Thank you everybody - part 2

[skiingfiend]

Part 1 - healthunlocked.com/advanced...

So i drive 30 minutes to get to the clinic, spend 30 minutes, at the clinic, drive 30 minutes to get home.

I see the NP (who confers with the MO as needed before and after my visits).

1. They don't think it's cancer pain.

2. They don't know if I am having a bad reaction to Eligard, but don't think so.

3. They have agreed to switch the prescription from eligard to firmagon but only because I'm pushing it, so this is all on me.

4. They think it may be neuropathic pain.

5. If its not cancer pain its not their problem, if it gets worse go to emergency

6. I didn't get a firmagon injection but I do have an updated prescription.

7. Their preference is to wait 2 months before giving me the injection but I can start next week if I push for it.

8. I need to go out into the regular health care system to track this down, it is not something they coordinate.

Honestly, I am no better off after visiting them than I was before I went. Treating the pain is not their problem and my efforts to try and spur some action is viewed as me trying to dictate my own treatment and overridding the decisions of the MO. I'm viewed as some kind of a drama queen for trying to force them to collaborate with me to come up with an action plan to address this issue.

Based on all this, here is what I am going to do:

1. starting with my PCP explore the neuropathy angle.

2. the next time I get a major pain episode, check myself into emergency

3. delay firmagon for a month so I'm not overridding the judgement of the MO.

What I have accomplished:

1. put it on the radar that I may be having a bad reaction to eligard and got them to acknowledge that as a possibility.

[MoonRocket]

This is how I operate. It's why I continue to see the Urologist who performed RP, the RO who performed the RT, the MO who treats me now, the research MO who provides updates on ATM mutations, my PCP for DEXA scans, cholesterol, Blood pressure etc.

Now you have a real conundrum, what if the firmagon doesn't resolve the pain you're experiencing? Oh boy, this could be a candidate for a AITA thread.

[skiingfiend in reply to MoonRocket]

I requested to see the RO seperately but the MO is the care coordinator for PCa and I need a referral which I'm not gonna get.

[MoonRocket in reply to skiingfiend]

That sucks.

[skiingfiend in reply to MoonRocket]

They are giving me ulcers

I say I want to followup with the RO 1 year after treatment, they say you have to coordinate that thru us and we don't think its necessary.

I say I'm in all this pain and I want you to coordinate tracking it down, they say we don't coordinate that you're on your own.

Every day is a mystery just trying to figure out what they will do or won't do.

[MoonRocket in reply to skiingfiend]

Is all this at least free? I keep hearing everything is free in the Canadian Health Care system. If you needed to pay for this enjoyment, that'll be a kick in the shorts.

[skiingfiend in reply to MoonRocket]

Yes, no out of pocket. I'm in the process of writing another thread that looks at how patient stressors pop up in different places in US vs Canada that will be an extension of the idea I started here

healthunlocked.com/advanced....

[MoonRocket in reply to skiingfiend]

I still work so I have the employer provided POS (point of service) plan. It's high deductible so it qualifies for a HSA ( Health Care Savings Account). These accounts operate like a Roth IRA except the contributions are tax free as well. I put roughly 4300 year in, my max out of pocket for any given year is 3100 and my network of doctors is very large. I'm in Pennsylvania and my research MO is at MSK NY and the visit was in network.

The first 1500 of prescription is on me, then I pay 50 month for the Xtandi until I reach the 3100 then nothing. So my out of pocket normally ends around May or June each year and then it's NC for meds and visits afterwards.

My wife's company has an identical plan, so when I retire I'll switch to her plan until I reach Medicare age.

[j-o-h-n]

Chapter1.

Find out where they live, wear dark clothes, a ski mask (apparently you have plenty of them) wait for a moonless night, sneak up behind "him" and tap 'em on the shoulder and when he turns around say "Hi oh it's you doctor Smith, I'm so glad I ran into you on my way to the shooting range, I've been meaning to talk to you in person.....Blah Blah Blah.,,,,etc. Note: It may take some time waiting for the Doc to change his underwear. He'll get the point.....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 01/18/2024 6:03 PM EST