Urologist, Oncologist, Hematologist - who is in charge of my case?

@geneva26
My physicians are all related to the same hospital as well. Fortunately, I’ve got pretty good choices in my oncologist couldn’t be better. Take advantage of the ones that you need the most likely oncologist.

Just before I started radiation therapy for a local relapse, I asked my RO who the team captain was. Her reply was, “You are”. We established a relationship of mutual respect right there. I also consider my PCP as part of the team and keep him looped in. My PCP, RO, and urologist are all in different practices, so between appointments, I communicate with them with messaging apps on my various patient portals. As a practical matter, my RO is guiding most of my care at the moment, but I keep everyone up to speed and solicit their thoughts and feedback, and make sure everyone is on the same page. I like it this way, and feel like I have a collaborative relationship with all my docs.

@jeffmarc that is good to know. I always thought that the urologist was the head of the team and was sort of above the others, even though they may be doing their specific part. I can see I probably viewed that wrong. Thanks.

Interesting discussion. I too have struggled to find any coordination. My urologist is on point with prescriptions and diagnosis and he directed me to their radiologist who has advanced technology and only does prostrate cancer treatments. My oncologist is a neighbor who is highly regarded and who uniquely told me he has only seen 10-12 years survival similar diagnosis. My urologist was not happy with my oncologist and said the new treatments completely change life expectancy, giving me more hope. I did visit Mayo Jacksonville and they were extremely impressive at every interaction during my request for a 2nd opinion, but they complemented my urologist diagnosis and treatment plan and said they would do the same. I continue to consider changing to Mayo, a 3 hour drive from me in Tampa.

@bobgolf From my experience the one in charge is the one providing your care. In the end you are in charge. Doctors love old compliant head nodders that don't ask questions and just do what they are told. They can move them out in 10-minute appointments and stay on schedule. And yes, after 4 years I have become a cynic. I have a low opinion of private practice.

I'm with @melvinw

In a perfect world perhaps the oncologist would take. Garage and do the coordination with the radiologist and urologist, cardiologist, pulmonic...

Alas, we live in an imperfect world, especially our health care system...

You are the team captain, quarterback....

Like any team, it is made up members who have specific responsibilities based on position, training, education, skill sets...I mean, you don't want your oncologist planning and delivering your radiation treatment.

Each of your team is responsible for cross talking about the treatment decision you have made with their input.

But, don't expect miracles. When I was doing chemotherapy my urologist's office called asking if I could come in that afternoon instead of the next day for my Lupron shot as he had a schedule change (tee time I'm guessing). I said, ordinarily I would do so but I'm sitting in the infusion chair and it will be awhile.

When my oncologist was concerned about the interaction of the ADT and ARI drugs with my Eliquis, guess who had to call my cardiologist...!?

Mayo certainly didn't dial up my local medical team to talk about executing triplet therapy.

That's not to say there aren't doctors who say "I got this..."

In my 12+ years I haven't found one. In part that may be a culture of deferring to a fellow professional's "expertise." Whereas when I ask, they respond because I'm the patient and they know I expect their professional answer.

That's not to say members of my medical team don't "talk" to each other. But, they are in the same practice, same building, I mean literally, same hallway, three doors apart!...

Kevin

Fortunately or unfortunately, we're not alone...or are we? When I started this process, I really wanted a treatment "coach," but saying that to a specialist elicits a response like when you talk to your dog and it turns its head. I am being treated by a team of generic specialists who office in the same building and share responsibility for my care: urologist, radiation oncologist, and medical oncologist. They're competent and the cancer is being controlled, but what I really wanted is someone to help me coordinate ADT, radiation, nutrition, exercise, and emotional effects of treatments and side effects. That's a unicorn, I guess. So I, like you, do research and learn from people like @jeffmarc and others here and in other online and in-person support groups (including http://www.pcri.org, imerman angels, ancan, zero cancer, PAN, PCF...), then take information back to my cancer specialists and to my PCP, cardiologist, and gastroenterologist to make adjustments as necessary. These support groups are my real lifeline.

I do everything in-house at the cancer center where I was treated, even something as routine as getting my PSA’s done, even though they’re 60 miles away, because I want to avoid any of those delays getting results transferred up, etc.

Even though I’m at a COE, I don’t really have a “team” outside of the surgeon’s office. I don’t have an MO, for example. That may be because I ended up there sort of through a side door, so to speak - my surgeon there happens to be my local urologist’s urologist, so when my local guy said, “I want you to go up to the big cancer center,” he picked up his phone, texted the surgeon directly, and the surgeon acknowledged it right there and had his scheduler give me a call the following day.

Once I was diagnosed, all my urology care transferred to the surgeon at the COE. I don’t see my local guy any longer.

The surgeon was even the one who went over hormone-radiation treatment as an option with me, though it had been prepared by that department, not his. His team found me a local PT person, set up my appointment with the in-house ED clinic, etc.

@jime51
“ I really wanted is someone to help me coordinate ADT, radiation, nutrition, exercise, and emotional effects of treatments and side effects”

That is a real wide range of issues. Doctors just aren’t trained to handle all those different things. That’s why they have a wide range of people that handle emotional problems. Why they have specialist that do nutrition and exercise.

A GU Oncologist can refer you to a radiation oncologist or a urologist, But they don’t specialize in those areas. They can refer you to other people as well that are experts in the other Fields you’re wanting help in.

I guess it’s a tough If you want someone to do everything, What you do want is somebody that’s an expert in prostate cancer and can handle all of the aspects of your treatment for that. There is always so much going on, so many changes, so many new things, somebody has to keep up with that.

Yeah, even being treated at a cancer center of excellence it's not always clear to me who's in charge of the so called "team". I believe the team is more of a marketing ploy. I'd like to think the "team" would discuss our case and debate the best course of action, but in reality I doubt this happens anywhere. I asked my RO when going through treatment who's in charge of the team? She rolled her eyes and said I am right now. I agree with Jeff1963. Most of us "average patients" struggle with making the best decisions for our particular cases. At the renowned institution I'm going to I've found that the doctors there mostly like to keep to standard protocols of the institution. That said, we are ultimately responsible and should at least attempt to educate ourselves about options and ask lots of questions before committing to any treatment.