At first glance, the question seems odd, but once we delve into its nuances we can understand why people sometimes act the way they do. Naturally, if a person has any kind of health complaint, sooner or later he’s going to visit a doctor. But is this also true of cancer patients? As it turns out, their reactions are quite different. Cancer patients regularly visit doctors with completely different expectations and lots of emotional baggage. These feelings don’t even come close to the emotions one feels when they’re waiting for an initial diagnosis, when they finish therapy, when they learn of a relapse or when they’re waiting for the latest test results. This is why a patient’s desire to visit a doctor can vary in many ways.
The availability of care in general and for the individual patient
If a doctor is easy to reach and a patient doesn’t have to wait in a long queue, then everything should theoretically be fine. Unfortunately, in Latvia there’s a tendency for oncologists to use the time-honoured phrase “further observation by your family doctor” for some patients, while other patients are even told not to see their family doctor, because these medical professionals supposedly don’t understand the nuances of oncology. God only knows which scenario is better. A family doctor probably knows the patient better and is more accessible, while oncological care, which is carried out by a number of specialists, is more complicated – one doctor operates, another administers radiation, while it’s entirely possible that more than one doctor prescribes drug therapy. Which doctor should I visit? Who is my primary physician? In reality, today’s modern, multidisciplinary medicine doesn’t have one primary doctor for cancer patients. One is responsible for surgery, another for the nuances of radiation and yet another for drug therapy, but most of these specialists are reluctant to take responsibility for understanding the entire patient and all of the problems he might be facing due to his illness. A panel of medical experts (a meeting by various specialists such as surgeons, radiologists and chemotherapists) decides on a therapy plan before a crucial event – an operation, radiation, drug therapy, a change to palliative or symptomatic care. However, a patient rarely has someone to turn to for the everyday problems associated with their illness or their treatment.
It’s true that we can say that everyone has access to a family doctor in our nation and that cancer patients (who are registered as such) have access to oncologists. But this is where we come across a larger problem – access on an individual level. The kind of access where a patient can expect someone to listen to their concerns, address their fears and offer advice. This isn’t a question of how much time (15 – 20 minutes) is given for a consultation. It’s the content of the discussion that’s important. Getting an appointment with an oncologist in Latvia isn’t as easy as it sounds. First of all, it should be noted that since 2009 the oncologist specialty was replaced with a new specialty, the oncologist chemotherapist, which considerably narrows the spectrum of aid they can provide in a consultation. This is evident in the recent trend of suggesting that hopelessly ill patients be given, by some incomprehensible method of selection, not symptomatic or support therapy to increase their comfort, but the most expensive innovative therapies, which aren’t compensated by the state. Some of these patients are even encouraged to seek help from local charities such as Ziedot.lv, because drug doctors only prescribe drugs. Thank God that not all of them do. Secondly, even family doctors often become confused, because they haven’t received clear instructions from the specialist on how they should proceed within the limits of their expertise.
Therapy’s effectiveness or failure in the eyes of the public
Popular oral folklore not only has deep roots, but also a complex information network. For instance, try this and if it doesn’t help then you can always see the doctor later. Or maybe: I’ll wait a while, maybe it will go away on its own. Or maybe even: my friend went to the doctor as soon as she sensed something was wrong and look where she is now – the cemetery. The stigma of cancer in society has an enormous influence on how a patient will act and whether the experiences of family members, loved ones and friends will motivate or hamper their decisions. If a health problem arises, will they attend a free cancer screening, respond to an ad campaign for examinations or immediately make an appointment with their doctor? If the Latvian media is constantly frightening the public with the notion that we don’t have modern, expensive drugs, then what could possibly motivate current or potential cancer patients to act, since we supposedly don’t have the resources to help them? What can we do when local celebrities publicly state that they’ll seek help abroad if they’re diagnosed with cancer, because here in Latvia the best life-saving drugs haven’t been procured by the state, a state which also doesn’t care for its patients? But over there, just across the border you can get everything! How naïve! Unfortunately, cancer can’t be cured, even with exorbitant sums of money. There’s evidence of this across the globe. Just look at the funerals of wealthy, powerful people where the cause of death is often cancer. But the pharmaceutical industry wants to make their money at any cost, even though sympathetic care costs much less.
How does the patient perceive his specific ailment?
This significant moment can also serve as motivation to visit a doctor, or just the opposite – to avoid him. Of the many cases of cancer that I have diagnosed in its later stages, most of the patients were highly intelligent and educated people, even medical professionals. What’s going on here? Why did they wait so long? Among the most common explanations I’ve heard is that the cancer has confused their thought processes and they’ve lost the ability to think rationally, as if they were brainwashed.
Recently I’ve also come across wealthy people from countries that have no problem providing proper medical care or the latest innovative drugs. We’re presented with a strange picture here. We can conditionally divide these patients with advanced illnesses into two groups. The first are the desperate, who have already received evidence-based therapy in keeping with accepted guidelines, yet the cancer continues to spread. They are disappointed, confused and have lost faith in modern medicine and are now ready to try anything with the exception of modern chemicals and drugs designed by the pharmaceutical industry. The other group is comprised of alternative thinkers, who have refused conventional therapies from the very beginning and have followed a course of alternative and complementary methods known only to them. Some have agreed to an operation, but not to other methods. Others have even declined surgery. Among these patients were, of course, cases where the disease progressed quite quickly, yet they still held firm to their belief that they’re doing the right thing. I was most surprised by some patients who for years had tried nearly everything alternative, yet were still alive enjoying a good quality of life. Yes, they still have the disease, but statistics from a number of countries have revealed that there is a small fraction of patients diagnosed as stage IV who don’t necessarily die within the first five years. How is this possible? How do these people differ from others who weren’t even able to survive five years with a stage I tumour? This is oncology’s greatest riddle. That would be like pouring out a thousand-piece puzzle on the floor and finding one specific seashell among the millions in the pictured seashore. Unfortunately, we haven’t yet discovered an instrument that would allow us to detect these patients. This is why I still attempt to convince my patients of the efficacy of conventional medicine, at least until the point when I determine that the risks of therapy are greater than the potential rewards. I try to figure out why they have such an aversion to conventional methods and I have to say that they’re reasons are often more than adequate. For example, a woman with breast cancer was deathly afraid of the treatment and was about to refuse chemotherapy (which was definitely necessary), because her sister died of ovarian cancer many years ago while being treated with chemotherapy. Quite a rational explanation, right? Or a relatively young person with intestinal cancer was afraid to have an operation, because he’s not sure how he’ll be able to have a bowel movement and he certainly doesn’t want a colostomy bag. In these situations a long and difficult discussion is necessary with the patient and his loved ones, because they can often play a large role in the patient’s decisions, for good or ill.
In my experience, if a patient doesn’t believe in or is against a specific therapy, then unfortunately it also won’t work. The patient, even if he has been persuaded to do it, will often complain about poor treatment tolerance and may even arbitrarily stop using the prescribed drugs or ignore other instructions from their doctor. For example, when asked whether a patient is currently using tamoxifen (a breast cancer drug), I’ve received all kinds of strange responses such as “what are you on about doctor, the directions described the most horrible side effects” or “I tried them for a little while and felt better, so I stopped, because I don’t want to keep poisoning my body.” Oftentimes doctors don’t even find out about these sidesteps if they don’t ask their patients direct questions. Patient compliance, or the degree to which a patient adheres to his doctor’s advice and instructions, will have been compromised and these will definitely not be success stories for conventional therapy. In all of these situations the keyword is communication with a patient – encouragement, persuasion, education – and this can only occur through dialogue.
How is a specific ailment perceived by other people?
No man is an island. Even people who live alone. The state of one’s health is a frequent topic at parties, among friends, with neighbours and even sometimes with complete strangers. And all of these people have an opinion. However, cancer isn’t a disease that most patients want to discuss. It’s not a common cold, an appendicitis or a difficult menstrual cycle. People whisper about cancer! Cancer is discussed secretly with occasional conspiratorial glances cast in the victim’s direction. In recent years, people have become more open, often revealing their stories, sometimes as part of a charity campaign to raise money for treatment. Many people are reluctant do this, fearing that they will only encourage the spread of their illness by acknowledging it. But if you’re promised medication that can treat your illness (it’s possible that the patient has been told that the drugs will treat the illness, but he wants to believe that it will cure him), who wouldn’t be ready to bare their soul to receive the supposed miracle cure? I’m extremely happy that a number of women’s magazines have now broached this subject with powerful stories, as well as practical advice on what to do and where to go.
I like it when a patient arrives for an appointment with a loved one. Two sets of ears and two heads are definitely better than one and there’s also a better chance that something important won’t be forgotten. Younger friends or relatives are usually well-prepared for the appointment, having read about recent accomplishments in oncology and the possibility of gaining treatment elsewhere. Like I always say: loved ones are a patient’s eyes, ears, mind and conscience. There’s nothing more important to a patient than a loving and supporting friend or family member, because they’re often the ones who pressure the patient to choose the right therapy, to change their habits, to eat properly, to get some exercise and to generally look after oneself. However, there are unfortunately times when loved ones can have a destructive influence by encouraging patients to use non-conventional remedies or to visit charlatans, fully believing that they’re only looking after the patient’s best interests.