Dealing with never-ending doctor visits

Posted by scottbeammeup @scottbeammeup, Jan 21 2:20pm

In short, I am SICK of endless doctor visits. It seems my entire life has become gym, work, time off work to go to some doctor or other, work into the night to make up time lost to doctor visits.

I thought that with the end of my treatment I'd only have three month follow ups but, while my PSA is good and my testosterone is returning, my red and white blood cell counts have dropped a lot. My GP feels it's a late side effect of radiation. Oncologist is a bit more squirrely about it.

Regardless, I ended up in the hospital over the long weekend, completely ruining it, because I went into Afib which wouldn't stop, and which apparently can be triggered by anemia. So, now they scheduled me to see a hematologist, a cardiologist, a cardiology nurse for a stress test, a cardiac electrophysiologist, and they want me to take a heart medication that, of course, requires liver tests every three months and is likely to trigger something else that will require yet another doctor. My GP also wants to rerun bloodwork plus I'm due soon for another post-PC PSA test and now the eye doctor and dentist are calling for my normal visits.

Anyway, not really asking anything here, just going on a bit of a rant. Maybe I can add in a psychiatrist to get some meds to calm me down about all the other doctor visits?

I envisioned getting older as peacefully sitting under a tree reading a book, taking the time to cook a nice meal to share with family and friends, while birds chirped outside my window and neighbors waved as they walked by. I guess it's not really going to be like that.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

About 10 years ago I started not feeling a well a lot. Every couple of months there was something new; back pain, BPH, lots of trips to the bathroom and doctor's office. 5 Years ago I was diagnosed with stage 5 advanced prostate cancer and introduced to an oncologist, radiation oncologist, and a cancer team, all helpful, but something was a miss. After a year of aPC living hell we moved to a different smaller community. I had the opportunity to rebuild my cancer team. My cancer journey had taught me I value conversation and likableness in my cancer care providers. My new cancer team is wonderful and build on those two values conversation/likableness. Yes, I go to a lot of medical office appointment, but they're predominately with people I like and have meaningful aPC conversations with.

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@jeffmarc

Was the drug they gave her Metoprolol? I am a little puzzled by What you wrote about cardioversion. They don’t let you go two or three weeks Staying on afib. Normally, they cardiovert it the first day.. do you mean the Afib kept coming back?

Over a year ago, I was in the hospital for four days with afib. They couldn’t Cardiovert me because my PCP had given me an antibiotic that had a four day half-life and screwed up the electrical charges in your heart. They did try to Cardiovert me the first day, and it didn’t work. On the third day gave me metoprolol and within about an hour the afib stopped.

Since then, I’ve spoken to a retired cardiologist friend and he told me he takes metoprolol whenever he feels his heart speeding up, Or if he’s under stress, Because it prevents afib, for him.

I had my doctor switch me from Coreg to Metropolol and it has resolved my heart rate rising unexpectedly and hopefully he prevents the next afib event.

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I take low dose Metoprolol (25 mg) to keep paroxysmal Afib at bay but once or twice a year it pops up. When that happens, I take an emergency dose of 50 mg. That had always worked in the past, but this time it didn't. I also have gotten Afib from anxiety. When I was diagnosed with prostate cancer I went into Afib four times in one week just from being at such a high anxiety level.

Now they want me to see an electrophysiologist and possibly do an ablation. It seems East Coast doctors are much more aggressive than when I lived on the West Coast. The couple times this happened when I lived in California they just gave me propofol, cardioverted me, and sent me on my way two hours later. Here, they want all sorts of tests and followup.

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@heavyphil

Hey Scott, Hear ya loud and clear! Just finished reading an article this AM by a hospice nurse who said that her dying patients’ greatest regret was that they never appreciated their health! But isn’t that the truth??
Many of us are on drugs we can’t even pronounce or have conditions we never heard of - let alone the “specialists” who only treat THAT disease…WTF??
But this is just another bump along the way, OK? Your Afib could be caused by a variety of things, not just anemia. And to say that it is caused by 5 sessions of targeted SBRT is ridiculous, IMO. You need a LOT of whole body exposure - or certainly more than that targeted to something as small as a prostate - to get anemia.
You might have low iron too, which is very common as we age, or low B12 levels. Hopefully this array of MDs will figure it out.
On a personal note, my wife consistently runs very high Potassium levels on her bloodwork. Her MD finally sent her to a kidney specialist who ran all kinds of blood and urine tests - even collecting all her urine in a 24 hr period. Guess what he found? NOTHING! He told her she was fine and simply ran high potassium. Duh??
So do what you gotta do, don’t get frustrated and remember that all those waiting rooms are filled with people just like you who would rather be gardening, playing pickleball or eating a bucket of Chicken Wings with a couple of beers…hang in there, bud..,

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I (hopefully) can help with the potassium thing. My doctor called telling me my potassium was off the charts. I didn't believe it as I had no symptoms but agreed to a retest. The phlebotomist told me that, when testing for potassium, using a tourniquet before drawing blood causes the results to skew high since some blood vessels burst, releasing potassium. Sure enough, when my blood was taken without a tourniquet my potassium was totally normal.

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@scottbeammeup

I take low dose Metoprolol (25 mg) to keep paroxysmal Afib at bay but once or twice a year it pops up. When that happens, I take an emergency dose of 50 mg. That had always worked in the past, but this time it didn't. I also have gotten Afib from anxiety. When I was diagnosed with prostate cancer I went into Afib four times in one week just from being at such a high anxiety level.

Now they want me to see an electrophysiologist and possibly do an ablation. It seems East Coast doctors are much more aggressive than when I lived on the West Coast. The couple times this happened when I lived in California they just gave me propofol, cardioverted me, and sent me on my way two hours later. Here, they want all sorts of tests and followup.

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They have offered me ablation, but I seem to have it under control now. I know ablation doesn’t last forever, but it is a future possibility. Your experiences (50mg) give me ideas if I have it happen again. I do live in California. .

Cardioversion worked most times but I spent 4 days in the hospital with afib after my pcp gave me an antibiotic that screws up the electrical system and has an 80 hour half-life. Cardioversion didn’t work with that in my system.

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@scottbeammeup

I (hopefully) can help with the potassium thing. My doctor called telling me my potassium was off the charts. I didn't believe it as I had no symptoms but agreed to a retest. The phlebotomist told me that, when testing for potassium, using a tourniquet before drawing blood causes the results to skew high since some blood vessels burst, releasing potassium. Sure enough, when my blood was taken without a tourniquet my potassium was totally normal.

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WOW!! The only explanation ever given was that the RBC’s hydrolyzed in the vial in transit - like every freakin time??
The question is where are gonna find a phlebotomist who’s not gonna use the tourniquet? I mean, I’ll ask about it but they’ll probably stick the needle clean thru my arm just to say told’ya so! 😆Many thanks, bud!
Phil

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Speaking of doctor visits, I have another one today — a bone density scan to establish a baseline, so that we can tell if I'm losing bone mass on ADT a few years from now.

Yep, we have lots of medical visits with prostate cancer. But also, it's a nice winter day and an easy transit ride to the hospital, where all I have to do is flash my OHIP card at the check-in desk, so it's not really a hassle — I try never to forget how lucky I am to have been born in a rich country with good healthcare (like many others here).

And I'll take myself out for tea after, because I always like to combine a treat with my visits to keep me in a positive frame of mind. 🙂

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@northoftheborder

Speaking of doctor visits, I have another one today — a bone density scan to establish a baseline, so that we can tell if I'm losing bone mass on ADT a few years from now.

Yep, we have lots of medical visits with prostate cancer. But also, it's a nice winter day and an easy transit ride to the hospital, where all I have to do is flash my OHIP card at the check-in desk, so it's not really a hassle — I try never to forget how lucky I am to have been born in a rich country with good healthcare (like many others here).

And I'll take myself out for tea after, because I always like to combine a treat with my visits to keep me in a positive frame of mind. 🙂

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Yes, when I have doctor appointments in New York City I always go at least three hours early so I can walk around, check out some new places, etc. It makes the doctor appointments more tolerable--just a small stop on a day's adventure in the city. Unfortunately, only my major doctors are in NYC, the day to day and blood draws are all done in the suburban satellite office where the wait for a blood draw can sometimes be an hour or more.

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@northoftheborder

Speaking of doctor visits, I have another one today — a bone density scan to establish a baseline, so that we can tell if I'm losing bone mass on ADT a few years from now.

Yep, we have lots of medical visits with prostate cancer. But also, it's a nice winter day and an easy transit ride to the hospital, where all I have to do is flash my OHIP card at the check-in desk, so it's not really a hassle — I try never to forget how lucky I am to have been born in a rich country with good healthcare (like many others here).

And I'll take myself out for tea after, because I always like to combine a treat with my visits to keep me in a positive frame of mind. 🙂

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Well, that was easy. 90 minutes from when I left the house to when I got back home (less than a 5 min wait at the hospital) — so just a single transit fare — and my bone-density test result popped online while I was still riding the train home.

As far as I can interpret it, I've experienced some bone-density loss after nearly 3½ years on ADT and Erleada, but not too much — my risk of fracture in the next 10 years is still graded "low" (< 10%). I guess that's the most I could hope for as an ADT lifer. I'll stick with the weight training, calcium supplement (Tums), and vitamin D until/unless my doctors suggest something different when they review the results.

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Google "the cat in the hat on aging"

Think of all the good we do by stimulating the medical economy.

I just got a call from my hospital's business office, and apparently I had two outstanding bills from last year. The total was about $50. I was so happy it was such a small amount that I paid it over the phone right then and there and told the lady to have a nice day. I cannot for the life of me figure out all the billing paperwork.

Every time I get a PSA I get a bill weeks later for $3.18 ??

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@bluegill

Google "the cat in the hat on aging"

Think of all the good we do by stimulating the medical economy.

I just got a call from my hospital's business office, and apparently I had two outstanding bills from last year. The total was about $50. I was so happy it was such a small amount that I paid it over the phone right then and there and told the lady to have a nice day. I cannot for the life of me figure out all the billing paperwork.

Every time I get a PSA I get a bill weeks later for $3.18 ??

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🤦‍♂️ There's no way it makes sense to send out a bill for $3.18 every three months. It's probably costing them far more than that just to bill you.

It's a symptom of business processes gone haywire when you see that kind of thing.

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