My journey starting at young age <40 - Prostate Cancer N...

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My journey starting at young age <40

KenPe
KenPe

I’m now scheduled for RP at the age of 41. I cannot find a piece of mind that it’s the right choice so maybe talking about it here will give me something. In 2014 (I was 34 years), I had a regular medical check up done and they for no reason added PSA test to all the others. Got 1.54ng/ml.

Likely some infection they thought and sent me to a urologist. Two weeks later I got 3.79ng/ml. I didn’t feel I had any urological problem. But it started soon after – coincidence or psychological. I’d describe it as itching in the urethra (not during urination but rather pretty much constant, weeks ok and then again in varying intensity, very frustrating). Nobody believed I could have PCa. So, lots of different tests, antibiotics, 3+- months visits. PSA varying between 2-3ng/ml measured every few months.

Three years later, in 2017 (37 years), my first MRI (nonspecific prostatic changes, PCa couldn’t be ruled out) and biopsy. Only 8 cores, apparently small prostate. Negative, sings of prostatitis. 2 year later another biopsy – 12 cores with 1 core 0.6mm GS3+3 probably (too small to assess reliably). MRI again described some generic changes but couldn’t suggest anything for targeted biopsy. I went on AS.

Year later, 2018, MRI suggesting targeted biopsy on the left (PIRADSv2 score 3). Fusion biopsy 12 cores from the left, 6 from the right. Left nothing but right 3 cores with 3, 2 and 1mm what looked to be GS3+3 (again it seemed there’s uncertainty in assessing it because of a thin needle).

What’s interesting, and nobody could explain, every time I had a biopsy, and the more cores the better, my PSA dropped 6 months after to something like half of what it used to be before the biopsy. 5 months ago, I again had 1.54ng/ml as 7 years ago. Then it goes slowly up to 2.5-3 but difficult to say how far it would go as at that time there is another biopsy bringing it down. Not sure watching PSA doubling time makes sense here.

Reading a lot of material, studies, over-treating, under-grading, you name it. Several doctors now suggested to go for RP that because of my age it’d come later anyway and doing it sooner is better. Sort of makes sense but still. Also seeing several people here wrote about their GS6 being upgraded to 7 within few years.

57 Replies
oldestnewest

The only problem I can see is you were overdiagnosed. This is tragic and is leading you down a path that may include incontinence and erectile dysfunction during your prime years. PSA is a lousy surrogate for prostate cancer- especially in your case -because you know you have fluctuations due to recurring and remitting asymptomatic non-bacterial prostatitis.

As for your young age - that is exactly why you should NOT have treatment. Surgery-happy urologists think that is the solution to everything. A man with low-risk PC is always better off on AS than surgery, regardless of age. Here's why:

prostatecancer.news/2017/08...

prostatecancer.news/2016/08...

It may be difficult for you to stick with AS because of pressure from doctors and family, who don't know better. I belong to a couple of PC support groups here in LA (now via ZOOM) where men on AS come to get support from peers with better understanding of these issues.

Kenpe

There is no way I would undergo surgery from what you have posted.

NEVER.

Might you need treatment someday?

Nobody can really say. If you do get treatment now let's consider what you might give up for that "maybe some day I will need it". Losing ejaculate is a certainty. You might lose erectile function as well. 6 months or a year is not uncommon, maybe forever. Do you fancy wearing a diaper? You might need to. Oh, your penis will be an inch or two shorter as well.

Listen to TA. And, find a different doctor, one who is not pushing surgery when it is not needed.

Thanks guys for the comments. My mind is racing and maybe somewhere down there I was hoping I'd get messages that show some kind of support towards the treatment as it's so close now. It's been years I've been on this topic, all that research and at the end I have a feeling there's always some study or statistics that at least partially negates another one. I'm worried that I might be just looking for what I want to see in them missing something important. Go figure what's the best. Yes, I've been trying to find arguments against the treatment as so far I've managed AS ok.

I've talked to several doctors, not surgeons by heart and only one sort of suggested he still wouldn't be strictly against AS but saying I'll most certainly need the treatment in few years. The one managing my AS, supporting it initially with the small finding 0.6mm but changing mind when the last biopsy showed three findings 3, 2 and 1mm. And that seems UNDERSTANDABLE as most of the AS programs allow only <=2 positive cores. I cannot blame him for being old-school, do I? You seem not to follow this, what's your reason for that?

The effect of surgery with incontinence and sex life going down the hill is a nightmare but a clear deal. What are the odds you'll need more serious treatment with worse outcome in 10 years (<3 years for our colleagues at healthunlocked.com/prostate...) because of under-grading (30+%), progression, expansion to margins etc.? What I'm hearing is it isn't negligible 'maybe'. Like mortality after 10y is just slightly worse with AS but progression is noticeably higher with AS (60% vs 34%, renalandurologynews.com/hom...) and that's when younger age could play a role of needing more than 10, 20, 30 years. Is that easier to accept than pads earlier and the need for very supportive partner?

Yes, when I talked to the urologist-surgeon he had a strict view on this. Apparently, he practically sees stuff that could happen if left alone. He suggests you don't want risky biopsies repeated too much (also each of them decreases the chance for successful nerve sparing surgery / the last time it took me half a year to get rid of blood from my semen), all those frequent visits and testing. Yes, they cut stuff daily for living so I don't expect him to be too open minded. I think that even after surgery I won't find piece of mind - still testing, still chance of relapse.

Tall_Allen
Tall_Allen in reply to KenPe

"And that seems UNDERSTANDABLE as most of the AS programs allow only <=2 positive cores. " This used to be true of some (never most) AS programs, particularly at Johns Hopkins. It was part of the so-called "Epstein criteria" that defined a "very-low-risk" candidate. Because long-term AS results have so far been spectacular, most programs, including Johns Hopkins, have loosened their criteria.

At the longest running AS program in North America, at U of Toronto, 55% of low risk men have stayed on AS now for 20 years. Interestingly, 55% were still on the program at 15 years of f/u. So it seems that a plateau is reached - if you have the kind of prostate cancer that has not progressed in 15 years, it will probably not progress thereafter.

The point is that there is no risk to you in waiting, as long as you stay with an AS program. Everything to gain, nothing to lose.

MSK has a very interesting and data-based testing protocol that you might want to look into.

KenPe
KenPe in reply to Tall_Allen

Hi Allen, when I referred to 2 cores and that's probably what the doctors around me strictly follow I sourced from ncbi.nlm.nih.gov/pmc/articl.... It's from 2016 and all apart from 1 program are <=2 cores. In some cases, they mention 50% of cores but for 12 core samples that also pretty much means 2 core. Is that already outdated, I don't know. When some people here call me a poster child for AS, I have sadly doubts because of exactly this.

Tall_Allen
Tall_Allen in reply to KenPe

Yes, it is outdated. Even Johns Hopkins who started that criterion no longer uses it. What happened was this: as long-term results accumulated, the safety of AS became more apparent, and criteria were relaxed in every major program. Today, all major organizations and institutions, including Cancer Care Ontario, ASCO, NCCN, AUA, and EAU recommend AS for all low-risk patients regardless of the number of positive cores.

KenPe
KenPe in reply to Tall_Allen

There's a study that on the contrary questions the suitability for anything than very low risk. pubmed.ncbi.nlm.nih.gov/270...

As you say if all those institutions not just allow but even recommend for low risk then something has changed again. Not easy to digest it all the right way.

Tall_Allen
Tall_Allen in reply to KenPe

Take your time. Goteborg defined "failure" to include PSA progression or stage progression or grade progression for which they received treatment. That definition of needing treatment is not used in most North American programs - only grade progression is now considered an indication for treatment. Also, you may be misreading the study you linked. It only tells you that "failure" (as they define it) was higher the higher the risk group. That is not at all surprising. It does NOT tell you that AS was a failure for them. 94% of low risk men were alive 15 years after AS, which is similar to the survival rate of low risk men who get treatment.

KenPe
KenPe in reply to Tall_Allen

I feel like a stubborn kid Allen, sorry. You know much more about it and I'm trying your patience. Thanks for that. I also saw those results somewhere but also others and yes, it is difficult for me to interpret them. I'm not at the stage of talking about survival. My goal is not to progress to a level where I would need treatment with notable worse outcome for QoL and yes later affecting survival. Meaning I don't value only short-term future but distant one as well.

Now looking at ncbi.nlm.nih.gov/pmc/articl.... RARP for low-risk with results: "Of 258 low-risk PCa patients, a total of 93 (36%) patients had not either BCR, pathologic Gleason score ≥7, or ≥pT3 disease with PSM." So even now it looks like only 36% chance to ideally be where I want to get. On the other hand, we say typically only GS>=7 needs treatment so with that logic having 7 and treating is actually what you want. Would I be disappointed after going for RARP and having only 6? Or should I be happy it hasn't progressed yet? Well, 6 rarely cases real problems and if I ever get 7 it probably is there already? But in that case you want it out, 7 is bad... Oooooh.

Your Journey sounds a lot like mine. I was also diagnosed with a Glisan six equals 3+3. I was told to have an MRI because of my family history and that was two years ago. Biopsy confirmed the results and it’s been a roller coaster. I was exactly in your shoes and scared into thinking that the radical prostatectomy was the only solution. I have since made so much progress both physically and emotionally. Long story short, I still have my prostate and have no symptoms and surgery isn’t even on the radar right now. Please keep reaching out and if you need anything this is a great place. I have gotten so much support from this group.If you want to share some more or pick my brain or anyone’s brain here, please reach out.

Thanks Gpinkk. I was on AS for 3 years and it seems now having 3 positive cores instead of 1 small is behind the changing opinions of the doctors I talked to. Also prostatecancer.news/2017/11... suggests this statement may not be something to count on.

Tall_Allen
Tall_Allen in reply to KenPe

I think you may have misinterpreted what I wrote there. It argues FOR active surveillance of GS6, not against it. It also argues that progression is SLOW if it occurs, so there is always time.

The time to come off AS is when there is grade group progression, not when an additional positive core is randomly found.

KenPe, PCa moves slow normally at your readings so take control, talk to many and make a comfortable decision. You are not alone!

KenPe
KenPe in reply to Murk

Hi Murk. Thanks. I'm losing it though. I don't know who else to talk to. Ignoring the surgeon's opinion, I talked to four other urologists. All, apart of one who wasn't that strict but didn't give me enough comfort, were for surgery. Saying that based on current urological guidelines... It's supportive to read the stuff here but I'd need to find one, at least one, respected doctor that would support my AS. I've been on it for 3 years so not that we haven't tried. Just finished a talk with one of them, explaining what I'm reading even here but no use. The 3 positive cores detected the last time are behind it. Not having that, AS wouldn't be questioned that much I feel.

Tall_Allen
Tall_Allen in reply to KenPe

If you want to speak to one respected doctor who will probably support your decision to stay on AS, arrange a phone consult with my urologist, Leonard Marks at UCLA. You may also want to consult with Behfar Ehdaie at MSKCC - 2 of the top programs in the US.

KenPe
KenPe in reply to Tall_Allen

Thank you Allen, I really appreciate that. I'm not from the US though but will give it a try.

Tall_Allen
Tall_Allen in reply to KenPe

As long as you send the necessary diagnostic info via email in advance, and you pay for the phone consult, I don't see why it would be a problem.

KenPe
KenPe in reply to Tall_Allen

I got in touch with Dr. Marks. Sent him all the information. I introduced myself as not being from the US. He came back promptly asking for my number that he'll call me. Hope. I gave number and waited. Day passed and nothing. I approached him again and he came back saying he cannot serve as a phone dial in consultant, didn't offer any other official way. I could have waited with hope forever.

Tall_Allen
Tall_Allen in reply to KenPe

I'm sorry that didn't work out. Try Ehdaie at MSKCC in NYC.

A couple of observations:

1) Nowhere in your original or follow-up messages do I find any certainty that you do actually have even G3 Pca.

"1 core 0.6mm GS3+3 probably (too small to assess reliably)."

"and 1mm what looked to be GS3+3 (again it seemed there’s uncertainty in assessing it because of a thin needle)."

2) My experience convinces me that 3T mpMRI and 12-core TRUS diagnostics are either error prone or deliver misleading information. My PIRADS 3 MRI missed PCa in one entire lobe, missed capsular penetration, grossly underestimated the prostate size and understated the tumor size by a factor of 20. The biopsy missed all the PCa in one lobe and overstated the amount in the other lobe.

3) My PSA went up and down dramatically for 14-years before I finally saw enough evidence to convince me to have a prostatectomy. My quality of life during that 14-years (age 56 to 70) was a very important factor in my decision to keep waiting and watching.

4) Sometimes the medical professionals make decisions based on scant facts and "that is the normal protocol." My surgeon and Medical Oncologist insisted I start radiation therapy just six months after my RALP because of my extra prostatic extension and my positive surgical margin. However my post surgery µPSA was 0.023 6-weeks after surgery and 0.018 4.5 months post surgery. I kept telling them I would "WAIT" for more data before committing to RT. It is now 26-months post surgery and I am still waiting with a µPSA of 0.069.

Both the surgeon and MO agree that waiting was the right thing to do, rather than rush into additional treatment.

5) Much current research indicates, quite strongly, that G6 PCa has little probability, if any at all, of spreading outside the prostate. (see the thread lower on this page).

6) PCa treatment is advancing rapidly and new technologies are offering the possibility of effective treatment with few side effects. It seems to me that you have plenty of time to wait and see what those new treatments might offer you while maintaining a superior quality of life.

7) I have intensely studied PCa genomics and the Decipher tests and am a true believer that genomics information leads to superior treatment decisions. If it were me, in your situation, I would try to get some PCa tissue to the Decipher folks.

I agree with the others - I would never decide to have surgery or any other treatment for PCa based on what you have told us.

KenPe
KenPe in reply to OldTiredSailor

Thanks Sailor! Re #1 - the second biopsy had 3 positive cores - 3mm, 2 and 1. So not just 1mm. I write too much and important stuff gets missed ;) It was observed under multi-headed microscope so more people assessing should give better confidence.

Re #3 - Why are you still happy with the decision to wait 14 years? Don't you feel you'd have had less expanded disease should you have had treatment earlier? Looks like those 14 years or normal urinary & continence function were worth to you anyway.

OldTiredSailor
OldTiredSailor in reply to KenPe

I MIGHT have had less PCa if I had opted for earlier treatment. At this point, it appears no additional treatment will be necessary. I spent that 14-years living on a sailboat and travelling from SW Mexico to SE Alaska, back and forth. And, I was a hard core mountain bike rider the entire time. I lived my life to the fullest, retired at age 52, and feel that whatever additional PCa problems I might have from now do not negatively effect my assessment of those 14-years.

KenPe
KenPe in reply to OldTiredSailor

It's a great story and optimism in you, thank you. I wish you it continues that way.

I would ask to join to join that Zoom LA PC support group Tall_Allen mentions. THis PCa thing can rattle the best of us.

None of us had experience dealing with this -- it's like a rookie quarterback going in the first time. The game moves faster then reality, rookie gets happy feet and rushes through the play...

Talk to more experts, join that Zoom group of QB's and gain experience and the game will slow down for you...

Listen to the guys here . They know!

The support here is overwhelming guys and I'm surprised none of you so far shared a bad experience caused by waiting.

There's one detail to make my story full. The second biopsy described several ASAP structures but I don't think that changes your view.

I sense there's a lot of self-belief and trust in your guts and it works for you. I'm, sadly, more of a statistical and fact person. So 55% chance of ok is for me a difficult to digest chance of not ok. Wrong mind set.

E.g. based on majority of AS eligibility programs (and those are not old-school those are attempts to avoid overtreatment) I should be out. I have 3 positive cores and not <=2. Don't you believe in a reason for them to be set up the way they're? High chance (30+%) of being more than GS6. There're studies confirming that like nejm.org/doi/full/10.1056/N.... Don't you think that actually being GS7 and waiting years makes you less likely to get one final treatment (if that really exists)? Yes, there'll lucky ones but the doctors are saying the odds aren't great. Or is enjoying life and being treated in 'maybe' (but more likely then before) riskier fashion and maybe with new techniques still worth it? I've been following the industry a bit for 7 years already and haven't noticed a practical available and recommended advancement that I would clearly benefit from.

I'm so sad I haven't found this forum earlier with more time to talk to you, join the group and digest it from another angle. My surgery is next week. Can I really go there and say sorry, I changed my mind last minute? It won't make them happy because of the schedule they have but yes, it's my life.. But the main thing I'm seeing is I'd need to change my mindset and see myself as the lucky one who will and must fall to the right bucket.

I still feel I should find a doctor in support of this but there must be so few, at least in my country.

Tall_Allen
Tall_Allen in reply to KenPe

"My surgery is next week. Can I really go there and say sorry, I changed my mind last minute?"

Of course you can! It's your life! I met one man who got off the gurney just as he was being wheeled in.

"I still feel I should find a doctor in support of this but there must be so few, at least in my country."

What country?

KenPe
KenPe in reply to Tall_Allen

The Czech Republic. The level of healthcare isn't bad here over all, just haven't managed to meet anyone so supportive.

Tall_Allen
Tall_Allen in reply to KenPe

Do you have a radiologist who is expert at assigning a PIRADS score on an mpMRI?

KenPe
KenPe in reply to Tall_Allen

Cannot really say. It was, for me an unknown, radiologist from the hospital that did the MRI. And I don't know any that I'd ask for an opinion.

Darryl
DarrylAdministrator

There will be at least seven 30-60 minute presentations on Active Surveillance during the Prostate Cancer Patient Festival, all free. That probably counts as an active surveillance conference in and of itself! Sign up here: eventbrite.com/e/prostate-c...

Hidden
Hidden

Based on what I’m reading, you would appear to be the poster child for AS. You and your docs are right to be concerned with the PCa diagnosis at your young age. Even so, cautions about rushing into radical treatment. You have time to continue to research, research, research. You’ve done well to seek out 2nd opinions. Here’s some others to seriously consider. You don’t mention 2nd opinions on your biopsy or MRI. I’m not sure where you’re located, but an absolute must is to get a 2nd opinion on the pathology slides from Epstein at Johns Hopkins. The lab will know how to send them, but here’s an info link:

pathology.jhu.edu/departmen...

In addition to their basic 2nd opinion, consider asking JH to include a report on PTEN, ERG, and histology – they give an indication of future aggressiveness.

Consider both genetic (BRCA, Lynch Syndrome among many other suspect genes) and genomic testing (Prolaris, Decipher, OncotypeDX among others) which would also provide data points on future aggressive disease.

Also, beyond the traditional uro/surgeon and radiation oncology docs, consider 2nd opinions from docs advocating newer focal treatments like TULSA-Pro, FLA, and HIFU. I see Dr Joe Busch, the Busch Center, Alpharetta GA and think exceptionally highly of him. Have seen superb reviews of Karamanian in Houston, Sperling in Florida, and Scionti in Florida. Dr Busch for sure, and my understanding all these docs, are available for consults on all things PCa including 2nd opinion on your MRI.

If you haven’t found it yet, inspire.com is another superb source of info. Search on all of these things I’ve mentioned on that site. Also, I participate in the online support group ASPI, and get a lot out of it.

aspatients.org/

Also research PCa diet, exercise, and supplements. They could change your trajectory.

I’m 64, 2 of 12 cores pos, (1) L mid GG2/Gleason 3+4/7 5%, (2) R apex GG1/Gleason 3+3/6 20%. Both PTEN, ERG neg. DRE neg. Prolaris ‘Very Low Risk.’ PSA 5.01 stable since first diagnosed May 2019. On AS. I do qrtly PSA checks and an annual MRI. I am probably due for another biopsy in the next year. If I need treatment in the future, I would hope to qualify for TULSA-Pro or FLA. Less intrusive, repeatable, far less chance of SEs.

KenPe
KenPe in reply to Hidden

The first positive biopsy had a second opinion done, the third was done under multi-headed microscope with another person or more observing so it counts as a second opinion in my view. The MRI didn't have 2nd opinion I believe.

BRCA has been done, negative. I'm not from the US so many contacts you mentioned are out of reach.

Hidden
Hidden in reply to KenPe

Sorry I didn’t catch your location earlier. I know you are trying to wrap this up, but FYI inspire.com has many reviews of superb TULSA-Pro facilities and docs in Finland and Germany.

Tall_Allen
Tall_Allen in reply to Hidden

TULSA-PRO had poor results in the first trial in N America - a third of patients had a recurrence even when the whole gland was treated.

Line up a phone consult with the doctor Allen suggested and postpone your surgery until then. Who cares if it inconveniences the doctor in your country. You don't owe them anything. It's your life. You don't owe anyone anything!

Listen to the advice many have given here especially TA you are too young and youre Dx too nebulous to undergo surgury and the life changes that will ensue. You need to be diligant and monitor youre situation and get second opinions on biopsy and scans. You may reach a time when you need to.pull the trigger but dont think it is now

Guys, to conclude the topic here somehow. I appreciate all the comments, thank you so much. I’d have thought there must be somebody who felt to be harmed by over-AS but interestingly not. I read on another forum a case of a man being happy he didn’t delay as pathology upgraded him (that isn’t unusual I hear).

My worry still comes from:

•most importantly the fact of 3 positive cores vs the limit of 2 I’ve kept hearing (even though Allen questions that). Isn’t that worrying progression?

Not GS6 itself but increasing chances of GS7 hiding there too.

• so possibly keeping undetected GS7+ longer and what that means (worry of regretting).

•that the infected cores weren’t next to each other but #1, #4 and #5 from one side (so possibly multifocal which I guess is worse to control). Haven’t mentioned that before. And few ASAP structures on another side of the prostate carrying additional risk.

•prostatitis and the occasional unsureness that the symptoms I feel really aren’t from more aggressive cancer.

Not having a supportive opinion of a doctor (so far talked to 4 urological practitioners, oncologist and 3 urology surgeons) that knows my case and cancelling the surgery telling them it’s because my newly found online community thinks so (sorry, I don’t mean to be mean, not at all) sounds a bit weird. I assume the doctors I talked to follow the research as well (some or most not as much as you do very possibly!) and I keep wondering why they would (not just one I met) have a different opinion. What the surgeons see from the many pathology reports every day, from patients’ follow-ups, see the percentages, I suppose they don’t lie and see it as a practical serious risk, study or not.

When I tried to ensure the surgeon doesn’t see an alternative, he said. ‘Do you want worry about it every day and in 10 years very likely come anyway with also likely worse prognosis?’ Not easy to object unless I’m super positive with a view that ‘very likely’ means it doesn’t include me. 45%.

It also could be my current fear and whatever happens in the future won’t be as bad as I imagine now – which is times even worse than after RARP and possible related death.

So, it’s about belief because yes, some will be fine saying how it works. Hope I’m not totally showing disrespect to your help and you understand. I guess who else than here.

Tall_Allen
Tall_Allen in reply to KenPe

This decision, once made, is irrevocable. Why rush? I would urge you to cancel your appointment for now and take a few months off to vacation and think of other things. You can always come back to it if you decide you really want it. I also suggest you do some updated research for yourself - you seem to be operating under outdated assumptions.

I hear a lot of strong arguments for AS. I was 42 when diagnosed. I had cancer in 9 of 12 cores and 4+3. I had RP and then had to have hormone treatment and salvage radiation . I am very glad that I didn't wait longer as it turned out I had EPE and SVI. Docs were concerned that it had metastasized. So far I'm ok. While I have had life impacts....I wear a pad daily and can't get an election naturally. I still live life to the fullest.... travel, surf, sports etc. I have no regrets and I'm happy to be with my family. Waiting is fine but don't wait too long.

KenPe
KenPe in reply to Jp2sea

Also super young especially for this diagnosis. Glad it seems to turn out well for you. Just curious what were your PSA levels and why were you tested? Did you have symptoms?

Jp2sea
Jp2sea in reply to KenPe

I was tested during a physical. My dad had prostate cancer so it was a preventative screening. I wish I had known to get tested at 40. No symptoms at all. My first psa was 8.8 and that began the process. I'm a scientist and reviewed a lot of data. .. that was good but tough at times. I'll say that you are young and there are different ways to look at this. My

Jp2sea
Jp2sea in reply to Jp2sea

My docs and I wanted to be aggressive... and the RP was the best option for me in my view. Your case is different, and yes, you are young... many folks here are older believe in waiting and watching. But there is risk in that too. I'lll say that I have suffered unfortunate side effects of RP and radiation but I am fine with living with those consequences. But I'll add that I was done having kids and have a family. It can also be argued that you have a lot to lose if you don't act. In my view, the doctors advising you for surgery are probably not saying that because they want your business. RP has become a very common and successful procedure (not so for me) and an effective way to remove the disease risk. I'm not trying to say that you should or should not do it. But I do think you should hear a different viewpoint from others on this forum.

Totally agree with Tall_Allen, absolutely NO rush. Take some time off first because if you go forward with surgery, there is no turning back. No way I would have surgery at your age from what you have shared of your diagnosis, just no way at all. Best Wishes, judg69

KenPe
KenPe in reply to judg69

The point that isn't clear to me and have trouble digesting is the reason why so many people here would wait more. I thought I wasn't the rushing person, first 0.6mm positive diagnosis was 3 years ago and I waited (and even at that time a surgeon wouldn't wait). Yes, damaging the good 'young' years isn't pleasing but why so many people aren't worried about that being much worse later? Is the belief in catching the progression early so strong? Or you should live for present and don't worry about future? The way I understand the statistics is that chances aren't great. I think (is that wrong?) that you don't want GS7 in pathology, worrying chances are if you have 6 you also also have hidden 7. The more time that one is there, the worse. Am I wrong here?

Tall_Allen
Tall_Allen in reply to KenPe

I've had over 20 years doing research and statistics professionally, and I think you are making a very common and understandable error in interpretation. First, you are rightly concerned that statistics never predict for the individual. What if you really have undiscovered GS7 or what if there are more places that the random biopsy missed? What the clinical trials tell you is quite simply this: it doesn't matter!

In those clinical trials, some men always did have higher grade or more cancer that was never discovered in random biopsies - just like the case that worries you. HOWEVER, what the clinical trials proved is that the average man who was categorized as low risk (by current medical technology) did no worse by engaging in active surveillance than if he had radical treatment (surgery or radiation). That is an amazing finding, and I hope you understand the implications of that for you. It means that even if you were undergraded or undersampled (as some undoubtedly always are), as long as you were categorized as low risk, you can reasonably expect to do just as well on active surveillance as if you risk the side effects of treatment. And the success statistics aren't just good, they are overwhelming.

Anybody has a definition what a low density cancel volume is and is that inferred mainly from biopsy or MRI?

Another thing I mentioned here already but never dwelled on it too much is the statement from the biopsy suggesting a bit of uncertainty. In translation saying something like "If we can assess from the fine-needle samples then it's revised GS3+3". Does it mean there's a risk of under-grading or over-grading that sample? I'd have though it's vital to know if GS6 or more and if even the hit tumor can be easily under-graded then it's very bad for treatment selection.

Justfor_
Justfor_ in reply to KenPe

At your early stage I would have opted for focal ablation that doesn't preclude later surgery.

fluffyfur
fluffyfur in reply to KenPe

Sounds like you have your mind made up about the surgery. And just wanted confirmation you were doing the right thing. Which you did not get. My husband had RP and is totally impotent now, albeit not incontinent. Yes he is older so IDK maybe you won't lose your potency. You can send your biopsy off to Epstein in the US for another opinion if you want to confirm your G6 diagnosis. Did you have anyone else look at your pathology or just one doc in your country?

I would, at a minimum, get a second opinion on that.

GL with your surgery.

Just wanted to thank you all again, namely Allen for all the knowledge and patience that helped me to make my mind in a way I'm more happy with, at least right now. Not sure whether it'll turn out to be a good call but I cancelled the surgery this week.

Tall_Allen
Tall_Allen in reply to KenPe

You can always reschedule. Feel free to ask more questions.

Dear KenPe - I am also relatively new here (last week) - and just read thru your posts. I am a U.S. ex-pat but based in Switzerland - my PCa story summarized in my profile - I have elected to postpone any major treatment e.g. surgery or radiation, and I certainly have a higher risk profile than you. Of course this is a super-personal decision, but I find it actually painful to think you are doing surgery at this stage (after educating myself in fits and bursts for the last year). Let me make the following (highly personal) suggestions:

- wait on the surgery. Cancel the procedure. It is not a problem.

- get second (or third) opinions on the MRI's and biopsies. You need to at least have a clear PIRADSv2.1 score

- answer the question for yourself - why not radiation?

- take a hard look at health and well-being issues - can you improve your diet, fitness, BMI? Not easy necessarily, but potentially much easier than non-optimum surgical outcomes. And will help no matter what you decide in the future.

- I also agree that there are tons of helpful people and information on this forum (thanks Tall_Allen!)

- happy to share some of the European / Swiss docs and resources if you are interested, just let me know.

In any case, hope you do well!

KenPe
KenPe in reply to drmoose

Thanks drmoose. The immediate surgery has been postponed. Re the radiation - a topic for another thread but not a single urologist (like 5 now) suggested radiation in my case, quite the opposite, warned against it and if so, definitely not proton (that may be due to aggressive marketing the proton center runs here which is disliked and seen almost as unethical by the majority of urologists).

If you have contact to a doctor that could be approachable remotely, that would be great. Still looking for doctor's direct opinion for my case - saying if AS is really appropriate, maybe suggesting this or that genome test etc.

Good luck to you as well!

Tall_Allen
Tall_Allen in reply to KenPe

"a topic for another thread but not a single urologist (like 5 now) suggested radiation in my case, quite the opposite, warned against it and if so, definitely not proton " LOL!! That's because you have been talking to urologists and not radiation oncologists. To a hammer, everything looks like a nail. As you said, a topic for another day.

Yes I agree that the radiation topic is another thread. Also good resources here to figure that out. My experience so far is that excellent surgeons sell surgery excellently, and excellent radiation specialists sell radiation treatment - excellently.

There is certainly evidence - and opinions from experienced practitioners - that radiation is now equal or better than surgery, in terms of short / long-term side effects, and overall survival. Radiation has lower risk of incontinence (e.g. wear diapers or pads) but similar risk - longer term - of ED, whereas surgery has higher risks (for both) short-term (and long-term). Proton "should" be better (good physics reasons) but no clinical proof so far, and cost is substantially higher than photon (x-ray) radiation.

While many have done very well with surgery - ask about "stress incontinence" - e.g. if you do some sports, run around, laugh too hard, etc. Not the end of the world, but often not reported.

My working theory is that ED is under-reported in general - let's face it what percentage of us are really going to give honest feedback on ED - it will always be reported with a skew to the positive (over a group, even if some individuals are brutally honest).

Keep reporting your findings to the group. Good for you - and good for the rest of us!

You urologist wants you to buy him a new car. RUN.....

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