Monday 25 July 2011

Meeting your oncologist

Most of the articles on this site have so far focused on cancer research or the politics of that research. However, the intention is to do more than just summarise results or to argue for changes in policies, it is also firmly about providing practical support and advice to cancer patients, their families and friends. With that in mind this post is going to look at something that might seem trivial but in reality is absolutely essential – how to approach the meetings with your oncologist or other specialist. While some people will view an article like this as being a bit pointless, there are others who might gain some useful tips, particularly as we all have a tendency to defer to our doctors. The whole area of doctor-patient relationship is a bit of a nightmare, for all sides, but unless that relationship is solid things will be more difficult than they should be.

When you first get your diagnosis, or when waiting for results from scans or examinations, you will be stressed on meeting your doctors. No matter how much you like them or respect them, you’ll be feeling tense and nervous, a not a little apprehensive. Sitting in the waiting room can be hard, especially if the clinic is running late and you’ve been waiting for ages (which was the norm, in our experience). 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 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 an obvious 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, 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 (imiquimod, imatinib etc) that are hard to reconstruct – you need them written down. Don’t be afraid to stop and ask for the spelling. The drugs may just trip of the tongue of a specialist, but for us 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 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 about nervous of appearing odd, but it’s more important that you get the communication you need. The default position is normally for the patient to be a passive receiver of treatment. 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.

Finally, get your oncologist’s email address. Ask for it outright, or else go on the hospital web site and get it. There will be times when you want to ask a quick question, or want to discuss something you’re read (for example a new drug or treatment) at the next appointment. Being able to communicate outside of appointments, or 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 (and yes, that happened to us on occasion), but at best you can engage in a dialog that enables you to access support outside of a clinic or a hospital ward.

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