Second Opinions

I visited my gastroenterologist, the fabulous Doctor C, to keep him up to date on the progress of my treatment. I took him all my latest lab results, the two prescriptions the research doctors have given me to treat my pain and insomnia and the questions I had been accumulating about what I have been going through.

Doctor C is a great listener and takes as much time as needed to deal with his patients’ questions and problems. He went over my file and the latest test results I brought with me. He had a number of questions about the physical side effects of treatment. He asked about the nature and severity of them as well as any measures that were being taken to either counteract or mitigate their effects. I also asked him for his opinion of the drugs they had given me for the muscle pain (tramadol) and for insomnia (trazadone). He immediately pulled up his drug reference app on his smartphone and gave me the details. He told me that the tramadol was fairly standard for the pain. He went into more detail about the trazadone. He told me it was an antidepressant that had been around for over 20 years and that it was a very safe drug. He said that it had also demonstrated good results as a sedative. He told me that as an antidepressant the dose went up to 300 mg. and that as a sedative the dose was either 50 or 100 mg. I was prescribed one 50 mg tablet as needed. He told me that if it was not working at that dose to take two. It was perfectly okay and would probably be very effective.

He also questioned me quite extensively about my state of mind. He is very concerned about the side effects of interferon. He has had extensive experience in prescribing it for various conditions and has seen that it can be devastating to some patient’s mental state. He mentioned that his father had taken it for a lung condition and had become extremely depressed. He was a bit surprised that I was not on any antidepressants. He mentioned that when he prescribed the standard therapy for Hep C for his own patients he usually started a prophylactic regime of antidepressants right at the start. He suggested that I pay close attention to my mental state and that I should keep both the study doctors and him informed of any changes.

It was a good meeting and I think it shows the importance of having someone you trust on your team going into treatment, whether it be a research trial or the standard of care.
The books and advice sites all say that you should have a hepatologist as well as your primary care or personal physician in your medical team. I am not sure it is absolutely essential that you have a hepatologist. Doctor C is a gastroenterologist who has extensive experience with Hep C. As a hepatologist is a sub-specialty of gastroenterology, an experienced gastro person should be familiar with Hep C. If not, look around until you find one if you can.

You need to have a doctor who listens to you. That is the most important characteristic you need to find. You need to find the best mix of attention and knowledge in your doctor. This is especially true for a research trial. The research trial doctors are very good and want their patients to succeed, but I have never talked to a trial doctor for more than four or five minutes. The conversations are about specific reactions and not about the general state of my health, my state of mind or my progression of symptoms. Thus, you need to have a doctor outside the trial to backstop the questions, the decisions and the information you are getting in the trial. You need someone who is on your side.

Unless you don’t have a choice, and unfortunately there are lots of people in that situation, don’t go into a research trial unless you have a personal or primary care doctor who knows exactly what you are planning to do and what to watch for because of it. If you can, get a referral to a gastro person with Hep C experience or a hepatologist before the trial. You can give them the details of the trial, they can get your history and you can forward your results to them as you receive them. This way you can get the support you need when you have questions and concerns that may not be met by the study doctors.

Never be afraid to ask for a second opinion. It is your right as a patient. Get all the information you need to feel comfortable proceeding with your treatment be it drug trial or standard of care. You are the only person who has only your best interests at heart, so do whatever you need to defend those interests.