Disappointed in the first visit to MO - Advanced Prostate...

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Disappointed in the first visit to MO

GranPaSmurf profile image
25 Replies

Did you ever see a new doctor and come away with the feeling that you just didn’t ‘connect’?

I’m still processing exactly why.

First, it didn’t seem to me like he had reviewed my chart beforehand. Decades ago, I made a decision to have all my doctors be a part of the University of Texas Health Science Center, San Antonio. Because of an excellent electronic records system that they all share. Despite that, I have the impression that he knew nothing about me before entering the room. 👎

Next, when he finally quit grilling me and started to respond, it was what seemed to be a rehearsed spiel, rather than addressing my case. He intermingled generic terms with brand names for the same treatments. This is not good communication with an average patient. 👎

Lastly, he didn’t DO anything. “See me for a follow up visit in 3 months.” 🤔Honestly, I expected Zitiga and Prednisone.

I’m on a good communication level with my Urology Oncologist and the Radiation Oncologist. I’ll be starting Radiation therapy in a few weeks so I guess I can live with a 3 month followup. (what an awful turn of phrase)

UTHSC Cancer and Research Center is aligned with MD Anderson Cancer Center in Houston; I should have easy access to the latest treatments and trials. So I don’t think drastic changes are in order – I guess I’m just impatient and prone to gripe.

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25 Replies
NPfisherman profile image
NPfisherman

No....when a Healthcare provider walks in and you can tell they haven't reviewed your chart... Say Good-bye... I had that happen once....fired immediately....If you don't know why I am here and what is going on, and what meds I am on...

Sayonara....

Fish

j-o-h-n profile image
j-o-h-n in reply to NPfisherman

with a little Japanese lingo thrown in....

Good Luck, Good Health and Good humor.

j-o-h-n Wednesday 06/26/2019 6:47 PM DST

NPfisherman profile image
NPfisherman in reply to j-o-h-n

I guess it's better than showing the Samurai sword....or asking them to commit ritual Seppuku....They generally accept it better...

Don Pescado

j-o-h-n profile image
j-o-h-n in reply to NPfisherman

Hai

Good Luck, Good Health and Good humor.

j-o-h-n Wednesday 06/26/2019 8:06 PM DST

Tall_Allen profile image
Tall_Allen

I often find that busy doctors don't have time to review charts before the meeting. Ideally, they would. But realistically, they sometimes are seeing too many patients. I think it is the patient's responsibility to manage the doctor. The other side of the coin of patient empowerment is patient responsibility.

Based on what you wrote, please forgive me if I point out a few things you could have done better.

• Point out the salient features of your case to him immediately: newly diagnosed with low PSA, metastatic to spine and tibia on bone scan/CT, started on Lupron and Casodex last month.

• Set the goal(s) of the meeting: "I'm here to decide what my next steps should be - Zytiga?" "Since my cancer puts out little PSA, how will we monitor success?"

The doctor doesn't know how much or how little you know. If you don't know the generic or brand names of medicines - tell him. Also, have someone with you taking notes and catching whatever you might miss. By taking control of the meeting, you will prevent him from launching onto a, perhaps unnecessary, canned speech. Doctors are not mind readers and take their cues from patients - it's up to you to provide the input.

GranPaSmurf profile image
GranPaSmurf in reply to Tall_Allen

Thank you for the critique, TA.

AlanMeyer profile image
AlanMeyer in reply to Tall_Allen

That sounds like very useful advice. Thanks.

I have met with doctors that struck me as highly competent but from whom I got less useful help than I hoped for. Looking back on those meetings, I am pretty sure that, for some of those meetings, I could have prepared better and elicited a better response from the doctors.

Alan

Tall_Allen profile image
Tall_Allen in reply to AlanMeyer

I think someone as well-versed as you seem to be has an opportunity to engage at a higher level. I've found that if I can speak "Medspeak," I can move the meeting from PC 101 to a graduate level. Understanding what the controversial issues are, and staying open to their expertise, can create an environment where shared decision making can happen. And if the clinician understands that you understand the risks and benefits, he is more likely to come up with a plan that is amenable to you. The best doctors I've met all share an intense intellectual curiosity and a desire to be of service.

Break60 profile image
Break60 in reply to Tall_Allen

I totally agree that you must educate yourself before seeing any doctor. When they see that you’re up to speed they’ll perk up and be more responsive.

in reply to Tall_Allen

Love you response Allen. My husband is the patient and I as his wife enter with notebook and pen in hand. Lists of all of my questions. Write all of the information down he offers. It’s totally our responsibility. However, if I don’t connect with Dr I run

Tall_Allen profile image
Tall_Allen in reply to

My urologist is an SOB - everyone who goes to him agrees. Yet he is among the tops in his field. I figure, I don't have to marry him.

DarkEnergy profile image
DarkEnergy in reply to Tall_Allen

Exactly, since I've become a bit more "PCA educated", thanks to research and many here, if you do the work - the doc will anticipate your visit and be ready.

Allen, alwayys promotes this and got the same advice when was a newbie from Patrick...

CantChoose profile image
CantChoose

We are seeing someone recommended by the group here - - leader in the field. She's very nice and my husband loves her, which is important. But I have been really struggling. I think my expectations were very high that she could somehow save him, and we are pretty much getting standard of care treatment. Of course, it's taken me two months of solid reading to understand why that's a *good* thing.

Knowing that these doctors see hundreds of men a year and that most of them eventually die is sobering. I don't know how I would do that and still engage, invest, strive for each patient. I don't know how my personal dislike or like would factor in. It would be painful to watch each wife learn a few buzz words and trot them out (as I seem to do) at each appointment.

Anywho... I've been musing on this for a while. Chemistry is a real thing. But maybe look at your expectations too before jumping ship to another boat that may be very similar.

Collarpurple profile image
Collarpurple in reply to CantChoose

I think we all go in with that thought

We know it’s not cureable but we hear that one word treatable and think yes😀. But then we start reading and learning more about this crap

And we realize that treatable is not a sure thing

And it has a different meaning to each person

And we then know the fight is on and we pray

That the bad days will be Tolerable and the good days will be great I To believe that my husband’s doctor will work hard to save him

And the team there I think they want to Give you hope because really in life nothing is a guarantee but I do know one thing if the doctor and I met with with my husband did not show any concern did not really answer any questions I would deathly go to a different doctor maybe he’s Burnt out This is definitely has to take a toll And any person that has compassion but again this is your life and you have to find someone that will help you and fight this battle too. Sorry to go on so long but I just felt like I needed to say all this to all the wives and all the men on here that I adore

FCoffey profile image
FCoffey

If you don't connect and don't trust him, try another, or 2 others. There are plenty of good docs out there, more than a few bad ones, and this is too important to put up with someone dialing in their performance.

All of my doctors review my latest results before I see them, and we often spend quite a bit of time discussing the implications and choices. But that's because I fired all the ones who clearly hadn't read anything and breezed in and out after 10 minutes of non-responsive bloviating.

Gary94 profile image
Gary94

And he probably charged you quite a bit for that visit. I would hit the road if that happened to me.

Gearhead profile image
Gearhead

What works for some people doesn't work for others. That said, here's what works for me... and some personal opinions:

Before each visit, type up a list of visit questions and objectives. Have them out and maybe have a pen in your hand when the Dr. comes in. The list has to be short (maybe 5 items, half a page) or this doesn't work. Most health care providers allocate no more than about 15 minutes for a standard visit. This isn't their fault. Look at the measly reimbursement they get from Medicare or insurance companies.

Let the Dr. tell you information and ask you questions first. A challenge here is to diplomatically stop them if they're using time to tell you things you already know.

They usually move right along because they see that you have specific questions. While they usually respect that you've done some homework and you're trying to be an active partner in your treatment, don't try to be the Dr. yourself or come up with a gotcha item. I almost always leave appointments satisfied with the information and answers I've received.

For me, competence is far more important than confidence. I believe that most doctors have learned to project a lot of confidence because patients mistake this for competence.

It isn't always as easy to switch oncologists as some prior posts imply, particularly if you want to stay with the same health care provider organization.

A good question for a future thread: Is oncology pretty much an algorithm-driven specialty (e.g. compared to neurology)?

2dee profile image
2dee

You choose who to HELP you with these life decisions. If you don't relate and form a bond of trust how can you put any faith in their advice? You have to have confidence that working together your life can be extended and quality improved.

My first MO highly recommended, only choice offered by insurance, seemed interested, seemed pleasant, but only offered ADT which I was already on from UO. Would not discuss any trials, second opinions, alternative treatments, nothing. When I wouldn't let him take over my Lupron injections ($$$ to him), his friendly demeanor vanished in an eyeblink. I asked about any other choices and he said "...your too old and too far gone, go home and get affairs in order. You have weeks to 6mos left..."

That was over a year ago. PSA now down from over 1300+ to <2 last 10 mos.

I couldn't get out of his office fast enough. Changed ins., found a wonderful MO to fill my team, discovered aPCa support groups, and my life continues.

Do the same...

2Dee

Hawk56 profile image
Hawk56

Some rules from my fight that I had for myself:

Don’t Walk In Cold to an Appointment. To make sure I do the best thing for my individual PCa, I need to educate myself.

Knowledge will empower my BS detector. When Dr. Thrasher and Dr. Emmott told me ADT is what I need 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.

I 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 carried it out, I never looked 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 took the time I needed, I always know that no matter the outcome of a particular choice, I made 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 on long life.

Ok, so what did I expect from my doctor:

1. Please know your stuff. As 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.

2. Please do your homework. I expect you to have reviewed my medical records prior to my appointment. You’ve looked at my x-rays; you have my pathology report; In the world of cancer care, every scrap of data must be scrutinized for its significance.

3. Please respect my point of view. Listen to all sides thoughtfully before reaching a conclusion. With patience and finesse, I’m sure you can help me to feel confident about the plan you have shaped for me.

4. Please be curious. Don’t 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.

5. When it’s decision time, please 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 don’t keep any secrets that might lead to regret. I want an oncologist who knows what’s best for me and doesn’t chicken out in difficult times.

6. Please 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.

7. Please 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.

GranPaSmurf profile image
GranPaSmurf

I can do this better

Thanks ALL for giving me some perspective.

After a few decades of mostly routine follow up doctor visits where I’m already familiar, I’ve lost sight of how to exchange information effectively. These days it’s even more vitally important.

Several years ago, I developed the habit of making notes ahead of time with the points I needed to cover. I use my smartphone – it’s seldom out of my hands anyway and easy to refer to. Now facing this diagnosis, it’s even more important to use this tool to optimize the ‘golden 15 minutes‘ we are usually limited to.

I like the idea of stating the expectations up front. This should clarify who is hiring whom. My Medicare may not be paying him much but that’s the deal he agreed to.

I have this sense of urgency. I have to be sure that doesn’t translate into immobilizing anxiety but rather into efficient planning. This is war. We have to nail down the strategy and work the tactics. I can’t shake that scene in the first Aliens movie. There’s an alien inside me; it’s kill or be killed.

Thanks all for bringing me back to the realization that I can’t take for granted the competence or the communication skills of the professionals. I AM THE ONLY ONE RESPONSIBLE FOR MY MEDICAL CARE.

I can do this better.

dadzone43 profile image
dadzone43

YUP. Sometimes you do not connect. It happens. Move on, unless you'd like to give him/her a second chance and start out by saying "I do not think we connected last time. This is what I noticed; ... " Might work; might not. As a physician myself, I have to defend my colleagues in that it is not always possible to review the chart first. I like to hear my patient's story first, get a sense of him/her and then look at the record later. You may have no idea of the demands on clinician time just to satisfy the electronic medical record and the clumsiness of the EMR when one tries to review. I am not defending lousy communication but I am asking that you consider whether you have walked in those moccasins yourself. I am very direct with my treating physicians and let them know when they have let me down in their communications/body language/lack of attention. Most will correct that because most want to do a good job. ALL started out wanting to do a good job. Some won't change and I have to change myself. I send them a letter telling them I am not coming back and very specifically why. Being a patient demands some discipline and patience; so does being a doc.

GranPaSmurf profile image
GranPaSmurf in reply to dadzone43

Thanks dadzone43, I've been in Para-medical positions for most of my working years. And my wife is also a Medical Technologist.

Yes, we've watched the increasing demands on physicians and even had friends who quit practicing rather than mastering the digital requirements.

Please don't think I was attacking the profession.

Even with the visit I recounted, I think we're on a mutually respectful level.

Thanks for the input.

My next visit with this young Medical School Professor will be much more satisfying for us both.

Oh my goodness yes! We saw three doctors before we selected one. The first doctor was god awful....no connection. The second doctor was very engaging and we had a great connection but our approach did not meld with his. He is a wonderful doctor and many people on this site see him. Our decision to go with the third doctor was based on his approach and connection. Some appointments I have higher expectations and am hoping for more. Then I realize that most of this is out of our control. The choices of treatment are somewhat limited. Every patient is different. So many variables. Educate yourself. I could not do this with my husband without this site and the wonderful people on it

God bless

j-o-h-n profile image
j-o-h-n

Walk in with a film crew.... that'll get his/her attention...

Good Luck, Good Health and Good humor.

j-o-h-n Wednesday 06/26/2019 6:52 PM DST

Barbara345 profile image
Barbara345

Hi, yes, pre-preparation is very helpful for you to do. However, if you are uncomfortable with the doctor, you still need to visiting another (or two or four more) if you can until you find the right fit. This needs to be someone you trust your life to ---

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