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Prostate cancer - no metastases - treat now with repurposed drugs?

Thunderball1 profile image
77 Replies

Prostate cancer - no metastases - treat now with repurposed drugs?

I am 60 and have been diagnosed with localised, non-metastatic, low grade prostate cancer: Grade 1/Gleason 6, T2c, intermediate risk.

A detailed CT-PET scan (PSMA) (in addition to biopsy and MRI) has shown moderate amount of bilateral disease so it is considered intermediate risk for spreading. The urologist suggests radical surgery but I do not want to risk the side effects of ED (studies show 50-60% still have significant ED 2 years after surgery or radiation (e.g., UpToDate website summaries of peer-reviewed articles).

I am keen to start the repurposed drugs/metabolic approach (e.g., COC protocol; Jane McLelland) and with any additional drugs recommended. I am very familiar with the approach as my wife survived rare sarcoma for 6 years and was on a modified COC protocol for that time. She passed away 2 years ago but her prognosis was only 20% chance of 5-year survival after she got mets so I believe the COC protocol was the key.

My question is whether starting COC is a good idea for me now, even before prostate cancer has spread. I expect the answer is Yes.

I am keen to hear the experiences and advice of others who may have taken this pre-emptive approach, which drugs in addition to the COC drugs did they use, and how they are progressing.

Many thanks in advance.

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Thunderball1 profile image
Thunderball1

PSA ~7

Tall_Allen profile image
Tall_Allen

You've got the staging wrong. You are low risk, not intermediate risk - who misinformed you? 90% of cancers are bilateral, so that changes nothing. You are a good candidate for active surveillance.

Clinical staging is based on palpability, not MRI, PET scan or biopsy. If it is not felt on DRE, it is stage cT1c. If a lump felt, it is stage cT2a. Both cT1c and cT2a are low risk features. T stage is based on DRE only. Imaging is never used. (Nor is biopsy) Staging (used by NCCN) is based on AJCC 8th edition:

prostatecancer.news/2017/03...

Thunderball1 profile image
Thunderball1 in reply to Tall_Allen

Thanks very much indeed for your reaction. I hope you are right and I'm low risk. I truly do. Your link concurs with my "Bible" reference - UpToDate website of peer-reviewed summary chapters current to 2023 - "T2c Tumor involves both sides". But Staging is only palpability? How can one feel seminal invasion? It seems too subtle. But thanks. I am in lil ol' backwards New Zealand.

My urologist's report states: "pT2c" but I have not had a prostatectomy! Only transperineal biopsy...report: "involving 15% of combined length of the tissue" in one targeted area on one side, no evidence in the templated area of that side...and only <5% of combined length on the other templated side. So that would be "less than half."

I also had MRI (a few dubious areas) and a PSMA scan that lit up on BOTH sides - is the PSMA too sensitive? But I had only minimal palpation. First urologist who I fired did not even wish to do ANY palpation, just a biopsy! How can this be pT2c if no prostatectomy surgery? It should be a "cT2c" or less!?

Second urologist did DRE but didn't even say what he felt (stupid me for not asking).

Prior to all this GP did DRE and mentioned he felt an asymmetry - one side? So T2a or T2b. But fancy PSMA scan lit up on both sides (cT2c but not palpable?). What would you do? Makes me want COC protocol even more and AS.

pd63 profile image
pd63 in reply to Thunderball1

I'm gleason 3+4/7 with low volume 4, t1c non palpable, psa 4.2, psa density 0.08 and asymptomatic my psa hasn't changed since diagnosis last Ovtober.I've opted for AS, with a repeat MRI and tp biopsy 12 months after diagnosis, I was given the option by the oncologist of AS or SBRT, the urologist was only interested in removal, he said he didn't discuss AS, although he was part of the MDT.

Surveillance will follow a strict regime but there is a higher risk down the line of mesastasize on AS, but AS delays potential long term side effects.

I struggled mentally first few months which is normal but feel much calmer now, repeat biopsy will hopefully provide reassurance.

You may know what I'm telling you already so apologies if so but if you are unsure obtain second/third opinions.

Where possible discuss with spouse/relatives etc. a problem shared can be easier to handle.

Best of luck and I'm sure you'll make the right decision

Thunderball1 profile image
Thunderball1 in reply to pd63

Many thanks for your kind reply. The urologists seem one-eyed. Mine also wants to do robocut. First urologist only pushed for a biopsy. He did not even do DRE! Apalling greed. Good luck. Stay in touch.

Tall_Allen profile image
Tall_Allen in reply to Thunderball1

Please look at the reference I provided. As I said, NCCN risk stratification is widely used (I think in NZ too) and it uses the AJCC 8th edition staging criteria. The stages as described correlate with the risk of metastases. When you try to re-think the staging, you are no longer using the NCCN model. The NCCN model should be your starting point. It is how the benefit of active surveillance has been found.

AS is the only appropriate treatment for you.

If you are anxious, and who can blame you, I recommend you seek psychotherapy as I did. It is much more beneficial than taking a bunch of unproven drugs. The nice thing about AS is that nothing further is required. All kinds of adjuvant therapies have been tried:

prostatecancer.news/2022/06...

Thunderball1 profile image
Thunderball1 in reply to Tall_Allen

"much more beneficial than taking a bunch of unproven drugs"

How would you know? There are no proofs in medicine. Proofs only exist in maths and logic. Outside of those areas there is only evidence for or against a hypothesis and I suggest you do some research on it before pretending to be a know-it-all. Repurposed drugs and the metabolic approach is a revolution.

Peealot profile image
Peealot in reply to Thunderball1

Hey fellow. This guy (Tall Allen) is extraordinarily helpful and has a deep understanding of pc treatment. I understand you may be upset by your current circumstances, but you owe him an apology for your unkind words.

Mgtd profile image
Mgtd in reply to Peealot

Ditto

Tall_Allen profile image
Tall_Allen in reply to Thunderball1

I know the drugs are unproven. There are indeed proofs in medicine. Proof of efficacy and safety come from randomized clinical trials (RCTs).

TJdog profile image
TJdog in reply to Thunderball1

I looked on the abbreviation page, and I would like to know what COC means please

Thank you

Thunderball1 profile image
Thunderball1 in reply to TJdog

Google or whatever it. It's obvious on internet.

Thunderball1 profile image
Thunderball1 in reply to Tall_Allen

Thanks for your reply TA and I did check out both your refs to your own blog.

You wrote:

"Clinical staging is based on palpability, not MRI, PET scan or biopsy. If it is not felt on DRE, it is stage cT1c. If a lump felt, it is stage cT2a. Both cT1c and cT2a are low risk features. T stage is based on DRE only. Imaging is never used. (Nor is biopsy) Staging (used by NCCN) is based on AJCC 8th edition"

But biopsy is used (AJCC 8), eg,

cancer.org/cancer/types/pro...

Above is the AJCC8 staging table from UpToDate which is usually a reliable, current, peer-reviewed resource used by medical pros (but $50 per month). If it is wrong please post link to AJCC8 table.

Above table mentions biopsy for T1c so why do you say biopsy is not used. Anyway, I have studied this confusion all day because to make it worse, the urologist wrote I am pT2c (should be if anything a "c" not a "p"?! so cT2c) which I have contacted him about to amend, and to discuss DRE with me. We shall see. If you have a copy of the actual correct AJCC8 staging table or section on not using imaging that would be as I am pretty confused now. Seems many sites do not show the new staging table or if they do, why is biopsy there when you say it isn't??

I read a summary of AJCC8 here:

facs.org/media/wjajnumr/ajc...

Prostate-AJCC TNM Staging 8th Edition-clinical stage

• In the 8th Edition, clinical T-category should still be based only

on the digital rectal examination (DRE) findings.

Neither imaging information or tumor laterally information from

the prostate biopsy should be used for clinical T category.

• A tumor that is found in one or both sides by needle biopsy, but

is not palpable is classified as T1c

• Clinical T category should always reflect DRE findings only

• Although imaging, particularly multi-parametric prostate MRI,

has improved, imaging should NOT be used for T-category

assessment

Prostate-AJCC TNM Staging 8th Edition-clinical stage

• In the 8th Edition, clinical T-category should still be based only

on the digital rectal examination (DRE) findings.

• Neither imaging information or tumor laterally information from

the prostate biopsy should be used for clinical T category.

• A tumor that is found in one or both sides by needle biopsy, but

is not palpable is classified as T1c

• Clinical T category should always reflect DRE findings only

• Although imaging, particularly multi-parametric prostate MRI,

has improved, imaging should NOT be used for T-category

assessment.

---

However, if a European staging system is used then this applies:

"Although the 2017 American Joint Committee on Cancer (AJCC) staging 8th edition specifically states that clinical staging should be based on digital rectal examination (DRE) only, such an explicit comment is not made by the UICC. Since clinical stage as assessed by DRE only, it is included in the EAU (D’Amico) risk group classification, cT-stage should be based on DRE findings and not on imaging. Additional staging information based on imaging should be reported separately. A non-palpable PCa with bilateral positive biopsies and extra-prostatic extension (EPE) on MRI would therefore be categorized as cT1c with a separate report of MRI findings"

uroweb.org/guidelines/prost...

It also mentions biopsy in table on staging for T1c.

I have asked urologist to explain what staging system, if any, he uses here, and to do another DRE and describe it to me. I certainly want AS if appropriate and not any radical treatment.

Thanks to those who have responded in a positive way and also those who messaged me privately saying that I am welcome.

Is this AJCC8 as it claims? If not please post link to AJCC table.
Tall_Allen profile image
Tall_Allen in reply to Thunderball1

Biopsy is NOT used for clinical T staging. It is used for other purposes (i,e,, tumor grade). I don't see what is so difficult for you to understand. I already provided the link to AJCC ver. 8. You may need a break to let this new (to you) info penetrate.

Thunderball1 profile image
Thunderball1 in reply to Tall_Allen

Hey man, what IS your problem?? You talk down to people on here all the time like that?? You must have a very device and are compensating. I was warned by another privately about you. He said to ignore you. Anyway, I have a PhD in clinical science and don't need to read you "PCa blog" for advice. You did NOT provide a link to AJCC8, only to your blog!

Tall_Allen profile image
Tall_Allen in reply to Thunderball1

I know that some people like yourself are challenged by all the jargon, so I'll be patient, and explain so that even a man with a PhD in clinical science can understand.

The very first line says: "The standard staging manual for prostate cancer is a consensus issued by the American Joint Committee on Cancer (AJCC). They have now issued the 8th edition (at this link), which will become effective beginning January 2018. For the most part, it is consistent with the 7th edition."

If you click on the words "at this link" it takes you to the following peer-reviewed journal article:

acsjournals.onlinelibrary.w...

The article describes the changes in the 8th edition and provides a link to it.. It says, "Assigning the clinical T category (cT) is accomplished using information from the DRE of the prostate and should always reflect DRE findings only."

Thunderball1 profile image
Thunderball1 in reply to Tall_Allen

>I know that some people like yourself are challenged by all the jargon, so I'll be patient, and explain so that even a man with a PhD in clinical science can understand.

You posted this 15 hrs ago, AFTER you claimed you sent the link. You didn't. So its untrue. You only posted a link to your own promotional platform and blog. Others have PM'd me about how abrasive you are. I guess they are afraid to publicly call you out. You might reflect on that. Also, your condescending tone continues to be hilarious, as if we are all stoopid. Thanks for finally posting the kind of information I meant, something official, even if it was late and after all the confusion you have caused me, and a few others too. Happy to move on, bud, but if you are like that again to me I will push back. Cheers.

Tall_Allen profile image
Tall_Allen in reply to Thunderball1

I assumed you knew how to click on a link in an article - maybe that's a skill they didn't teach in NZ. You may be interested to learn that they have things now called time zones, and we are 19 hours apart. This forum is no place for threats and you don't belong here.

Thunderball1 profile image
Thunderball1 in reply to Tall_Allen

"Biopsy is NOT used for clinical T staging. It is used for other purposes (i,e,, tumor grade)."

Can you read??

STAGING USING BIOPSY HISTOLOGY
Tall_Allen profile image
Tall_Allen in reply to Thunderball1

A biopsy is used to determine whether or not one has prostate cancer at all. If no PCa is found on a biopsy - you do NOT have a diagnosis of prostate cancer - get it now?

T1a and T1b are tumors INCIDENTALLY found during TURP and have nothing to your case. T1c is used when cancer is found on a biopsy AND nothing is palpated. T2 is used ONLY if the cancer is palpable.

Thunderball1 profile image
Thunderball1 in reply to Tall_Allen

And this is from YOUR very own beloved blog!!

prostatecancer.news/2017/03...

Please explain because you are confusing and/or confused. Why are you confusing everything? Are you confused?

Is anyone else confused by his strange comments about staging and biopsy/imaging?

I came here to seek clarity. This guy purports to run the show here with his blog an all but makes no sense.

Biopsy not involved in staging?? HUH??
Tall_Allen profile image
Tall_Allen in reply to Thunderball1

I hope you understand by now. No one else is confused by it, just you.

Vynbal profile image
Vynbal in reply to Tall_Allen

If neither biopsy nor imaging is used for clinical T staging, is stage T3 only diagnosed post-RP?

Tall_Allen profile image
Tall_Allen in reply to Vynbal

EPE can be palpated. When the tumor is bulging, it is designated T3a. The authors state: "Although MRI provides the best information among all imaging methods regarding extraprostatic extension, it has proven insufficiently sensitive to justify routine use in all but higher risk tumors.17, 18 MRI has proven more useful in evaluating for seminal vesicle invasion), and MRI-guided biopsies can be obtained to confirm the presence of seminal vesicle invasion.17, 18"

When there is a large bulge of tumor, outside of the capsule, it can be felt and seen. When the extension is only focal, it can't be reliably diagnosed by DRE or MRI. For this reason, 95% of all clinical staging is cT1c or cT2a. It is unusual for a tumor to be T3 that is not high grade or high PSA, so the other risk factors pick up the slack in the risk categorization.

As a practical matter, there are workarounds:

prostatecancer.news/2020/04...

TJGuy profile image
TJGuy in reply to Tall_Allen

There doesn't need to be a lump, if your prostate feels abnormal such as hard not soft that is also cT2 since cancer was found and you report Gleason 6.

Gleason 6 is cancer thought to not be aggressive enough to spread, but it's possible you can still have cancer that has spread at this point. MRI should be used to look for whether it has spread. Never rely on a PSA needing to be 4 or above, to be of concern.

Never let you primary care physician tell you to skip PSA testing or annual exams or your healthy as a horse.

Cancer starts innocent enough you won't necessarily have any symptoms to be aware of, but the cancer mutates and then you have Gleason 7 and so on 8, 9, 10

Note PSA can grow extremely fast, going from 1.0 to twenty or thirty in a couple or three years, cancer can spread out of control if you don't keep your eye firmly on this.

Don't rely just on your primary care in physician most really are pretty much blind to knowing much about prostate cancer. At this point for you, make sure you are getting PSA tests multiple times per year looking for any rise.

Get the DRE at least every year. And again your doctor might not know what their doing, mine didn't, but talked like he was an authority on it Find another primary care doctor if they fight you or are not on board. Actually tell they right up front you will fire them and find another.

Sounds like your's is watching this and is taking the risk seriously based on the suggestion of surgery. Get multiple opinions from urologist including those at major cancer hospitals

Are you on finisteride or propecia if so ANY rise, I repeat ANY rise, is of concern to see a urologist.

A rise of 0.3 in a year is concerning for any one else to run to a urologist.

You never want to get advanced PC your life will never be the same, make sure you take precautions at this point.

Urologist will suggest surgery, radiologist suggest radiation, surgery would very likely affect your sex life negatively, perhaps end it altogether.

Tall_Allen profile image
Tall_Allen in reply to TJGuy

According to the AJCC 8th edition:

T2 Tumor is palpable and confined within prostate

T2a Tumor involves one-half of one side or less

T2b Tumor involves more than one-half of one side but not both sides

T2c Tumor involves both sides

Thunderball1 profile image
Thunderball1 in reply to TJGuy

Thanks TJ, no not on finisteride or propecia - I didn't know what they were! My PSA is around 7 but after food poisoning in March (yersinia) it went over 20! It goes up and down even if tested twice on one day as I did once (5.36 and 5.90). The labs here are, IMO, unreliable but it's all we got. And imaging...PSMA is good but very expensive. It showed no spread so far. That's why I am keen on trying some drugs to shrink it/maintain it as is.

Seasid profile image
Seasid in reply to Thunderball1

I can recommend you to see professor Izard in Australia. He was a first specialist who see me and I was very lucky. I understand that you are a PhD level person but you are not a doctor and it is about your health. Therefore find experienced doctors and consult them. After all it is about your health.

It is totally OK that you want to have some input but just a little help from an experienced medical doctor could be useful.

We all on this forum encourage you to think with your own had and to try to understand as much as possible. After all you should be comfortable with your own decision. It depends on your values and circumstances etc.

Just don't think that because you have a capacity to understand medicine that you don't need good doctors. I actually moved close to the Hospital to see the doctors more often. They call me frequent flier.

I can just say that I know a member here who was diagnosed with Gleason 6 and now he left nothing on the table and fighting for his life.

I am using this site as a compass to navigate and to socialize. You could get the latest information here. For my mental health it is very important that we have always new hope by reading about new developments.

I could give you the advice to go to an RO and irradiate your prostate if you want to be sure that you will live for a very long time. It is really up to you.

My goal is to live as long as I can.

The CEO of the Merck company said that one out of three prostate cancer patients will become metastatic and that 70% of the metastatic patients will die inside 5 years. I didn't checked this information but you could consult the internet.

I wish you good luck.

István

Thunderball1 profile image
Thunderball1 in reply to Seasid

Thank you for your time to respond and attend to my dilemma. I appreciate and will reconsider it.

Seasid profile image
Seasid in reply to Thunderball1

I also have sleep apnoea and I was suffering one year because of a faulty mask.

You are doing great that you are taking active action yourself. Jump left and right and with the help of good doctors you will be fine. Just stay alter and you will find a best solution which will sure your values. You are not in a hurry and find a best treatment decision.

I was also in a divorce process and had to see lawyers 100 times until I become comfortable what I was doing.

I made a mistake that I underestimated prostate cancer and now I have a terminal illness.

You will be fine just consult doctors and you are right that you are double checking every information.

You should approach your condition high level. With the help of good doctors you should be able to find a best solution. You have to make an informed decision. Just letting you know if it helps you to see your situation from high level, TA irradiated with SBRT his cancer (it was a best value for money) and he also had like you Gleason 6.

I will send you a profile of the member diagnosed with Gleason 6 and he made bad early treatment decisions as a result of underestimating his cancer.

You don't have to rush with your decision, take your time and talk to good doctors.

KocoPr profile image
KocoPr

Since you don’t have advanced prostate cancer you should move this discussion to Fight Prostate Cancer group and save this group for our advanced warriors.

Although it is always good to get TA’s advice first and anytime you have SOC questions.

The FPC group is geared to non SOC protocols like COC, BAT, Supplements , etc…

There is also FB group geared to COC protocol.

I did COC for a very short while as i was very impressed with the credentials of the doctor assigned me I couldn’t nor could my wide understand a thing he was saying. I am also not a fan of messing with the gut microbiome with doxycycline and metformin. I could not tolerate metformin. Doxy gave me gut disbiosis (my diagnosis) as it created an autoimmune response to dairy when i took a 21 day regimen for lymes disease.

Thunderball1 profile image
Thunderball1 in reply to KocoPr

I joined that group and did a search. There are zero posts on "COC protocol" and two on "repurposed drugs". I am aware of the FB groups. I thought you men of experience would be the right place to go...

Scout4answers profile image
Scout4answers

I had a DX similar to yours in 2014, the Doctor assured me that he had never seen that type of PCa progress to a more virulent type. In 2018 mine did exactly that. (See my profile for details)

Active Surveillance makes sense but be very vigilant. get checked every 3 months and have a plan of what you will do if it does progress. Cures are available if it has not escaped the capsule.

Your concern over side effects is warranted. It is all about timing and knowledge, this is the right place to arm yourself with the later.

Boywonder56 profile image
Boywonder56

I second koko....good luck

Thunderball1 profile image
Thunderball1 in reply to Boywonder56

Boy, I wonder about you.

Thunderball1 profile image
Thunderball1 in reply to Boywonder56

WHY?

London441 profile image
London441

It is true that you do not have ‘advanced prostate cancer’. Some of the people in this forum advising you don’t have it either, so you’re not in the ‘wrong’ place for your questions.

However, you appear to be in a familiar condition-trying to find information that justifies taking action. No need to attack those trying to dissuade you from this. AS is clearly your best option at this point.

Consider how much over treatment (especially prostatectomy) is done for low stage disease, and that AS has become a much more effective tool over time.

An RP for your condition is crazy to be sure, but so is searching for a treatment path. Relax and enjoy yourself-while watching it carefully. The problem with over treatment of low risk is that you will never know if you actually needed it.

Thunderball1 profile image
Thunderball1 in reply to London441

Thank you so much for the encouragement. A virtual gift is on its way to you. I will respond more fully after I finish my wine!

Dynamo profile image
Dynamo

Take your time & maybe consult with a Medical Oncologist.. Uro's almost always want to cut it out but that rarely cures you.. Be warned about that as the Uro's will not tell you about all the consequences of a RP.. I had mine in 1995 when I was 52 and haven't had any good sex since than.. Pitts... But hey I'm still alive at 79 and been thru Radiation Chemo etc. and I am left with an "Itsy Bitsy Teeny Weinie" Luckily for me my wife is ok with that.. Good luck.

Thunderball1 profile image
Thunderball1 in reply to Dynamo

Man, I am feeling your pain. I will write more later after I finish my wine and if they haven't cancelled me.

PSAed profile image
PSAed in reply to Thunderball1

Judging from the way you took a swipe at respected poster TA, maybe you've already had too much wine!

Thunderball1 profile image
Thunderball1 in reply to PSAed

Respected for bullying? Wow.

addicted2cycling profile image
addicted2cycling in reply to Thunderball1

Thunderball1 wrote -- " ... I will write more later after I finish my wine and if they haven't cancelled me. "

Drink up and just chill a bit 😀and fear not about being cancelled.

BTW, I'm a 5+5 and didn't worry half as much as you. IMO, you have time on your side to research before jumping in. Stick around and have some great Parmigiano Reggiano with a good Organic RED..

Thunderball1 profile image
Thunderball1 in reply to addicted2cycling

Now that's the kind of interaction I can appreciate! Cheers.

addicted2cycling profile image
addicted2cycling in reply to Thunderball1

Cheers back at you and this 73yo Unique Eunuch geezer is having some Red Organic 🍷and 24 month Parmigiano Reggiano 🧀 (straight up-just sliced off the wedge) right now for lunch. I bicycled 35 miles this morning starting at 1:05AM -- so I owe it to myself as a reward. 😆

KocoPr profile image
KocoPr

Enjoy the wine and take a deep breath, but stay vigilant.

I was staged with gleason 6 with only 1 core with 1% at age 53 back in 2013 and PSA of 5.6. I had PSA and DRE tested every year since 40 years old. I was put on watchful waiting for a year then Active Surveillance but i did not want needle biopsies every year so i just did the contrast scan and a bunch of genetic research into family medical history and I found several uncles had died from PCa, and now 2 brothers with it. This led me to finding i had a FGFR4 Gly388Arg polymorphism through 23andme. Luckily for me i convinced the Urologist to take my prostate out. I am convinced it saved my life because the surgery showed my cancer had already escaped in 2 places and i had perineural invasion. I am now advanced with mets in chest and clavicle and of course in pelvis.

Presently on ADT (Orgovyx and Darolutamide) and doing all kinds of supplements on and off but presently doing non SOC BAT protocol.

What I am getting at is the FPC group is a perfect fit for you if you want to stray from SOC. It’s where us advanced warriors go to discuss Vit, Sups, Repurposed drugs etc.

I agree there is not a lot on COC protocol but plenty on the individual repurposed drugs in the COC protocol.

Thunderball1 profile image
Thunderball1 in reply to KocoPr

I was privately messaged to ignore you! I'll give you another chance if you give me. Thanks very much for your info. I will consider it carefully later, after I finish m wine!

Papa1 profile image
Papa1

Patrick Walsh at Hopkins is sort of the inventor of watchful waiting. Don’t know if he’s still active or doing tele-consults, but might be worth a shot. Might get with one of his fellows or residents.

He’s a rare uro who doesn’t always cut first. The group also works closely with MOs and ROs at Hopkins, so it’s pretty full service.

Thunderball1 profile image
Thunderball1 in reply to Papa1

Thanks for the intel. I will look into it after I finish my pinot noir! Thanks again.

gsun profile image
gsun in reply to Thunderball1

You sure talk about your wine a lot. Maybe slow down a bit. TA is a great source here but he can be rough on people sometimes. I don't know why but the best approach with him is not calling out for a fight, if you even care. You can see he is not responding anymore and I'm sure he won't. Good luck with your cancer. I hope you don't join the rest of us in this group!

Thunderball1 profile image
Thunderball1 in reply to gsun

Profound!

Thunderball1 profile image
Thunderball1 in reply to gsun

I am a scientific and sometimes artistic guy. I respect clear thought. I despise schucksters. He has not apologised for his errors. It's up to him to save face. I have nothing to lose. I only joined yesterday and can leave you all with nothing more if you like.

swwags profile image
swwags in reply to Thunderball1

You've been out here one day. You were somehow already privately advised to ignore KocoPr and you're picking a fight with another member, TA. Please add me to your ignore list. Yes, TA and others can be curt, but you are simply being aggressive because you don't like his information or his manners?.

You comment above, "I only joined yesterday and can leave you all with nothing more if you like."

That works, or you can also consider apologizing to the rest of us for your aggressive behavior. I have stage 4 prostate cancer and blood cancer. I read posts to learn. I learned nothing here in this post.

In any event, I wish you the best of health and hope you live a long and healthy life.

Thunderball1 profile image
Thunderball1

FYI on red wine etc...UpToDate 2023

I subscribe at USD$50 a month and then quit after downloading what I need. Send me your requests for info and I'll try to help.

Alcohol and PCa
Daveofnj profile image
Daveofnj in reply to Thunderball1

If I were you, I would look into focal therapy (laser, cryo, tulsa, etc.) and also COC. Did you have your biopsy samples sent for genomic testing?

Thunderball1 profile image
Thunderball1 in reply to Daveofnj

No g testing. NZ does not understand or support any advanced concepts. It is a vigorously backwards country.

lcfcpolo profile image
lcfcpolo

As someone who is on the Care oncology clinic, COC, protocol but diagnosed with widespread mets and lymph nodes involvement, I can give my thoughts and observations.

1. COC have no stats on if there protocol actually works for any stage prostate cancer. Definitely recommend calling them and asking them direct incase this has changed. Fundamentally for someone on Active surveillance like your good self, you should definitely contact COC directly.

2. Take the COC protocol along with other standard of care prescribed by a urologist or medical oncologist. Do not just do the COC protocol if ADT, chemotherapy are recommended.

3. I personally agree with the principles of what Jane is trying to achieve but it is pretty much impossible to find a roadmap for prostate cancer that actually works. Blocking all of the pathways requires masses of drugs and supplements. As per 2 above, Jane herself is quite clear that you should do chemotherapy etc if this is what your doctor prescribed. COC is an adjuvant, not instead, of standard of care.

4. There are other supplements not prescribed by Care oncology. The one with a clinical trial is Sulphoraphane, a broccoli extract. The best product was developed in France.

5. Other supplements are all subjective without trials. A friend of mine here takes modified citrus pectin. I also take pomi-t and a gut bio product 'yourgut'.

There are an infinite number of possible repurposed drugs and supplements that you can look at. If your active surveillance, you should run any by a doctor.

Good luck and hopefully you stay on active surveillance for life.

dhccpa profile image
dhccpa in reply to lcfcpolo

How long have you been on COC? Thanks

I just saw it in profile. Thanks.

lcfcpolo profile image
lcfcpolo in reply to dhccpa

I think I started in January 2021, so two and a half years. Just waiting for my next 3 months to arrive. Neither I or COC know if it is doing anything but when your diagnosed terminal, you have to go with your gut instinct and your doctor's say so

dhccpa profile image
dhccpa in reply to lcfcpolo

Thanks. I contacted them back in March 2020 but ultimately decided to work out my own protocol. I continue to follow them and am anxious to see some results for PCa from their years of operation.

Daveofnj profile image
Daveofnj in reply to lcfcpolo

Agree. I tried to follow the Jane protocol for two years but had to reduce the number of pills because of stomach upset. I was probably taking 100 pills a day at one point.

Thunderball1 profile image
Thunderball1 in reply to lcfcpolo

There's a longer PDF but can't attach here.

metro map for PCa
pilot52 profile image
pilot52

I will throw in here......add 150 to 300 minutes of moderate to intense work outs a week. To include aerobic and weight training....You guys can hammer all of the above out ...Blue Skies , Sky King and Penny ( woof) Sky King is a little before your time...

fast_eddie profile image
fast_eddie

After full gland HIFU ablation I adhere to the statin/metformin portion of the COC protocol. I also throw in IP-6 Inositol and Modified Citrus Pectin supplements for good measure. I hit the gym three times a week for weights and aerobics.

Thunderball1 profile image
Thunderball1 in reply to fast_eddie

Thanks eddie.

mistersafety profile image
mistersafety

My advice:

1. Start working on your treatment plan B in case you can't outsmart your cancer. Prostate cancer will not respect your academic credentials or intelligence.

2. Great to ask for advice. Not so great to pick fights with those whose advice you don't like or agree with. Especially in a forum where nearly everyone has more lived experience with prostate cancer than you, better & more polite to just move on if you don't find comments to be helpful.

3. Be concise.

4. Resolve to post while sober.

RMontana profile image
RMontana

You definitely are at a good point where you need to carefully consider what you are going to do next. And you are correct, no matter what anyone says every single treatment that you will receive will have an impact on your quality of life, erectile function and potential incontinence. Don’t let anyone tell you otherwise. At the same time if you need any of these treatment take them. They will in the end save your life. But go into them with your eyes wide open.

…if it’s of any benefit, I sent you a couple of posts that I have made. One is a spirited debate over which is better radiation or surgery. This is in the event that you ever have to move toward either.

healthunlocked.com/active-s...

The other post that I will send you is my woulda- coulda-shoulda list. It’s just a grab bag that I have developed over time on what I would do, if by some miracle, I could get in a time machine and go back. Of course I can’t but if there’s one speck of one grain of information that you can get from this that can help you it makes my disease worthwhile. So take a look at this list as well and see if you can avoid stumbling on some areas that have plagued me since I started down my path and journey.

healthunlocked.com/active-s...

You’re in great shape and you’re way ahead of the curve here. There’s absolutely no reason that you should not do very well. Make it your overriding objective to treat this disease before it escapes your prostate. If you can do that you got this thing licked. Also, as I mentioned in my list, treat all three aspects of this diseases impact at the same time; fighting cancer, incontinence and erectile dysfunction. Do not do these and series, but do them in parallel. That would be the only thing that I would emphasize and that many times is not considered as it should in the treatment for prostate cancer.

Good luck to you. Rick.

Thunderball1 profile image
Thunderball1 in reply to RMontana

Many thanks for your caring post. I will read your links.

Thunderball1 profile image
Thunderball1 in reply to Thunderball1

Thanks, I replied on the links.

Thunderball1 profile image
Thunderball1

To those who told me to go away to Fight Prostate Cancer...that group tells people to come here! To Advanced Prostate Cancer!

endless circle
j-o-h-n profile image
j-o-h-n

I do not want to risk the side effects of ED that's music to your flock of sheep's ears... And Don't forget the NZ rule 1...... to screw those wonderful animals make sure they're facing the edge of a cliff, this way you're sure they'll push back...

BTW Greetings from Us...... We too also drink wine when we admire our doctorate degree over and over.

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 08/01/2023 11:07 PM DST

j-o-h-n profile image
j-o-h-n in reply to j-o-h-n

From Thunderballs1 to j-o-h-n

Speaking from years of your own such experience I'm sure! I wish you were on the edge of a cliff. laughin it off!...

j-o-h-n profile image
j-o-h-n in reply to j-o-h-n

From J-o-h-n to Thunderballs1.

That's definitely is a knee slapper...

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 08/02/2023 1:19 PM DST

Thunderball1 profile image
Thunderball1

I posted but not much reply.

Thunderball1 profile image
Thunderball1

My uro suggested PSMA scan and basically assumes it supercedes/surpasses everything else like the fusion MRI and biopsy I did and he really trusts the PSMA. Like brain imaging, when things light up people believe their eyes. It seems following rather sharp, pointed, cutting (eek!!) comments about staging on here (e.g., "staging is only to be based on DRE not imaging or biopsy") I have asked him to re-check my staging. He gave me pT2c because MRI and biopsy had a small amount of bilateral Grade 1 and it was anterior (so hard to feel in principle he said, so I guess would be T1 if only using DRE. Why he wrote a "p" - pT2c - is a mystery to me. It should be cT2c, right? Anyway, on the basis of the scan he recommends robocut. I imagine he will be offended now for me not following "his" advice. They say "if it was me", but he is not me. Many of your comments have recognised this fact - that the choice and decision is a very personal context-dependent one. I lost my wife 2 years ago to cancer (after she used the COC protocol to extend her survival). I have a new partner and it is very important to me that my long-lost and new-found social activity is not interrupted.

Thunderball1 profile image
Thunderball1

Thanks to any who took time and addressed my question and for your patience with the new guy. I have learned a lot from you (and need to re-read your posts) even if most might not care for the topic.

Thunderball1 profile image
Thunderball1

A related post:

healthunlocked.com/advanced...

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