Urologist only offers Degarelix or Eligard, so what....

Did you have ADT with your radiation treatments?

Eligard is just one of many ADTs (Lupron, Eligard, Prostap, Camcevi), all with the same active ingredient (leuprolide). Why not Eligard?

Why do you prefer Orgovyx? Will your insurance cover it?

I had Eligard (two 3-month injections) as part of my 28 proton radiation treatments for localized 7(4+3); PSA 7.976.

Well, I'm not a fan of physicians who do not believe in shared decision making.

Did she explain why, go over alternatives, look into insurance...

Orgovyx does have some advantages over what she prescribed for you and others.

Advantages:

Lower CV side effect profile
No flare
Faster castration
Higher sustained castration while on it
Faster recovery of T once stopped.

Disadvantages:
May be expensive
Requires patient discipline to take each and every day.

Did she describe a time you would be on ADT, 6, 12, 18, 24 months, indefinite...?

I did Lupron my first time, 18 months, 90 day shots.

This time around when my medical team suggested Lupron, I said no, Orgovyx for the reasons I listed and my CV history. Financial toxicity is not an issue for me with TRICARE For Life as my Part D.

So, prescribing Orgovyx may be an insurance issue, since it's expensive, they may deny for "cheaper" drugs that achieve the same outcomes. If so, and you have CV issues, that may be the basis for appeal.

If it is the bull headedness of your physician, well, that's a different story, especially since you say alternatives are limited.

Maybe lay out the reasons you want Orgovyx, see if she actively listens. This is just a possibility but not out of the realm of the possible, with Orgovyx, there is no doctor and hospital fees associated with injections, so she may be losing out on those - look at your EOB from your insurance company.

Kevin

Hope you've been helped with your treatments. How did you react to Eligard? The long-duration shots are of a concern especially regarding current arthritis, hence my interest in Orgovyx. My gleason was 4+3, latest PSMA shows still localized. I had 43 rads three years ago, got my PSA down from 6.7 to .5 but has rebounded 140% in the last year, now at 2.16.

Thanks for your thoughtful sharing experience. No, my doc is ask-only, no educational or empowerment, nothing along the lines of your recommended questions. I believe I would be better served by the Orgovyx. We will revisit in 2 months, but she has already set her limits by prescribing only those two drugs. I'm sure the money and control factors are at play with inoculations.

There are known and documented side-effects with all ADTs. Some are “possible” while others are “likely.” Always focus on the “likely” ones. Most men experience some of these side-effects of hormone therapy to varying degrees — some more, some less —> forgetfulness, confusion, memory loss, mood swings, emotions, fatigue, loss of libido, ED, insomnia, hot flashes, night sweats, muscle atrophy, weight gain, and more….

There are ways to minimize many of these side-effects. Here are videos from recent PCRI conferences about ADT and the physical benefits of exercise:

As for your arthritis…. Similarly, my bone scans, though they are negative for metastatic disease, show (what I could have easily told them) that I have “….degenerative changes in lower lumbar spine and multiple joints (shoulders, sternoclavicular joints, elbows, wrists, knees, ankles, feet, right humeral shaft….likely non-specific and represents a benign process).” Basically, my sports injuries from football, track, gymnastics, and more…..many decades ago have all come back to haunt me now in my 60s.

Still, I push through it because I have to; no excuses.

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.

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.

Orgovyx is newer, your urologist is using what she has had success with. I've spoken with oncologists who say that he advantages with orgovyx are many, but they just haven't changed their practice, yet.

My gut feeling tells me that those medical providers against Orgovyx is because they know their injected patients are compliant and they really don’t know with the Orgovyx. After working 25 years as a nurse and seeing the elderly in my own family being very noncompliant with their medication’s I would probably have to agree..

see an oncologist/