I recently read a most interesting press release regarding the major gaps in treatment discussions between patients and metastatic breast cancer patients. I couldn’t help but be extremely surprised by this study’s results and the likelihood that this also applies to such discussions between patients and doctors at all points following a cancer diagnosis. Most importantly, I am trying to understand why this is occurring when there is so much information available, not only for the medical professionals but also for cancer patients at all levels.
Every single cancer patient should request and require a conversation with their doctor regarding the course that is being designed for their cancer treatment at the time of diagnosis. This will allow for the patient or caregiver to review and research the information provided and decide whether a second opinion is needed. Barbara Jacoby
Perhaps this has become a problem because our doctors have been forced to direct more of their time to electronic record keeping which takes away time from patient interactions and researching new treatments. Although our doctors are spending more time online, it is because of the need to be sure that everything has been properly recorded there within assigned guidelines in order to receive payments from government and insurance companies for their services. This shift in priority has diminished the amount of interaction between the doctor and his/her patient and has turned the doctor’s office away from a medical practice and toward a business office just like any other. As a result, it is more important than ever for the cancer patients to advocate on their own behalf.
The problem for the patient is entirely different. While one can find literally hundreds of sites that are loaded with more information than most people would ever want to consider, most patients do not have the training to understand a good portion of what they find. Therefore, it takes a lot of time and energy to focus in on finding the materials that pertain to your particular type and stage of cancer. The next step is to compare the information with what your doctor may have recommended and how that may compare with other treatments that you find. Quite often a patient will then go to a site where there are communities of other patients who have dealt or are dealing with a similar situation to see what treatments they have been prescribed. And if there is information there that you would like to discuss with your own medical team, you should feel perfectly comfortable to do so.
If you find that your doctors are not willing to discuss other options with you, you may want to consider finding another team with whom to work. If, after your discussions have been concluded, you are still not sure what option is best for you, you should consider getting a second opinion or third if this is the best way for you to feel comfortable with the treatment that you are about to undergo. And once you begin a course of treatment, you may want to keep a journal of any problems that you are experiencing that may be side effects from your treatment so that they can be discussed with your medical team.
A patient should never hesitate to report side effects to their doctors, even if the side effects are on the list of those that may be expected in connection with a particular treatment. There are a vast number of singular drugs and drug combinations that can be prescribed so that the best course of treatment can be better tailored to the individual. From my own experience, an aromatase inhibitor that was prescribed to me worked perfectly with absolutely no side effects. That same drug produced extreme joint pain in a friend of mind. And when I was switched to the generic counterpart of my prescription, I experienced such tremendous joint pain that I had to stop taking the medication while others that I surveyed on an online support group indicated that the same generic drug was working perfectly for them.
Every single cancer patient should request and require a conversation with their doctor regarding the course that is being designed for their cancer treatment at the time of diagnosis. This will allow for the patient or caregiver to review and research the information provided and decide whether a second opinion is needed. The more that a patient knows, the better (s)he is able to participate in treatment with hopefully the best outcome possible. And if at any time either the patient or doctor determine that a course of treatment needs to be changed, a new dialogue should ensue so that there is a complete understanding and buy-in on both the patient’s and the doctor’s part.
Barbara Jacoby is an award winning blogger that has contributed her writings to multiple online publications that have touched readers worldwide.