and downs. Uncertainty about the situation of the person with cancer may last several years, therefore it is important to mind your own needs and projects as much as possible. Besides all else, they are a source of energy, diversion, social and financial support.

Ups and downs
Ups and downs
Diversion and social support
Diversion and social support

People affected by breast cancer are mostly women. Many are also actively raising a family or taking care of other relatives (parents, grand-children…). You may need to take over this role, or arrange for someone else to

take on these responsibilities. Try and discuss the best way to manage the patient’s usual caring tasks. If you find this difficult or feel uncomfortable doing so, do not hesitate to ask for external help.

Role Of Carers

Role of carers

External Help

External help

The value of being a carer and living well

“Remember this is a marathon rather than a sprint!”

Being a carer sometimes makes it difficult to take care of yourself. Priorities will change as disease condition progresses and looking after yourself usually takes the last place on a long list of heavy duties. Caring for a loved one isn’t an easy task, but it is important to understand the value of being a carer and living well. Being in good psychological and physical shape helps you provide better quality care. Below you can find useful tips for looking after yourself:

During the day, find leisure time even if it is only for one hour or less and do something that you enjoy indoors or outdoors (reading a newspaper, having a relaxing bath, learning a new language, doing some exercise or relaxation, going for a walk, going shopping).

Diagnosis itself

Take a break. Once a month arrange to take a day off. Arrange your break with
the rest of your family, a neighbour, a friend, a care professional or an agency,
in order to make sure that someone else will be there for the person you care for.

Try to follow a balanced diet.

Call a friend or relative regularly. Try to stay in touch!

Whenever you aren’t feeling well (mentally or physically), get advice from your family doctor. Don’t let a problem grow!

Exercise regularly. If you don’t have much time, even 30 minutes can make a
difference. If you are an internet user you can watch a video and work out at the same time.

Create a support network. Get in touch with other carers with similar difficulties, through carers or condition-specific organisations. Participate in group or individualised interventions. It can help you understand the situation and handle emotions as anxiety, depression and guilt.

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