A whole bunch of crap happening and does it add up?

[SpencerBoy11]

I have been unhappy with my MO at Mayo Phoenix because she wouldn't order a PSA test for me 3 months after the last one I had. Asked for another MO and was told it would be approved one time and that I was showing disrespect for asking and needed respect training at Mayo. After several weeks I get a message from Mayo saying goodbye, that I was fixed and they wouldn't reply to any new messages from me! So without seeing me in person for 11 months they claim to have cured me and if I happened to need radiation in the future they they could do that. A one finger salute for them!

My PCP referred me to a prostate doctor in Tucson which is much closer to me.

The wellness check also revealed that I have anemia, something I figured from my blood tests and have been taking iron supplements. But now I have hemochromatosis (too much iron) along with anemia. Have an appointment with a hemotologist next week. Had been diagnosed with hypothyroidism about 3 years ago about a year before the PCa diagnosis. That and the ADT SEs seem to mask each other.

Think that at times our medical specialization prevents looking at the big picture. Or maybe it needs to start earlier.

Make sure you tell your doctors every thing you can think. Make a list of questions or symptoms. Thanks for letting me vent a bit.

[Kaliber]

great story, good advice. Getting booted happens more than people know.

I had a friend that was a doctorate in Asian language …. The front page of his pcp web site contained a couple of grammatical mistakes that drove him crazy when he read them. He mentioned it to his doctor when he went in once ( Richard could get rather abusive or abrasive about things like this ) …. and his pcp summarily kicked him to the curb and told him not to come back yayahahahaya ya.

❤️💪💪

[Billybob2]

I go to Mayo in Midwest. After finishing radiation and during 2 years of Eligard, I only had six month PSA tests, when I finished all that they only do six month PSA tests also. I went to another clinic for my 3 month alternate tests, and they do .xx results vs. <.1. As of November, I don't have to see her til next year December 2023, but have psa in May 2023. What's up? Thought it was only me

[Teufelshunde]

Just order your own. Ultalabtests.com. Blood taken at Quest. Not that expensive.

[Cooolone in reply to Teufelshunde]

Not all states allow self testing... NY being one! Utterly ridiculous in my opinion and frustrating as well. Here (NY) requires a doctor's script.

[swwags in reply to Cooolone]

But your doctor can order one for you. It's a test and not the doctor's business who pays for it (initially) so it could be up to you to appeal medical necessity if it was denied by insurance and maybe you have to deal with a grumpy doctor to help you appeal a denial on your behalf.

[Cooolone in reply to swwags]

Yes, doctor can provide the script of course. But if you want to self monitor, let's say above and beyond SOC, say monthly instead of 10-12 week PSA then you got to request it. If doing BAT let's say and you want that frequency then you have to request it. As noted above, many doctors don't participate in Patient directed care!

[SpencerBoy11 in reply to Teufelshunde]

Yes, I used them to relieve my mind while traveling all summer regarding the PSA test. It was $80. Got the advice here on this wonderful site.

[Teufelshunde in reply to SpencerBoy11]

Down to about $50 now with the 10% of they usually give everyone. Before I got on Medicare, with my high deductible plan, could be cheaper to pay myself than run thru insurance. And the docs think they had to have a reason to order a certain test. THe reason that patient wants it should be good enough.

[Jancapper in reply to Teufelshunde]

I am a trained nuclear pharmacist and worked in the industry for 33 years, yet I had no idea about this. Very cool. Thanks.

[Cooolone]

Shocking that a patient would be treated that way, and totally unacceptable! Only choice would then to be to move on. Sad... But probably better in the long run anyways!

[lewicki]

If the doctor orders to many tests does he get less money from Medicare, medicare supplement and part D prescription drugs insurance? Wondered how they are paid.

[Teacherdude72 in reply to lewicki]

Where did you get that from? I find that hard to believe!

My Onco has my tests listed as quarterly but added on demand. I go monthly for 6 tests and visits. The techs know me when I go in and fill out my paperwork for me. I see the Onco doc every 3 month and no other months. My Choice!

[lewicki in reply to Teacherdude72]

Just wondering.

[Teacherdude72 in reply to lewicki]

From what my pc tells me....she is paid only for patient contact or video visits.

[Teufelshunde in reply to lewicki]

The concept you talk about is how HMO's work and why they are cheap and should be avoided. Incentives are wrong for Dr. They get fixed $$ per patient per year. That is not how Medicare works. I have a supplement and not advantage plan, which to me seem more like HMO's and have less free choice, but are cheaper.

[SpencerBoy11]

Well, that is what happened. I spent 5 months traveling the USA(8100 miles and 20 states to visit family, friends and get my DL renewed in SD, but you probably wouldn't believe that either) and was able to get my 6 mos Eligard shot at Mayo Rochester, but Mayo Phoenix wouldn't request the PSA test too. I don't know how to get my messages from their patient portal at Phoenix or I would happily post them here.

[cancerfox]

I get a PSA test every 6 months at my urologist, and another one every 6 months at my general practitioner during regular checkups. I space the appointments so that I end up getting a PSA test every 3 months, paid for by my insurance.

[SpencerBoy11]

Most of my limited PCa knowledge I have gained here and the Prostate Cancer Foundation. I think at a minimum you should have a PSA test every 3 months. Things change very quickly. Sometimes you worry about nothing; sometimes catch a bad trend in time; sometimes you don't get the information in time. We are the patients. We need to have our voices heard. We aren't just numbers.

[Yadifan in reply to SpencerBoy11]

We had a bad experience with Mayo in Phoenix also. This was our first stop after getting our diagnosis thinking that this place was the best of the best. We're currently at Banner in Glendale. So grateful for our MO there and his staff. Hoping you receive the care you deserve and need. There are caring and competent providers out there that will advocate for you.

[Hidden]

I am in AZ too and I second that notion of paying out of pocket.

I haven't needed to escalate beyond my urologist but I wouldn't lean towards Mayo if I needed an MO. Too much SOC / stay in your lane approach from the many comments that agree with yours and they didn't offer the treatment I eventually selected -- HIFU. That was six years ago. Just checked -- now they do -- at Rochester.

mayoclinic.org/medical-prof...

Maybe Mayo's endorsement will quiet the guy on this site who is a rabid critic of HIFU (without any personal experience of it himself). You can guess who that is.

[SpencerBoy11]

Have an appointment after the 1st of the year in Tucson for a highly recommended doctor.

[lewicki]

I think that doctors can be very over paid and ineffective in their practice. They are to interested in other things that take up their time than what they are hired for. For instance while I was on ADT I did not get a bone infusion. Hmmm, mal- practice?