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Saturday, May 12, 2012

Should I trust my oncologist?

I've discovered something disturbing by lurking around in cancer forums and chat rooms. Many women are afraid to trust their doctors. They troll the Internet searching for clues to make sure they're getting the right information. It's a scary world out there, and sometimes what they see conflicts with what their doctors are telling them.  But how does an internet search stack up against a qualified physician? Let's take a look at how long it takes to become a medical oncologist:

Step 1 - 4 years of undergraduate work
Step 2 - 4 years of medical school
Step 3 - 2-4 years of residency
Step 4 - 2-4 years of Fellowship
Step 5 - Pass the certification test
Step 6 - Maintain education and get re-certified every 10 years

So, after 12-16 years of higher education and clinical experience, observation and testing, only then can you call yourself a board-certified medical oncologist.

Not even I spend the equivalent of 12-16 years researching on the Internet. Look, you have to be your own advocate, ask lots of questions, get second opinions and keep accurate notes on what you're told and what your diagnosis and condition are, but at the end of the day, you have to remember that your oncologist went into the field to cure people just like you. 

After one sleepless night spent reading about alternative therapies and the supposed miraculous properties of blueberries, I asked my oncologist about all the information I had found. She was very patient and went over each idea with me; and at the end she said something I have never forgotten. "Andrea, we are all working to find a cure and a cause for cancer. All of us in the field. Believe me - if there's credible new information out there - it's not going to be a secret.  We'll be yelling from the rooftops." The real problem is that nobody knows what causes cancer in some people and not in others. Nobody knows what your trigger might have been and nobody knows yet exactly what will flip the switch off in every single case.

We may find out 10 years from now that 12 cups of green tea, plus 4 pounds of blueberries, a shot of vitamin D, 4 sessions of acupuncture plus 1 hour of sun per day can prevent cancer - who knows? Or maybe it's something nobody has even considered yet. Right now your oncologist is most likely operating with the best information at hand. That said, if you feel like you are not being listened to - find someone else.

Being diagnosed with cancer is terrifying and it seems like the information changes all the time. We find it incredibly frustrating that our oncologists don't have all the answers. In my own experience, nobody is more frustrated by this than our own doctors. They want to heal us. They want us to keep our hair and our breasts and our sanity. They want to save our lives - and when things go wrong - they suffer too. Not as much as we (or our families) do, but they suffer.

So, my top 5 tips for finding the right doctor are:

1. Ask everyone you know for recommendations. I mean EVERYONE. Go to a support group in your area and ask everyone who their doctor is and if they like them. Ask your gynecologist, your dentist, your co-workers. Check out the local chapter of the American Cancer Society and ask for resources. When you start getting the same names over and over again - that's your short list.

2. Choose a doctor who specializes in breast cancer. If there's nobody in your area with that particular specialty, then ask what percentage of their patients have breast cancer. Choose someone with the most experience in that area.

3. Make sure you feel comfortable with the nurses and office staff of your oncologist. This is not your surgeon, whom you only have to deal with for a few months - your oncologist is going to be a huge part of your life for the next year or more, and how you feel in the office can contribute to how much you trust the care you're getting.

4. Get a second, or third, or fourth opinion. If you have any doubts, call around and see someone else. Even if the person you choose is supposed to be the best - if you have doubts, meet with another doctor and find out if his or her information is the same. Be warned: in some cases, there are different courses of treatment and you may have to decide for yourself (without the benefit of all those years of medical training) which is the best course for you.  If you get different opinions, discuss them with the doctors.  Keep your discussions open and without accusation. Your goal is to gather information so you can make the best, most informed decision.

5. Once you've made the decision you think is right - go with it. Don't second-guess yourself. It's pointless. Keep yourself informed and ask lots of questions, but try to remember that breast cancer is crafty and nobody has all the answers.  If they did - we'd all be cured by now and we'd be going on 3-day vacations instead of 3-day walks.

1 comment:

  1. Hello! I just stumbled on your blog. I have found your words very comforting! My best friend has terminal cancer and has been given just 12 months to live. Last month she was a normal mom living a normal life. I am going to send her the link to your blog. I think she will find a lot of comfort. I am trying to be a supportive friend. I am reading a book called, "It's Just Hair: 20 Essential Life Lessons" by Judith L. Pearson. This a non-fiction self-help book for women battling breast cancer or anyone facing a challenge in life that is written in a humorous, inspirational and encouraging tone.
    I have been very impressed with the positive message written by the author!