Good day all. 39 years old and diagnosed on May 1st. Gleason 3+3 in 3 cores and Gleason 3+4 in 1 core out of 12 cores taken. Urologist wants to do RALP. I'm seeing Dr. Polascik at Duke. Isn't there another way with a similar success rate?
Treatment other than RALP: Good day all... - Prostate Cancer N...
Treatment other than RALP
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wally198562
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No mentions of multiparametric MRI, genomic testing, second pathology opinions and alignment of findings. These were critical to my decision to go forward with RP nearly 10 years ago, at age 58. Today, I would add PSMA and liquid blood biopsy to do all I could to achieve thorough diagnosis.
MRI March 23 didn't show the tumor so another MRI scheduled for the 19th. Genome testing done with a GPS score of 29. Nuclear bone scan and CT scan with and without contrast. 2nd pathology by Duke was the same except percentage of cores was reduced and most notably in the 3+4 Gleason. Original core was 40% and reduced to 15%
differing opinions and findings - do we choose to rely on the ones we prefer? My first Gleason opinion was 3+3, 2nd and 3rd opinion 3+4. mpMRI's, I had two, indicated more serious cancer and insufficient margins for any radiation method other than bracy. I settled on RP. Final path 4+3 - biopsy samples missed worst bits. I remain grateful I had RP - initially the very treatment method I tried to avoid for all the negative talk. Hope this help, all the best.
I second NanoMRI's advice. Exhaust all available diagnostic tests before deciding.
You are considered Intermediate favorable(Active surveilance possibly) depending on where the cores are and you risk factors(enemy escaping prostate,Mets). Once you do RALP thats it, and lifetime effects read about it. Surgery and radiation have similar result, do your research on types of RT(ebrt.sbrt.HDR brach, etc) all these have similar results to surgery but differ in aftereffects depending on skill of person doing the procedures. Many would say why rush, you have some time, but reason surgery for younger is the impact vrs being older. I was diagnosed,64, 3+3 in 3 cores, 1 core 3+4(60% but dont know how much is 4 vrs 3), T2b, If my 3+4 would have been 50% I would be considered favorable, I'm on AS and taking dutesteride, and natural testosterone lowering, trick is to keep T in blood and not turning into food for PCa. Last 5 yrs have seen advances in RT, and new radionuclide immunotherapy where the scan lights up PSMA markers and then a radiactive(astatine) injection kills the targeted PCa cells, japan is frontline in this research shows promising. Fasting starves cells and the weakest(cancer) die, similar to chemo poisoning cells and weakest die. Bill Duke the actor has been on AS(1993) over 30yrs instead of surgery he changed eating(vegi) and lost weight and suppliments, Stay away from sugar, processed meats, red meat fatty, exercise, supplements and get a good team and keep your records. Press on,
Thank your Doc for his opinion and now get smart by reviewing here and on the web. Find a great RO (Radiation Oncologist) and have them map out a complete going forward plan with a time line. Maybe have your biopsy reviewed for a second opinion and a PSMA test.
Compare to your Urologists plan and deduct the positive and negatives and the law of percentages of both plans. If you wanted to father children yet, that makes your decision easier.
Decide if Radiation or Surgery is best for you. You are in control, drive and once you have a clear bigger picture, your decision will come and be obvious.
Keep us posted 
Active Surveillance
You are tied for one of the youngest men I have ever talked to. There was another 39 year-old who went on active surveillance about 10 years ago and continues on it. Even though you had a single core with GS3+4, that does not necessarily preclude active surveillance for you. It depends on how much pattern 4 there is. You may want to rule that out first. Johns Hopkins has the best pathology lab in the world for grading biopsy cores. I suggest you have your cores sent to them for a second opinion.
pathology.jhu.edu/patient-c...
Time to decide
You have plenty of time to decide - about a year, and I implore you to take your time.
prostatecancer.news/2016/08...
Effectiveness of treatment
The ProtecT clinical trial (link below) randomized men with localized prostate cancer to either active monitoring, radical prostatectomy (RP), or external beam radiation (EBRT). After 10 years there was no difference in oncological outcomes. While ProtecT didn't break down results by risk level (almost everyone was favorable risk), we now know that 55% of low-risk men are able to go without treatment for 20 years so far without grade progression (Klotz). Favorable intermediate-risk men have similar 10-year results with RP or SBRT (a type of EBRT).
prostatecancer.news/2020/02...
There were marked differences, however, in quality-of-life in ProtecT. There was higher risk of lasting incontinence and erectile dysfunction after prostatectomy.
In the ProtecT trial, 21% of those who got RP had to use 1 or more pads per day to absorb urine 6 years later. I would argue that this is particularly tragic in younger men because you may have 60 years to suffer from incontinence.
Among men who were previously potent, only 35% maintained potency 2 years after nerve-sparing prostatectomy (Sanda et al, 2008). It was similar to EBRT in men who were 10 years older. Using better radiation techniques (like SBRT) has resulted in 2-year potency preservation of 79% (Chen et al.). Of course, active surveillance results in no incremental potency loss.
Age
Younger men do better with any therapy - surgery or radiation. When we are younger, our tissues are more resilient. Some have used that as an excuse for younger men to avoid active surveillance. In fact, there is no age at which active surveillance is not preferable in terms of long-term side effects.
It has been argued that the risk of a second primary malignancy due to radiation is a major risk factor in younger patients. A recent study (link below) found that the "Probability of Second Malignancy was similar between SBRT and radical prostatectomy." It is tremendously difficult to attribute second malignancies to radiation. The best estimates of risk are less than 1% ). Arguably, younger men have more intact DNA repair mechanisms.
thegreenjournal.com/article...
Other side effects of surgery
• Loss of ejaculate is guaranteed. Bank your sperm if you want children. (Bank your sperm even if you decide on RT).
• 55% of men report size loss after RP (Carlsson et al.)
• Climacturia (urination at orgasm). Incidence was as high as 44% at 3 months post RP and 36% at 24 months post RP (Mitchell et al.). For many men, it is embarrassing and bothersome. Many give up sex because of it.
• Penile sensitivity/dysorgasmia: Because of damage to the pudendal nerve during RP, some men report penile pain (usually temporary) or loss of sensitivity (maybe permanent). Perhaps related is reported pain during orgasm(this seldom occurs). This is often not reported.
Myths about radiation
There are two myths that are prevalent about radiation. The first myth is that salvage after radiation is nearly impossible. While it is true that surgery after radiation is fraught with peril and should never be done, it is untrue that no salvage is possible. In fact, salvage after RT often has better results both oncologically and in terms of side effects compared to salvage RT after surgery (see this link). More to the point, with 10-year biochemical recurrence-free survival after RT over 95% for favorable risk, salvage should not be an overriding concern. It is a mistake to think that one can always have salvage. Side effects are always worse than if RT had been given originally.
The other myth is that with radiation, side effects crop up with time. One need only look at the patient-reported outcomes in the 6 years of the ProtecT trial to see it isn't true (link above). With radiation, acute side effects are highest in the first 6 months and decrease afterward. That is not to say there are no late-term effects, but it is extremely rare for an entirely new side effect to occur later that has never occurred before. Erectile dysfunction naturally increases over time as men age. In a very elegant study, Keyes et al. showed that half of the long-term decline in erectile function among men getting brachytherapy was due to normal aging. ED does occur with radiation, but there is significantly less.
Talk to a Radiation Oncologist:
We all started with a urologist. Sometimes, he did your biopsy. Many are trained as surgeons. Some surgeons are "hot dogs" who believe they can cure the common cold. They usually recommend surgery, because it's what they do. (If they don't believe in surgery, they wouldn't be a surgeon.)
At Duke, you have Bridget Koontz. Don't let her dissuade you because of your age - you are a rarity for both RP and RT.
Questions to ask:
prostatecancer.news/2017/12...
prostatecancer.news/2017/12...
prostatecancer.news/2017/12...
Good reading:
nccn.org/patients/guideline...
Great post with lots of pertinent information to inform choices. Kudos to TallAllen for all his efforts to educate on prostate cancer treatment and options. They’re all evidence based which is important when everyone’s experience is so unique. I’m 55, same stage as you, and elected EBRT after 3-4 months agonizing over my decision. Everyone I spoke with who had RP had some level of incontinence. Not everyone does of course, but the evidence shows it’s common. To me, that was the worst side effect to have to deal with for the rest of my life. Also, Patrick Walsh’s guide to surviving prostate cancer is a very informative book especially when you’re new to all this. It can be overwhelming!
Thanks this post is the best and most informative general knowledge summary. Please keep this and repost from time to time when appropriate. Really appreciate your guidance on this site.
Welcome!
Whatever treatment and whenever pursued, your fertility will be eliminated. At your age consider if semen preservation is reasonable for this situation, whenever that may be.
Note the universal concurrence with Tall Allen here. Read his comments several times over several days. Then re-ask your questions. Your urologist was not helpful IF he meant surgery now/soon. If he meant eventually then he has bias and the recommendation to see a radiation oncologist (RO) and a medical oncologist (MO) are important for your future.
All in good time.
Second opinion on biopsy and someone other than an urologist!!!!!!!!!!!!!
Watch YouTube videos PCRI.org. Alsex and Dr. Scholz are great. AS is a possibility.
Genetic test such as Decipher or Prolaris
You have time as PCa is slow moving. Urologists like to cut and maybe are very confident but does not mean that is BEST FOR YOU! Oncologist or Radiologist.
Localized treatment such as HiFU or Tulsa Pro.
sorry for my ignorance but what is RALP?
Is that prostate removal ?
Correct. Robotic Assisted Laprascopic Prostectomy
I would just like to emphasize a a couple of things that Allen said and add one thought -- 1) You definitely have time. Please try to take as much time as you can to learn about various treatments, and don't just jump into anything. Also understand that there are treatments out there that the urologist may not have mentioned (HIFU, TULSA, Proton therapy all quickly come to mind. 2) My urologist was also a trained surgeon, and though he mentioned several treatment alternatives, he thought surgery was the best option (no surprise). There is another reason for this, though, IMHO -- for the same reason that the Chevy dealer won't refer you to the Ford lot, Urologists will attempt to sell patients what they have, or will refer you to others within their medical group for services the medical group offers. For example, the group may have one or more ROs, so your referral will likely be "internal" and you may never hear about options they don't offer. That's what happened with me. Looking at Allen's reply, it appears, at least to me, that there continues to be a pretty high incidence of side effects with surgery. And I can tell you with first hand experience with my father, who had RP before robots came around, that the side effects can be very difficult. Based on that experience, my personal preference has always been least invasive treatments first,and that's how I have approached my situation.
RP surgery is the most invasive option with the most troublesome quality of life side effects. After TURP surgery prior to Gleason 8 diagnosis I was told I was not a good candidate for RP, which was music to my ears -- I didn't want it. External beam radiation was suggested to me but I went with a different option -- HIFU (high intensity focused ultrasound). Think of it as thermal radiation and the opposite of cryotherapy, which freezes tissue. I did have to go out of state and pay out of pocket for HIFU but 8 years later (I am now 74) I have no regrets about choosing it. If you do decide on that do full gland ablation, not focal ablation which targets only a portion of the gland. That's what my surgeon recommended and it made sense to me. TURP may be considered a pre-requisite for this full gland surgery. Size of the prostate gland is another consideration. Too large and the equipment may not be able to focus or 'reach' far enough. Check it out anyway. Few urologists will push it or even mention it. Some insurance may cover it now.
Dr. Polascik is a published expert on focal treatment. He can determine if you would be a candidate. If so, it would be minimally invasive, and minimal side effect risks but good cancer control without ruling out future treatment choices. Please discuss with him. Good luck, and my you have 100% success with whatever you decide!
Dr. Polascik at Duke is my urologist and he is pushing RALP
Hmm, that's interesting. Did he even mention focaland say why he would not recommend it in your situation? Just curious.
I would assume it's because Duke doesn't offer focal therapy. So I've reached out to 2 places that do TULSA and HIFU
I would wait on that. Just wait. Tall Allen can tell you it doesn't work. I can tell you it doesn't work. Just try to avoid that for now
Active surveillance possible. whats your psa numbers and trend? does the mp-mri show any large tumors?
No tumor detected back in March 23. 2nd MRI scheduled for 19 August. PSA last month was at 6.28
6 psa kind of high. if it seems to rise, u might want to act.
mebbe try a transperineal biopsy.
if the next mri finds a tumor, they can target that spot to maximize finding cancer.
youre close to the gray zone. if u get more 3+4, or 4+3, you could treat it.
In the past 2 years it went from 4.4 to 6.28 but nothing was shown on the MRI in March of 23. That's why it took another year to get diagnosed. ExoDX test forced the biopsy. 2 years later, PSA went up a bit.
if u gamble on AS, u might still not see lots of gleason pattern 4 after 10 yrs. if psa doesnt keep rising.
the only downside is the dark cloud following you around. you have to monitor faithfully. could be stress/anxiety.
but that could be putting off wearing pads for 10 years....
I got radiation and brachy and i still get boners….
If you choose to try to kill it, you should be aware of this data. FYI
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.
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.
Also be aware the the graphs don’t show any salvage radiation benefit. This would boost the surgery odds up a bit.
And, this is a very dysfunctional industry from my view. Loads of bad info mixed in with the good info. Same with the docs. Many of them are more dangerous than the cancer.
be careful of the hyenas that are more lustful of your insurance card than they are of saving your life. In my opinion, hyenas are far in the majority.
Symptom to look for is when they never want to refer you out of their office or they only will send you to the other guys in their practice
I am much older, but after a year of active surveillance including a fuller commitment to health & wellness, all cores now 3+3 whereas two were 3+4 a year ago. No need to rush into anything or to allow fear to be exploited by doctors who may be too eager to operate. You are your best advocate. Good luck!
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