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?
First, I stay informed with review of periodicals, online forums connected to research & medical centers, talking with other doctors, and talking with other patients. Second, I ask questions and push back when I see the need. Many times, I'm in front of the doctor's decision. Third, if I encounter denials by insurance I become involved along with my doctors. I've argued and pushed back, and won arguments. ==== It is important to be your own best advocate.
little pushback from my doctors, the conversations are very open and 2-way. Insurance? Twice I have had denials to treatment decisions. Once related to medications. An easy win once backed up with information from PCF, drug maker and my doctor's input. Second was denial of a PSMA PET scan, which I offered would probably be denied as my PSA was undetectable. It was wanted to check on any issues that may be missed in PSA test since I have a strong family history and Gleason 9. The insurance company pushed back for an MRI which I felt was too generic. Talked with my oncologist and said I wanted a CT Abdominal & Nuclear Bone scan. My reasoning included looking at other possible medical issues (I have a Mitral Prolapse/Regurgitation, Venous insufficiency, and propensity for Kidney stones.). It was denied and my doctor and I filed an appeal. Interestingly, a doctor on the review board called me directly to discuss my appeal. A twenty-minute phone call ensued, and I point by point discussed my reasoning. When I finished, I was told it would take 72 hours to get an answer. 1 hour later I received a phone call back telling me it was approved. The advocate go-between told me the doctor I spoke to didn't want to talk with me again. I made him feel ignorant and unaware of prostate cancer. Those scans were important as they pointed out some calcium buildup on my coronary artery. It also showed a kidney stone in the very upper part of one kidney. Led to a nuclear stress test and gave my cardiologist a great deal of information. Same with kidney, and other organs were great. It also showed some arthritis in my feet and one leg which helped explain some discomfort in these areas. ---- Treating the PC top of list but keeping an eye on everything else is also important. Utilizing each step to its fullest can assist other doctors with care and treatment of other conditions that may be present or show up. Thanks for sharing your story of how advocating for yourself works! And it's very necessary with insurance companies. All the best, Kathy (Team member)
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.
