I was diagnosed with PCa in 2018. It was determined Gleason 3+3 after biopsy, so we decided on Active Surveillance.
I checked PSA religiously every 6 months and it hovered around 5 the whole time since the diagnosis. Last year during summer I believe I started experiencing waking up several times at night to pee. Went for PSA test in October and it was 5.3 so not a huge difference but my urologist decided to restage my cancer since it’s been exactly 5 years.
Welp, first he ordered MRI which showed no cancer outside of prostate so we go for biopsy and what do you know Gleason 4+3 now instead of 3+3 that was in 2018.
Urologist is of course pushing surgery. I start reading and told him let’s wait a minute and order this “new”-ish PSMA test and see what’s going on. Results came back today negative PSMA, no cancer anywhere for what it’s worth.
Where do I go from here? Do I try some type of radiation, focal or full? Cyber knife? Gosh it seems like there is a dozen ways to radiate a person.
Or.
If I go for surgery I want to get Retzius sparing version to help with incontinence and hopefully shorten erectile problem. Here’s a problem I don’t know anyone who does this type of robotic surgery in Charlotte NC. Is there someone really good around NC, maybe Duke? Or am I going to have to travel far to get this type of surgery performed? I also heard you need to find someone who’s done a ton of these not like 10-20.
Thanks in advance for your recommendations and any comments in general. I’m trying to stay positive with all of this but I gotta say dang, at 49 this is all too early feels like.
As a point of history my father passed from prostate surgery at the age of 66, the caught it way way too late. So as you can imagine I’m kinda freaking out a little.
Thansks again.
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UnexpectedPC
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Here is a good website to compare odds of cure for the major treatment paths. You have to determine your stage, low risk, intermediate, or high risk (risk of recurrence). So if you are intermediate, pull up the intermediate chart and you can see the odds of 10-20 yr survival, etc. based on the treatment you pick.
It is best viewed on computer or just print it on paper. Not so viewable on phone.
To make the graphs easier to read, i drew a dot on the endpoints of the elipses, and then drew a line through the dots. This turns the elipses into lines.
Also be aware the the graphs don’t show any salvage radiation benefit. This would boost the surgery odds up a bit.
Also beware, this is a very dysfunctional industry from my view. Loads of bad info mixed in with the good info. Same with the docs. Some of them are more dangerous than the cancer.
Yes. Treatments including brachy have higher cure rates especially as your risk of recurrance increases. Because the radiation emanates from seed inside the prostate, and doesnt pass through other organs/tissues, they can dose you slightly higher with brachy.
Also, micro-mets. The PCa cells will migrate eventually to the outer capsule edge. RT can mop up some of this.
Well, that is something I can’t put on my shoulders and decide for you. The PCa space is foggy. You must study yourself up rapidly and thoroughly. Get your own personal doctorate. Pull articles, research papers, and books, and i guess videos.
I didn’t read all the posts here but thoght i saw some mentions of bad pee performance... if you are a bad urinator you will face strong pushback from RT docs if you want this path. You can pull some articles about guys getting greenlight before RT. I have also heard of holep and turps for this. These three cauterize as they remove tissue. Also, any PCa cells that may be exposed, will face the urine channel and washing down.
Also saw some question the path of RP and then salvage RT. Look up articles on salvage RT. You can piece together some curative value to salvage RT, add that to the chart RP lines ( draw line above the RT line). Theres not alot of info on it but i saw 2-3 ref. I used like... i forget.. maybe 7%?
Don’t even take my advice as gospel, i can be wrong.
Dear unexpected PCI live on the other side of the pond and 12 weeks ago underwent a Retzius-sparing operation. It was performed by Prof Eden at a London hospital. Prof Eden is high volume Retzius-sparing surgeon. As you say you need a surgeon who has a good track record and performed lots of them.
I had 3÷4 scoring. I was at first on active surveillance and then the PSA doubled in 3 months. A second mpMRI scan showed that the tumour had increased in size so I was offered either radiation treatment (5 sessions) or the Retzius-sparing operation with nerve sparing. After much internal debating I decided on surgery since I was plagued with obstructive flow issues and the radiologist suggested that there was a possibility that radiation might make obstructive issues worse. This factor tipped the balance to surgery.
Surgery, then 2 nights in hospital, released home with a catheter, 2 weeks later catheter removed. Straight away I was fairly continent and needed no incontinence pants. In terms of flow then i would report that I now pee like a stallion and rarely have trots to the bathroom at night. There is a spot of stress incontinencein that if I lift something too heavy or overexert myself or sneeze then there is a spot of leakage but apart from that its all good. Erectile functioning since all the nerves were spared.12 weeks on then I would say that I am back out running and hence life is returning back to normal for a 64 year old person.
I would say that each persons treatment needs careful consideration in exploring the options, thinking about the pros and cons of the various procedures and then coming to a view, in consultation with your medical experts, as to what works best for you and what you consider is important going forward. I would say that I agonising over which way to jump and spend countless hours trawling the Internet and reading medical papers. It can become a bit overwhelming and a focus needs to be maintained.
In terms of the results of the Retzius-sparing op then when they did the Pathology on the removed prostate they found a second tumour. Which probably explains why my PSA level doubled. It's interesting to note that the 2nd tumour was not picked up on any of the MRI scans. Last week I had a PSA test which showed a result of below 0.025. So fingers crossed it seems to have sorted it out for the time being.
Anyway I hope this helps in terms of what I encountered on my journey with PC.
Like you my father died with cancer and my brother also has PC .
I suspect that since they have discovered that your PC is within the prostate then your selected curative treatment will fully deal with the PC.
I wish you well with everything and all the best for the future.
Thank you so much for your detailed response. I will reread and digest.
It’s sad that sounds like no one does Retzius locally in Charlotte. I would imagine doing it out of town presents challenges. Hotels, catheter removal etc.
by the way can a regular nerve sparing surgery still include sub pubic catheter. I’ve read it’s a much better way than through penis.
Thanks for your reply. It seems from the medical papers that I read, that if people go down the surgery route then the surgeon needs, as a minimum, to have undertaken at least 100 Retzius-sparing RALP operations before they start to become competent at it. They say its a fairly tricky operation because you have to go in from the top ie stomach and then back up underneath and effectively work with the robot upside down.
I looked at various you tube videos that Prof Eden posted showing in great detail what they do and how it's performed. Prof Eden aslo has a you tube video detail what to expect and his top tips in helping to make the surgery a success. I found his videos very informative and it helped me get my head around what I could be letting myself in for.
In terms of the nerve sparing and vascular bundle sparing part of the operation then in order to check that there had been no cancer cell activity on the surface of the prostate itself then once they whip the prostate out a pathologist freezes the prostate and checks for cancer cells on the outer surface. If there are no such cell present then the surgeon is reassured that they can leave the nerves running down the side of the prostate together with the vascular bundle in place and hence help to preserve the possibility of elections post surgery.
One of my big worries was the anastomosis ie the reconnection of the uretha back to the bladder and I pinned Professor Eden down as to what is the likelihood of that part not going well and he reeled of his stats of how many men out of his 4500 operations needed to be brought back in to be fixed. It was a tiny number.
Catheter, I must admit that I had in the back of my mind that I was to have a sub public Catheter fitted but out of the operation I discovered a normal Catheter but to be honest it was not too much of an inconvenience once you got used to it. I live outside London and in terms of Catheter removal then the local hospital saw to that rather than having to go back into the centre of London.
So if you do opt for surgery then you have find the right person, ie a surgeon who has a high volume of successful operations and is accomplished in the art of upside down surgery. It does seem like there are not many centres of excellence in the world and I was lucky that living near London there was on my doorstep.
I would also add that in terms of radiation treatment then again the Royal Marsden hospital in London is an outstanding centre of excellence for radiotherapy and had I opted for radiation therapy then I am sure that I would have had outstanding health care treatment which also would have cured the cancer. When asked about the percentage chance of cancer recurring post radiation then if I recall correctly I was quoted with a tiny number.
So I would have been equally happy with radiation but for my obstructive flow problems. These have been dealt with by surgery and my quality of life in terms of having undisputed night's sleep is so much better.
I believe that we are the lucky generation in that we are having our PC identified and dealt with. Whereas my father simply did not go to see doctors about old men issues and ignored it and then died of liver cancer.
I hope these comments help fill in some more of the details.
Again best of luck with it all and do not become calcified in trying to become a world expert in PC because its bewildering how much stuff is out there.
Based on my experience, I wish I had asked the urologist/surgeon the actual statistics regarding ED for the patients upon whom he had performed "nerve-sparing" robot-assisted RP. I think the same would be true for "Retzius-sparing" surgery.
In the past, Tall_Allen has often pointed out the likelihood of a worse outcome regarding erectile dysfunction and incontinence for RP versus radiation, but hasn't in this case. Here are links (or URLs) to two previous posts containing such replies from Tall_Allen; I believe there are also others:
My own experience is that I drank the "nerve-sparing" kool-aid and proceeded with RARP without knowing the poor statistical success rate for retaining erectile function overall (let alone for that surgeon), and suffer from ED as a result. If I had it to do over again, I would choose RT. However, I am thankful that my PSA has remained below the limit of detection (<0.014 ng/ml) through 5 years, and for Trimix, which for me has been an effective treatment for ED, although bothersome.
thank you so much for responses. I will take a look at TA links.
Being 49 i am definitely concerned with possible ED. My urologist has really scared me with the story where if cancer comes back after RT I’m pretty much SOL for surgery unless I do salvage and that’s apparently a huge mess on its own. That’s why I’m leaning towards Retzius.
I had five session RT. No side effects so far, a year out. I was a 4+3 also, fairly large tumor, but contained per PSMA. I found the Mark Scholtz videos very helpful.
I went to UCLA and while the urologists tell you that story, the radiation oncologists disagree. There are surgeons that will operate on an irradiated prostate. However, Kishan said they could irradiate again if needed. But this is very unlikely. Most recurrence is in the lymph nodes from micro metastasized cells. So RT vs RP is frankly irrelevant for that.
This seems to be the main selling point surgeons use to push FUD. I dismissed it.
we talk so much about negative side effects, but at least for me (I did surgery, I don’t know about rt) there was a positive side effect. I too was getting up 3 times a night before surgery. Now, after surgery (eg without a prostate) I am down to getting up once a night and about 20 percent of the time I sleep without getting up at all. This has made a big difference for me in getting enough sleep.
Definitely looking forward to that one way or the other. Not getting solid sleep sucks.
My urologist gave me Alfuzosin instead of Flowmax. Supposedly less sexual side effects. So far I’ve taken it for almost a month and don’t really see much difference waking up at night.
I just went through radiation and would be happy to answer any questions. Just send me a message. I'm 53 and mine was a 3+4 so had the option of radiation or RP. It took me a couple of months to research and decide what route to take.
I tried to do my research on both options. Since I was 3+4, I didn't need to do adrenal deprivation therapy with radiation. Had I needed to do that, I might have chosen surgery. Studies (ProtectT primarily, I believe) have shown equal results with radiation vs. RP, at least for someone with my staging. For me it came down to potential adverse effects. I think the prospect of incontinence and having to wear a pad seemed like the worst adverse effect to me. The risks of incontinence with radiation are very low but of course the flip side is that you can expect more bladder and bowel irritation from the radiation. Those are primarily short lived effects (in most cases) vs. long term or life long. Of course you never know in advance and either option might give adverse effects that weren't expected or either might go better than expected. For me, it was just a matter of what was more or less likely. Just speculating but I think for many men, hearing we have cancer in our prostate, our first thought is "get it out". Many of us are also being diagnosed by our urologist (who does surgery) and the first recommendation in my case at least was of course, surgery. I wouldn't have known about or been offered radiation as an option without reading about on my own and then visiting with a radiation oncologist.
PS if you haven't read it, get Dr. Patrick Walsh's Guide to Surviving Prostate Cancer. Very well written and helpful and they just came out with a new edition.
I started FlowMax, and stay on it to date, which has helped with urination a lot. I also had some prior issues with slow flow. I had nocturia, night time urination, for nine months as a radiation side effect. Started at 3-4 times a night but now back to normal.
Yes, I had ViewRay, but that’s harder, if not impossible, to find now. I believe Cyberknife is another brand. SBRT is the generic term. Then there are specific products. I concluded this was the best treatment with fewest risk of side effects.
Given my tumor location, brachytherapy seemed more likely to cause urinary issues. I was also able to show to myself that FlowMax improved my existing issues. So aside from nine months of nocturia, I had no other side effects.
Surgery has higher rates of incontinence, ED, and penile shortening (they pull the penile head in to connect to the bladder). I wanted no part of any of those.
Can you clarify? If your PSMA is negative what's the need for surgery?
Also, if you haven't done so have you considered getting a second opinion on the biopsy itself? I would really recommend getting a second opinion and direct look at the biopsy tissue. you can send your biopsies to Johns Hopkins for an addition direct review of the tissue. It costs about $300 and is all done through the mail. Keep in mind this can cut both ways, as they could come back with a higher grade of cancer, same, or lower - all of which can help guide you in your treatment decision. I sent mine there and they came back confirming the Gleson 6 score but downgraded the cancer to one core from three. Overall, it's important not to have a knee-jerk reaction to the word "cancer" and just immediately cut it out. Take your time. Decide what works best for you not your doctor.
I'm still waiting on my urologist to call me and interpret PSMA for me, however based on reading it myself on line it states "Negative PET scintigraphy. No PSMA positivity" F18 Pylarify Pet Ct Scan...
WHat does that techincally mean? That the scan didn't find cancer anywhere or just anywhere outside of prostate?
MRI with and without contrast showed Pyrads 2.1, modedarate enlargement of transition zone. No adenopathy. Seminal vesicles normal in signal and symmetric.
Biopsy showed out of 12 sections: 9. Right Apex 3+4 10% of one core is 4. and Section 12. Right Apex Lateral - 4+3 with 3$ of one core (patern 4+90%)
I'm lost do I have cancer? I'm pretty sure I do, just how bad?
I think it's a great idea to get J.Hopkins to second opinion biopsy. Let me see if i can arrange that ASAP.
Anything else stands out from what I listed above between PSMA, MRI, Biopsy report?
Also how much time do I have to educate myself in all this? Some say up to 6 months, feels too long...
I completely understand how you feel. It's incredibly stressful, but what I learned is that it's important not to have a quick knee-jerk reaction and just cut it out immediately. Your situation is a little different than mine because your father had prostate can. I have no history of it in my family. That said, my Gleason, six score could change any time as well. Multiple opinions are a very smart thing to do. not saying that your urologist is bad, but what they were from is just that opinions . I was diagnosed Gleason 6 Oct 30 2020 & My urologist told me basically that surgery was my ONLY option. He stated that radiation wasn't because of my age and that if the PC returned, surgery wouldn't be possible I was 55 and my psa was 5. needless to say, I freaked! So I did some massive research and found many other treatments available. Of course treatment options are based on your scores - Gleason, number of positive cores, and tumor(s) grade. Active Surveillance is a TREATMENT option - and only when I brought this up to my urologist did he reluctantly acknowledge this! So then I got multiple other opinions - a new urologist, an oncology surgeon and a radiologist - all of whom, after reviewing my scores, stated they would not recommend treatment at this time. The radiologist said he COULD if I really wanted, but didn't recommend it. There are newer treatment options like HIFU - High Frequency Ultrasound and FLA - Focal Laser Ablation, both of which target specific cancer areas of the prostate and don't destroy all the tissue, so men don’t typically have urinary incontinence or ED. The one side effect is dry orgasms - but hey, dry orgasms are better than no orgasms. of course these treatments also depend on number of tumors etc. so I think it's smart to send your biopsies to Johns Hopkins for second opinion talk to numerous doctors of multiple modalities so you can figure out what may work or not work for you.
Also you're young, I don't know if you have kids but if not, something to consider before any treatment.
There are other centers of excellence that would give you a second opinion. There has been concerning conversation about JH that may or may not be factual. One of the pathologist is on indefinite leave and there has been speculation regarding JH after this departure. Regardless, why take the risk. Use MD Andersen or other than JH. IMHO.
Have you gotten a second opinion about the Gleason score? That would be the first thing I would do if I was in your position. It could be another radiologist might see it as still 3+3, so you might opt to continue with active surveillance for a while longer. I am not a doctor, but it does seem that your prostate cancer has been pretty stable since it was first diagnosed. Concerning the urinary difficulties, a prescription for Tamsulosin (Flomax) might help.
Thank you. You’re the second person with a suggestion for second opinion of biopsy.
So how does this work?
Who do I call and request second opinion for my biopsy? Is it my primary physician who I’m friends with? Is it urologist who is honestly not as involved as I’d like him to be lol or who?
I would say that at a minimum, ask for the second opinion at another urology practice, assuming there is more than option for you. You would probably want to select one in your insurance network to minimize any additional cost. The other person suggested John Hopkins for the review, but that would probably be the most expensive option. Second opinions on something like this should be covered by insurance (assuming the reviewing doctor is in your insurance network) - check with your insurance company to confirm this. I think that each urology practice employs laboratory specialists who are doctors to review the biopsies - the urologist performing the biopsy doesn't do that himself or herself). Just contact the other urology practice and tell them you want a second opinion on your prostate biopsy and they can take it from there. Good luck - I hope a review changes your diagnosis back to 3+3!
Retzius-sparing , and nerve-sparing are two different things/areas along the prostate.
As far as retzius-sparing, that is dependent where the tumor exists in the prostate. Too close to the bladder, retzius gets cut off.
I had a regular fish mouth bladder neck reconstruction, and continent in 6 weeks. Gotta work the Kegels BEFORE surgery.
Nerve sparing too. Cancer too close to the edge, nerves go too. With nerve sparing, the surgeon leaves just a little bit of the prostatic fascia that the nerve attach to.
That depends on the skill and patience of the surgeon. Alf the result of the MRI before RP.
I saw you mention sub pubic catheter. In my eyes the catheter was instrumental in keeping the anastomosis perfectly in place to heal. You want flow after, that will ensure no scar tissue internal to the urethra. The surgeon sews the anastomosis with the catheter in place. Imagine the stiching in your Levis pant leg turned inside out. 12 days in penile catheter was worth it.
BTW, I am not a doctor, nor do I claim to be one. I am just passing along my positive experience with my robotic RP!!!
Your surgeon will make that determination based on your MRI.
I know mine was high towards the bladder, and he explained the "fish mouth" bladder reconstruction. Im continent, but lost some bladder volume.
His first question during my 3 follow up visits was "how's your flow"!! I told him like when we were having distance contests in the elementary school urinal.🥸
Also when determining the amount of surgeries the surgeon has made, consider how many open they have done _before_ robotic. When my doctor said he has done over 3000 open surgeries and over 500 robotic, I knew he could do it with his eyes closed. The robotic count wasn't crucial.
BTW, I had a Catheter after my RP during the pandemic. My Doc told me I could remove it easily with a very simple process. One of the easiest things I ever have done. There are on-line video demonstrating same.
1. How do I go about ordering a second opinion for biopsy of if I only have one urologist? Do I just look up another one in town and go see him and go through the whole shpill just to ask him for second opinion on biopsy itself?
2. My urologist today emailed me back saying he doesn’t know anyone who does Retzius-sparing type of RP. Where do I go? I tried to google but I only get a couple of places that even list it on their site. What is the closest center of excellence with Retzius experience around Nortg Carolina? Does Duke perform Retzius
My primary physician referred me to Duke yesterday so I’m waiting to hear from them. So I do see dr Armstrong or George? Is one more specialist in something over the other? Are they both surgeons and if I chose Cyberknife for instance is that done at Duke? Do they talk to each other?
Sorry for all the questions. I have to admit I’m a bit taken back by luke warm concern I’ve felt from my urologist. I keep watching these videos on YouTube how the doctors work as a team to come up with the best approach as a holistic treatment plan blah blah. My urologist said I do surgery if you don’t want it go elsewhere.
Hi unexpectedPC, You have received a lot of good advice here. May I add my two cents. Getting a second opinion of your biopsy is not hard. I recommend John Hopkins as they are a center of excellence and they were a front runner in robotic surgery for Pca,
You don't need to find a new urologist. Your current urologist has your biopsy material. Call them (you don't need to make an appointment). Ask them to please send your biopsy material to JH for review.
Before doing that, contact JH and get a Dr on the hook. I used Dr Misop Han. He's one of the best. The Medical Centers will take care of transferring the biopsy material. They do it all the time. You do it all from the comfort of your armchair.
I was diagnosed in 2020 with a GL7 T2a in 11 of 12 cores. High risk. Like you, I did not know which treatment to pursue. It's overwhelming. After consulting with 7 different professionals, I chose RT w/ 24 mo of HT. Other than dry organisms I have no side effects. PSA has leveled off at .5. My MO considers it neutralized.
UROs always seem to push RP. Be sure to talk to a RO (Radiation Oncologist) before making a decision. RT is as good as RP in most cases with a lot less risk of permanent damage. I did not have the problem that you have with urine flow so that may make some difference in what you decide.
I have made an appointment for multiple Disciplinary visit at Duke in early March. I want them To second opinion everything and then go from there. Would you still do JH on top of Duke ?
Probably not. You know you can get too much info and find that confusing. I would recommend that you consult with an RO before making a decision to cut. Most UROs will not recommend RT.
Another thing to consider is that surgery only treats what is surgically removed. You will find many men on this site that have had RP and a few years later they are back doing RT and maybe HT. Everyone's case is different, but an advantage of RT is that it can treat a larger area than just the prostate.
My dx was high risk. That means high risk of micro mets. Surgery will do nothing for micro mets. Micro mets are cancer cells that have already escaped the prostate but are not detectable by any diagnostic means. Even though I had no evidence of mets I chose RT & HT hoping to knock out any micro mets that may be out there.
You are on the right track brother. You have time to self-educate. Stay cool! Keep your ears and eyes open! Trust the Lord!
I really encourage a second look at the biopsy tissue. Let your urologist know to release it to JH (or wherever you decide) and also here's the link gor second opinions at JH Pathology, which should give the info on how to request it. It's not expensive, costs about $300
I was staged atGleason 4+3 also. My urologist, David Kaufman, suggested the Focalyx cryogenic treatment. Very glad he did. I had the procedure last month. Outpatient treatment, minimal side effects. Pretty happy so far.
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In shock. What to expect?
Low psa, but have pca
My turn for advice
1yr Update Since Diagnostic
Post-HIFU cancer
