Who directs treatment plan?

[GJ65]

My husband has stage 3b with 1 lymph node involved. He is going to have radiation for increasing PSA. His urologist has been directing his care. Is this the norm?

[mrscruffy]

I would be seeing an Oncologist specializing in PC if it were me

[DarkEnergy in reply to mrscruffy]

I second that!

[RS265 in reply to mrscruffy]

Totally agree. My Uro recognized I needed an oncologist and gave me a choice of MOs based on their orientation. Glad of my choice as my MO now says he is my consultant and expects me to put forward a proposed treatment plan at each meeting. The result is an informed decision.

[Tall_Allen]

Yes, whole pelvic radiation + a boost to the prostate + hormone therapy for 2 years is the standard of care. There is a clinical trial for men with his diagnosis. It sorts men by their Decipher score and randomizes some to get Erleada too. He may be able to get in that trial:

clinicaltrials.gov/ct2/show...

[Magnus1964]

Yes, the urologist is usually the one. He will direct him to radiation or other specialists for treatment.

[DarkEnergy in reply to Magnus1964]

Well, it depends, I didn't follow my surgeon urologist's treatment suggestion. Can you guess the treatment plan?

Instead got radiation treatment, was impressed with the targeted technology advancements.

I would seek an oncologist's advice...

[DarkEnergy]

That's the best strategy: "...Lead the team", even when you have to replace them.

[MateoBeach]

Urologists are surgeons. They do the surgery. When you are moving on to radiation and medical management you should move primary role to an MO and an RO. I would (and have long ago) thank my urologist, and absent a surgical complication requiring management, move on.

[Quick2019]

I agree with team plan.

[HopingForTheBest1]

You are the one who will ultimately decide your treatment plan, with expert guidance from your experienced genitourinary medical oncologist from a major cancer center. You definitely need to research as much as possible about what standard of care (SOC) options you have available to you, as well as possible clinical trials to consider.

[dadzone43]

The norm here in Providence RI is a team of RO, MO and Uro to advise initial treatment. Then it filters down to one. In my case the MO. If eventually I needed radiation, the RO would step back in.

[SteveTheJ]

Would you see a proctologist for lung issues or a nephrologist for seizures? No, a medical oncologist is what you want.

I too started with the oncologist. He diagnosed the cancer with few clues and I was very grateful to him for that. He recommended an oncologist but had someone on staff who he said could help me.

I talked with the urologist's guy but dismissed what he said out of hand. He wanted me to start chemotherapy right away long with one of those bone-strengthening infusions that I had heard had nasty side effects.

After talking with a total of three oncologists, I chose the one at MD Anderson because they have by far the most resources available and the oncologist is very bright, plugged in to research, and extremely personable.

Good luck with your decision?

[EdBar]

IMO Once your diagnosed it’s time to move on to an oncologist who specializes in prostate cancer. Most urologist will try to retain you as their patient for financial reasons. The oncologist can coordinate with the urologist if any services/procedures going forward require his expertise. It’s important to find an oncologist who specializes in prostate cancer and stays up to date on current treatments.

Ed

[ShipModeler]

I have stage 4 - Gleason 8 with a few lymph nodes involved. I am being given Lupron, administered by a Urologist. Zytiga and Prednisone prescribed by my Oncologist and twenty-eight EBRT's that were administered by a Radiation Oncologist.

It was my Oncologist who ordered and oversees all of the care I have received from the the beginning to date. They are experts at managing cancer treatment.

[j-o-h-n]

Greetings GJ65,

Would you please be kind enough to tell us your bio. Age? Location? When Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)?

ALL INFO IS VOLUNTARY, but it helps us help you and helps us too. When you respond, you might want to copy and paste it in your home page for your use and for other members’ reference.

Note: Answers are for your benefit, not mine.

THANK YOU AND KEEP POSTING!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 05/23/2022 10:18 AM DST

[Hidden]

I can only relate what I did in 2003. Once I was DXd with PCa, I had to make a decision whether to have my long term Urologist remove the prostate or seek radiation through a Radiation Oncologist. I chose a Radiation Oncologist who at the time had fine 2500 Brachytherapy procedures. The plan was Brachytherapy and then with a different Radiation Oncologist to do the 25 sessions of IMRT - all part of my primary treatment, Once I developed two metastatic lesions to my spine, both recommended that I do what they would do if they were in my shoes, seek a Medical Oncologist that specialized in Genitourologic Cancers - Prostate Cancer. Both would want someone who was at the top of their game; specializing in these type of cancers and not one who spent their time treating other cancers like Lung, Pancreas, etc. I was referred in 20O4, and haven’t looked back. I was most fortunate that one who was newly diagnosed with Stage 4 metastatic prostate cancer and enrolled in his clinical trial of chemotherapy with hormone therapy. My guy was a true specialist doing research in an academia setting. Admittedly a rare guy, a Professor at a major medical school.

I am fortunate that I live in the Houston area and had ready access to the what I felt is the brightest and best in the world. The Texas Medical Center with MD Anderson, Hermann Memorial, Methodist, St Luke’s, Baylor, University of Texas, McGovern, Weill-Cornell, Texas A& M, etc.

My guy was at Baylor College of Medicine and had clinic out of Methodist. He had previously been at MD Anderson. When Baylor stopped their arrangement with Methodist, my guy moved on to McGovern Medical School and Hermann Memorial. Today, Baylor is associated with St Luke’s, Weill-Cornell with Methodist, McGovern with Hermann Memorial and MD Anderson. When my guy moved from Baylor/Methodist to McGovern/ Hermann Memorial, I moved with him.

Best advice from a guy who is decidedly biased...... Ask your guy about micro-metastasis and how he treats. Research the topic so that you are conversant and understand. If you able, go for the cure rather than palliative treatment. Who knows, you may be in that very small percentile of success. I am not knocking the current palliative treatment route, great strides have been made in research to extend life; in many cases, decades; nor am I knocking those who seek other alternative means. However, the greater percentage of metastatic prostate cancer patients, do not have a scientific background that is smarter than a person who has spent a long career in specific research in terms of knowledge and skills to fight this bastard disease.

Thoreau is quoted as, “There are a thousand hacking at the branches of evil to one who is striking at the root.” I wish you the best in life. Keep killing the little bastards.

Gourd Dancer

[Don_1213]

I'll have to agree with the others who suggested that you (or a loved one) become the team leader. Urologists are often put in the position of managing PCa care since they're most frequently the MD's who find and diagnose the cancer, and the patient just hangs with them. That's not always to the patient's best interest. Urologists who don't specialize in PCa often are not informed about current trials, successful treatments that aren't "standard of care" or new treatments that don't involve surgery.

A medical oncologist, especially one who specializes in PCa is much more likely to provide a balanced opinion on treatment options. Even better if they're plugged into research - they may have suggestions for newer treatments based on preliminary results they've heard about through colleagues.

A radiation oncologist again has a somewhat focused viewpoint of PCa treatment, and will probably know about the current state of the art for radiation treatments, but depending on the institute he's associated with my have a somewhat biased opinion on what you should have for treatment.

So - who does that leave to sort through the choices? It's pretty much up to you unless you want to go to a facility where they put together the team and the team makes the decisions (the MSK/Mayo/Hopkins pattern.) That's not a bad solution, but your choice of who actually treats you is limited to their staff, and my personal experience was it was more difficult to communicate with the individuals in the group than if I picked my own group.

S0 my experience was that MSK's model didn't work for me (it might be fine for you).

I ended up seeking recommendations from a local PCa support group who suggested a doctor in NYC who is a leading medical oncologist/researcher. He took me on as a patient, and we've had an outstanding relationship since then.

I found a radiation oncologist due to a recommendation from a very good friend (had dinner with him and his wife last night actually) who is a radiation technician (the guys who actually DO the treatments.) The RO is excellent, very communicative, very upbeat, and very up on the latest treatments.

The choice of a urologist has been more vexing. The one who diagnosed me was probably an excellent MD, with a mediocre bedside manner (he never seemed to listen, he was always pecking away at this laptop as we talked) and awful office staff. The office staff eventually drove me away with forgotten appointments and waits for a visit for over 3 hours - things that shouldn't happen. My second urologist - a younger guy, head of the urology department at a local community hospital - seemed more attentive but somewhat overconfident. His attention was good initially, less so with an ongoing relationship, and his overconfidence has caused side effects that I'm still dealing with.

My final and current urologist is someone my medical oncologist suggested - who is another one of the top guys in the US, head of a major NYC university medical center urology department, a very well-known researcher, and someone who treats MANY men with PCa (and bladder cancer) annually. My interaction/treatment with him has been limited, but an excellent experience.

So that's what I did to organize my own "team" - the biggest thing to look for in picking team members is - communications (do they respond to emails? Can you communicate with them without feeling they're talking down to you?) and obviously expertise. Do they treat a lot of PCa?

If you're not comfortable taking that much responsibility for your treatment I'd really suggest you contact a well-known cancer center that uses the "team" approach to manage your treatment. If you do decide to create your own team, plan to spend a bit of time right here - one of the best sources for PCa treatment information you'll find. You'll need that information going forward directing the team in your treatment.

Good luck!

[tad4]

You usually have a team consisting of a Urologist and a Radiation Oncologist and they are both involved with your treatment. In some cases there is a Medical Oncologist also part of the team. Collaboration is the key. Good luck.

[john4803]

In the SSM Health system, here in the St. Louis region, I have a radiation oncologist for radiation advice and a medical oncologist for any medical decisions. They are in the same building and can easily confer on my treatments.

[pcs4101]

i would agree with the other responses. You have to be your own advocate! I saw a uro for the diagnosis then went to a MO for 2nd opinion and subsequently move to the MO for my primary care and then brought in a RO for proton beam radiation. Every step of the way I tried to educate myself and act as the "project manager". As a result I understood everything in my treatment.