It can be slightly overwhelming to deal with so many doctors and medical staff as a cancer patient or caregiver. My wife and I dealt with too many doctors to count during her cancer journey, so I did learn a few practical things that can make your doctor interactions go more smoothly.
First, if you are at the stage where you haven’t been diagnosed with cancer but you suspect something may be wrong, don’t wait to see your family physician. Some people are embarrassed to see the doctor because they think they’re overreacting. Let the doctor decide if you’re overreacting – that’s his or her job.
If you are someone who has trouble trusting a physician, or would only see a naturopath or other non-M.D. doctor, I would urge you to re-consider. It’s not necessarily a bad thing to see a naturopath if you are so inclined (we did it), but you also need to get the opinion of M.D.s because they are the most knowledgeable where the human body is concerned. The reason is simple: they study this stuff for 10-15 years before they’re even allowed to practice (get it?).
Image: Science-Based Medicine
When you do see the doctor with your concerns, one of a few things might happen. She might have a clear explanation for your concern and strongly conclude there is nothing wrong. In this case, I would trust the doctor’s knowledge and go home. Another possibility is that she says that there are a few options of what it could be, and one of those options is cancer. Most doctors will probably send for tests or make an appointment with an oncologist. However, if she says there is a chance it’s cancer but she does not suggest going for tests, you may want to push back a little bit.
This scenario happened to my wife and me. We were seeing a doctor at a fertility clinic and doing some fertility-related tests. They found a cyst on Julia’s ovary. When they initially found it, our main doctor (who was excellent) was on vacation, and the doctor covering was completely unconcerned about the cyst. Now, hindsight is 20/20 and I don’t blame the doctor for anything. Benign cysts are very common, and the cancer was probably already too advanced to make a difference. I think we were in shock even hearing the word cancer, but I wish I had at least asked more questions and maybe asked for some more tests. When our doctor returned from vacation he booked us an appointment with an oncologist right away.
Chances are that you will be seeing different specialists at different hospitals. Some of these hospitals will be on the same computer system, but if your region is anything like Ontario, Canada, not all of them will be. It’s really unbelievable that in our technology-filled world all of the hospitals don’t share information seamlessly, but that’s neither here nor there. The lack of a shared system means that any background information from other hospitals that can help doctors is your responsibility to provide.
When you get a test done, ask for the paper report and the scan images (usually on an old fashioned CD in my experience…hospital technology for you). Then when you go to appointments at other hospitals, or to be safe, with any other doctor, bring all of the reports and scan images, as well as all of the medications you take. I would also practice giving your “history” talk because when you’re nervous it’s easy to forget something important.
Speaking of tests, it is always helpful to have another doctor in your life look over the reports, even if the doctor is in a different specialty. You should still definitely trust your main specialist’s opinion first and foremost, but it’s always good to get a second opinion on what the tests say. The main reason is that there is so much medical jargon in the reports that it’s almost impossible to decipher without a doctor. And your specialist will not be able to take the time to explain the entire test report to you.
Another thing that people often don’t think about is appointment scheduling. Try to book your appointments as early in the morning as possible. If you come in later in the day you can almost guarantee that your doctor will be running behind schedule. In the morning there’s a good chance she will be running late as well, but your odds are better. Doctors are often tired at the end of a long day as well and you may not get them at their best. It’s also easier to find a parking spot in the morning, which is a big bonus.
Another important note on appointments: you may have to schedule some appointments very last minute. You will often have to cancel other plans or take unexpected time off work to get to these appointments. Sometimes something changes with your spouse or partner’s health and your doctor will want to see you right away. Last minute appointments also happen often when you first get referred to a specialist. Doctors often go away for conferences or vacation and if they get a referral that is urgent they will want to fit you in before they go away. This is something that you will want to talk about beforehand with work so they understand when you tell them you can’t come in the next day.
One final note specifically about oncologists. They are amazingly knowledgeable about cancer and about the human body in general. However, there are limits to everyone’s knowledge. There are certain issues that may come up where you will want to ask to see a different specialist. One of these issues especially relates to the palliative care stage but could happen throughout the cancer journey – and that is pain.
There are pain doctors who know exactly what types of medication work best for different types of pain. Oncologists aren’t as knowledgeable about this so it’s important to ask to see a pain management or palliative care doctor (even if you’re not palliative) when it’s clear the oncologist is having trouble managing your pain. Again, you may have to push for this even if the oncologist says it’s not necessary. Alleviating pain makes a world of difference in quality of life, so make sure you see the doctor that can do that best.
Lastly, I may sound critical of doctors in this post. That’s not my intention. I have multiple doctors in my immediate family, and I am so thankful for all the doctors we saw throughout Julia’s cancer journey. I would advise you to trust the doctor’s judgment. It can be easy to think that you know your body best so you know what you need more than the doctor. That’s not true. Our society has extensive training and strict licensing of doctors for a reason. But everyone makes mistakes or overlooks things from time to time. By being active in the medical care of your loved one you can decrease the chances of this happening.