You and Your Oncologist

This section is an excerpt from the Star Throwers Guide to Cancer Book.

What Is An Oncologist?

Simply put an oncologist is a doctor who specialises in the treatment of cancer. This is actually a very broad definition because there are in fact many different types of doctors who treat cancer, with different specialisms in terms of the cancers they treat and the methods that they use. Generally when people talk of oncologists they are thinking of medical oncologists, who are the doctors who treat cancers using chemotherapy, hormonal treatments and other drugs. However, there are also surgical oncologists, who very obviously treat cancer using surgery, and radiation oncologists who use radiotherapy and different forms of ablation treatments (see the chapter on Ablative Therapies for more details on these). Most cancer treatments actually involve many different forms of treatment, for example chemotherapy and radiotherapy in combination, and it is usually the medical oncologist who is the main consultant in charge of your case. In this document the term oncologist is in line with common usage and means the medical oncologist unless stated otherwise.

Oncologists come in all shapes and sizes and have very different personalities, just like the rest of us, but overall they are pessimists based on the reality that despite their best efforts, successful treatment is not a common enough outcome, although it does occur. While the cancer experience is new and terrifying to you, they will have seen people in your situation many times in the past. Inevitably this past experience will colour their outlook, just as it would for us if the roles were reversed.

It’s highly unlikely that you have had much say in the choice of oncologist. For most of us, patients, parents or carers, we will have had no chance to think about who we’d like to choose, things are too frantic and scary for much deliberation. If you have yet to meet your oncologist it is perhaps worth taking a moment before your first meeting to think about what you would ideally want from an oncologist, who is after all normally the consultant in charge of your treatment.

Many questions may come to mind. For example you may want to know how many years of experience they have in oncology. Or you may want to know how long they’ve been in their present position. Most oncologists specialise in two or three types of cancer. It is important to know how much interest they have in your specific type. For example, are they involved in research in your form of cancer? If so they may be more knowledgeable and be more aware of trials that you could enter if the need arises later. This is particularly important if you have one of the rarer cancers, in such situations it is important to ask how often they have treated people with your form of the disease.

Believe it or not it will be ok to ask these questions when you first meet your oncologist. Why? Because you need to build a relationship with this doctor that may last for many months or even years. You will have to place enormous amounts of trust in what they do, so asking some awkward questions is important from two perspectives. First because you want to know the answers, but possibly more importantly you will want to see how they react to the questions. If you get an affronted response and your questions are treated as insulting or impertinent then that doesn’t bode well for creating a solid relationship built on trust. On the other hand if the questions are answered honestly and without much fuss then that’s a much more positive start.

And the content of those answers matters too, of course. However, it’s not always possible to work out what a good answer is. Partly this is down to how well you ask the questions. For example, asking a question about how often they treat cancer is not as good as asking the question about how often they treat your type of cancer, and even that’s not as good as asking how often they’ve treated the specific sub-type of cancer that you’ve been diagnosed with.

Even more difficult to interpret is the question on research. On the face of it having an oncologist who has a great research record and is much in demand for conferences and lectures would seem a great idea. What can be better than being treated by a world class expert? The down-sides can be that your oncologist is so busy in the lab, in the conference hall or lecture theatre that they are not readily available to you, and may often have to skip clinic or delegate to more junior colleagues.

The important thing though is that you work on establishing a degree of trust early in the process. This is important because there may come a time when there is a need for some difficult discussions and you need to be able to have a frank conversation without feeling that you are stepping out of line. We should not underestimate how difficult it is to do this. On the whole we are still brought up to treat doctors with deference and a respect that we give to few other professions. For a patient it can be enormously difficult to argue or disagree with their doctor, even when it is the case that the doctor would not be insulted or defensive in response. It makes sense, then, to work at establishing an open and honest relationship at the very beginning. And, although this may seem radical to some, it may be the case that if that relationship does not emerge quickly it would be better to seek a different oncologist earlier rather than later.

Finally, get your oncologist’s email address. Ask for it outright, or else go on the hospital website and get it there if it is available. There will be times when you want to ask a quick question, or want to discuss something you’ve read (for example about a new drug or treatment) at the next appointment. Being able to communicate outside of appointments, or to share articles in advance of a meeting, is important. If you just turn up at an appointment with an article for your doctor, then the chances are that it won’t be read and discussed. Time is limited, and your doctor will be unable to read and respond given the time available. Send the article before the appointment and you have more chance of getting it discussed. Some doctors will be more than happy to communicate via email, while some will be a bit shocked. At worst your emails will be ignored, but at best you can engage in a dialog that enables you to access support outside of a clinic or a hospital ward.

Your First Oncology Appointment

This section is for those patients who have only just been referred to an oncologist and have yet to meet him or her. Generally, it is a physician or surgeon who, following a series of investigations, informs you that you have cancer. If it is a surgeon you may be offered surgery to remove the tumour if it is operable, but even in these cases you will normally also be referred to an oncologist to manage the additional treatments, usually chemotherapy, that are often included as part of a treatment protocol. Doctors are not generally good at breaking bad news and many will prefer to leave it to the oncologist to discuss your particular prognosis.

On your first meeting with your oncologist you’ll normally find him or her accompanied by an oncology nurse and possibly one or more other doctors. At this moment you are probably having palpitations, having absolutely no idea what to expect. You have been told that you have cancer but have no real understanding of what this means. In your head, cancer means death and you feel totally panicked as you are not ready to die. 

Some oncologists will be very welcoming and stand up and shake your hand, giving an empathic smile that suggests they have a human and approachable side to them. Others will adopt a more formal approach, which they see as more professional, and act as though they are the expert and you the patient who will unquestioningly do as you are told. This may seem cold and impersonal, but doctors have to place some emotional barriers between themselves and their patients if only to safe-guard their own psychological well-being. For others being in control is not just a defence mechanism but a key part of their professional personality. 

Many people experience feelings of fear and panic, which are completely normal and expected, but which can feel overwhelming. It does mean that in this situation, it’s more difficult to take in or comprehend the information that will be supplied to you. Therefore it is imperative that you bring at least one other person with you for this appointment, preferably someone who is clear headed. The obvious person to bring with you is your partner, close family member or best friend – though beware that having someone with you who is even more freaked out then you are will not be helpful to anyone, least of all you. Possibly if you have a friend or family member who has a medical, nursing or scientific background, ask them to attend the appointment as well.

Often the oncologist will start by summarising the findings of the tests you have undergone and give you a formal diagnosis. This tells you how the various results have been analysed and assessed by the various doctors and teams you have seen so far, including the results of any biopsies, CT and MRI scans and other tests. This is all about where you are, but the big issue of course is the prognosis – the likely course of the disease and how treatment can influence that.

In terms of outlining your prognosis, the oncologist will tell you the recommended treatment for your cancer. This could be a hormone therapy, chemotherapy, radiotherapy or a combination of these depending on the type of tumour. Typically you will be presented with an outline of a protocol which will include:

  • which drugs are included – typically treatment will include multiple chemotherapy drugs to reduce the risks of disease resistance
  • how many treatment cycles are required (in other words how many courses of treatment are needed) and what each cycle consists of
  • the sequence of treatments –for example three cycles of chemotherapy and then radiotherapy followed by another two cycles of chemotherapy
  • some idea of a time-line for your treatment – often this is discussed in terms of the number of weeks between the start and end of treatment
  • time points for scanning or other imaging – this is to assess treatment response and possible re-staging depending on that response

If surgery is still an option then treatment with chemotherapy may be given either before surgery (neo-adjuvant) to reduce the size of the tumour or after surgery (adjuvant) to mop up any tumour cells that ‘got away’. Minor and major side effects which are common will also be discussed.

If you have had a chance to think about the kind of questions outlined in the previous section then now is the time to start asking them. Remember, just as you are trying to digest all this information and to gauge the oncologist, he or she is trying to gauge you in turn. It is also important to ask if the therapy is being given with curative or palliative intent although unfortunately for some it will be the latter. In addition to the side effects of chemotherapy and radiotherapy, it is important to confirm that the stated improvements in survival are confirmed in the medical literature, as sometimes these benefits can be overstated by some oncologists.

In some cases you may also be offered the option of taking part in a clinical trial. If this is the case then you are advised to refer to the chapters on clinical trials, where you will find more details on what the different types of trial are and information which may help you to decide on whether to proceed with a trial or not.

At this stage, try to take in as much information as possible but do not make any decision. These are among the most important decisions you will ever have to make, so taking some time to digest the information calmly is the most sensible thing to do. The only exceptions to this are the rare situations where any delay could lead to death, such as in some leukaemias where a low platelet count could lead to severe haemorrhage.

Some people feel the need to ask the oncologist how long they have to live as they want to put their affairs in order or plan for the future of their families. Often if the patient does not ask, then this information will not be volunteered, so don’t feel that you have to ask if you don’t want to know. In any case the answer to the question will be given based on survival figures that compare survival for people with and without treatment. This survival figure is based on the statistics for a large group of patients and the most important thing to remember is that you are not a statistic, so this survival figure will probably not be based on the specifics of your particular case.

Sometimes the oncologist will tell you how effective the treatment is in terms of response. This is described as a complete or partial response but it is imperative you understand what is meant by this as it can be easily misinterpreted. A complete response means that the tumour has disappeared on a CT or MRI scan or the tumour markers have normalised. A partial response means that the tumour has shrunk by at least 50%, if it has shrunk less than 50% it is classified as stable disease. If the tumour has continued to grow, the oncologist refers to this as progressive disease.

Contrary to what you might think, a complete response just means that there is no evidence of a tumour for a period of a few weeks, sometimes even only a month. So, if you do have chemotherapy and are told that you have had a complete response to the treatment it does not mean you are cured. In reality the tumour could be back in a few weeks or months. It simply means that you are currently in a state where there is no disease apparent and are therefore classified as having a complete response.

Most oncologists will appreciate that you need time to get your thoughts together and make a decision and will be happy for you to ring them with your decision on whether to proceed with the treatment they have outlined or not. In the meantime, you have to do your homework and research the treatment that has been offered. Please remember to make notes, or better still ask one of the people with you to make notes. See also the next section on preparing for appointments for advice on this.

If you have been told that your disease is incurable because your cancer is not amenable to surgery (not resectable is how it may be described by your doctor) then it is important to make certain that this really is the case. If the tumour has spread to other organs, then the reality is that surgery is not an option, although occasionally this can change later if the tumour turns out to be exceptionally sensitive to chemotherapy. If there is no evidence of spread or distant disease then you have to ask why surgery is not an option. This sort of decision has to come from a surgeon, not from an oncologist or radiologist.

Some tumours are localised with no evidence of spread but are deemed inoperable because the tumour has encased vital blood vessels. In this situation it is imperative to get a second surgical opinion from a hospital that is known for performing surgery in that region of the body. Again, do not rely on a referral to a second oncologist as they have insufficient knowledge of the surgical skills required, instead do some research on the internet to find a surgeon with a national or international reputation and insist that you are referred to him or her.

Once a treatment plan has been agreed you will be given a treatment protocol that maps your treatment. It will have details of times and dates for drugs, radiotherapy, surgery and various scans and tests to monitor how you are doing. There will be check-points where you will be ‘restaged’ and the plans changed depending on whether your disease is stable, increasing or decreasing. 

Preparing for Future Appointments

Meeting doctors will become a regular event, but when you are having different forms of treatment it’s the major meetings with your oncologist that will assume the greatest importance, particularly when waiting for results from scans or examinations.

At times like this you will be stressed and apprehensive. No matter how much you like or respect your doctors, you’ll be feeling tense and nervous. Sitting in the waiting room can be hard, especially if the clinic is running late and you’ve been waiting for ages. At times like these it’s easy to get so stressed that you forget to ask the things you’ve been meaning to ask. It’s ridiculous, because you may have been waiting for ages to ask these questions, but you can be blindsided by news (good or bad), get diverted by some other train of thought or simply forget everything and just sit there passively while the doctor leads the discussion. Afterwards, you’ll kick yourself for not having remembered to ask your questions and will either have to wait for the next appointment or get on the phone or look for someone else to ask.

So, the first rule for seeing your doctor, particularly for those big meetings to discuss scan results or re-staging, is to prepare in advance. First and foremost, take the time to sit down and go through what it is you want to know. Don’t leave it to the last minute if you can. Write down your questions, discuss them with family or friends if necessary, but make sure you have them on paper. Writing the questions down might seem such a pointless thing to do, but it will pay dividends in keeping focused and making sure that you get the information that you need, not just the information the doctor thinks you need.

Having your questions in front of you also has a fringe benefit in that you have pen and paper to hand. If your oncologist mentions a drug, treatment or side effect that you’ve never heard of before then write it down. There’s nothing more infuriating then coming away from a meeting and only half remembering important details. And a lot of the drugs that are used in oncology have weird names (bevacizumab, imatinib etc) that are hard to remember clearly – you need them written down. Don’t be afraid to stop and ask for the spelling. The drugs may just trip off the tongue of a specialist, but for patients they are all new and strange sounding. It’s the same for treatments – intra-arterial chemoembolisation, photodynamic therapy and so on are hard to remember, especially if you’ve just received bad news.

Keeping pen and paper to hand is useful to get a note of all these. And tick off the questions that are answered so that you can make sure that nothing is missed. Take the time to look at your list, especially if the meeting is a difficult one. At the end of the appointment if anything has been missed, then go back to it. It takes a certain amount of discipline to do this, and you may be a bit nervous about appearing odd, but it’s more important that you get the information you need. Unfortunately, it often still true that the default position in many clinics is for the patient to be a passive receiver of treatment and is not expected to ask questions or be difficult. That might be fine if you’re dealing with a bit of an infection, but when you’re dealing with a disease like cancer you need to take more control. And, believe it or not, you’ll feel better for having that degree of control.

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