BPH (enlarged prostate) Diagnosis

[jgman]

jgman, would you please come back to this thread after your procedure and post your experience? My urologist is recommending aquablation as a possible treatment for me and any information would be appreciated.

Had Aquablation this past Wednesday. Was in the hospital recovery for a few hours and went home. No issues, very little pain. Had Catheter in until Friday morning. Removed it myself (very easy and painless process). The only hiccup was I couldnt void for almost 7 hours. Actually went to the ER and while waiting I finally voided twice. I am doing fine now, very little blood in urine. Hoping the stream gets stronger with time.

 

[deserat]

There are some trials upcoming in the USA for Prostatic implants and this may be another treatment option. Google it....I'm under NDA, but do know this is another option based on some consulting work I am currently doing.

 

[Qs Laptop]

Had Aquablation this past Wednesday. Was in the hospital recovery for a few hours and went home. No issues, very little pain. Had Catheter in until Friday morning. Removed it myself (very easy and painless process). The only hiccup was I couldnt void for almost 7 hours. Actually went to the ER and while waiting I finally voided twice. I am doing fine now, very little blood in urine. Hoping the stream gets stronger with time.

Doesn't sound too bad, except for the ER scare. Thanks for the update.

 

[Koolau]

So far, JUST started taking Flowmax but I'm also reading all appropriate threads here with an eye toward the future. Thanks to all. By the way, the BP "side effect" to Flowmax is just about the "kick" I needed to get down to my ideal BP. I guess you need to get lucky once in a while.

 

[Midpack]

So I got my fusion biopsy results today. 11 samples - 5 benign, 2 Gleason 3+3/Grade 1, 4 3+7/Grade 2. I don’t meet with my urologist until next Thursday, but from what I can tell it could be much worse, grades 3-5. Hopefully it means I’m falling in the large population of men who will die with prostate cancer, not from it. We’ll see.

 

[MichaelB]

So I got my fusion biopsy results today. 11 samples - 5 benign, 2 Gleason 3+3/Grade 1, 4 3+7/Grade 2. I don’t meet with my urologist until next Thursday, but from what I can tell it could be much worse, grades 3-5. Hopefully it means I’m falling in the large population of men who will die with prostate cancer, not from it. We’ll see.

Looking forward to reading your Urologist’s assessment and recommendation. Best of luck.

 

[marko]

So I got my fusion biopsy results today. 11 samples - 5 benign, 2 Gleason 3+3/Grade 1, 4 3+7/Grade 2. I don’t meet with my urologist until next Thursday, but from what I can tell it could be much worse, grades 3-5. Hopefully it means I’m falling in the large population of men who will die with prostate cancer, not from it. We’ll see.

Good luck. God Bless.

 

[frayne]

Thanks for the update Midpack and keep us in the loop if you don't mind.

 

[grasshopper]

So I got my fusion biopsy results today. 11 samples - 5 benign, 2 Gleason 3+3/Grade 1, 4 3+7/Grade 2. I don’t meet with my urologist until next Thursday, but from what I can tell it could be much worse, grades 3-5. Hopefully it means I’m falling in the large population of men who will die with prostate cancer, not from it. We’ll see.

Should this read as 3+4=7 Grade 2. David

 

[rk911]

So I got my fusion biopsy results today. 11 samples - 5 benign, 2 Gleason 3+3/Grade 1, 4 3+7/Grade 2. I don’t meet with my urologist until next Thursday, but from what I can tell it could be much worse, grades 3-5. Hopefully it means I’m falling in the large population of men who will die with prostate cancer, not from it. We’ll see.

Best wishes and good luck to you.

 

[Midpack]

Should this read as 3+4=7 Grade 2. David

OMG yes! It was 3+4/Grade 2. Thanks for questioning the post.

 

[Koolau]

OMG yes! It was 3+4/Grade 2. Thanks for questioning the post.

Do keep us posted. Best luck. This all hits pretty close to home for the guys on the FIRE Forums.

 

[Midpack]

My urologist laid out the options, waiting, surveillance, RP, radiation, brachy and the various focal approaches. I have 50% cores with cancer (all left lobe), though all Grade 1 or 2, and a PSA of 4.76 (relatively low). He mostly left it up to me, and that seems to be what most (good) urologists prefer as its quality of life versus longevity - a decision the patient has to be in on.

I think quality of life is a higher priority than maximizing years for me, though DW is still trying to get her head around that. He’s ordered a bone scan to see if it’s spread (I can’t believe it has - there is absolutely no family history of PC) and an Oncotype DX GPS genomic classifier test (IMO that should be very helpful - I am a big believer in data based decisions). If those aren’t alarming, I get another PSA and meet with him again in 6 months. If it’s more serious than I think, I can always choose treatment. RP and radiation side effects are permanent so I don’t want to rush into either. The more I learn, the more at peace I am with the situation, come what may. Life goes on…

I kinda wish there was a PC thread, I am sure others here have been down this road.

And I’m sharing with immediate family, not quite sure if or how to share with close friends. There’s nothing they can do to help, so why bring them down, friends are for good times to me. And it’s still not entirely clear if this will be a minor or major turn in my life.

 

[frayne]

Sorry that you are going through this, Midpack. I completely agree with you on prioritizing quality of life over longevity. It's important that you are making decisions based on the best information available at the time.

 

[marko]

Prayers.

 

[target2019]

My urologist laid out the options, waiting, surveillance, RP, radiation, brachy and the various focal approaches. I have 50% cores with cancer (all left lobe), though all Grade 1 or 2, and a PSA of 4.76 (relatively low). He mostly left it up to me, and that seems to be what most (good) urologists prefer as its quality of life versus longevity - a decision the patient has to be in on. I think quality of life is a higher priority than maximizing years for me, though DW is still trying to get her head around that. He’s ordered a bone scan to see if it’s spread (I can’t believe it has - there is absolutely no family history of PC) and an Oncotype genomic classifier test (IMO that should be very helpful - I am a big believer in data based decisions). If those aren’t alarming, I get another PSA and meet with him again in 6 months. If it’s more serious than I think, I can always choose treatment. RP and radiation side effects are permanent so I don’t want to rush into either. The more I learn, the more at peace I am with the situation, come what may. Life goes on…

I kinda wish there was a PC thread, I am sure others here have been down this road.

And I’m sharing with family, not quite sure if or how to share with close friends. There’s nothing they can do to help, so why bring them down, friends are for good times to me. And it’s still not entirely clear if this will be a minor or major turn in my life.

There are PC threads. They go in many directions since each person has different results. I've been on Active Surveillance for a long time, as you can see.

Biopsy history:
3/2010 2/12 GS6
5/2011 1/16 GS6
6/2012 0/12
6/2014 0/12
2/2017 0/12

I was at the urologist office for a problem a few days ago, and he mentioned that he really didn't expect to see me after the bladder procedure he performed in 2020. Much bigger problems, not related to PC, started in 2020. He also performed surgery on my kidney before that.

The genetic testing you can get today is much more extensive than 10 years ago. It is amazing to receive targeted therapy for cancer, and know that I am one fortunate patient.

The best advice for you is to work with specialists who you trust. If you feel rushed into something, look for other opinions. I have found during the past 15 years that there is a wide gulf between suburban health systems and well-known university-based ones.

I only share medical with immediate family. The problem in discussing these things with friends is that they know a guy who knew a guy and so on. Of course I make exceptions for E-R.org folks, being careful to point out that my data and prognosis is unique, as everyone's is.

 

[joesxm3]

One suggestion I might make to improve the odds in the active surveillance protocol is to cut way back on sugar and carbs. I have seen some discussion on how Sloan Kettering is using ketone it diet to slow the growth of some cancer cells. Allegedly while normal cells can make energy from both glucose and ketones, cancer cells can only use glucose.

I am not heavily read up on this and I know you would want sources. But maybe you could look into this.

 

[Midpack]

The genetic testing you can get today is much more extensive than 10 years ago. It is amazing to receive targeted therapy for cancer, and know that I am one fortunate patient.

The best advice for you is to work with specialists who you trust. If you feel rushed into something, look for other opinions. I have found during the past 15 years that there is a wide gulf between suburban health systems and well-known university-based ones.

I very much appreciate your whole post, notably these comments. I am looking forward to the genetic testing results after seeing sample reports. Exactly what my engineer brain wants to know.

I think the (surgeon) urologist my PCP referred me to has been good, every step he’s taken so far seems consistent with what I’ve read online from the best sources. He seems to be aware that PC has been overtreated in the past and the field is trying to improve in that regard, but there are still no obvious answers. And he is not pushing surgery or any other treatment so far, However, I am wondering if I need to seek out someone who specializes in PC.

 

[joesxm3]

Dr. Epstein at Cleveland Clinic is an expert. They do second opinions. I did a quick search and they seem to have set up a virtual process. This is different from when I looked into it.

Prostate Cancer Second Opinion | Virtual Second Opinions

A prostate cancer second opinion can help you find peace of mind. Call 866.887.0507 today to get started.

www.clinicbyclevelandclinic.com

 

[grasshopper]

I very much appreciate your whole post, notably these comments. I am looking forward to the genetic testing results after seeing sample reports. Exactly what my engineer brain wants to know.

I think the (surgeon) urologist my PCP referred me to has been good, every step he’s taken so far seems consistent with what I’ve read online from the best sources. He seems to be aware that PC has been overtreated in the past and the field is trying to improve in that regard, but there are still no obvious answers. And he is not pushing surgery or any other treatment so far, However, I am wondering if I need to seek out someone who specializes in PC.

I have shared a lot about my love affair with PC. I have big time history of PC in my family. I started PSA testing at 40 by 61 my PSA was 4.5 and my PCP suggested I have a visit with a urologist. My urologist did a 12 core biopsy with a result of 3+2 (yeah GS2 is a nothing burger). Rinse and repeat the next year same result 3+2. I have been a vegetarian bordering on vegan for 30+ years. I started incorporating foods, and spices, and exercise, that seemed to lower PSA. Over the next couple of years my PSA stayed around 3.0.
On to 2021 10 years after DX and 10 years of active surveillance, my prostate started to affect my urine flow. A couple of UTI's and a kidney scan and then an MRI said time to do something. My 3rd biopsy ever was a MRI ultrasound fusion, result 1 core 3+4. I had my slides sent to John Hopkins and findings were confirmed. In 2023 I had a HoLEP procedure, not for my PC but my kidneys. The HoLep removed 55 gm of my 109 gm prostate.
My PSA pre HoLep was around 2.5 while taking Finasteride and Tamsulosin. Finasteride can/will reduce PSA by 50% after using for one year. One year after HoLep and stopping both drugs and my PSA is 2.5. It is suggested that the laser procedure may have removed the small tumor. Next stop another MRI and possible fusion biopsy. My urologist feels that at 73 with 6 month exams and PSA testing, that active surveillance is a good plan for me.
No one has ever suggested any testing for an aggressive cancer.

 

[rodi]

My urologist laid out the options, waiting, surveillance, RP, radiation, brachy and the various focal approaches. I have 50% cores with cancer (all left lobe), though all Grade 1 or 2, and a PSA of 4.76 (relatively low). He mostly left it up to me, and that seems to be what most (good) urologists prefer as its quality of life versus longevity - a decision the patient has to be in on.


I kinda wish there was a PC thread, I am sure others here have been down this road.
.

I agree that a good urologist will give an overview of options and let the patient decide. Our experience was the surgeon explained the options but thought surgery was the best option.... But strongly encouraged seeing the onco-radiologist before deciding. The radiologist thought his approach was best. It's the old adage of 'if you have a hammer every thing looks like a nail"... But doctor's preferred their area of expertise. DH also consulted with the urologist he'd gotten a second opinion from after the original MRI, sharing the biopsy results with him.

DH's cancer is a but more serious than yours: Gleason score 7 (4+3) and PSA that went from 3.5 during covid to 6 to 8. Both urologists stressed that watch and wait was not really appropriate at this point... It was time to do something.

He was frustrated when he looked into brachy, TULSA, etc ... Not available at any of the hospital systems in San Diego (Sharp, Scripps, UCSD). He had phone consultations with UCLA about TULSA. And with a different practice at UCLA about Brachy.

He's 72 and was highly concerned about the possible side effects from surgery. Frank discussions with both the urologist and radiologist about continence led him to pick the EBRT.

Unfortunately, the PMS Petscan has been postponed twice. But times they forgot to order the gallium 68. He has to go through that hurdle before he can get the hormone blocking shot.. then it's 2 more months before radiation can start. My selfish whine is that this destroys all of our joint travel plans for the rest of the year. But it's only a minor whine. Fortunately DH Is enjoying a trip to Japan with older son prior to treatments starting.

 

[Koolau]

I think quality of life is a higher priority than maximizing years for me, though DW is still trying to get her head around that. He’s ordered a bone scan to see if it’s spread (I can’t believe it has - there is absolutely no family history of PC) and an Oncotype DX GPS genomic classifier test (IMO that should be very helpful

Not trying to be a downer regarding "waiting." I have no personal experience except two friends who had spread to bones. "Quality of Life" became problematic. I would not want that scenario and might instead favor some form of treatment just to avoid bone involvement. I guess there's no way to know if spread is inevitable or not. SO many variables...

We are all pulling for you.

 

[target2019]

I very much appreciate your whole post, notably these comments. I am looking forward to the genetic testing results after seeing sample reports. Exactly what my engineer brain wants to know.

I think the (surgeon) urologist my PCP referred me to has been good, every step he’s taken so far seems consistent with what I’ve read online from the best sources. He seems to be aware that PC has been overtreated in the past and the field is trying to improve in that regard, but there are still no obvious answers. And he is not pushing surgery or any other treatment so far, However, I am wondering if I need to seek out someone who specializes in PC.

I think a urologist who is a surgeon is likely a "PC-specialist," but that is just conjecture by me.

From 2006 (I was 53) until 2010 I was under the care of a smaller urology practice in the suburbs. There were 3 urologists on staff. I had biopsies each year, and we agreed that AS was acceptable. But in 2010 a PSA result spiked to 5.9, and a biopsy showed 3 cores positive. The doctor wanted to do surgery. My wife and I met with him, and discussed what to expect. When we left the meeting my wife told me we were getting another opinion from the university hospital.

At the university I met with 3 urologists and a care specialist. Each had looked at my history and presented their specialty. One was robotic surgeon, another radiation (seed), and the third had the most surgeries and experience. He let me know that the results did not support surgery if the patient was following AS. He became my urologist and surgeon of choice.

That experience and one other with suburban specialist(s) and facilities reinforces what we have known for a long time (my wife worked in medical for a university affiliate.) There is more experience and investment at larger "teaching" hospitals in our area. Of course it's my opinion, but every aspect of care has been superior. My PCP is local, but when it's time for a specialist, I go to the big city.

It sounds to me that your urologist is following current standards. More discussion and recommendations are a good thing too, especially from specialists who are staying current with the advances that proliferate these days.

FYI, here's a similar thread: Facing Prostate Surgery

With any social media source, please be careful.

 

[marko]

Midpack, I'm not sure (everyone's situation is different) on why you see "quality of life" and "longevity" as a binary choice. Respectfully, might you investigate a bit more deeper?

My best friend had PC, went through the surgery of complete removal, chemo and radiation. Sure, his quality of life wasn't good for several months. But that was 11 years ago and now he's 78 and still doing great.

I had 80% of my prostate removed a year ago this month. The first four weeks were no picnic but it was definitely a short term thing.

Again, not entirely sure of your own particular diagnosis so I may be out of line here. Apologies if so.

My best and prayers for whatever you choose.
m

 

[ChrisC]

My urologist laid out the options, waiting, surveillance, RP, radiation, brachy and the various focal approaches. I have 50% cores with cancer (all left lobe), though all Grade 1 or 2, and a PSA of 4.76 (relatively low). He mostly left it up to me, and that seems to be what most (good) urologists prefer as its quality of life versus longevity - a decision the patient has to be in on.

I think quality of life is a higher priority than maximizing years for me, though DW is still trying to get her head around that. He’s ordered a bone scan to see if it’s spread (I can’t believe it has - there is absolutely no family history of PC) and an Oncotype DX GPS genomic classifier test (IMO that should be very helpful - I am a big believer in data based decisions). If those aren’t alarming, I get another PSA and meet with him again in 6 months. If it’s more serious than I think, I can always choose treatment. RP and radiation side effects are permanent so I don’t want to rush into either. The more I learn, the more at peace I am with the situation, come what may. Life goes on…

I kinda wish there was a PC thread, I am sure others here have been down this road.

And I’m sharing with immediate family, not quite sure if or how to share with close friends. There’s nothing they can do to help, so why bring them down, friends are for good times to me. And it’s still not entirely clear if this will be a minor or major turn in my life.

I've had the PET SCAN for localized prostate cancer, which didn't reveal any spread outside of the prostate. My radiologist used the latest image marker for the scan, PYLARIFY. Here's an article about this tracer, but as the radiation oncologists and the prostate surgeons told me even this state of the art tracer can't pick up microscopic traces of prostate cancer that are outside of prostate! The PSMA-Targeting Era: A Game-Changer for Men with Prostate Cancer Worldwide.

So, there's that to digest, however, the scan will definitely pick up noticeable cancer.

My Gleason was similar to yours, 3-4, favorable. My Oncotype DX score, and I was hoping for a score of 20 or below (which basically says no one has ever died from prostate cancer with that score), pushed me into the most conservative treatment posture and was a game changer for me. I think the biggest take-away from the genomic testing is that it clearly highlights scores that caution against over-treatment and for some scores counsels very aggressive, conservative treatment.

BTW, others have mentioned there prostate cancer journey in other threads, including myself and others who have posted here.