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Urologist only offers Degarelix or Eligard, so what....
Prostate Cancer | Last Active: Apr 14 2:14pm | Replies (16)Comment receiving replies
I have fired two along the way, one was Director of Urology at a NCCN Center and Director of a major medical association, the other a Urologist in a local practice. I've published these before, in case you haven't seen them.
Please know your stuff. As a member of my medical team, you should have a thorough knowledge of my cancer and of the latest developments in research, and be ready to formulate a plan of attack.
Do your homework. I expect you to have reviewed my medical records prior to my appointment. You have looked at my x-rays; you have my pathology report; you know how many children I have. In the world of cancer care, every scrap of data must be scrutinized for its significance.
Respect my point. of view. The best doctors listen to all sides thoughtfully before reaching a conclusion. With patience and finesse, I am sure you can help me to feel confident about the plan you have shaped for me.
Curiosity did not kill the doctor or patient. Do not close your mind to new hypotheses and don’t ignore clues that might lead you toward the best results. Please rid yourself of the temptation to make your day easier by delivering perfunctory care.
When it’s decision time, decide! If you think treating my cancer is not worth it; if you think I am at the point where I should stop chemotherapy; if I have veered off the path you have cleared for me—then speak up! Care for me with a dogged determination to get me healthy and do not keep any secrets that might lead to regret. I want an oncologist who knows what is best for me and doesn’t chicken out in difficult times.
Be responsible. Follow up on promises and follow through on tasks. I can tell you with absolute certainty that there is no greater disappointment than realizing that you cannot rely on your doctor.
Talk to me. I need your advice, comfort, and expertise; I am scared and discouraged—are you willing to take a seat, look me in the face, and answer my questions? Leaders welcome scrutiny of their communication skills. No one cares if a flunky is curt.
My Rules:
Don’t Walk In Cold to an appointment. To make sure I do the best thing for my individual prostate cancer, I need to educate myself. * Knowledge will empower my BS detector. When two orolgists told me monotherapy ADT is what I needed and did not want to talk about imagining and combining other therapies such as radiation and chemotherapy, I didn’t just have to accept their advice on faith.
Walk in the door ready to start the conversation at a different level. I don’t have to spend time talking about the basics, things like Gleason grade and clinical stage and what they mean. I already know. I can have an intelligent discussion about the merits of a particularly treatment for my cancer, my likelihood of being cured, and risk of side effects. * I won’t blindly accept the opinion of a non-specialist– I know that my cancer requires a team approach.
Once I make an informed decision and carry it out, I never look back. Well, that is not entirely true, I look for lessons learned from that decision. The path is always forward: I continue to learn about PCa and always look ahead. What counts is today and what lies in the future. Yesterday is gone, so forget it, well, learn from it.
I educate myself as completely as possible and take the time I need, I always know that no matter the outcome of a particular choice, I make the best possible decision. That knowledge that I have thought my decisions through carefully is what is really important—and may be more important than the decision itself. I am in charge. Not my doctor. They need to be consulted and their opinions and ideas should carry weight as I make my decisions. But I never forget: it is my life, my today, and my future. I have made the best possible, fully educated decisions that makes sense for me, with the focus o nlong life.
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Shortage of urologists. And of those taking new patients. And especially of those who don't get abominable ratings. Lastly, a s hortage of those who will prescribe Orgovyx. I've given myself two months to explore options within an hour's drive and who merit waiting months before a first visit. Thanks for your marching orders toward a focused mind. Below is mine, which has been published elsewhere. Keep the faith and forward!
Telling a doctor "no" is sometimes the healthiest option:
No, you can’t autopsy my father. When I was 19, saying no to a physician was like cursing at a priest.
I mustered the answer because it carried certainty – funeral then burial then true mourning. Years later, I grasped deeper consequences – Dad becoming body, then cancer specimen, then data blocks and, overriding all, an autopsy delaying everyone getting on with their lives.
In medicine, saying no has muscle. Patient told there are no beds, no chances of survival and no water after midnight. Physicians told no end to paperwork (verifying, testifying, glazing over), no end to pushy hospital administration (earn your privileges) and no relief from second-guessing.
It takes courage for a patient to say “no” or “not yet” to a physician’s recommendations. It arises from conflict – frustration, mistrust, fear.
For some, it launches dialogue – persuade me how your therapy will benefit me now and 10 years from now. For the newly insured, it’s a blunt challenge to the white-smocked expert that he explains my care in simple doughnut-shop speak.
Why is such transliteration not built in? The jagged-glass payment system doesn’t reward education and lifestyle management.
No requires homework. The doc says you need a total knee replacement. After a lengthy wait for a second opinion, you opt for a simpler, outpatient meniscus repair. In between, you’d scoured the Web, talked to physical therapists and patients. Maybe you’ll need a new knee, but you weren’t sold now.
No – to hand reconstruction. That was a hand surgeon’s high-cost, long-recovery remedy for a recurring cyst. You chose less radical but highly cringe-worthy draining by a primary care doc. Author-surgeon Dr. Atul Gawande said incremental care, providing a grocery store of services, never gets the credit it deserves. Skilled specialty surgeons draw research grants and myriad resources, while primary care docs are lucky to afford a nurse.
Biopsies, mammograms, colonoscopies – gray areas to patients. Physician-as-mentor won’t pillory you for wariness. There is time in a bottle – watchful waiting -- for lots of ailments and diagnostic tools. Even so, the patient should feel compelled to remind a physician about worsening aches or discolorations.
Physicians are rarely praised for their relentlessness, selflessness and frenzy. Neither are abusive physicians pursued for their self-lubricating criminalities with the zeal we accord terrorists.
Some patients need to be told no. Some milk the system to feed addictions (so much so that California enacted CURES, an electronic data base that tracks prescriptions for painkillers and other controlled substances). Some saturate emergency departments as though they were taking free carnival rides (Fresno County has taken steps to deter such “frequent fliers”). And some patients – and doctors – need to experience a hard stop when it comes to pumping kids with cough medicine and useless antibiotics for the convenience of pawning them off as healthy enough for day care.
Patients should weigh their words carefully. Unlike politics, good manners and civility count for something. A January 2016 study in Pediatrics found that nurses and doctors didn’t provide the same quality of care when they encountered rude behavior.
Navigating no is getting more complex. For one thing, the hands-on part of caregiving is diminishing. Your doctor visit doesn’t routinely include checking ears, throat and eyes unless they’re attached to your complaint. Medical intermediaries abound – tasked with gauging your blood pressure and pulse, taking an X-ray. You’re supposed to know – instinctively? -- what not to ask them.
So, digging in your heels may get you the higher-up attention you want. Any doctor who doesn’t appreciate a patient’s commitment to his own well-being deserves a turnstile not a waiting room.