Men and our Prostate Glands

[fixit]

I was 82 years old last Sunday. Seven years ago my doctor said there is no need to check your prostate because your PSA is low, you sleep all night without getting up to pee and if you get prostate cancer at your age you will die of old age before the cancer kills you. OKAY? Fast forward to two years ago. Still no typical symptoms, PSA 0.94, because of a suspected lung problem I had a full body PET SCAN. Guess what no lung problem but they found advanced Prostate. After biopsies, it was graded at a 9 on the Gleason scale of 1 to 10 where 10 is the worst. So, 45 radiation treatments, 9 weeks 5 days a week, a barrier injected between my prostate and my colon, and a hose up my butt to keep my colon deflated. I also received monthly injections to suppress my testosterone, cancer thrives on testosterone.
How did that all go? Well, first I started to need to pee every hour and a half to two hours day and night, due to extreme exhaustion I could only spend 2 to 3 hours in my shop whereas before I worked 6 to 8 hours daily. The injections caused me to have extreme HOT FLASHES, MOOD SWINGS, LOSS OF MUSSEL STRENGTH, LOSS OF SEXUAL DESIRE, AND DEPRESSION. Sound familiar? Think change of life as a woman gets older. In December 2023 things were so bad I stopped all cancer meds, injections, etc. against the doctor's recommendations. I convinced my doctor to give me something for depression, I explained I was suicidal. TODAY. The hot flashes are nearly gone. My strength is slowly returning. No more dark thoughts, depression is gone. Everyone says "The old jerry is back." I work daily in the shop for 6 to 8 hours. I can sleep most nights without getting up to pee. I still can't get an erection, but the girlfriend understands.
If the cancer comes back? Screw it I'll just put up with it till it gets really bad the then I'll end it myself. In the meantime, I enjoy what life I still have.

 

[toprecyler]

Thank you for the log of your journey! I too, have been researching all aspects of my prostate issue. From what I can gather, the statement that you made, “they are at the mercy of a bunch of clinicians who can’t agree on a standard of care and are often in conflict with one another as to proper treatment recommendations” seems to hold true. The line in my Biopsy Tissue Sample, “ Perineural invasion: Present” has me pretty bothered at this time. Trying to stay busy to keep my mind off of it. I am 71 and in fair physical shape. A lot to think about. Once again, thank you!

Reading this response and David’s journey notes, I’m reminded that in most things in life, there is often more than one way to get to final result.

We all know the final result is we will all die. No sense in hiding/ ignoring that fact. Now, the journey to that result, will vary greatly for each of us. I’m reminded of the fact that I think I know a lot about my job, but I am understanding that the more I learn, the more I realize that I have yet to learn. The same is doubly true for medical providers. After all, they are still practicing.

They can only at best make guesses about how they think our bodies will react to proposed surgery, or medicine. But they can not 100% guarantee anything. The body will ultimately do what it will.

But with that said, it is more comforting to make a decision to go with a doctor that is much more comfortable with a strong opinion as to why he makes his suggestion, vs someone who may be wishy washey in his opinion. Better to have someone confident in his proposed solution.

As I write this, I am sitting next to my FIL in ICU. Waiting for rest of family to show up to turn off respirator and watch him peacefully go on. We had hoped that he might wake up from his accident, but it is not meant to be. All this week, it’s been clear that while the medical community may have made great strides in certain body traumas, they cannot fix everything. Sometimes we have to make that decision to let nature do what it is going to do.

Or in my personal belief, when the Lord decides it’s time for me to come home, it will be my time. Nothing on this earth will change that. My greatest hope is that I and my family will not have to suffer a lot when that time comes.


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[woodchucker]

the more I learn, the more I realize that I have yet to learn. The same is doubly true for medical providers. After all, they are still practicing.

They can only at best make guesses about how they think our bodies will react to proposed surgery, or medicine. But they can not 100% guarantee anything. The body will ultimately do what it will.

Sadly, I have had many Drs that think they are so smart, they don't listen to the patient. Or they don't do the basics first, and progress, and miss something. You must do your own due diligence. And sometimes that is hard.

 

[rabler]

I would highly recommend you tune into this organization and watch the videos that are related to your situation:
https://pcri.org/

The Prostate Cancer Research Institute (pcri.org) is a good resource. They have a series of YouTube videos I highly recommend, seconding @davidpbest's comments here. A few comments from the perspective of 5 years out after getting the full barage of treatments (prostatectomy, radiation, hormone therapy) and no sign of recurrance as of earlier this month:

I was highly frustrated with my initial diagnosis plan with prostate cancer. Rather than detailing it, I would say this one of those areas where you really want to be up to speed on what is going on, and don't be afraid to do as David did, get several opinions and don't just accept everything you're told as absolute. The science/research/standard of care is also rapidly changing, so stay current on what is going on. The recent (about 2 years now) availablility of PSMA/PET scans makes a significant difference in treatment options, as limited metastatic prostate cancer is significantly more treatable by radiation.

... How did that all go? ...

My diagnosis was fairly similar at 55. It's been a rough road. The hormone therapy is not fun. But *you* get to make the final medical decisions for yourself on these things, just tell the doc it is a quality of life decision. They should respect that.

There are forms of prostate cancer that don't show significant PSA increase. While those are less common, they are likely to be more aggressive. Also, PSA will temporarily increase from your personal baseline if there is any stress or prostate activity (aka sex) in the last few days. "Stress" can include poor seating or a rough ride (think motorcycles, horses, heavy equipment). Knowing this and keeping track of what you've done for the few days before your annual physical/PSA test may help reduce the amount of "come back again in a few months and we'll check it again".

I'm not an M.D, just somebody who's been through it. If anyone dealing with prostate cancer wants more details or just someone to bounce ideas off of, send me a message ...

 

[davidpbest]

While this thread is on my mind, I'll add a few more comments/clarifications.

For me the worst part about dealing with the clinicians was their focus on life expectancy. Several of them seem preoccupied with the idea of prescribing treatment to get me to my statistical "end point" of 83 years. I would hear things like "This is slow growing, so chances are good that if we just watch and wait, we can get you to 83 without serious intervention." While that may make a lot of sense to a statistician, I had to repeatedly remind the docs that "getting to 83 is not good enough, so knock off that BS and focus on longer term." I found all this very disorienting - it brought back memories of the "death board" conspiracy theories tossed around during the Obamacare debates. It took a while to get to the point of saying "Stop with that. Let's focus on a curative approach while I'm still young enough to tolerate the treatment."

The other part that was totally under-sold were the side effects from the hormone injections. I didn't mention these earlier, but the depression, complete lack of motivation to do anything in the shop, and the suicidal idaeations, but they were all very present. Being single and living alone made the struggle really challenging at times. And a "cancer diagnosis"meant coming face-to-face emotionally with my mortality for the first time, which was a backdrop for depression even without the hormone injections. While these symptoms were clearly spelled out as "possible in rare instances" I felt unarmed and unprepared when the darkness took over. Had I known in advance, I would have arranged some type of support group. I mention this so others can be aware and take steps ahead of time.

And the other aspect that seemed vexing and took a lot of time was trying to figure out which doctors and treatment centers were "centers of excellence." This was particularly concerning to me when it comes to radiation treatments. I didn't want some "maximize profit factory type" treatment center doing a hack job of it, leaving me with lifelong bladder issues or an ulcerated rectum. Here in Portland, I had a choice of about six radiation treatment centers and probably 25 radiation oncologists to pick from, which is a good thing in some sense, but after a couple of weeks of serious due diligence, there is clearly a ranking from "excellent" to "questionable". The morale here is to do the work - check out the reputations (nurses are the best source of scuttlebut about doctors) and treatment facility options.

Like @rabler said, if anyone want to discuss this in detail off-line, I'm available.

 

[MikeWi]

That's the scariest part of this whole thing IMHO. It's just a fact that the Drs. that do well in school and excel will very likely NOT be the Drs. that you encounter for your care. They'll be somewhere making the big bucks from people with deep pockets. The rest of us have to settle for what the wife and I call the lower 50%. It was really underscored recently with our experience with blood clots in my wife that the local hospital completely mis-handled. Long story that doesn't belong here.

 

[Flyinfool]

I got to play the prostate game to.
My father and all of his brothers have had prostate cancer so I have been getting screened both digitally and PSA since I was 40. It was at age 60 that all the relatives were diagnosed with prostate cancer. When I turned 60 My PSA was at 2.5 and I passed the finger test. 3 months later I was peeing blood, LOTS of blood. I called my Dr and after a discussion was told to go to the ER. At the ER they took a urine sample for testing and it came back with slight traces of urine in this blood sample.
They sent me down for a CT scan to see if there was anything obvious like a kidney stone or something causing my bleeding and it was negative. The bleeding was subsiding so they sent me home with an appointment the next day with a Urologist.

PSA was at 14.2 from 2.5 three months earlier and prostate was huge. Then came all of the fun testing, each one more invasive and unpleasant than the last. One of the tests was able to accurately measure the prostate and it was about the size of a baseball, it is supposed to be the size of a walnut.
Started me with antibiotics to be sure it was not an infection causing all of the symptoms after a week of the antibiotics my PSA had gone to 15.5 It was finally determined that it was not cancer, just BPH.

I am on FLowmax (I never had any noticeable side effects) and Finasteride for the rest of my life. I am back to getting up once a night instead of 7-8 times, and my prostate is back to the size of a walnut. Finasteride is better known for its brand name and its side effects. Brand name Propecia was originally developed for treating BPH and has the side effect of treating male pattern baldness. So even though all of my male relatives and many of the females are bald, this treatment has me a full head of hair.

 

[woodchucker]

I got to play the prostate game to.
My father and all of his brothers have had prostate cancer so I have been getting screened both digitally and PSA since I was 40. It was at age 60 that all the relatives were diagnosed with prostate cancer. When I turned 60 My PSA was at 2.5 and I passed the finger test. 3 months later I was peeing blood, LOTS of blood. I called my Dr and after a discussion was told to go to the ER. At the ER they took a urine sample for testing and it came back with slight traces of urine in this blood sample.
They sent me down for a CT scan to see if there was anything obvious like a kidney stone or something causing my bleeding and it was negative. The bleeding was subsiding so they sent me home with an appointment the next day with a Urologist.

PSA was at 14.2 from 2.5 three months earlier and prostate was huge. Then came all of the fun testing, each one more invasive and unpleasant than the last. One of the tests was able to accurately measure the prostate and it was about the size of a baseball, it is supposed to be the size of a walnut.
Started me with antibiotics to be sure it was not an infection causing all of the symptoms after a week of the antibiotics my PSA had gone to 15.5 It was finally determined that it was not cancer, just BPH.

I am on FLowmax (I never had any noticeable side effects) and Finasteride for the rest of my life. I am back to getting up once a night instead of 7-8 times, and my prostate is back to the size of a walnut. Finasteride is better known for its brand name and its side effects. Brand name Propecia was originally developed for treating BPH and has the side effect of treating male pattern baldness. So even though all of my male relatives and many of the females are bald, this treatment has me a full head of hair.

15.5 or ? 5.5

 

[Flyinfool]

In that one week went from 14.2 to 15.5 and from 2.5 three months earlier, not a typo. Hence the extreme concern. The second test one week later was to be sure the 14.2 was not an anomaly. I am now back to hovering around 3.5 to 4, for my age that is in the ballpark of good.

 

[woodchucker]

In that one week went from 14.2 to 15.5 and from 2.5 three months earlier, not a typo. Hence the extreme concern. The second test one week later was to be sure the 14.2 was not an anomaly. I am now back to hovering around 3.5 to 4, for my age that is in the ballpark of good.

I was referring to the reading after the antibiotics, I thought that it would go down.