Taking the Reins of Your Care
The decisions don't stop after the initial diagnosis. Whether you're weighing the pros and cons of treatment options, finding the right care team, or navigating the cost of cancer both emotionally and financially, we want to know how you stay in the driver’s seat.
- How do you prepare for big treatment decisions?
- How do you manage the "hidden costs" of cancer?
- How do you find the balance between clinical results and your daily quality of life?
I research periodicals, professionally reviewed peer papers and current (within the past 5 or less years) trials and studies. I get very frustrated when a professional doesn't like attempting conversations at eye level instead of top down just listen and be quiet. When I mention research to some, I'm told I should not be consulting Dr Google. We must not assume that shallow, general, non-substantiated wiki search is the same as getting into our disease at a far deeper professional level by a patient. We all want to best understand our options and the data surrounding treatment decisions that affects me and my personal life.
Thank you for this information about peer reviewed articles here. I have one oncologist who has little time for talk, doesn't ask my sources and makes me feel stupid since I'm not a medical professional. I'm challenged for opening my mouth and asking and trying to offer anything to the conversation. She is defensive and I never get that detailed. Our lives matter and a few more minutes to agree on decisions as a team is more my style. I do my background research to be sure I understand my options and outcomes. I am so sorry to hear that! Are you familiar with the term "Medical Gaslighting?" When doctors minimize or dismiss someone's health symptoms, it is known as "medical gaslighting" and it sounds like how you describe your oncologist. It does put you in a difficult position to have to constantly be advocating for yourself. If it continues, you may wish to ask for a second opinion or even another doctor. Hang in there! All the best, kathy (Team member)
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Thanks for commenting. Are you having trouble managing either emotionally or financially since your cancer diagnosis? What have you found that helps? Warmly, Kathy (Team member)
I am trying to do everything I can. I research each & every day all I can.
It's quite a job to research and learn enough to help you when weighing treatment decisions. Have you come across a source or person who has been beneficial for you? All the best, Kathy (Team member) My wife who used to be an Organic Chem Professor edited she retired. Detail oriented and the doctors listen.
