How to Prepare for an Oncology Appointment
The fear and anxiety of a consultation with your oncologist can start days or even weeks before the appointment, especially when it is time to receive your latest scan results. Learning methods to reduce these feelings can have a massive positive effect on the quality of your life and help you make informed decisions about your treatment. These six recommendations will help to put you get the most out of every consultation and put you in control of your journey.
1. Prepare for Every Appointment
You will probably be allocated a 30 minute appointment time with your oncologist and you need to squeeze every drop of value from this time that you can. Whilst 30 minutes might seem like no time at all, remember that this time is dedicated to you and you alone. You have an expert who has probably trained for 10 years to be qualified to sit with you, not to mention the years of experience he or she has had practicing their trade. If you prepare well enough for this appointment and keep on track, you can derive a massive amount of value.
Write down the questions you want to ask in advance of your meeting. I keep a Google Doc of my questions so that whenever a query comes to mind I can write it down ready for my next meeting. A dedicated notebook will also do the trick if this feels better for you. Either way, a day or so before my meeting, go through your questions to double-check that you have covered everything you want to discuss. You should also order your questions by priority so that, should you run out of time, you have at least covered the most important ones.
If you have a partner or a companion, involve them in the preparation too. They might have important questions that you have overlooked. Just be mindful that you are in charge.
2. Bring Someone with You
Whenever possible, bring someone with you to every appointment, especially in the early days.
If you have a partner, I would recommend that you bring them. This helps to ensure that you are on this journey together and will strengthen the emotional bond between you.
Now that I’m a couple of years down the line, I sometimes attend appointments alone as the logistics of childcare aren’t always easy. That said, my husband always comes with me when I’m expecting scan results.
3. Listen and Take Notes
Your companion isn’t just there for emotional support (though this is very important), they are also there to take notes.
You will be given a lot of information in each meeting and it is impossible for your brain to take everything in. Ask your companion to take notes so that you can be 100% focussed on asking questions and listening to the answers.
After the meeting, review your notes and make sure you keep hold of them in a dedicated folder as you will almost certainly want to refer back to them at some point.
4. Keep on Track
All meetings can veer off track and can fail to achieve their purpose. This is especially the case when emotions are high.
It’s not easy, but try to keep your emotions in check at these meetings so that you are more present and in a better state of mind to listen and understand.
Getting upset is inevitable, but it wastes valuable time that could be spent furthering your understanding of the situation you’re in.
You are less likely to veer off track and become emotional if you have prepared well. Calmly work through your list of questions and try to ensure that you get as much value from your appointment as possible.
5. Avoid Speculating
Whilst we are all desperate for reassurance about the future, your oncologist can’t provide this certainty. One question that I have never asked my MO is ‘How long have I got?’.
A simple Google search tells me that the average lifespan of somebody with Stage Four breast cancer is 2-3 years. This of course is an historical average which takes no account of how well I choose to look after myself, how well I respond to treatment, the histology and grade of my cancer, the availability of new treatment lines and all sorts of other factors. With averages, there are always outliers - people who unfortunately lose their life to the disease very quickly and those that live tens of years. Neither I nor my MO know whether I will be one of the lucky ones, but I am going to do everything in my capacity to give myself the best chance.
That said, it is useful and somewhat empowering to build up a picture of what treatments lie in store for you when the current treatment stops working. Knowing what your future options might be should be part of the conversation, but avoid trying to pin anything down. Try to focus on the plan for the next 3 months.
6. It's Your Choice
Your oncologist may recommend a particular treatment option, but that doesn't mean that it is the only option or the best option for you.
Oncologists recommendations are largely based on what has been effective for people with a similar diagnosis as you. But cancer is an unpredictable disease that manifests itself differently in every person. Treatments that are effective for one person may be ineffective for someone else despite having a seemingly similar pathological profile. Furthermore, the side effects of the treatment can differ enormously from person to person.
When deciding on the best course of treatment, there is rarely only a single option. For example, when my cancer metastasised to my sternum, my oncologist and I had to weigh up the risks and potential benefits of three interventions - stereotactic radiotherapy, systemic chemotherapy and a sternectomy (an operation to remove the sternum and replace with a prosthetic one).
When choosing a treatment option, you also need to consider the impact that it is likely to have on your lifestyle. For example, are you prepared to opt for a treatment with severe side effects if it has been shown to be the most effective? Maybe you're not prepared to compromise your lifestyle this much and would prefer to opt for a historically less effective treatment with fewer known side effects.
Working in collaboration with your oncologist to understand the potential risks and benefits of the treatment options on the table allows you to choose the treatment that you feel most comfortable with. There is no right or wrong and the choice is yours.