T gether We Care Guiding you through
life after cancer
diagnosis
A
Special Edition for Cancer Care
Dear Readers, In collaboration with the National Cancer Council Malaysia (MAKNA) and CCM Pharmaceuticals, HealthToday is pleased to present to you TOGETHER WE CARE, a series of booklets exclusively produced to act as a vital resource about cancer and to offer practical advice on how to effectively cope with cancer. The goals of this series of booklets are to promote public awareness of cancer, as well as to improve cancer care among patients and caregivers. As this series covers the various aspects of one’s journey with cancer such as diagnosis, treatment, recovery and beyond, they will be useful for someone who has been newly diagnosed or is currently undergoing cancer treatment. If you are a caregiver for someone with cancer, you will also find these booklets insightful as they also provide practical tips on how to offer better care to your loved one in order to improve their quality of life. You can also discover how other cancer survivors stood up to cancer at the end section of every booklet. Just like coping with the many other problems in life, different people can have different ways of coping with cancer. However, we hope that our input via this series of booklets will be a valuable resource in helping you to navigate your or your loved one’s way through cancer journey. ‘Guiding you through life after cancer diagnosis’ is the first booklet in the series, focusing on life after cancer diagnosis. Do also stay tune for our upcoming booklets in this series. Chai Pui Fun Editor
Our Partners: Publisher Ben Yeo General Manager Kimberly Lai Editorial Advisor Lim Teck Choon Editor Chai Pui Fun Designer Ho Kan Keong
Production Coordinators Pramila Lingam Ho Kan Keong Group Business Manager Violet Lew Business Manager Choong Miew Ling
is published by MIMS.
PP9626/12/2012 (031440) (Malaysia)
Foreword by MAKNA With cancer or any other disease for that matter, it has always been the case that collaboration from various segments of society is a necessary ingredient for breakthrough. As a society, our fight against cancer needs to be a concerted effort with different individuals and organizations bringing to the table their own expertise and capacities – which will allow for the efficient use of resources towards addressing the cancer challenge with successful results. This cancer information series, a result of the collaboration between HealthToday, CCM Pharmaceuticals Sdn Bhd and MAKNA, is a fine example of putting forward one’s expertise to contribute towards tackling a larger issue. For more than two decades of fighting cancer, MAKNA has worked with numerous cancer patients, survivors, families, caregivers, hospitals, government agencies, companies, NGOs, individuals, researchers and the general public. Our approach is focused on these partnerships and in the bringing together of different segments of society who can contribute best in different areas, towards the cancer cause. There are currently a number of program that MAKNA carries out in collaboration with other organizations, such as our cancer centre jointly run with Pusat Perubatan Universiti Kebangsaan Malaysia, our bursary assistance program which receives referrals from 88 government hospitals via the Department of Medical Social Work – the success of each program depends on the strength of MAKNA and its partners’ teamwork. As cliché as it may sound, together, we achieve more. The support from MAKNA as helpful as it is only covers but a fraction of the cancer incidences in the country. It is therefore fortunate that there are many other organizations that also support the cause against cancer. Yet, still many cancer patients are facing a lonely battle against cancer, unaware of the support available to them. Awareness and outreach are therefore still very much of a challenge for us here in Malaysia. In light of this, I wish to thank you, the reader, for taking the important step of picking up this booklet and making the decision to learn more about cancer. By raising your own awareness and reaching out to someone who might benefit from the information in this booklet, you are making a significant difference.
DATO’ MOHD FARID ARIFFIN Founder and President
Foreword by MAKNA
1
The basics of cancer
2
Understanding cancer
B
eing diagnosed with any form of cancer will definitely bring a lot of changes to you and your family. Many questions may come up in your mind, such as why did this happen to you, can the cancer be cured, how long can you live etc. As scientists are working very hard to find out the exact cause of cancer and subsequently the best possible treatments, you should not let these questions bother you; instead, focus on what you can do for your
body and your mind to benefit your health in the many years to come. Advancement in cancer research has made cancer treatable for many people, which enables them to continue living full lives after treatment. So, don’t give up hope or feel discouraged just yet! We are here to help you. This booklet will help you better understand what cancer is and to make well-informed decisions on how to move forward.
Overgrowth of the mutated cells Cell with gene mutation
Invasive cancer Cancer that has spread into surrounding, healthy tissues
Formation of a group of abnormal cells
What is cancer and how does it occur?
colon, the skin, the stomach, or even in the blood.
Cancer is a disease of the cells, which are the building blocks of tissue in our bodies. Under the control of genes, the cells in our bodies replicate in an orderly manner – they die when they are old or damaged, and will be replaced by new cells. However, there are times when the genes become mutated, causing the cells to grow at an uncontrollable rate, resulting in what we call a ‘cancer’. As of now, the cause of gene mutation remains unclear. Because cancer cells can grow more quickly and live longer than normal cells, they will outnumber normal cells, leading to problems in the affected body part or organ. As time goes by, cancer cells may develop into a mass called the primary tumour. The untreated primary tumour can grow through the outer parts of an organ or structure and into other tissues, leading to a condition called invasive cancer. Cancer is not just one disease; there are many types of cancer, depending on where it originated from. It can occur at any place in the body – in the lungs, the breast, the cervix, the
Sometimes, cancer cells can leave the tissue in which they started growing and spread to other parts of the body (also known as metastasis). This process can happen through your blood or lymph – a clear fluid that supplies cells with water and food, and contains white blood cells that help the body to fight against foreign invaders (eg, germs). Cancer cells that have spread can grow and replace many normal cells in the newly affected site.
Cancer foci Cancer cell
Bloodstream Vessel lumen
Metastases
Red blood cell
The basics of cancer
3
The basics of cancer
4
Who is at risk of cancer? Cancer can happen to anyone at any age, but the risk increases with age. What causes cancers is not fully understood currently, but certain risk factors can increase a person’s chance of getting a certain type of cancer. Some of these risk factors are modifiable, whereas some are not. Non-modifiable risk factors: • Age • Sex • Family history Modifiable risk factors: • Unhealthy lifestyle, such as smoking or drinking alcohol • Unhealthy diet, which is thought to be partly responsible for about 30% to 40% of all cancers Environmental factors, such as long-term exposure to chemicals in tobacco smoke and excessive radiation (eg, ultraviolet rays from the sun) may also damage DNA and expose a person to a higher risk of getting cancer.
Stage
However, cancer is a very complex subject. Having risk factor(s) does not necessarily mean that a person will definitely develop cancer. There are also cases in which people get cancer without having any known risk factors. Even if a person who is diagnosed with cancer has risk factor(s), it is still difficult to tell which risk factor may have led to the cancer development. Although some cancers can also run in families, cancer is not passed down from your parents to you the same way as other physical factors such as height, eye colour and hair colour. Some people can also get cancer even if no family history of cancer is present.
What is cancer staging? Your doctor may have informed you that you are at stage 0, stage I, stage II, stage III or stage IV of the cancer. This is called cancer staging, which represents the severity of your cancer and how far the cancer cells have spread. The lower the number, the less serious and widespread the cancer is.
What it means
Stage 0
Abnormal cells are present but have not spread to nearby tissues. This is also known as carcinoma in situ, which means it is not yet a cancer, but there are chances that it can turn into cancer
Stages I, II and III
Cancer is present. The higher the number, the larger the cancer tumour and the more it has spread into nearby tissues
Stage IV
The cancer has spread to distant parts of the body
Your doctor will use this as a guide in recommending the treatment options which best suit you.
5
Getting a
Coping with diagnosis
second opinion
F
eeling uneasy and having a strong urge to begin treatment soon after your diagnosis? As tempting as it may be, do not rush into any decisions just yet. Take a step back and try to reassess the situation once you are calmer. This allows you to have a clearer view of the whole picture and be capable of making better decisions.
What can you do? Think about whether it is necessary for you to seek a second opinion (or more). Most doctors will also encourage their patients to get a second opinion if they feel those patients need more confidence before making any decision. Getting a second opinion means having another specialist (or a team of specialists) to assess your health, as well as to review your medical records and all test results. A second opinion can help confirm the initial diagnosis and treatment plan, let you know of other options (in addition to the current treatment plan), or propose a considerably different treatment method.
Do take into consideration the following matters when you seek a second opinion: • Will your insurance cover the costs of you getting a second opinion? • How long will it take to get a second opinion? If it takes more than a few weeks, you should talk to your doctor about this delay and whether it will affect your recovery. • Have you decided who you will see for your second opinion? If not, you can ask your doctor to help refer you to another doctor. Alternatively, check with another hospital or consult a cancer support group for suggestions. Do not worry; delaying treatment by several weeks while you do this will usually not affect your chances of recovery. However, you are encouraged to talk to your doctor if you have any concerns regarding delaying treatment. Even after you have undergone treatment, you can still always request a second opinion on your future treatment options.
Coping with diagnosis
6
coping with diagnosis
Tips on
H
aving negative feelings such as disbelief, shock, fear, sadness, anxiety, depression or anger is normal after you have been informed of your cancer diagnosis. It is totally fine for you to take some time to sort out your emotions and make sense of your diagnosis and treatment options. Here are some tips to help you prepare yourself for upcoming challenges:
Learn as much as you can about your cancer and its available treatment options. Learning about your cancer and your treatment options allows you to take control of your condition. Information about your cancer can be easily found in books and magazines or on the Internet. However, make sure that they are reputable sources. Talk to your doctor and take time to understand all the medical information shared by your doctor. Most importantly, don’t be afraid to ask questions whenever you are unsure of something.
1
Tell your family as soon as you feel up to it. Cancer not only affects the person who has it, but also the whole family. It is never easy to tell your family members, but they will need to know about it. Explain to them what kind of cancer you have and how it can be treated. They may feel overwhelmed, sad or uncomfortable in the beginning, and do not be discouraged as they might not know what to say to you because they are afraid of upsetting you. But do not worry, once you tell them of your feelings and needs, they will start to better understand your condition, give you support, help you make informed decisions, and provide help as they best possible can. Just tell them what kind of help you will need, be it physically or mentally.
2
Express your feelings and reach out for support. There may be times when you lose faith and feel like things are just too much. Do not try to hide or ignore these feelings, or act like everything is fine when it is not because this can take up a lot of your energy and make your emotional pain worse. Instead, express your feelings openly and you will feel more in control. Talk about your feelings and needs to your friends, family, or anyone whom you feel comfortable with. Allow them to help you. You will feel less alone. You can also join a cancer support group so that you can share fears, hopes and inspirations with those who are experiencing – or have experienced – the same thing as you are.
3
Do something that you enjoy. Continue doing activities that you like, such as drawing, painting, gardening, listening to your favourite music. This can help you attain some semblance of your life before cancer. You can also perform some mildly strenuous exercises such as yoga, walking, swimming or stretching, but seek for your doctor’s advice before starting any exercise program.
4
Anticipate possible changes. Ask your doctor about what changes you should expect. It can be physical changes from the side effects of the cancer treatment or changes in your daily routine. This allows you to make plans ahead. For instance, if the treatment can cause hair loss, you can plan to cut your hair short (because short hair makes your face looks fuller and your hair fall less noticeable). You can also consider wearing head coverings, such as wigs and scarves to help you feel more comfortable. Get useful tips from the members of cancer support groups on how they cope with these situations. Ask your doctor about the frequency of your medical appointments. If you are working and your treatment plan may interrupt your working schedule, talk to your employer about what you might need (eg, arrange for medical leaves, work on a flexible schedule, etc). Many people are able to keep working while they are receiving cancer treatment, but this decision should be made after taking into account your doctor’s advice.
5
Coping with diagnosis
7
Coping with diagnosis
8
Knowing your
treatment options
T
he major types of cancer treatment are: • Surgery. A procedure performed under anaesthesia to remove the tumour, some normal tissues from around the cancer, and sometimes, the lymph nodes nearest to the cancer. Surgery may cure cancer that is completely contained in one area and has not spread to other body parts. The earlier a cancer is found, the easier it is to remove it from your body.
• Radiation therapy. This treatment uses high doses of radiation to kill cancer cells and shrink tumours. Normal cells will also be affected, but they are better at repairing themselves than the cancer cells. Radiation therapy does not immediately kill the cancer cells; it will take days or weeks of treatment before the cancer cells start to die. After the therapy ends, cancer cells will continue to die over a span of several weeks or
months. Doctors may recommend this treatment if the disease has spread. • Chemotherapy. A treatment that uses drugs to kill cancer cells. Drugs will be administered directly into the venous circulation via a syringe or intravenous catheter. Chemotherapy can be used to cure cancer, reduce the chance of recurring, or stop or retard its growth. It can also be used after a surgery to kill any cancer cells that are left behind, or before a surgery to shrink the tumours. Chemotherapy is effective against cancer, but it can also damage healthy cells and cause side effects such as fatigue, hair loss, mouth sores, vomiting and nausea. However, these side effects often improve after the treatment ends. • Immunotherapy. A treatment that helps the immune system to fight cancer. Cancer cells can confuse the body’s immune system by making it not able to recognize them as abnormal so that they can grow without being attacked. With immunotherapy, the immune system can then be trained to recognize these abnormal cells. Immunotherapy can be done by stimulating immune system to work better against cancer cells, or supplying immune system with man-made immune system proteins. Some types of immunotherapy are also sometimes known as biologic therapy. Although this treatment option is not yet available in Malaysia, extensive research has
been ongoing in local research institutes. • Targeted therapy. It is a type of treatment that treats cancer by interfering with specific proteins that help tumours grow and spread throughout the body. For example, some cells have too much of a type of protein, which makes them grow too much. Targeted therapy can help to disrupt how these proteins work. Compared with chemotherapy, targeted treatment usually has fewer side effects because they do not affect the whole body. This treatment also only cause little damage to normal cells. • Stem cell transplants. This treatment option is most often used for cancers affecting the blood or immune system, such as leukaemia, lymphoma, or multiple myeloma. Stem cell transplants are also useful to help recover the body’s ability in producing stem cells after treatment with very high doses of radiation therapy and/or chemotherapy. Your doctor would recommend the best treatment for you based on the type and stage (extent) of your cancer, your age, overall health and personal needs. You should understand your options and know which choices are best for you. Remember, you play an extremely important role in ensuring a successful treatment outcome. So, do not be afraid to ask your doctor if you have any doubts or queries.
Coping with diagnosis
9
Coping with diagnosis
10
Managing your
K
finances
nowing that cancer treatment is often not cheap, it is important to understand the costs of your cancer care, regardless if you are someone who feels financially well off or a person who is worried you can’t afford treatment. Here are some tips that can help reduce the financial burden imposed by your treatment:
1
Evaluate your finances before you begin treatment. Get a better understanding of your finances by listing down your monthly income, current savings, monthly expenses (household expenses, phone bills, transportation etc), medical treatment costs (how much each hospital charges) and expected bills in the near future. Find out if you can cut back on certain expenses so that more funds can be allocated for your medical expenses. Understand what insurance you have. Contact your insurance agent to find out the treatment cost that will be covered by your insurance plan. If your employer does also provide an insurance plan for you, contact your human resources department to find out the specific person you can contact for more detailed information.
2
3
Seek advice from a financial advisor. Talk to a credit officer or financial advisor to evaluate your
assets versus your expenses. They will be able to offer appropriate advice on how to manage your finances.
4
Reassess your loan repayment plan. If you have problems paying your loans, let your creditors know and find out if there is any payment plan that can help reduce your monthly instalments.
5
Speak to your healthcare provider. If you need financial assistance, you can talk to your team of healthcare providers. Both government and private hospitals have assistance programs to help patients in need. Talk with your healthcare team to find out if you qualify for such programs.
The role as a caregiver
11
You are important, caregivers Are you a partner, family member or close friend to someone with cancer and is helping to care for them? Are you feeling unsure of what needs to be done and what needs not to be done when taking care of your loved one who has cancer? If yes, this section is for you – the caregiver – who has a great influence on how your loved one deals with their illness.
C
aregivers are a vital part of the cancer care team that consists of the patient, other family and friends, and of course, the healthcare providers. Therefore, you will have many roles that change accordingly during and after the cancer
treatment for your loved one. You will be involved in various responsibilities, such as helping them with day-today tasks (preparing meals, bathing, grooming and dressing), ensuring they take their medications, helping them manage their side effects, reporting whatever problems to healthcare
The role as a caregiver
12
providers, trying to keep other family members and friends informed of what is happening, and helping to decide whether a treatment is working. You are the one person who knows everything that is going on with your loved one.
Tips for optimal caregiving Here are some caregiving tips that may be useful for you: • Learn about their diagnosis. Understand the kind of cancer your loved one has, treatment options, treatment goals and possible side effects of the treatment. This can help you understand the disease process and be prepared for what lies ahead.
• Let them know you are there for them, but they can decide when they need help. Help them lead a life as normal as possible, but also encourage them to make personal choices and do self-care as much as they could. • Help them deal with any possible challenges. Address their concerns and reassure them on any new problems which may arise from treatment. • Encourage them to share their feelings. Listen to them attentively when they share with you their feelings about cancer journey. A simple gesture such as holding hands can also be a powerful tool
• Be ready for every doctor’s appointment. Keep a folder of your loved one’s health information (including a list of the medicines and appropriate doses) and bring this folder along to every visit. Write down questions you need to ask or things you want to tell the doctor. Take notes and don’t be afraid to ask if you do not understand certain things that are mentioned by the doctor. • Know your healthcare providers. Learn who the members of the cancer care team are and know how to contact them. • Offer encouragement. Your encouragement can help your loved one stay on the treatment plan and take other steps to get well, like eating healthy and getting adequate rest.
Take care of yourself, too! As a caregiver, you also need to learn ways to take care of yourself, only then you will have the strength to take proper care of your loved one. • Stay calm. If caregiving is something completely new to you, try not to worry. You can learn more as you journey through your loved one’s cancer treatment. • Express your feelings. Caregiving is definitely not an easy task. Some caregivers may experience severe sadness and emotional distress over their loved one’s illness, and feel overwhelmed or frustrated as they try to manage many difficult
problems. So, if you need to, try to share your feelings with friends, a counselor or a support group. By joining a support group, you can get to know people who have faced similar problems and who can offer you tried-and-tested advice. • Don’t take your loved one’s anger personally. As a result of stress, fear and worry, it is not uncommon for your loved one to direct their anger at you because you are the closest to them. Try to understand them and do not take it personally. • Focus on what is more important. Take a look at how busy you are now and think about what you can do. Don’t be afraid to ask for help and consider sharing some tasks with others, such as preparing meals, cleaning, laundry and childcare duties. This allows you to stay healthier and have more energy in taking care of your loved one. • Make time for yourself, even just a short one. To help you relax, do something you enjoy. You can watch TV, speak to a friend or work on a hobby. • Keep up with your own health needs. Eat healthy meals, exercise and get enough rest. Although caring for your loved one who has cancer can be very challenging, you will get the opportunity to learn about your inner strengths and abilities that you did not even know you had. Being a good caregiver can give you a deep sense of satisfaction, pride and accomplishment, which can translate into strength and endurance in continuing the role for as long as needed.
13
The role as a caregiver
to show your support towards them. If they choose to remain quiet, respect their decision to remain silent but let them know that you are always there to lend a listening ear.
Behind the victory
14
Love
Lights Up the Shadows
As difficult as it may seem, being cured of cancer is not something impossible. Yong Lee Lee, a breast cancer survivor, shares her inspirational story with us.
M
arried and being a mother to two beautiful daughters, Yong Lee Lee was the Finance Director of Malaysia, Singapore and Thailand of a multinational corporation – a rewarding position, but also a stressful one that consumed much of her time and energy. The work stress led her to a mild stroke in year 2003. “But the stroke made me realize that I needed a change in my life,” Lee Lee says. Hence, she decided to tender her resignation in 2005. As she was still entitled to receive her medical benefits in the meantime, she decided to go for a medical check-up, in which she was diagnosed with a 2 cm, “mainly cancerous” lump in her breast. “I was devastated and angry,” Lee Lee says. “I was going to give up my career for a healthier life, but now it seemed that I was too late.” She remained calm and silent as the doctor told her about the cancer. “But
once I was out of the clinic, I broke down and cried uncontrollably at the corridor.” Her husband, Remesh Kumar, who was first met when they became classmates in Form 6, held Lee Lee tight as she had her breakdown, assuring her that everything would be alright and they would get through this together. In his heart, he was terrified for Lee Lee, but he knew that he had to be strong for her. Lee Lee says that it took her about two months before she came to terms with her diagnosis. Initially, she was scheduled to undergo chemotherapy, but she and her husband decided to seek a second opinion. To her huge relief, they found and confirmed that only 1 cm of her lump was cancerous. Her cancer was restaged to Stage I and thankfully, she did not have to undergo chemotherapy. Instead, she had her lump surgically removed and underwent 25 cycles of radiotherapy. “That shows that a second opinion is important before deciding on any treatment,” she emphasizes.
Behind the victory
15
Lee Lee fondly describes how supportive Remesh was during that trying period. Her cancer did not change his love towards her. He would help with the house chores, take care of their daughters and tirelessly support her while keeping an optimistic cheer to lift everyone’s spirits. He was her rock when she needed someone to lean on; her silence when she needed peace; her laughter when she needed to pick herself up. “Support is very important for any cancer patient,” she says. “My daughters were only 8 and 12 when I was diagnosed. My husband and I did not tell them at first, believing that they were too young to understand what I was going through. But I’m very fortunate to have Remesh by my side. He makes all the difference.” “My first two years after treatment were miserable. I spent too much of my time worrying about the possibility of a recurrence of the cancer and the uncertainties of the future. I felt that I was slipping into depression,” she says. Fortunately, she found a new avenue where she could channel her time and energy into after she met Datuk Dr M. Devanand, a Consultant Breast Surgeon. He invited her to
participate in fundraising projects that promote breast cancer awareness. Today, Lee Lee’s cancer has been in remission for 10 years and counting. She has her own business, one that allows her to achieve a better worklife balance. She is also actively involved in the Pink Ribbon Wellness (L) Foundation, which was co-founded by Datuk Dr M. Devanand and Lee Lee herself, together with Puan Sri Maniseh Adam as its Patron, to organize public lectures and breast cancer survivor workshops in urban and rural areas, as well as national conferences and charity runs/walks. Her husband and two daughters are also enthusiastic supporters of the events organized by the foundation. Lee Lee is grateful that, during her cancer treatment journey, she had the love and support of her family, Datuk Dr M. Devanand and peers to help her stay strong and positive. And now, even as the shadow of cancer fades into the background, her family continues to rally around her as she pays it forward, reaching out to breast cancer survivors who may be less fortunate than her.
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Behind the victory
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The basics of cancer
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References: 1. American Cancer Society. Available at www.cancer.org. 2. National Comprehensive Cancer Network. Available at www.nccn.org. 3. Mayo Clinic. Cancer. Available at www.mayoclinic.org/diseases-conditions/cancer/in-depth/ cancer-diagnosis/art-20044544. 4. Cancer Research UK. Available at www.cancerresearchuk.org. 5. National Cancer Institute. Available at www.cancer.gov.
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