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Posted 1/8/2022 4:17 PM (GMT 0)
Several months before my treatments I developed PAD in my lower legs. My initial SE was my right foot was always cold to the touch. I was seen by both a vascular and cardio doctor. My Cardio did several tests which resulted in a clean bill of health for my heart. I read many posts here of those that are working with an oncologist. I know this is because of the severity of the PC they have. After reading the article on ADT and the effects on the heart, why did my RO say I didn’t need one? I am a GL-8 and It seems I am the one that is doing all the back and forth calling between all my docs to coordinate my journey. Does the oncologist act as the go between to help out? My wife who recently had a lumpectomy, radiation and hormone treatment for contained cancer, was immediately directed to an oncologist upon DX. She called my wife on a regular basis to direct her treatments. Do I have to wait for my PC to get worse before an Oncologist steps in? Not worried, just tired of trying to coordinate this on my own. Sorry, so long a post.
Jack
Posted 1/8/2022 5:05 PM (GMT 0)
Jack,
I'm thinking you are wondering why you don't have a medical oncologist (MO) on board? You are still undergoing primary treatment with curative intent. Patients normally don't see an MO until "curative" treatments fail, and then the MO mostly manages the palliative treatment of the PCa. There can be overlap in the services of Uros, ROs, and MOs, but the MO usually doesn't enter the scene until later in treatment.

Not sure if this answers your question.
Posted 1/8/2022 5:45 PM (GMT 0)
Jack - It is male/female thing. Women have gynecologists as well. My wife had an oncologist for 10 years in addition to her other doctors after breast cancer then was released. They all seemed to work together. Men tend to shy away from the doctors until later in life or something is really wrong and painful. Heck, if you are feeling ok, why waste time with a blood test?

I am not so sure the cardiologist or oncologist is best for this type of thing unless they have read the same papers. The important part is for you to print out the paper and discuss with doctors at your visits. It really a matter of monitoring things which any of your doctors can order. Many may not think it is a issue with a short course of ADT vs a lifetime of treatment. I know if I present something to my doctor, he will usually order the tests unless it is a stupid thought on my part. So far since this PCa journey started, I have found no substitute for doing my own diligence on all medical matters. Since I don't need approval for specialists with original Medicare, I just go to one when I think I need to. The key is me knowing when I should and should not go which is not so easy.
Posted 1/8/2022 6:34 PM (GMT 0)

mattam said...
You are still undergoing primary treatment with curative intent. Patients normally don't see an MO until "curative" treatments fail, and then the MO mostly manages the palliative treatment of the PCa.

When I was starting my treatment plan (definitely with curative intent), my RO sent me to a Uro (to place fiducials) and a MO (to prescribe the ADT). I have not seen the Uro since then, but have been having regular follow-ups with both RO & MO. My next visits with both are in Feb, I will have to ask how long they intend to follow me, assuming the treatment is completely successful. Since my treatment was a Phase 1 clinical trial, I am sure the RO is following me for at least 2 years (the measured period defined in the trial).
Posted 1/8/2022 7:26 PM (GMT 0)
I agree that it's not at all common for most guys with curative intent not to have moved onto an MO yet. That said, I began by working with an MO at Prostate Oncology Specialists and he was fantastic at coordinating all my care. My wife and I always referred to him as the QB of the treatment team. He even was my de facto GP during the 18 months of my ADT. (Probably a bit longer than that, in reality.)

They have an unusual business/medical model and unlike most MOs--all they treat do is prostate cancer. But it immensely helped me in my journey.
Posted 1/8/2022 7:50 PM (GMT 0)
Have you completed your radiation? At the present, there probably isn’t anything for a medical oncologist to actually do as you are on ADT. If, after completing radiation, your PSA starts going up, that could signal that your disease is systemic and possibly refractive and it would be time for an medical oncologist. If your PSA goes down to an acceptable level and stays there after your course of ADT runs, then it would show the initial treatment was effective and no need at that time for a medical oncologist.

Given your high risk dx, it would be good to research medical oncologists and even interview several to get assessments and determine who you might want to work with in the future, should you need to. In doing your research, focus on oncologists that specialize in PCa. As it is a hormonal cancer, some treat mainly breast cancer and prostate cancer. There are a very few that only treat PCa like Schulz and Lam; and Sartor at Tulane. When I was diagnosed my wife was being treated for breast cancer. Her medical oncologist specialized with BCa and PCa so I consulted him. He was satisfied with my initial treatment plan and the doctors I was using. He said to come back if the initial treatment failed. Though I never went back to him, I at least had established a relationship if I needed it.
Posted 1/8/2022 8:18 PM (GMT 0)
Thanks all for the replies. I think after reading the article on ADT and heart problems, my first concern was that now that I have three doctors, an oncologist or some kind of patient representative would be helpful. Not so much as to the PC alone concern, but more of a coordination between all three. Right now as I said before I am doing all the calling. Also, since I have finished my radiation treatments my RO wants a PSA test in February. My URO will want blood work for the effects of the ADT and the Cardio will want to monitor my cholesterol and HDL. I know I can get them all done in one shot, but they each have different time frames for the tests to happen. It would be nice to have a coordinator to help me. Thanks again for the replies.
Jack
Posted 1/8/2022 10:16 PM (GMT 0)
Unless you hire a patient advocate/representative/assistant (if you can find such a person) don’t expect a medical oncologist to be a coordinator for you. They are highly specialized in the treatment of cancer.

You might interview some concierge practices to see if they provide such a service, but it will come at a significant cost. And the doctor doing such coordinating had better know you very well to determine what is to be coordinated. As far as the testing, just figure out what each specialist wants and just do one comprehensive panel and then share the results with each specialist. Your GP or a concierge practice could coordinate this. As an example, my uro does the PSA test and shares the results with my GP so it is in my master record.
Posted 1/9/2022 3:23 AM (GMT 0)
Jack 64, (looks like that was you age at DX? just wondering) So you might be 71 now, Congrats by the way.
I have no problem having a GP, a Heart specialist, and a MO, but I share info with all and they all give me solid advice and treatments. All three are just as important as the rest, but with Stage 4, maybe my MO is bit more important.
Just my humble opinion, maybe it appears I might minority here but that's why we are all here , for advice, opinions and comments and other things, but none of us are Doctors, none of us are real experts as a MO would be.

So my advice, and I have been here a while and heard a lot and have a personal strong feeling, Yes, seek the best Medical Oncologist that you are most comfortable with..NOW.
Winging it
Posted 1/9/2022 8:35 AM (GMT 0)
Call your PCPand get a referral to HEM/ONC. Very reasonable request.
Good Luck.
Hero
Posted 1/9/2022 6:42 PM (GMT 0)
I on the other hand prefer to be my own contractor...as in today's paradigm...their staff and a lot of times the doctors themselves suffer from cubicula isolation syndrome...who better to run the business of Logoslidat than logo,,,its logical...I'm not saying I know everything,,,but I am smart...arguably...and will not pretend that I am not...out of pretentious humility...puh-lease do not pull out the client as his own layer schtick...I would outlawyer the lawyer and the judge...and have a fair to middling shot at the bailiff...humility swallows itself in false hubris...chew on that for a while...try not to miss the spittoon...
Posted 1/10/2022 2:31 PM (GMT 0)
I've never had a "team" that I could perceive.
Urologist did it all, except for scheduling radiation.
First Onco didn't ever seem to talk to anyone.
Second Onco, not aggressive and didn't know about my genetic results even though he did the referral, even though they were posted on the hospitals MyChart. So, apparently he doesn't talk to the geneticist either.

Eastern Kansas, where oh where is an Oasis of Oncology where they are team minded?
Posted 1/10/2022 4:15 PM (GMT 0)
Alephnull, as per my initial post, I believe Mumbo said it correctly, it must be a male/female thing. I was wondering why my wife breezed through all her treatments without lifting the phone. Her oncologist coordinated all of her appointments. Her DX was a very small contained tumor of the breast. So, lumpectomy, radiation, and ADT. When I called my cardiologist today, he didn’t know I was on Orgovyx, even though the report was sent his way when I first started the treatment. Waiting on an answer from my health insurance. My best to you.
Jack
Posted 1/10/2022 11:44 PM (GMT 0)
You (Jack64) should be the captain of your own ship but eager to listen to your shipmates for guidance.

Post Edited (Sr Sailor) : 1/10/2022 4:56:59 PM (GMT-7)

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