Living with cancer
Having cancer is a life changing experience for most patients and their families. Coming to terms with the diagnosis, going through the treatment process, managing side effects of treatment and planning life after the end of treatment can all be challenging. Understanding what to expect form this ordeal and finding and learning ways to deal with it will go a long way in managing this difficult period.
Knowing The Diagnosis
Getting to know that you have Cancer
A diagnosis of cancer can be a life changing event. A person can go through a lot of emotions and feelings after such a diagnosis is told to them. Everyone reacts differently to these situations but there are some common strands which most people experience. It is important to know that these feelings and emotions are all quite normal and are a natural reaction to a stressful period in their life.
Knowing for the first time that you have cancer can be a difficult situation to deal with. Coming to know of this fact may be in a doctor’s clinic room, on the ward in the hospital or somewhere outside where the information is given by a friend or relative. The first reaction that can be expected in such a situation is a sense of shock and disbelief. A feeling of numbness or a lack of reaction to what has just been said is a very common reaction seen in people. It may take some time before the news sinks in and you understand what has been said. The doctor who gives the information about the diagnosis of cancer often continues to talk about the effects of the cancer and possible treatments but your mind is still trying to react to what has been initially said and in that process you do not pay much attention or are unable to grasp anything that is being said by the doctor. Common questions that come into the mind when such news is given are “How long am I likely to live”, “Is there any treatment for this condition”, “should other people know about it or not”, “am I going to die” etc. It is not uncommon in the Indian setting that the patient is not informed about the diagnosis of cancer and this is explained to the relative or friend that accompanies the patient. This can also be quite nerve wracking for the patient as everyone is talking about them, but they do not know or have not been told about what is happening with them.
After knowing about the diagnosis of a cancer, some people can go into a state of denial where they may partially or totally ignore or avoid the fact about what has been recently said to them. This feeling can be present in patients or their relatives or friends. In most patients, the period of being in denial does not last long and they will understand and accept what is happening with them. Some of them have a continued phase of denial because of which treatment cannot be given to them. Family and friends going into denial about the condition makes it difficult to communicate with them about the situation, to be able to express your feelings and emotions to them and for them to be able to support you as you go through the process of treatment.
Anger is commonly felt in patients once a diagnosis of cancer is made. This usually happens after the period of denial but can happen at any time. The anger can be against members of the family, friends, members of the medical profession, employers or anybody else. Anger is commonly linked to the feeling of “Why Me”, asking the question as to why I should get this condition and not others. Apart from the anger because of the diagnosis of cancer, anger can also happen if the patient perceives that there has been a delay in the diagnosis or some other reason for them to be in this situation. Again, as explained before, these are normal reactions patients experience when going through such situations.
Fear, worry and anxiety are common feelings associated with cancer particularly when the diagnosis is made. It is quite natural to have these fears and worries in a difficult situation like that. Coping with these feelings varies from person to person, but discussing these feelings with friends and family, the treating doctor can go a long way in helping to cope with the situation. Getting to know the full facts of the condition, proposed treatments and possible outcomes can allay some of these fears as being in the dark about what is likely to happen can exacerbate these fears and anxieties in some patients. On the other hand, there may be other patients who cope better with the situation if they know very little about the potential outcome of the treatment.
It takes a little while for the patient to understand what is happening with them and accept the fact. Some patients can feel a sense of guilt about the reasons why the cancer has occurred, or the responsibility and burden being placed on near and dear to support them. This is again a normal feeling that anybody can experience.
Hope is a common feeling that patients have following acceptance of the situation. Understanding the fact that cancer is an illness like any other and in the modern day, treatments are available for all cancers and newer treatments are coming up all the time with a good possibility of control and cure of the condition.
A career is someone who cares for a person with any illness without expecting any financial gain out of it. Caring can be for anybody including for a spouse, sibling, relative, friend, child or a neighbour. Caring for a cancer patient can be different to caring for people with other illnesses.
Caring for a cancer patient can be a rewarding and satisfying experience and can give a sense of accomplishment after it is done. At the same time, it can be a tiring and a trying experience too.
A carer has many roles that they can offer to the patient and these are listed below.
In situations where the patient is unable to communicate well due to various reasons, the main carer acts as an advocate for the patient, making decisions and advising the patient keeping the patient’s best and expressed interests in mind. The carer can communicate with healthcare professionals in deciding on aspects of treatment and care of the patient. Carer can also communicate with other family and friends about the patient’s condition as needed.
The carer should be able to communicate well with the patient and understand exactly what the expectations of the patient are regarding his/her care. This is achieved in having honest and frank discussions with the patient about the condition, treatments and outcomes of the treatments.
Listening to the patient and acting accordingly is probably one of the most important jobs of the carer. The patient will be going through lot of physical and psychological effects of cancer and its treatment. Trying too hard to push them to eat more or exercise, or on the other hand to limit them from doing things when they are perfectly capable of doing or antagonising them in any other way will have a negative impact on the wellbeing of the patient.
There can be a number of physical needs for the patient that the carer may need to provide including giving medicines, keeping a record of symptoms experienced by the patient, giving the right as required medicines depending on circumstances, taking patients for hospital visits, making meals, looking after the patient’s personal hygiene needs in case the patient has limited mobility, lifting, moving the patient etc.
A cancer patient needs emotional support during their course of treatment and a carer usually provides that or finds other people to help in providing that support.
Cancer and its treatment can be financially burdensome to the patient and again the carer is there to assess the good and bad of all treatments taking into account the financial condition of the patient and the patient’s wishes. Also, in patients who are terminally ill, sorting out the patient’s finances, forming a living will for the patient are all things to take into consideration.
In the Indian setting, there will be multiple carers looking after the patient at the same or different times. It is always good for all the carers to appoint one person who takes overall charge for the patient’s care. This will enable efficient communication with the healthcare team and the doctors will also know is the person bet to communicate with apart from the patient.
Finally, a carer needs to look after themselves at the same time as looking after the patient. Caring for a sick patient can be very difficult especially when support form others is hard to find. It is very important that the carer finds time to relax and take time off caring and do some normal living. Having adequate rest and sleep, delegating some of the caring to others will help ensure that you could continue to care for your loved ones.
Treatment for cancer can affect the capability of having children in the future whether that is a male or a female patient. Treatments for cancer can be surgery, chemotherapy, radiotherapy, hormone therapy, biological therapy or immunotherapy. If a patient wishes to have children after completion of treatment, it is best to discuss that with the oncologist before start of treatment, so that it is considered when such treatment is being formulated.
Fertility is affected in the treatment of cancer in many ways and the common ones are detailed below followed by potential ways to circumvent the problem.
Generally, it is recommended that a male or female patient who has had treatment for cancer should not try to have children for at least one year after completion of treatment. Cancer treatments such as chemotherapy can damage the sperm and eggs and have a risk of causing birth defects. A gap of one year after treatment minimises that risk.
The function of the ovary to produce eggs is affected as a result of chemotherapy. The patient may notice that her periods have stopped after starting chemotherapy. After completion of chemotherapy, the ovary function and in turn the periods return to varying extents depending on the age of the patient and the function of the ovaries prior to start of treatment. In younger patients, those aged 30 or under, there is a high chance of recovery and for those over the age of 45, the chance may be lower. In a similar way, chemotherapy can affect the fertility of a male patient to produce sperm also. The sperm count (number of sperm in the semen) can be reduced or stop completely during and after chemotherapy. Recovery happens and this depends on the age of the patient and the sperm count that is present prior to start of treatment.
Use of radiotherapy to the area of the pelvis can affect the function of the ovary in a female or the testes in a male and lead to infertility. If treatment in that area is required, the doctor will look and try to avoid the testes or ovary to be irradiated if possible. If not possible, they will discuss the potential consequences of such treatment. Radiotherapy to other parts of the pelvis can also cause reduced fertility. Male patients having radiotherapy to the pelvis may develop impotence or dysfunction of other sexual organs present in the pelvis leading to reduced fertility.
Methods to improve fertility after cancer treatment
Certain cancers, particularly those affecting the lower part of the abdomen(pelvis) such as cervix, uterus or ovary, surgery to affect a complete cure. Removing the uterus or ovaries will stop the chance of a woman becoming pregnant in the future. If a patient wishes to have children in the future, operations can be tailored in such a way, mainly for very early stage cancers, where one ovary can be left behind, or the uterus is not removed for early cervical cancers etc.
Sperm banking is a process where the sperm of a male patient is stored prior to start of chemotherapy. Sperm is part of the semen which is produced on ejaculation. The semen from the patient is stored in a sperm bank for a fee and used at a time when the patient wishes to have children in the future. In young male patients having chemotherapy, the sperm count and quality can be affected temporarily or permanently depending on the age and fertility of the patient prior to the patient. So, the sperm is ejaculated prior to start of treatment and stored (cryopreserved) by freezing it.
Following completion of cancer treatment, if the patient’s sperm count is back to normal and of good function, he could try for a baby normally. If not, the stored sperm can be used. The stored sperm is thawed and used by inserting it into the wife or partner’s womb or used in in vitro fertilisation (IVF) to fertilise the egg produced from the woman.
Prior to start of cancer treatment, a woman can have an egg removed and fertilised with the sperm of the partner through in vitro fertilisation (IVF). The fertilised egg can be stored by freezing it. Once the treatment is complete and the woman wishes to have children, this fertilised egg can be implanted into the womb. The eggs can be removed from the woman by using hormones.
Freezing of an Egg
In female patients who aren’t married or do not have a partner and wish to preserve fertility prior to cancer treatment, the egg can be removed and frozen just like a sperm. This can be used later for IVF treatment. This is a relatively untried technique and not known to be very successful.
This is a technique where the sperm is collected from the male or from the sperm bank and inserted into the female’s uterus to allow it to fertilize the egg. The insemination is done at the time of ovulation for it to be successful.
Invitro Fertilization (IVF)
This is a type of treatment that helps couples to have a baby when the natural method of having children is unsuccessful. IVF can be used as a technique in cancer patients whose fertility has been reduced due to treatment. IVF is a multistage process as is discussed here briefly.
Collection of sperm- The sperm is collected from the male directly or from the cryopreserved specimen if stored in a sperm bank.
Ovary stimulation and Retrieval of Egg- Here the egg from the female is retrieved by an infertility specialist after injection of hormones to the female partner. The hormones enable the eggs in the ovary to mature. After that, the doctor inserts a needle into the ovary and removes the mature eggs. This procedure is done under anaesthesia.
Fertilization- Following retrieval of the sperm and egg, the two are fertilized in the laboratory to create an embryo.
Implantation- The embryo is implanted into the uterus of the female to initiate a pregnancy.
One or more attempts may be needed for success of this process. If many embryos are made with this process, one or two of them can be implanted into the uterus while the others can be frozen to be used in the future if needed.
Testicular sperm Extraction (TSE)
This is a process used in males who have not used sperm banking prior to treatment and have reduced or low sperm count and wish to have children. Here the method involves a minor operation under anaesthesia, where a small part of the testes is removed with surgery to look for sperm. If sperm are found, these are then used to fertilize the egg in the processes described above.
Diagnostic and treatment options for cancer in the present day are quite advanced, so that many patients can be cured of their disease particularly if detected in the early stages. In those patients where cancer is detected in the later stages, treatment advances made over the last decade or so have enabled patients to have survival measured in years for many cancers. So, it is important to talk and learn about life after the completion of cancer treatments and some important points are listed below.
Recovery from side effects
Side effects of cancer treatments can be classified into immediate and late side effects. Immediate effects are those occurring during and up to 3 months after treatment and late effects are those that happen months to years after treatment. These side effects depend on the cancer that is being treated and the type of treatment that has been used. Most of the immediate effects settle down by about 3 months after treatment, usually by 6 weeks. Some of them can persist and continue in the long term. Knowing what effects to expect from the treatment that is being given will enable the patient to manage them better as they will be prepared for them. Continuing support from the healthcare team after completion of treatment will help manage the side effects better.
After completion of treatment, periodic visits to the Oncologist is a very important part of the treatment process. This is something that a lot of patients do not comply with. The follow up process can be quite frequent soon after completion of treatment with the interval between follow up appointments increasing as time progresses. The appointments enable the patient to report any persisting side effects, so that they can be treated well. A more important benefit of follow up is to examine the patient and do scans, blood or other tests periodically to look for any recurrence of cancer. Any recurrence that is spotted early, can be treated effectively. The follow up process is for 5 years for most cancers and up to 10 years for some cancers.
Diet and Nutrition
A normal healthy diet is to be followed by all patients after treatment from their cancer. A balanced diet with right amount of fruit and vegetables are advised along with other staples. In some situations, the patients may not be able to swallow well or eat large meals at once. Taking small meals number of times a day is best in such situations. Addition of nutritional supplements to the meals may be needed only if the patient is not able to manage a normal diet.
For families who wish to conceive after treatment for cancer, especially if they have had chemotherapy, it is advised that they should not try to conceive for at least 1 year after treatment. If sperm banking in a male patient, egg in a female patient or embryo preservation was used, then the 12month rule may not be adhered to. It is best to discuss with the treating Oncologist before trying to conceive.
Going back to work
Following completion of treatment, patients can go back to work whenever they feel up to it. There is no specific recommendation as to when work can be commenced. If the work is intense or stressful, it is always better to do a phased return rather than going full time from day one. Discussing the situation with the employer is good and they will help facilitate the return to work.
A gradual exercise programme, whatever that may be is advised. Regular exercise has been shown to reduce the incidence of cancer. Exercise can be in any form ranging from a small walk to going to the gym.
Getting back into a routine
After completion of treatment and recovery from the side effects, it is good to try and start to get back to a routine that was followed prior to the diagnosis of cancer. It is common and quite normal for the patient to keep thinking about the treatment and what they have just gone through and some patients may find it difficult to come out of that situation. Getting back to the previous routine will help leave that process all behind and to get on with life as usual. Support from doctors, friends, colleagues and family is crucial in this regard too.
How to know if cancer is coming back?
There are no specific symptoms to indicate that the cancer is coming back or recurring. These symptoms depend on the area in the body that the cancer is recurring. Even then, the symptoms are very similar to common symptoms that everyone gets. One should become suspicious if these common symptoms persist for longer than they usually do or if the patient is beginning to feel unwell again, not eating much or is losing weight etc. As it is difficult to identify that the cancer is coming back at an early phase, it is important to stick to the follow up schedule and have the necessary blood tests, scans or other teststhat may be needed depending on the type of cancer.
Am I cured now?
This is a common question asked by patients after completion of their treatment for cancer. The term “cure” means that the cancer is gone and will never come back. Unfortunately, doctors will not be able to tell that the patient has been cured from their cancer soon after the treatment has been completed. This is because there is a risk of the cancer coming back over the next few years. The higher the stage, the higher the risk of that. Doctors can only tell that a patient may have been cured if the cancer has not come back after 5 years of follow up. Doctors may be able to predict the chances of cure after their treatment is complete. This is based on the type and stage of cancer, the treatment given etc. The doctor will give a reasonable estimate about the chances of a cure at this time. Some patients may wish to want to know such information, while others may not want to know.
By Dr Neelima Jampana, MBBS, MRCPsych, Consultant Psychiatrist, Peterborough, UK
Depression is a leading cause of disability worldwide. Mild to major depression is common in cancer patients. Up to 24% of all cancer patients can have depression, more so while they are on treatment. Patients who have end stage cancer and those on palliative care are also known to have depression. Having depression has been shown to impact the course of cancer and compliance to treatment. It may also interfere with a patient’s ability to cope with the burden of illness. Early diagnosis and treatment of depression will improve cancer prognosis and quality of life.
Depression is more than feeling unhappy or fed up for a few days. The diagnosis of depression is given when one feels low in mood, has poor energy levels and loss of interests for at least 2 weeks. The narrow line between unhappiness and depression is that the latter causes disruption of day to day living. Sleep, appetite, and concentration levels could also be affected. Anxiety, tearfulness, low self-esteem, guilt feelings, pessimistic thoughts, hopelessness, and thoughts of suicide are found in moderate to severe depression.
There can be several contributing factors that can lead to depression in cancer patients. Reaction to a diagnosis of cancer, adjusting to life-style changes, treatment side effects and uncertainty of the future are the common factors. People with anxious and dependent types of personalities, who have previous or family history of depression, those with poor socio-economic status and a lack of social support are vulnerable to depression.
Depression can be left undiagnosed in cancer patients. Symptoms of depression can be missed due to the overlap of physical health symptoms caused by cancer and its treatment. Lethargy, agitation, loss of appetite, pain, nausea, and breathlessness can be secondary to both depression and cancer. Suspecting its presence by the patient, family, and the doctor, followed by a detailed assessment will help make a diagnosis.
Depression is a very treatable condition and antidepressants are the commonly prescribed drugs to people with depression. Newer antidepressants are better tolerated compared to the older ones. There has been a long-standing stigma associated with antidepressants, that patients could become drugged up and dependent on them. This is a myth. They do not cause psychological dependence [craving] and most newer drugs do not cause over sedation. The use of antidepressants in cancer patients is considered depending on the severity of depression, physical health issues and frailty.
Majority of patients taking antidepressants benefit from them. They could take 2 to 8 weeks to show some response, hence a trial of at least 2 months is advised before assessing their effectiveness. Side effects of antidepressants vary with the type and dose of medication. Some side effects can wear off after a week. If not, an alternative antidepressant can be considered. The dose of antidepressant is usually started low and gradually built up depending on the tolerability of the patient. Stopping them suddenly can cause withdrawal symptoms like irritability and anxiety. Hence, they should be tapered slowly under doctor’s advice.
There are several types of psychotherapies or talking therapies which could help with symptoms of depression. Commonly used therapy in cancer patients with depression is cognitive behavioral therapy [CBT]. In CBT, the therapist helps the patient to identify the association between the behavior, thoughts, and feelings. They will recommend structured strategies to help break the cycle. Patients will learn to recognize negative thoughts and feelings and will be able to control them under the therapist’s guidance through homework and mental exercises.
ECT, Electro convulsive therapy is a form of treatment for severe/major depression. It is considered for depression when antidepressants are ineffective. In severe depression patients may stop eating, sleeping, or talking to other people. They might imagine things which are not actually happening in real life, which leads to suspiciousness, suicidal thoughts, and aggressive behavior. In these situations, ECT works quicker than antidepressants. Cancer patients can be assessed to see if they are fit for ECT.
ECT is given in hospital as a day procedure and usually patients recover and will return home within 8 hours after the session. During the procedure patients are given a muscle relaxant and an anesthetic agent which puts them to sleep for approximately 10 minutes. Electrodes are placed on patient’s head to deliver short, controlled set of electric impulses for a few seconds. They must produce a seizure which will in turn help increase certain chemicals in the brain causing an improvement in mood. Patients will not feel the seizures or any associated pain during the treatment. The side effects of ECT are short term confusion and headaches.
Other therapies that could be helpful to improve the quality of life of cancer patients are carer education and support, anxiety management, and mindfulness. Carer support and respite is vital. The impact of cancer diagnosis on spouse and close family members is huge. Carers need to be given opportunity and space to vent out their stress and feelings. One must remember that the carer should continue to have some normality in their life and that they might need some time away from the role of care. This can be facilitated with additional support from care agencies, extended family support and/or a short break. Respite helps the carer to improve their mental and physical strength, which is essential to support their loved one with cancer.
Diagnosis of cancer and its repercussions can become a highly sensitive subject for discussion amongst the family members. It can lead to emotional outbursts and arguments damaging interpersonal relationships. The discussions about prognosis, treatment plans and future planning can be directed and supported by a counsellor if needed.
Stigma associated around mental health issues has gone down over the last decade. More and more people are aware of depression and are coming forward to access treatment. Diagnosing and treating depression in cancer patients is important. There are wide range of services provided by psychiatrists, psychologists, and holistic therapists to help patients with depression. Online self-help and charity services are also playing a substantial part in providing support to patients with mental health problems.