54 with 3+4 Gleason, diagnosed end of May 2023. Urologist at St. Peter's Albany did the "car salesman" push for surgery, trying to schedule it in same visit as giving me results of biopsy. I think I am in shock as well as overwhelmed with all the choices. Gone from excitedly planning my retirement in 3 months to being terrified I'll be incontinent. Dr. said only 1% of RP patients stay incontinent 6 months out from surgery. Is that true? I realize everyone's experiences vary. Thanks for your time.
Overwhelmed Newbie...: 54 with 3+... - Prostate Cancer N...
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Joewheat
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No, it's not true. About 20% have permanent incontinence, and among previously potent men who have nerve-sparing surgery, 65% have permanent impotence (and most of the rest have reduced erectile function). The oncological results are no different from radiation.
Some men with small amounts of Gleason 3+4 are still candidates for active surveillance. Have your biopsy slides sent to Epstein's lab at Johns Hopkins for a more complete analysis:
pathology.jhu.edu/patient-c...
Above all, do NOT make any decisions for several months. Prostate cancer is very slow-growing at this stage and you have plenty of time to talk to a variety of doctors (I spoke to 6 and took 9 months before deciding). The initial panic will lessen and you'll be able to make a more rational decision with time and talking to experts.
Thanks for your fast reply. Looking for a new urologist. How do men find a highly recommended surgeon or radiologist? I asked the doctor I saw & he said "nobody does that anymore" when I asked about radiation. Do you just cold call cancer docs?
You don't need referrals for surgeons or radiation oncologists (not "radiologists"). You may have to travel to see the best - there are a lot in the NYC area. If you can get there for second opinions, or even televisits, I have a few suggestions.
MSK is doable - few hours down the Thruway. Any suggestions for their Westchester location would be great. Thanks for all the advice & calming responses.
I think MSK requires their own pathologist review your biopsy slides, who I think is equal to Epstein's lab. The head of their AS program, which is excellent, is Behfar Ehdaie (but let's discuss his HIFU clinical trial if he tries to sign you up). Sean McBride does their SBRT, and he is also excellent. I think they allow telemedicine, which should be fine for initial appointments. I'd recommend Ash Tewari at Mt. Sinai to discuss surgery.
My personal feeling is that a surgeon who claims that nobody does radiation anymore is a surgeon from whom you should flee. He's either lying or is woefully ignorant, either one of which disqualifies him. I agree with the advice to go to a major academic medical center where they offer both surgery and radiation and will put your case before a tumor board made up of various specialties. Like Tall Allen says, there is no need to rush, particularly for someone like you who isn't high risk.
That is enormously irresponsible of him to say "nobody does that." Radiation treatment has only grown in popularity. Please look at my posts and replies. I had 3+4 too, and I had radiation -- LDR brachytherapy--at MSK.
Well stated Tall_Allen. When I was diagnosed back in 2104 it was around the same time my wife passed away. I was near suicidal, but was brought around by a special lady who saved me from myself. My Uro doctor was only interested in one thing, the $45k money from the insurance. So Joewheat must take his time to get other opinions, so may I suggest you post your question to zerocancer.org/ for further convincing replies.
FWIW, my brother was in his 50s when he had his prostate removed. (Also 3+4.) This was about eight years ago, and he’s doing fine. He rarely has continence issues, nothing that wearing an occasional light pad can’t handle. There is one person’s story for what it’s worth.
And plenty of people are indeed still getting radiation. Radiation has come along way. My husband had it this past winter. He looked into getting surgery from the same person my brother saw in the Philly area, but it turned out he wasn’t a good candidate.
Have you details of your biopsy report? how many positive cores? amount of pattern 4? see videos:
Dr Scholz Gleason 3+4
youtube.com/watch?v=YoTiwJM...
3 out of 12 prostatic acinar adenocarcinoma, % of Gleason 4 is 5%, 10% & 30%. 2 out of 12 PAA, can't be graded due to small focus
Nothing felt on DRE
Told it's intermediate risk clinically localized prostate cancer
PSA 10.8 in April, 10.0 in May
Biopsy at end of May 2023
DAMN, did I miss something or are you possibly basing your future life on a crappola TRUS Biopsy with no 3TmpMRI or other diagnostic aids performed????
As a 5+5 since 2015, just saying you have lots more things to check out before treatment.
Not sure what level the MRI was, but it was from 16 months ago. I did ask if I should have other tests done like PET scan or genetics but was told I didn't need them & they were for worse cases than me. My eyes are definitely OPEN now!
Thanking my gut & my lucky stars that I balked at immediately scheduling surgery & posted here! I have a lot of reading to do and appointments to make. Thank you all!
IMO, 16 months is a long time if biopsy was just a *3 out of 12 with 3+4 Gleason, diagnosed end of May 2023.* Another MRI and a guided TRANSPERINEAL BIOPSY could be something to consider since a TRUS samples VERY LITTLE of a prostate.
My pirads (?) score was a 2 so i thought i was in the clear until I got biopsy results. Another MRI is definitely on my list. Will have to read what 3tmp is & make sure I go where they have that. I'm thinking MSK is a few hours south of me so I'm going to try there.
*The magnets in use today in MRI are in the 0.5-Tesla to 3.0-Tesla range, or 5,000 to 30,000 gauss. Extremely powerful magnets -- up to 60 Tesla -- are used in research. Compared with the Earth's 0.5-gauss magnetic field, you can see how incredibly powerful these magnets are.*
You were bicycling a lot I take it? So was I. I got 4+4 with one bone infection.
Do you think riding has causitive effect on prostate?
rural78 wrote -- " ... Do you think riding has causitive effect on prostate? "
If so I'm thinking every Pro Rider would have PCa and I doubt that the 8,000 to 12,000+ miles a year I had been riding had anything to do with the 5+5 in my prostate. Recently did read that there might be a connection between Parathyroid Tumors and higher Gleason Score. Turns out I had 2 P-T's plus a nasty Goiter. Dr. wanted to remove the whole thyroid but my PCP told him NO so only the right half was removed along with the 2 Parathyroid T's and guess it's just coincidence that the right half of my prostate had the GL10 tumor.
It's a bit past 9PM right now and I have the bike lights all charged, icy cold Bud Zero ready to go in the water bottle, my kit ready to put on and then get out shortly after midnight for some hot SW FL night time 80°F riding.
Be well and keep the cranks spinning. 👍👍
Wow! Thanks for the link to this. I learned more watching 2 videos with Dr. Scholz than my meeting with my doc. Great resource!
Depending on the volume and aggressiveness of your cancer that a transperineal biopsy will show as suggested by addiscted2cycling, a type of ablation may be possible. There is FLA, focused laser ablation, HIFU, high intensity focused ultrasound and cryotherapy.
If you are a candidate for an ablation therapy, should cancer return, surgery radiation and even ablation are treatment options.
Copy everything between the lines and place it in your search bar to access an article in which Dr. Behar Ehdaie speaks about ablation therapy.
______________________________________________________________________________________________
High-Intensity Focused Ultrasound (HIFU) Can …
mskcc.org/news/high-intensi...
WebJun 14, 2022 · The phase 2 trial, led by MSK urologic cancer surgeon Behfar Ehdaie, looked at a particular type of HIFU treatment, also called MR-guided focused ultrasound (MRgFUS), in men with intermediate-risk cancer. The …
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Currumpaw
in reply to Joewheat
Doctor Scholz is great. I watched a lot of his videos when I was going through my prostate cancer journey.
The incidence of incontinence is greatly related to the depth of experience the surgeon has with the equipment used. First timers with less than 300 procedures under their belt can have a failure rate as high as 30%. Surgeons doing only prostatectomies one or two per working day for the latest 10 years or more can bring this number down to less than 5%. Some aggregate the number of open procedures the did before switching to robotic techniques with the latter ones. This can create a wrong impression. Anyway, the 1% you have been told, is not a realistic performance by anyone.
There are other factors which increase the likelihood of incontinence. The location of the cancer primarily. As with ‘nerve sparing’ for erectile function, removal of all discernible disease takes precedent. Although perhaps surgeons should check with the patient first-weirdly (imo) some would rather preserve continence-but especially erectile function-and take their chances with the Pca.
Of course, so many failed prostatectomies are followed by salvage radiation, which serves to stop any further recovery of continence at its initiation.
London441, I am deciding between prostatectomy and radiation and would like you to elaborate on your comment of 5 days ago (around July 13), "Of course, so many failed prostatectomies are followed by salvage radiation, which serves to stop any further recovery of continence at its initiation." Surely, if the radiation were targeted away from the bladder, recovery from incontinence may continue? Thank you for your insights.
RO’s always warn patients that any recovery from incontinence they are experiencing post RP will ‘freeze’ when radiation begins and it will remain that way. Certainly was true for me. Others may know more.
Long term incontinence remains a statistically uncommon side effect of RP, less than 5%.
Permanent ED is far more common.
Thanks for replying so swiftly, London441. I am "lucky" that my ED came long before my prostate cancer was detected, so that is no longer an issue (I have a penile implant).
I am aware that radiation does damage healthy cells (far less than it damages cancerous cells fortunately, which is why it is used). I that, for me, figure urinary incontinence is preferable to bowel incontinence (which I believe is more common with radiation than with surgery). So, I am leaning toward prostatectomy. It provides tissues for analysis and though a 100% favorable outcome is low probability, it is high value.
Urinary incontinence from surgery is more common than bowel incontinence from radiation but both are rare results of either treatment. We do have to take our chances somewhere. Unless I know for sure that I have metastasis outside the surgical opportunity, I hold onto the one in seven chance of surgery leaving me 100% cancer-free. My PSMA-PET scan did not reveal any metastasis (though I do know that a negative result is not a certain indicator/proof). So, I lean toward surgery. But I am still vacillating between the two options.
Pelvic-wide radiation with androgen deprivation three months before and after OR radical prostatectomy (including seminal vesicles and nerves). I do not like the idea of losing lymph nodes, though.
Thanks for your input and thanks to all who may contribute thoughts on my dilemma.
When Tall Allen says incontinence is more like 20% than 5 I’m inclined to believe him. My incontinence was bad enough for me to get a artificial urinary sphincter at around 20 months post RP. It works well. Some men simply live with heavy incontinence or wear a catheter all the time. I don’t understand that and don’t want to. Incontinence is miserable.
Everything has its risks. Someday there will be better solutions, but it looks like surgery and radiation will still rule the Pca primary treatment world for the foreseeable future.
You are just the latest of the many millions of men who feel totally overwhelmed when diagnosed with PCa. I know I was overwhelmed, confused, distraught, you name it. Please don't feel rushed and don't let anybody push you into anything. It's really good that you know your % of gleason 4.
I was diagnosed in 2018 with 3+4 but slightly less 4 than you. I visited ten docs (mo's, ro's and of course Urologists). I studied a lot, read books and attended several different support groups, one at Mayo. I had a very large prostate and was convinced that radiation would be problematic for me. I chose robotic RP and interviewed five different surgeons, some really high volume guys. I chose a surgeon I was comfortable with, highly skilled and experienced. The recovery was pretty easy and I was completely continent at the 6-7 week mark. Reasonably good erectile function took much longer and a lot of work. I have had all undetectable PSA's since surgery and am very happy with my decision.
No question, Urologists like to do surgery. Radiation and imaging have come a long way in the past 5-10 years. I never seriously considered any of the focal therapies although I visited a Doctor who does a lot of HIFU. I'm glad you got away from your original Urologist; I had to do the same thing. You didn't mention a MRI so you probably just had a random biopsy. With one core of 30% G4, you probably don't want to wait too awfully long for your treatment but IMO, a few months from now is probably very safe. When I was in your position, I had to get away from this crap occasionally. For me, that was surfing or golf and I'd come back refreshed with a better perspective and got back to work. You are going to be just fine and I wish you all of the very best.
Hi Joe, I'm 55 and with some of the same details. There's a lot of knowledge here and some folks have already given you helpful responses. But, I'll repeat what Tall_Allen noted and do NOT make decisions immediately. First thing you shoudl do is get a second reading of the pathology report. My 3+4 became 3+3 after a delayed 2nd reading and this is apparently quite common. Many people here mention Epstein at JHU as the guru, and it is not an enormous expense. Good luck and hope you are soon moving forward on your anticipated retirement plans and this doesn't wreck havoc.
I agree with these comments, only thing I would add is that when proper imagining and biopsy is done correctly, the statement that you've got plenty of time does not seem to apply if the tumor is right at the edge of the prostate and is agressive. I lost six months at one hospital then moved to another (still my insurance wouldn't pay for the MRI), but in my case is was then part way across the median and I had neural invasion. So location can matter in terms of how much time you have. Still wish I hadn't lost those months.
I was lucky - fully continent at the 10-day post-op point, as soon as catheter removed. So do your research. Speak to an Oncologist about radiation therapy (external and brachytherapy). Maybe also consider a second opinion that is less pushy. With slow-advancing PC, you are fortunate to have time to make a well-informed decision. Wait for the biopsy results to see the extent. If fully contained you have more time to decide.
hi Joe, I was rested and diagnosed last year (same numbers) but core sectors vary with all of us. None of us came into this knowing much of anything unless of course those with medical backgrounds or direct family experience. The shock will go away then you will have a clear mind to work out your strategies. A second opinion may be in order if you’re not comfortable with your caretaker. Some become callus from repetition of protocols. I felt rushed as well and I spoke up and reminded my urologist while his protocols were old hat for him it was all new to me. He took a pause and realized a little time was needed for decisions to be made and the only person to make them was me. Take a breath and gather your information, gather opinions from those you value. Find a comfortable support group and listen to every voice then ask every question on your mind. Still after all that we will be here.
Similar situation/age here. Was Gleason 4+5 and had RP in April 2021. I spoke with several surgeons and was fortunate to be in a position to book a very experienced surgeon to a robotic RP (he was one of the first adopters here in Australia with the Da Vinci system and has performed over 4000 of them).
The procedure did require taking some of the nerves, but the recovery went well. Almost zero incontence after the 6 month period (sometimes slight dribble when doing heavy squats or just really fatigued), Erectile function is pretty much back on par to pre-surgery.
Things I considered and did
-- I was still relatively young (54) and fit. I knew mentally I would do the exercises to rebuild and that I would be consistent. I was starting off on a strong base, which is an important consideration.
-- I did a lot of core / kegal work, before and after.
-- Lots of "self-stimulation" and pumps to help rebuild erectile function. This did take a bit longer due to the nerve sparing, but was pretty much back on track after 12 months.
-- I used Sauna/ IR & heat/cold therapy during the process to try and help stimulate nerve growth. Also took Viagra and Cialis.
-- I found THC oil to be very beneficial
-- When I was able, I hit the gym hard and lifted heavy weights. Besides trying to build muscle, this also raised my Testosterone levels, which also helps the process a lot.
Most important though is a good surgeon if you. go RP. If you have a good surgeon that does his part well, the chances of a better recovery are obviously higher.
All the best in your journey.
As someone who is Gleason 9 and was diagnosed in 2019 the best advice I can offer is that you should assemble a PCa specialized team at a PCa Center of Excellence that includes a urologist, a medical oncologist, and radiation oncologist. Together, they will offer a balanced analysis and explain why one treatment may be more appropriate than another.
In other words, get another opinion. Best wishes for a favorable outcome.
PCa warrior ribbon
A Urologist is a surgeon, and will more than likely recommend surgery. You should be looking for a Genitourinary Medical Oncologist, who will be your quarterback for your treatment options.
I was newbie last autumn, gleason 3+4, 24 core tp biopsy, 8of 24 cores, 7 grade 3 1 low volume 4 opted for AS.No symtoms psa/density at 4.2/0.08, had 3 psa all at 4.2, repeat mri scan/biopsy at 1 year.
Still wonder if I'm doing the right thing but to be expected mentally but I'm sticking with it til told otherwise urologist just wanted to take it out in UK NHS so he had no financial incentive and seemed anti AS to me during our chat.
Oncologist laid out hhe options AS or 5 sessions SBRT no adt due to carfiovascular risk.
Family history says CVD will get me 1st anyway wish I had a crystal ball
Everyone here understands what you're going through. It's quite a ride even in the best of circumstances; not something anyone would wish for. Yes, it's all overwhelming and scary. Your life will change. That being said, getting control over what you can do is important; it's the "on my god, I'm gonna die" feelings that send many into a tail spin. So, in response, get second and third opinions - from urologists (who are surgeons, btw - they cut. That's what they know. That's what they do), radiation oncologists (diff kinds of treatment available with results as good as...if not better than surgery. Check out Prostate Cancer Foundation for comparisons of treatment results), and medical oncologists (for a less biased evaluation of your condition and treatment options). Do your research. Tons of info out there (and here). Make sure you've got people to support you in this. It ain't easy.
Good luck to you.
EdinBaltimore
worst advice I ever got from my urologist - “you can’t figure it out on your own so just find a doctor you trust and go with it”. Needless to say, that was the last time I saw him. I did my research, got about 6 different opinions from different doctors, and made my own decision. Don’t let anyone steamroll you!! You are your own best advocate.
Lots of very helpful replies already. I will just reiterate that getting the analysis and second opinion from Epstein at Johns Hopkins is the first step. If it confirms or downgrades your current results, you should investigate making appointments with different specialists.
If you have access to NYC, I firmly recommend MSKCC. I was first diagnosed with G6 PCa there, was on AS for about four years, and then eventually chose SBRT with Dr. Zelefsky. Before making the decision, though, I met with different doctors and discussed surgery, brachytherapy, and SBRT.
You have received some great responses. There is a steep learning curve regarding options after diagnosis which can be overwhelmng in addition to the diagnosis. This group is great for insight into treatment options. Its ok to feel a bit adrift as you are weighing your options, but take the time to make an informed decision and don't look back. Once you decide on a treatment course I think you will find a level of calm at having a path forward. PCA is not a walk in the park but this group will do its best to keep you out of the poison Ivy. I live in Southern New England which was fortunate as I had Dana Farber, Fox Chase and MSKCC all in a reasonable distance. I went with MSKCC and have a MO, Uro, and MO which helped me make an informed decision without being pushy. Take a breath; you have multiple good options for treatment.
I had RP in march of 2022 and I am fully recovered as far as continence. However, I have reduced ED.
Hi Joe,
You’re getting so much great advice here, as I did when I was freaking out 18 months ago, that I have nothing to add except take your time, trust yourself, and be as thorough as you need to be to make a decision that you don’t have any regrets about. And keep coming back here. These people, especially Tall Allen are a great resource. Good luck.
If you decide on RP, when you interview docs ask them their numbers for both. If they dont know, run. If they are vague, run. They should know % of each with full recovery after 1 year/2 years. As advised above, start physical therapy/kegels at least one month before suregery. After, take viagra low dose daily, and add pump if needed/concerned. And take a deep breath. Take your time.
Joewheat, you've already made the best decision by logging on to this site. Information is definitely power for the newly ...and in my case no so newly ...diagnosed, as I am still learning. As TA has said take your time. Use the search feature here and read read read. Not only will you get a better understanding of your own APCa, but you will also learn from others who have already travelled ahead on this journey. Best Wishes.
as everyone has said seek another opinion. You must speak to a radiological oncologist. I would travel to another state if necessary to go to a major medical research institution where they are doing cutting edge research and using cutting edge techniques.
Take a few deep breaths. As everyone mentioned - you have plenty of time to sort this out to your satisfaction. Likely is worth a visit to NYC - check in with Tall Allen for docs to talk to.
Your original urologist sounds way too pushy. While my diagnosis was different (G 4+5) I did talk to a couple urologists and oncologists. The first urologist was very straight forward and laid out the options, said it was my choice, gave me the pros and cons, and suggested I get other opinions. You want someone as objective and supportive as this.
Good luck - you'll figure it out.
If MSK in NYC isn't your cup of tea (it wasn't mine.. and I tried them..) I might suggest contacting Columbia Doctors at Columbia/Presbyterian/Weill-Cornell. Right off the GW bridge in Manhattan. Medical school hospital.
All the doctors I've consulted with there have been consistently excellent, and currently my oncologist and urologist are there (I'm done with radiation oncology - saw the Dr yesterday and he said we were done - there was no reason to continue visits - in a good way...)
Radiation I had done locally (Hackensack-Meridian University Hospital Jersey Shore) - a friend was the radiation tech, and they just got the most recent Varian machine... Out of the three specialties - the radiation is probably the least challenging to locate a good source for treatment. You might be able to have that done locally avoiding trips into NYC.
3+4 Gleason score, intermediate risk.I opted for proton radiation. Don't opt for the Space gel thing. The placement failed for me and delayed my treatments.
Hello - I'm 3 years out from my RP - I was 52 at the time. 4+3 on initial biopsy but that was downgraded to 3+4 in final pathology. I had a large prostate and met with 2 surgeons as well as an RO at UAB in Birmingham, Alabama - I decided to go with a very experienced surgeon in Huntsville, Alabama and he did a great job in my opinion. I am fully continent - but that took about 90 days from surgery. I was about 80% continent 6 weeks out. I have about 75% erections on my own and fully erect with trimix . At this point I may try the ED meds again as every month the natural erections seem to be getting stronger. The best result besides zero PSA so far is I now pee like a 10 year old....my prostate was really giving me issues in that department. I am also back in the gym and working out hard again. So, for me, the nightmare of prostate cancer has been turned into a positive by a great Dr and a positive attitude. I wish you the best whatever treatment you decide is best for you.
My case was very like yours. I had SBRT. Results great 3 yrs out. I’ve learned a lot on this blog. One of most important things is to listen to Tall Allen. He’s helped me in some tough spots.
Be careful, I found most of these men to be just like your first urologist.
Also realize, the moment you were diagnosed, your insurance card just got charged up with say.. $200k in medical dollars. There are lots of docs that will be happy to run you through their cancer regimen and swipe the cr@p out of that card.
Your job is to have something good at the end.
Here is a good website to compare your 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 your odds of 10-20 yr survival, etc. based on the treatment you pick.
prostatecancerfree.org/comp...
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.
Joewheat, you've gotten lots of good info already. With 3+4 your are potentially a good candidate for focal ablation if your new MRI shows cancer is well contained. Check out NanoKnife IRE ablation. It uses high-voltage electrical pulses and doesn't heat (or freeze) surrounding tissue like HIFU or Cyro. I did the clinical trial with 4+3 and at one year it has not come back in treated area and I had zero side effects. The placement of the needles is very similar to a prostate biopsy so the surgeons have a lower learning curve. See classic.clinicaltrials.gov/... for New York locations which includes MSKCC.
I also did a lot of studying of other methods and MRI guided SBRT seems to have very good results. You can check out Viewray, viewray.com/for-patients/ho...
Lastly, you can have the Decipher genomic test on your biopsied material. It gives a score indicating the likelihood of metastasis within 5 years and death in 10 years. It can give you some comfort on timing.
Glad you took the time to pause and I agree with all the others to run fast from your current doctor.
My biopsy slides have been sent to MSK for second opinion; thinking that is comparable to Johns Hopkins? I was able to get an appointment with RO Mychalzak at MSK in about a month. Besides the 3tmpMRI, what other tests should I be asking about? List so far: 3tmp MRI, transperineal biopsy if needed, Decipher,... Trying to get a better understanding of where the cancer is within the prostate and then will start exploring treatment options.
At times it is like I am a sponge that is fully soaked & cannot absorb another piece of information. Order books off Amazon...
Watching YouTube videos with Dr. Scholtz...
For today, I am on the right path...
You're doing well, absorbing it all. Have been there. I had my biopsy slides re-evaluated by MSK pathologists as well. RO won't give a firm opinion without MSK's own evaluation of the slides. And it was more precise and found differences, a slight downgrade. Some here have said that MSK second opinion on the slides is similar to Epstein. But it can't hurt to send them to Epstein as well.
Good that you have the appointment with an RO. I'm not familiar with Mychalzak but they all consult after your first visit. So will probably have a more precise set of options recommended the second time you see the RO. MSK will likely schedule 3tmpMRI as well.
I was DX in 2019 with 3+4 in 6 cores at age 67. The MRI showed the tumor contained in the prostate and had not spread. My urologist immediately said it's radiation for you. I had one month of Bicaludamide followed by a 4 month shot of Lupron. I went through 27 sessions of IMRT. The first 11 included the seminal vesicles. My PSA has been .2 for the last 4 years. I do not have incontinence and can achieve erections without Viagra but with it helps a lot. I still have strong orgasms but nothing comes out.
Hi Joe,
Sorry that you've had to join this club. I was diagnosed in November 2010 at the age of 52 with a PSA of 5.0 and Gleason 3+3 and, in retrospect, rushed my decision into surgery (which occurred in January 2011). As others have suggested, take time to research and get multiple opinions before making a final decision.
My urologist (surgeon) was great about informing me of the risks of incontinence, ED, and recurrence before going into surgery. He gave me real numbers that, over the years of dealing with this, were pretty accurate.
My robotic radical prostatectomy went well, with negative margins, no lymph node involvement, no seminal vesicle involvement, and no extra capsular extension. My Gleason was upgraded to 3+4 in the post-surgery pathology.
Because the tumor was mostly on one side of the prostate, the surgeon did take the nerve bundle on that side. Even so, about 18 months out from the surgery, I was able to achieve 70% or so erections without the use of Cialis or Viagra.
It took the full six months for me to get my incontinence to the point where I didn't have to wear pads. But, over the years, stress incontinence has become a thing and I wear light pads daily. It's a very minor nuisance.
My surgeon said there would be a 20% chance or recurrence and, sure enough, I fell into that 20% when my PSA returned in September 2015 just shy of my 5-year anniversary of the surgery. It bobbed around at low levels for the first 12-18 months with no real trend established, so we decided to just monitor it. As we did, my PSA Doubling Time (an important measure for you to track) was very slow, measured in years. I wasn't a fan of rushing into salvage radiation therapy (SRT), so we continued to monitor.
In July 2021, nearly 6 years after my PSA first became detectable again, my PSA crossed the 0.02 ng/mL level which has been the historic threshold for biochemical recurrence. My PSA was increasing at a faster rate, too.
In November 2021 I went for a PSMA PET scan to try to find the recurrent cancer cells to help guide the radiation oncologist, but it came back inconclusive. My PSA really started to take off in early 2022, jumping from 0.23 to 0.33 to 0.36, so we agreed to do a combination of androgen deprivation therapy (ADT; hormone therapy) and SRT. I received a 6-month dose of Eligard in May 2022 and 35 sessions of radiation over 7 weeks in July and August 2022.
The jury is still out on the effectiveness of the radiation. My last PSA in May 2023 was 0.11.
Bottom line: Each of our cases is unique and you'll have to do your own research and do what's right for you and your circumstances. It's your body and your life. But, as you do your research, don't fall victim to "paralysis by analysis." You can drive yourself nuts reading so many papers, articles, and forums, many of which will offer conflicting advice, and at some point you just have to stop.
Make a decision with the best information you have available at the time and move forward. Don't look back.
Wishing you all the best as you move forward.
P.S. If you're interesting in more of the unvarnished details of my experience with surgery, recurrence, ADT and SRT, you can check out my blog (URL in my profile).
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