BPH (enlarged prostate) Diagnosis

[Midpack]

I appreciate all the input, regardless of your POV.

Unfortunately there are no clear answers in PC treatment, even my doctor volunteered same.

And there are lots of studies to show conclusively RP was over prescribed in the past, and the field is trying to better define a middle ground. Low risk and high risk are still pretty clear, but intermediate is not. I have learned a lot from The Prostate Cancer Research Institute, and reading the details of 3 studies, ProtecT, PIVOT and SPCG-4. Here's some data from the PIVOT study that gives me pause, % deaths over 4, 8, 12 and 16 years from RP patients vs watchful waiting.

PIVOT Survival Rates upon initial diagnosis of intermediate PC	4 yrs	8 yrs	12 yrs	16 yrs
Radical prostatectomy	98%	96%	95%	92%
Watchful waiting	98%	94%	90%	86%

RP is not as clear a winner over waiting for me, given the much higher risk of RP side effects. Again, quality of life is a substantial factor for me, and it is a tradeoff. Risk of side effects from RP, radiation or focal treatments are not insignificant - so I don't want to start down that path lightly.

If my bone scan comes back positive for cancer, I'll have to consider treatment far beyond the choices for intermediate localized prostate cancer. I really have no reason to expect it's metastasized, but we'll see.

I expect my genomic test (Oncotype DX GPS) to reveal a lot more than I know today from GS and PSA alone. Hopefully I'll see that within a few weeks.

 

[joesxm3]

My second Decipher test predicted a 15% mortality risk over 15 years assuming RP or EBRT treatment.

As was just mentioned, the modern thinking is that all prostate cancers probably have microscopic metastasis and it depends on whether your immune system can handle.

Something else I came across doing research said that everyone is constantly having cell mutations. Most of the time they are tracked down and destroyed. When that process fails we call it cancer.

 

[Koolau]

I keep telling myself that being older at least has the advantage of likely dying from something other than PC or (in my case right now) thyroid cancer. Looking at the figures in Midpack's table above, for 86% survival rate at 16 years, I would be (wait for it) 93. Not impossible but not too likely either. Full disclosure, I use 99 years for my FIRECalc inputs.

 

[target2019]

It may be informative if one looks around, especially towards the top urology centers, for research studies. Here is a list to get started - https://health.usnews.com/best-hospitals/rankings/urology

How does that help?

I just received a followup result from a 2019 cancer genetic study I was in. They collected a spit sample back then and I was processed through a 51-gene panel at the time. Nothing detected except for a finding of MSH2 variant of unknown significance. Five years later I received a letter that this was now classified as benign. So this study has no great reveal for me, but I am contributing to research.

If you really want to deep dive, take your Ancestry or 23&Me DNA test download and process it through Promethease - just be careful dealing with the findings. There's a lot to understand...so a warning. But you'll become much more familiar with a very complex problem.

I've been told that *most* men will develop PC if they live long enough. I've not researched that at all, so be advised.

The other interesting thing, from my non-PC oncologist, is that mutations happen within us more frequently than we'd like to believe. However, the body has defenses that destroy almost all of them (as joesxm3 mentioned.) But what would happen if with age or some other factor, you lose one or two important genes that work in your favor? That is the crux of my other cancer.

 

[Midpack]

If my bone scan comes back positive for cancer, I'll have to consider treatment far beyond the choices for intermediate localized prostate cancer. I really have no reason to expect it's metastasized, but we'll see.

I expect my genomic test (Oncotype DX GPS) to reveal a lot more than I know today from GS and PSA alone. Hopefully I'll see that within a few weeks.

Got results from my bone scan today, negative - so some better news for a change. [I'd hoped the MRI and biopsy would be clear - not]

Hopefully the (in progress) genomic test report shows a "low likelihood of adverse outcomes."

If so, I've chosen active surveillance for 6 months [PSA 6 months, MRI 18 months, biopsy 3 years]. After that maybe a focal treatment, but I'm not inclined to go with RP or EBRT so far. I will continue to study.

 

[joesxm3]

Well that is good news.

However, the retest schedule seems a bit long. I had a repeat MRI showing no change but a biopsy and genomic test leading to treatment in only one year.

I suppose if the MRI shows something they will biopsy sooner.

 

[jollystomper]

Midpack, good to hear!

 

[Midpack]

Well that is good news.

However, the retest schedule seems a bit long. I had a repeat MRI showing no change but a biopsy and genomic test leading to treatment in only one year.

I suppose if the MRI shows something they will biopsy sooner.

Yes, a suspect PSA, MRI or biopsy can accelerate next steps as I understand it.

And I’m in deep enough that I think I need to find a practice that specializes in PC. Duke Univ might be closest to me. Any suggestions on how to find the best practitioners for the various treatments - HIFU, Tulsa, seed radiation?

 

[joesxm3]

Not sure about how to find local experts. Maybe contact PCRI or ask on that cancer specific forum. I think the name is Inspire or something similar.

This video is my doctor giving a lecture to residents at Yale on various ablation focal therapies.

For partial gland ablation you should look into one called IRE or NanoKnife. This was at the top of my list but could not do whole gland.

High dose brachytherapy also seemed interesting for focal treatment. But is harder to find.

If you can go to Alpharetta GA, Dr. Busch is one of the leading TULSA experts. But he does not take insurance although that may change by the time you need it.

As you no doubt have seen, PCRI say getting a doctor that is really good at the procedure is more important than which procedure you choose.

 

[Koolau]

Not sure about how to find local experts. Maybe contact PCRI or ask on that cancer specific forum. I think the name is Inspire or something similar.

This video is my doctor giving a lecture to residents at Yale on various ablation focal therapies.

For partial gland ablation you should look into one called IRE or NanoKnife. This was at the top of my list but could not do whole gland.

High dose brachytherapy also seemed interesting for focal treatment. But is harder to find.

If you can go to Alpharetta GA, Dr. Busch is one of the leading TULSA experts. But he does not take insurance although that may change by the time you need it.

As you no doubt have seen, PCRI say getting a doctor that is really good at the procedure is more important than which procedure you choose.

Is there an equivalent of YELP for finding a "good" doctor? I felt fortunate to "draw" a good doctor for my stents when my cardiologist was off Island. Turns out the doc who did mine was one of the few on Island who does valve replacements through the artery rather than open heart (Didn't need that but figured he must be good.) Anyway, how DO you find the best doc?

 

[Duke of Sands]

All good info. PSA/BPH seem to be minimal here but frequent waking to pee has been an issue with me Tried to counteract the frequent waking via half a tablet of Benedryl but, it being a diuretic, the bladder was worse! Then I discovered that a couple of ibuprophen tablets taken at the same time cut the waking frequency by at least half, down to once per night sometimes. Maybe was a coincidence but further experimenting seems to confirm the effect, at least with me..

 

[Qs Laptop]

I discovered that a couple of ibuprophen tablets taken at the same time cut the waking frequency by at least half, down to once per night sometimes. Maybe was a coincidence but further experimenting seems to confirm the effect, at least with me..

Probably not a coincidence. I've found the same effect if I take Tylenol (acetaminophen) before bedtime. I asked my urologist about this and he confirmed that many people will find taking acetaminophen or ibuprofen before bedtime can reduce the number of nighttime bathroom breaks. For others, it doesn't do anything. Maybe you are one of the lucky ones. Of course, constantly taking these meds is not good for the liver.

 

[camfused]

I am 65, and have been taking a double dose of Flowmax for several years now, and the flow had been getting worse in the last year or so.

So, my U doc recommended PAE (Prostate Artery Embolization) for my BPH, over a year ago. But, my ACA insurance did not cover it, and it was going to be something like $14K to have it done. So, I waited until I started Medicare (which does cover it) and I had it done a week ago.

The actually procedure was 25 min, outpatient. I was in and out in 4 hours total. The good part was they do nothing to the wiener. The unpleasant part was they injected a dye while doing the imaging, and that gave a brief but intense burning sensation in the wiener. I was awake for the whole thing, but they did give me a Valium to chill.

The first night, there was a strong burning sensation when I peed, which was often. I had pain meds to help a little, and the burning was gone by the end of the second day. There was a lot of constipation too, from the meds. I also felt very frequently like I had to pee.

Now, one week later, the pee urgency has subsided by about half. No other symptoms. Flow has improved over what it was before the procedure. This has surprised me that there is a change so soon, since I was told it would be several weeks before I noticed a difference. Perhaps it will get even better...I'll report here if so.

This is supposed to "fix" the BPH for somewhere between 5-10 years, at which point I'll have to repeat the process. Honestly, after the first 2 days of discomfort, this has not been that bad at all, so I think I can handle that just fine.

I have a follow up with the U doc in 3 months, where I hope he says I can cut the Flowmax. Two less pills to take!

Compared to a lot of the other procedures I read about, this is relatively easy, quick recovery, less pain, and they don't do anything to your wiener. I hope this helps someone else here.

 

[Koolau]

Based on your experience, I looked up the procedure which sounds a LOT better than TURP. I just started Tamsulosin recently and, though it helps, it's less effective than I thought it would be. I'll check with my PCP about upping the dose. Still, PAE sounds like a real possibility in my future. So far, PSAs are okay, so I guess we'll see. Thanks for sharing your experience. It gives me some hope for the future. I don't expect my BPH to resolve, so, something will need to be done eventually should I live so long. Aloha

 

[camfused]

I am 65, and have been taking a double dose of Flowmax for several years now, and the flow had been getting worse in the last year or so.

So, my U doc recommended PAE (Prostate Artery Embolization) for my BPH, over a year ago. But, my ACA insurance did not cover it, and it was going to be something like $14K to have it done. So, I waited until I started Medicare (which does cover it) and I had it done a week ago.

The actually procedure was 25 min, outpatient. I was in and out in 4 hours total. The good part was they do nothing to the wiener. The unpleasant part was they injected a dye while doing the imaging, and that gave a brief but intense burning sensation in the wiener. I was awake for the whole thing, but they did give me a Valium to chill.

The first night, there was a strong burning sensation when I peed, which was often. I had pain meds to help a little, and the burning was gone by the end of the second day. There was a lot of constipation too, from the meds. I also felt very frequently like I had to pee.

Now, one week later, the pee urgency has subsided by about half. No other symptoms. Flow has improved over what it was before the procedure. This has surprised me that there is a change so soon, since I was told it would be several weeks before I noticed a difference. Perhaps it will get even better...I'll report here if so.

This is supposed to "fix" the BPH for somewhere between 5-10 years, at which point I'll have to repeat the process. Honestly, after the first 2 days of discomfort, this has not been that bad at all, so I think I can handle that just fine.

I have a follow up with the U doc in 3 months, where I hope he says I can cut the Flowmax. Two less pills to take!

Compared to a lot of the other procedures I read about, this is relatively easy, quick recovery, less pain, and they don't do anything to your wiener. I hope this helps someone else here.

It's a slow news day , so I thought I would do an update on my PAE. It has been 3 months since the procedure. Flow is still like I was 25 years ago, and no urge to go a lot, so those problems are fixed. I had the 3 month followup the other day, and doc said my prostate has shrunk down nicely. My PSA went from about 4.5 to 1.53. Doc said I can stop taking the Tamsulosin (Flowmax) (yea, two less pills to take per day).

Only two sides effects: 1) semen is brownish with spots (blood I think). Doc said nothing to be concerned about, and perhaps a temp side effect. 2) retrograde ejaculation. Not satisfying, but doc says nothing to worry about.

Total success, in my book.

 

[Car-Guy]

It's a slow news day , so I thought I would do an update on my PAE. It has been 3 months since the procedure. Flow is still like I was 25 years ago, and no urge to go a lot, so those problems are fixed. I had the 3 month followup the other day, and doc said my prostate has shrunk down nicely. My PSA went from about 4.5 to 1.53. Doc said I can stop taking the Tamsulosin (Flowmax) (yea, two less pills to take per day).

Only two sides effects: 1) semen is brownish with spots (blood I think). Doc said nothing to be concerned about, and perhaps a temp side effect. 2) retrograde ejaculation. Not satisfying, but doc says nothing to worry about.

Total success, in my book.

Happy for you but a little TMI for me.

 

[jazz4cash]

Funny how “Well Pump Replacement” shows up on the list of similar threads.

 

[Time2]

I am 65, and have been taking a double dose of Flowmax for several years now, and the flow had been getting worse in the last year or so.

So, my U doc recommended PAE (Prostate Artery Embolization) for my BPH, over a year ago. But, my ACA insurance did not cover it, and it was going to be something like $14K to have it done. So, I waited until I started Medicare (which does cover it) and I had it done a week ago.

I came here just to put in the option of PAE (Prostate Artery Embolization), but you beat me to it, unless I posted previously! "Tiny round microspheres (particles) are injected through the catheter and into the blood vessels that feed your prostate to reduce its blood supply." The microspheres are inserted via catheter from an arm or leg artery. They block blood flow and the prostate shrinks. Here is a John Hopkins link about it. Prostatic Artery Embolization

 

[Time2]

Only two sides effects: 1) semen is brownish with spots (blood I think). Doc said nothing to be concerned about, and perhaps a temp side effect. 2) retrograde ejaculation. Not satisfying, but doc says nothing to worry about.

Total success, in my book.

Retrograde ejaculation can be a side effect of Tamulosin. You may find it goes away when you stop taking the Tamulosin. Incidence is higher with the double dose.

 

[atmsmshr]

BPH more than 6 years. Now 63 yrs old. Had Aqua Ablation (sounds like a pool cleaner) 4 weeks ago. Just stopped taking Flowmax after 6 years use. Previously, 2 emergency room caths from urinary retention until learning to self cath. PSA had varied from 5 to 16 (spiking with recurring prostatitis). Did the biopsy thingy one time where they staple the colon to the prostate. Negative - thank God. 160 grams MRI sizing 5 years ago – and it grew since then. AA recommended by chief of urology at the regional hospital. Steps: Cystoscopy with two female nurses helping urologist drive a TV up my Johnson. Insurance preapproval (billed at $50k?!). 3 hr procedure with six in OR plus me. Anesthesiologist propofols me out and jams a trache tube past uvula and epiglottis. Team 2 puts a sonogram in the same place that space aliens use. Team 3 is the urologist inserting a powerwasher, TV, irrigation tube and ‘smooting button’ up the old talleywacker to remove half of the inner gland. One overnight stay in the hospital to get irrigated until the bleeding stopped. 3 nights at home and then get the Foley removed 4 days after surgery. A little bleeding and discomfort. Light duty for 3 weeks (No bending, twisting, lifting more than 10 bls). Very pleased with AA results – its like my 16 year old self holding a fire hose again. Amazing what we put up with in gradual changes while aging. Have not tried sex yet – but have a ‘Save the Date’ on Calander with the wife in chief.

 

[frayne]

Great post, Atom-Smasher! Quick question: Have you noticed any deleterious effects after consuming alcohol—whether beer, wine, or spirits? If you're a teetotaler, that's fine too.

 

[Car-Guy]

BPH more than 6 years. Now 63 yrs old. Had Aqua Ablation (sounds like a pool cleaner) 4 weeks ago. Just stopped taking Flowmax after 6 years use. Previously, 2 emergency room caths from urinary retention until learning to self cath. PSA had varied from 5 to 16 (spiking with recurring prostatitis). Did the biopsy thingy one time where they staple the colon to the prostate. Negative - thank God. 160 grams MRI sizing 5 years ago – and it grew since then. AA recommended by chief of urology at the regional hospital. Steps: Cystoscopy with two female nurses helping urologist drive a TV up my Johnson. Insurance preapproval (billed at $50k?!). 3 hr procedure with six in OR plus me. Anesthesiologist propofols me out and jams a trache tube past uvula and epiglottis. Team 2 puts a sonogram in the same place that space aliens use. Team 3 is the urologist inserting a powerwasher, TV, irrigation tube and ‘smooting button’ up the old talleywacker to remove half of the inner gland. One overnight stay in the hospital to get irrigated until the bleeding stopped. 3 nights at home and then get the Foley removed 4 days after surgery. A little bleeding and discomfort. Light duty for 3 weeks (No bending, twisting, lifting more than 10 bls). Very pleased with AA results – its like my 16 year old self holding a fire hose again. Amazing what we put up with in gradual changes while aging. Have not tried sex yet – but have a ‘Save the Date’ on Calander with the wife in chief.

I must say I like your analogies. Very appropriate and well understood. I'm sure the two female nurses could add to your descriptive analogies, and probably did, while you were out.

 

[atmsmshr]

Great post, Atom-Smasher! Quick question: Have you noticed any deleterious effects after consuming alcohol—whether beer, wine, or spirits? If you're a teetotaler, that's fine too.

Had a couple of glasses of eggnog reinforced with bourbon over Thanksgiving (I know - what a party animal) No adverse effects noted. For the past year I had nearly gone teetotaler because alcohol irritates the prostate. Sounds like you already knew that.

 

[atmsmshr]

I must say I like your analogies. Very appropriate and well understood. I'm sure the two female nurses could add to your descriptive analogies, and probably did, while you were out.

Seven different surgical procedures this year - four with propofol for a total of 22 days in three hospitals. (Not counting the mundane and regular clinic things.) Didn't even need local anesthesia for the Cystoscopy because I passed out from embarrassment. Presently my dignity has withered away, but am cautiously optimistic that it will grow back in 2025. OTOH - my pain tolerance is pretty impressive. Last evening had my second emergency laser eye surgery for retinal tears without whimpering this time when stitching over optical nerves. Mucho respect for the modern medical community. Happy Holidays!