Good Morning. I am new to this board. It was suggested by my wife, who had been involved in the forum for many years.
So, to summarize, I am 72 years old. DX in 2016 with a Gleason of 6. I've been practicing 'active surveillance' since then. Fast forward to October of last year, with one or two plugs now showing Gleason 7. PSA is down to 5. I had intended to continue monitoring, but don't want to get a surprise one day of metastasis. I've been exploring HIFU option, but I'm no longer a candidate. I cannot have an MRI because my recent exchange of my pacemaker pack left a broken lead in my chest. That precludes me from ever having an MRI for anything. They cannot do HIFU without that diagnostic tool. So that leaves radiation (I believe that will cause more side effects), seeds, or other options of that type I'm not leaning toward. So now I'm thinking I'd just like to have it removed. Can any of you provide me with your experiences? Recovery, side affects (how long did they last), urinary incontinence, etc., etc. I also wanted to start HRT, as my T levels are only 85 for the last 5 years or so. (Note: my only reason for wanting to do HRT is the repercussions of low T that I experience: depression, insomnia, etc.) Obviously, no one will approve that unless the prostate is removed.
As a side note, I am, and have always been physically active. I train 5 days a week, eat clean, and I continue my supplement management for an additional approach to the prostate situation. Just looking for experiences so that I can have all my ammunition ready for whatever I choose to do. Thank you all so much for taking the time to read this lengthy semi-bio. I wish you all good health. God Bless!
P.S. If I choose removal, I'd be looking for an experienced, reliable, trustworthy physician/surgeon in the Detroit, MI area. I have already consulted with Dr. Rogers out of Henry Ford, and have researched robotic surgery and HALO. I believe HALO also needs MRI diagnostics.
Hello @AIKIDOGUY (I trained in the art for a free years)
Fox Chase Cancer Center in Philadelphia uses a higher frequency ultrasound that gives much better resolution over the typical, that they use in place of MRIs for monitoring while on active surveillance. They are also experts in brachytherapy, which can be almost focal in treatment. You should ask for a consult. They are a cancer center of excellence. Nothing ventured nothing gained.
edited March 26 #3
For someone who was diagnosed seven years ago, your low testosterone level is probably the reason that your PSA is still unusually low as well. In my non-professional opinion, you could probably get away with active surveillence forever.
I suspect that your low T level is more of a concern for you than the actual cancer or risk of metastasis, so you are willing to consider unneccessary surgery just to get the chance to drink from the fountain of youth again with HRT. Apologies if I have assumed wrong.
I was diagnosed in early 2015 at the age of 52, had my prostate removed in the middle of that year (PSA was 10.6), regained sexual function quite quickly and was only losing a few dribbles of urine after a few months. I then went through salvage radiation in early 2016 because my PSA was still 0.75. My PSA didn't bottom out until mid 2018 (0.04) but it is now 0.57 and rising - I am experiencing what is known as a biochemical recurrence. This happens in about 30% of cases after prostatectomy. For me, the next step is Androgen Deprivation Therapy, which, if I am kept on it for a lengthy time, will virtually turn me into a menopausal woman with a useless d!ck.
Incontinence wise, I was almost dry for a few years but over the past few years, it has gradually worsened and I now lose around 150ml per day, managed with pads. I intend to undergo a corrective procedure later this year. Penetrative sex wise, over the past few years it has been non-existent. I gradually needed assistance in that department and drugs like Viagra didn't work for me. I later had a very bad experience with penile injections and coupled with worsening incontinence, it eventually became easier just to forget about it. At the end of the day, IT'S NOT REALLY THAT IMPORTANT. There are other ways!
You're 72, man. It's your choice whether to go ahead with surgery so that you can begin HRT and act like you're 22 again. But if you become physically incapable because of the side effects of the surgery, is it worth it?
Again I will apologise if this came across as a bit brusque, I just wanted to give an alternative perspective.0
On_A_Journey, so sorry to hear of your ongoing struggle. Sounds like you have come to terms with what is and made the best decisions for your situation. For me, the HRT has nothing to do with trying to defy the aging process. I'm quite blessed and content with my lifestyle and how it contributes to my overall well-being for, not just myself, but my family. So my only reasoning for the HRT was to combat the severe insomnia, lack of concentration, and depression. Working around it all as best as I can and enjoying life as is.
Removal of the prostate was really only a thought after my last visit with the doctor. That's when it was determined I wouldn't be a candidate for the HIFU. Given that I can't have an MRI, 'surveillance' is somewhat limited, so my concern would be 'has it spread'. And unfortunately, there's no way to know that without the diagnostic tools that are typically used.
Your input is greatly appreciated. Sending prayers for continued health. Hope to hear from you again.0
AIKIDOGUY, thanks for clarifying your situation. All good.
Good luck with whichever decision you make.0
Following up on my post above, this is the physician finder for the company that makes the higher resolution ultrasound equipment. Resolution is proportional to the frequency of the ultrasound, so when frequency goes up, resolution goes up. Theirs is up by a factor of 3 over traditional ultrasound, so resolution is 3x better.
Here's some interesting stuff from a research paper comparing the micro-ultrasound and MRI: My bold below.
Micro-ultrasound is a novel high resolution ultrasound technology aiming to improve prostate imaging and, consequently, the diagnostic accuracy of ultrasound-guided prostate biopsy. Micro-ultrasound–guided prostate biopsy may present comparable detection rates to the standard of care MRI-targeted prostate biopsy for the diagnosis of clinically significant prostate cancer. We aimed to compare the detection rate of micro-ultrasound vs multiparametric magnetic resonance imaging-targeted prostate biopsy for prostate cancer diagnosis.
Materials and Methods:
We performed a systematic review and meta-analysis of diagnostic accuracy studies comparing micro-ultrasound–guided prostate biopsy to multiparametric magnetic resonance imaging-targeted prostate biopsy as a reference standard test (PROSPERO ID: CRD42020198326). Records were identified by searching in PubMed®, Scopus® and Cochrane Library databases, as well as in potential sources of gray literature until November 30th, 2020.
We included 18 studies in the qualitative and 13 in the quantitative synthesis. In the quantitative synthesis, 1,125 participants received micro-ultrasound–guided followed by multiparametric magnetic resonance imaging-targeted and systematic prostate biopsy. Micro-ultrasound and MRI-targeted prostate biopsies displayed similar detection rates across all prostate cancer grades. The pooled detection ratio for International Society of Urological Pathology Grade Group ≥2 prostate cancer was 1.05 (95% CI 0.93–1.19, I2=0%), 1.25 (95% CI 0.95–1.64, I2=0%) for Grade Group ≥3 and 0.94 (95% CI 0.73–1.22, I2=0%) for clinically insignificant (Grade Group 1) prostate cancer. The overall detection ratio for prostate cancer was 0.99 (95% CI 0.89–1.11, I2=0%).
Micro-ultrasound–guided prostate biopsy provides comparable detection rates for prostate cancer diagnosis with the MRI-guided prostate biopsy. Therefore, it could be considered as an attractive alternative to multiparametric magnetic resonance imaging-targeted prostate biopsy. Nevertheless, high quality randomized trials are warranted to corroborate our findings.
I learned something new. Thanks, OP, for your question!1
Hi, On_a_Journey -
If you dont mind me asking - were there any other factors in deciding to resume treatment? (any tumors, biopsies, etc)? I'm in the middle of also trying to determine my treatment method is why I am asking. Not to sound judgemental... just trying to understand if a rise in PSA could simply be a result of residual prostate growth and not cancerous. Again, best wishes to your health.
Ultimately, I am trying to determine with my Gleason 7, single 1cm legion if i should pursue brachio or another radiation. Seems like I need to consider my options for a second treatment if something happens in several years since I am 51.
Clevelandguy Member Posts: 825 Memberedited March 29 #10
To answer your original question(s), I had surgery back in 2014 to robotically remove my prostate, I was 3+4. Doc said he got it all and I was on a catheter for about 8 days. I started out with a heavy pad and progressed to a light Depends pad which I wear to this day. Stayed overnight in the hospital and went home the next day. No infections or problems other than the uncomfortable catheter. ED improved over about a year and a half and I have a useable Johnson now. I used Viagra for a while to increase the blood flow which I feel helped. I still drip occasionally when I move a weird way or strain, that’s why I need the light pad. My PSA has been undetectable since my surgery and I pray it stays that way. From what I have read here my results have been typical of some but not all, some better, some worse.
Surgery or radiation is a choice up to you and your doctor team. In my opinion the end result should be removal/neutralization of the cancer by any proven method that has the best chance of success.
If you don't mind traveling a couple of hours both the Cleveland Clinic and University hospitals in Cleveland have excellent doctors/facilities to deal with your cancer. I had my surgery at University hospital Sidemen cancer center. Let me know if you need anymore info on who to contact. Good luck………
edited March 30 #11
No other factors. Yet!
I believe that my rising PSA is due to residual cancer cells left behind from the surgery to remove my prostate gland that are now multiplying. The location of these cells has so far remained undetected by PET scans.
Ideally, I will keep getting periodic PET scans until the cancer is detected where it could then possibly be treated with radiation in an attempt to cure me, depending on the location of the cells, i.e., in a node. But due to an ever-accelerating rate of PSA increases every few months over the past year, I could very well start ADT before anything is physically detected. That day hasn't come yet; my next blood test is almost due and I'll see my oncologist on April 17th for the results. If my PSA is no longer accelerating like it has been, I'll hold off and maybe get another scan the time after that to increase the chances of detection, but if it is, I will seriously consider ADT sooner rather than later BEFORE the horse bolts. Even if I waited until my PSA was well north of 1.0 there's no guarantee that a PET scan will find anything, and at current rates, my PSA doubling time could be in the high-risk category by then.
I know that there is a school of thought that ADT should not begin until metastasis is detected, just as there is one that says not to bother with PET scans until a certain PSA threshold beyond the bare minimum is crossed. Each to their own.0
lighterwood67 Member Posts: 351 Member
Gleason 4+3=7. RP March 2018; PSA undetectable for 5 years now; continent; intimate with wife. Good luck on your journey.0
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