Treatment Decision

Atlantic,

Welcome to our club that none of us would have chosen to join. So, to be clear, you had a biopsy in October of 2018, and came back G6. A follow up biopsy in October of 2019 showed an increase in G score to G7. I'm not familiar with the metabolic protocol--a quick glance raises concerns....but there has also been a great deal of discussions in here about "going keto" as a cancer preventative.

What my opinion is--and what you will see a lot of on this forum--is that diet and supplements may certainly help before diagnosis, and make it less likely that cancer will develop, diet and supplements do not treat and certainly cannot cure cancer. It may be that such things can slow it down, but stop it, cure it? Nope. I don't recall if the particular protocol you're trying has been discussed in detail here.

Now, that being said, I'll ask the basic questions we ask all newcomers--

1. Where are you located? Particularly, are in you in the US?
2. If you are in the US, I would suggest you ask to have your second set of biopsy slides sent to Johns Hopkins for a second opinion. Dr. Epstein's group there is THE best in the world at reading prostate biopsies. You might get a downgrade.
3. If the G7 is confirmed, then it's likely that treatment is in your future.
4. You say "RP is recommended". It is our collective experience that since urologists, by definition, are surgeons--they recommend surgery. Our general recommendation is that all newly diagnosed men should seek out treatment opinions from one or more radiation oncologists to explore the radiation options. There are several different radiation modes available, and talking to experts in each one is part of your research.

Beyond that, welcome, and we're glad to have you on board.

Ok, so I will give an overview of my journey so far.

During routine bloodwork for nutritional reasons at age 37 (2014), a PSA test was inadvertently undertaken which revealed my PSA at 4.4. A subsequent MRI detected abnormal activity in the prostate but given that subsequent PSA tests over a year fluctuated up and down I was reassured by the urologist that it was more than likely due to prostatitis and advised to monitor.
PSA readings over the ensuing years gradually increased to 5.9 and in Sept 2018 an MRI detected a lesion at right apex PIRADS 4. A random 12 core biopsy in Oct 2018 detected a single core (1 out of 12) 5mm G6 tumor. The interdisciplinary team at a well respected cancer centre here in France where I currently reside recommended AS with a confirmatory biopsy within a year.
During this year I actually made a trip to a friend in San Jose, CA to avail of legal access to cannabis oil (Rick Simpson oil). Over a 2 month period I made up cannabis oil suppositories in a bid to treat the tumor and see what happens. In Sept 2019 a MRI detected tumor to have grown to 11mm with possible EPE (hard to know what to make of the cannabis oil treatment due to inaccurracies and differing interpretations of MRIs which I am becoming more aware of). In Oct 2019 A TRUS guided (4 core) targeted confirmatory biopsy detected 2 out of 4 cores G7 (4 at 30%), tumour size 7mm, no EPE detected, PSA 6.4. The interdisciplinary team recommended surgery given my young age with follow up radiation if need be.
I began to read up more on RP and SE of treatment and given my age (43 at time of writing) I frantically started looking for alternatives to surgery.
I hooked up with an organisation here in France who promote the use of the Metabolic Protocol developed by Dr Schwartz (see signature for link). Basically the idea is to target the damaged mitochondria of cancer cells and try to kickstart them back into healthy functioning. It is seen as complementary to standard treatment rather than alternative although there are some who use it as a monotherapy. I started it in Nov 2019 and in May 2020 a MRI detected a lesion of 5mm, PIRADS 3. Now, I understand that this is not concrete evidence of any possible reduction in tumor size and is more than likely due to MRI variability but it was enough for my potential surgeon to refer the images to an interdisciplinary team for reexamination. They did and while acknowledging the finding, still recommend surgery.
In the meantime, through another forum I have also discovered Edel Allens blog and his particilarly solid evidence-based research on all aspects of PCa. I managed to find a RO willing to treat me with SBRT (no mean feat in this country where I had been told that it was only available through clinical trials) as a monotherapy should I refuse surgery.
However, to date I have seen 3 urologists, 2 of the top ROs here and my case has been presented at 2 interdisciplinary team meetings at a top cancer centre in France and they have all said that due to my young age profile, surgery is the strong recommendation. A recent PSA test shows 6.2.

So, this is where I am, still very undecided, uncertain and reluctant to treat. Nothing is possible here until Sept or Oct because the whole country goes on holiday for the month of August so for the moment I continue the Metabolic Protocol (which I believe or hope may be at least slowing tumor progression) and ponder my predicament. I know many people here have been or are currently at that stage but I suppose what makes it so critical for me is my young age and obvious QOL issues. I am grateful to have access to both a top quality surgeon and a RO prepared to treat using SBRT TrueBeam.
Hesitations re RP are the obvious immediate UI and ED and re SBRT are the long term outcomes of radiation treatment. Seems I'm going to just have to roll the dice.

Yes, surgery is a very reasonable treatment path, and yes, there are alternative treatments. But supplements/diet are something you can add to a treatment, not a proven treatment by themselves. Many of us here have had to face the difficult primary-treatment decision. We're here to help answer your questions as best we can with our collective experience. I am confident that after study and reflection you'll reach the treatment that's right for you.

You have time to make a decision, but if you delay for a long period, waiting and hoping for an improvement through diet, your cancer could process in grade, spread locally, and possibly even metastasize.

Djin

Ok so I just read your full history.

Everyone has their own risk tolerance and lives their own life.

I just want to point out that based on lots and lots of data if you are Stage 1, 2 or 3 your five year survival rate is nearly 100%

https://www.cancer.org/cancer/prostate-cancer/detection-diagnosis-staging/survival-rates.html

However once the cancer presents somewhere else, a seemingly harmless spot on a rib or in your pelvis, the five year survival drops to just 34%.

With that accidental PSA test you were, in effect, given an amazing chance to eliminate it. As odd as this might sound, there are many many men, and their families, who would love to be in your position.

Thank you all for the support, comments and observations.

Oh, I omitted to mention that I did a genomic test in 2018 following initial diagnosis and got results one year later stating no genetic mutation or anomaly found.

Yes, I agree with the observation that a certain percentage of young men diagnosed tend to have a rapidly evolving agressiveness tumor type and one could possibly postulate that all tumors originate as some sort of insult leading to inflammation to epithilial dysfunction which progress to G6 to G7 - G9 and so on.. and some progress to a certain level and no further hence the rationale for AS.

I also acknowledge the risk in treatment delay of micro metasteses and the associated significant dip in 5-year survival.
I am leaning towards SBRT but its not easy psychologically going against the advice and recommendations of the entire French medical community.
Another issue is due to the tumour location at right apex and the close proximity of the CES (critical erectile structure), that SBRT treament will mean the penile bulb will get a significant dose thus highly increasing likelihood of ED with time. The low toxicity rate of SBRT was one of its selling points but this latest news puts a dent in that hope so...
Does RP inevitably lead to the SE of penile shrinkage, loss of girth, stress incontinence etc.. Its hard to tell from clinical studies and research data which are very vague and probably most men who are affected don't wish to talk about it understandably.
Just to get an idea of whats in store for me should I choose surgery.

Atlantic: I agree, finding real data about surgical side effects is challenging. I'm not sure I can cite actual studies--they are so full of conflicting data that I guess you pick and choose.

No, the side effects are far from guaranteed. On this forum, you will likely get many responses from guys who have experience the worst surgical side effects. Shrinkage, complete loss of erection, total incontinence, etc. I'm one of the few on this forum who report no issues. I suspect that out there in the real world, the massive side effects are at one end of a bell curve, not at the middle of it.

However, with a tumor at the apex, your chances of surgical issues is also higher. I get it that SBRT is not common in France--and that you're trying to push against all of that.

Back to your question--the best explanation I've heard is that post surgery, your erectile and continence functions will decrease at least 1 step. Which means, for the average man facing this who is in his late 50's or 60's--that if one is having some stress leakage or incomplete bladder emptying, then after surgery it will be similar or slightly worse. On the plus side, men who have a large prostate and frequent, incomplete urination because of it will get some relief. If a man at 60 pre-surgery needs viagra to perform once in a while, likely he will need it every time. And so on.

But, there is a non-trivial risk that the surgical intervention will take those functions to zero. Which may not be a big deal to a guy in his 60's or older with a partner who is post-menopausal--but it is certainly a big deal to a guy like you. The very fact that you're asking the question suggests that might be more risk than you're willing to take.

Yes, I was pointing out the difference between SBRT and RP vis-a-vis what constitute "poor" lesion locations. Are you sure your surgeon wasn't referring to a lesion at the base? That's where the neurovascular bundles run -- have a look at an anatomical drawing. Note, counterintuitively, that when standing up, your prostate apex is down, not up toward your head, and the base is "on top."

Please remember we are not doctors! Research for yourself what you read here and form your own conclusions. You want to minimize the chance of "treatment regret" that some men have That means getting good info, knowing your status, and thinking about outcomes and what matters most for you.

Re apparent penile shortening after RP, studies have different outcomes, but you can read up yourself. Google Scholar and PubMed are both good search engines. For the big questions (like SBRT, or RT vs. RP), look for papers with the word Review or Systematic Review in the title. Review articles scour the literature, select the best studies, analyze them, and summarize the results for you, often drawing "bottom line" conclusions. You can use their extensive Reference sections to delve further into a topic.

Djin

Post Edited (DjinTonic) : 8/9/2020 9:25:04 AM (GMT-6)

Djin:
Absolutely, this is all about minimising treatment regret as much as possible.

Its my understanding that while the neurovascular bundle is actually fixed on the prostate at the base, mid-gland and apex, the nerves are at their most vulnerable at the apex (which is the bottom of the prostate as you correctly noted). That is what the surgeon told me anyway.

Duly noted for the review articles.

Post Edited (Atlantic77) : 8/9/2020 9:35:18 AM (GMT-6)

Atlantic77 said...
...
Its my understanding that while the neurovascular bundle is actually fixed on the prostate at the base, mid-gland and apex, the nerves are at their most vulnerable at the apex (which is the bottom of the prostate as you correctly noted). That is what the surgeon told me anyway...

Just a hunch here, but your surgeon may be talking about possible complications with the bundle(s) outside the prostate if the cancer has poked through the prostate capsule. MRIs can suggest EPE. but you don't know if there is a small spot(s) -- focal or multifocal EPE -- until the surgery itself.

Normally I wouldn't think that strictly prostate-contained lesions not at the base affect surgical bundle damage -- my one of my two lesions was at the right base (the other right midgland). My surgeon said he was was fairly confident he could spare my left neurvascular bundle, but wouldn't know about the right one until he was operating). Of course there could be trauma/damage to the bundle(s) in freeing even a prostate with an intact capsule from the bundles running along outside if they are very adherent.

Djin

Post Edited (DjinTonic) : 8/9/2020 10:14:45 AM (GMT-6)

Atlantic77,

Also look at High Dose Rate Brachytherapy. This is very effective with minimal treatment side effects for most men. You appear to qualify for mono-therapy and many practitioners are now doing one procedure. Traditionally you would have two procedures as I did nearly 10 years ago.

SBRT was developed based on HDR brachytherapy adapting the better technology and high radiation rate to external beam radiotherapy. Dr. Jeffrey Demanes pioneered HDRBT in 1981, so it has a very long history. A notable smart guy, the late Intel founder Andy Grove used it successfully more than Two decades ago and explained his choice in a Fortune magazine interview. Though Demanes is retired, his website is an excellent source of information at www.cetmc.com.

Several men on the forum have successfully used HDRBT and can share their information and experience. Additionally I had IMRT due to my high risk situation. I remain PSA undetectable and No negative treatment side effect after nearly 10 years.

Atlantic...Glad you’re here and asking questions. At age 43 you have a lot longer to potentially live with the side effects for whatever treatment you select. I do not support the axiom that young guys should choose surgery an older guys RT. We each select the treatment best for our own situation. A lot of guys have excellent outcomes with surgery while others suffer significantly from the side effects. SBRT was a great choice for me and growing in popularity simply because it’s effective. I was treated at age 69 and four years later sex with my wife of 51 years remains important for us both. No help from any meds needed. Urinary function prior to treatment was excellent and remains so. The treatment itself was almost non invasive and had little impact on our life. I believe my experience regarding SBRT is close to the norm. I certainly would recommend keeping SBRT as an option.

Really appreciate all your shares and valuable information from the patients experience...
Have an appointment with a MO on the 25th to get the systemic perspective (and ask for a bone scan, abdomino-pelvic scan & decipher Test) and will more than likely make a decision after that.
I am leaning towards SBRT for the convenience of minimal invasion & less immediate SE but the appeal of a possible successful RP (cancer control & QOL) makes me hesitate.
I'm also beginning to realise that the location of the tumor at the right apex with possible EPE may be a contributing factor in me being edged towards surgery (although I may be wrong). It seems that the capsule at the prostate apex is poorly defined which may be why one of the RO ruled out brachytherapy due to proximity to penile bulb. This would be an issue for both SBRT & BT because the lesion has to get the highest dose therefore the penile bulb takes a blast as well with the very probable ED impact in a few years. I must ask what solutions are available for radiation induced ED. Do Cialis and that family of molecules treat RT induced ED well?