What to expect with mets and no treat... - Advanced Prostate...

Advanced Prostate Cancer

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What to expect with mets and no treatment

Nwdx profile image
Nwdx
129 Replies

4 months of study everywhere online- future life reading all the suffering here on this forum with side effects, impotence, recurrence, hormone therapy, other side effects, etc. My heart goes out to all of you, and my hats off to you warriors, who have chosen to fight this battle with conventional medical treatments and post your stories here. Thank you all.

I am interested to know what to expect without any form of treatment before hospice care in the future, I am now at the "acceptance" stage of grief so easier to be logical. At this point I am NOT following conventional anything and trying to plan ahead as to value of relocation (I am outside USA) for medicare use (They don't cover hospice, right?).

There are so many actions and decisions I need to make while my brain still functions, such as selling my assets and go on a party or year(s) long trip as my finances permit. I am divorced and independent, no heirs, without others influence or agendas, no long discussions, no debates- all are my own decisions- no 3rd parties I need to worry about financially, no family obligations, debts, etc.

I just can't find details of about how long the pain and suffering lasts without treatment but seems like a long expensive miserable time. Is it? Questions I have are about if anyone gets stuck with required daily catheter use, diapers, colostomy bag (colon spread), loss of mobility for spinal issues, loss of energy to get out of bed, the average length of time (maximum?)-on a morphine drip until expiration, etc. I was there watching my my own fathers demise and his misery daily for 3 months, then on morphine until he died of another cancer- it was disgusting.

Can I hear from anyone who might be in the same boat? Or where there might be online journals, or videos that include all the ugly anecdotal details of disease progression? I don't believe there are any studies on this, but I could be wrong.

Either first hand or 2nd hand experience (such as spouses or friends of deceased and what they observed) about what to expect (IE: Length of time stuck in bed before expiration, any average?)

For example, has anyone here delayed treatment for a long time on purpose and is still living and PSA is still high? If so, what limitations they have (wheel chair or cane?), or someone who only discovered PCa after painful urinary symptoms or other symptoms of spread. Perhaps someone reading this now is immobile or in hospice, that wants to share their story to help others so they can make better decisions. Statistically it appears that spinal, bone, pelvis, bladder spread is most common versus brain appears less common.

Interesting about alternative thinkers like Dr. MacDougall's opinion that 1 cm tumor = already 10 years of cancer growth: youtube.com/watch?v=-lt7UO3...

Thank you kindly in advance, I am a very grateful person, traveled the world, done everything I ever wanted to do, helped many other people solve their problems, lived a non-materialistic life with great people around me and a very, very full and unconventional life .

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129 Replies
Tall_Allen profile image
Tall_Allen

Expect unendurable pain. Also expect fractures and spinal compression, which might be crippling, so that you spend the rest of your life in bed and a wheelchair. Unfortunately, I knew 2 guys who chose that route.

Those who choose medication live many years pain and fracture-free.

It is unfortunate that some men make the decision based on anecdotes on sites like this from those men who complain about side effects. Such men are apt to fall prey to misinformation from youtube videos. What about the hundreds of thousands of men who have minimal side effects and lead full and happy lives?

MoonRocket profile image
MoonRocket in reply to Tall_Allen

I count myself among the men leading a full and happy life with hardly any SEs. I do more on ADT and now mono-xtandi, than men my age who have normal T levels. I find it absolutely nuts when men throw on the towel based on posts on this or any other site. It's sad.

Nwdx profile image
Nwdx in reply to MoonRocket

Are you fully potent?

That's me I guess- a nut, I am a skeptic, unconventional, plot and plan, and create my own niche and not follow the crowd, retired in early 40's.

MoonRocket profile image
MoonRocket in reply to Nwdx

I am with the assistant of Cialis and Trimix

PELHA profile image
PELHA in reply to MoonRocket

Same with my husband. He uses either the trimix or a half Viagra. The man has almost zero T at this point but fully functional!

7 years ago after radiation seeds and his first post op Lupron shot that doctor said nothing about these stimulants. So there was zero action for over a year. Such a difference. Not all drugs are bad!

fourputt profile image
fourputt in reply to MoonRocket

I really wish more folks like you would post here. Thank you for your uplifting message.

SteveTheJ profile image
SteveTheJ in reply to MoonRocket

Everything is anecdotal and so is this. Nobody can predict your lifespan or the side effects you'll experience. Thinking/worrying about those things in itself will likely shorten your lifespan and definitely make what you have more miserable.

Your choice is, either let the cancer run its course with the concommitant pain, etc or give yourself a chance to live by taking treatment. As you say, you have options left to you.

MoonRocket profile image
MoonRocket in reply to SteveTheJ

To whom is this reply directed? If I am the target, I have no idea what you're point is.

SteveTheJ profile image
SteveTheJ in reply to MoonRocket

Move on, nothing to see here.

MoonRocket profile image
MoonRocket in reply to SteveTheJ

Move on from what? You replied to my post...have the decency to explain yourself.

I think I understand what "theJ" stands for and now I know you're the site troll also.

spencoid2 profile image
spencoid2 in reply to Tall_Allen

I do not plan to abandon treatment. I live in the US and have good doctors and good insurance. However it seems that there are not a lot of treatment options left. Chemo is over, did not do very much. Pluvicto was put on hold due to blood levels. Starting focused radiation to the worst of 7 or so bone mets. Not bothering with the lymph nodes. I think it is to buy time until Pluvicto or something else might be tried. So if the focused radiation is really just palliative care and if the cancer will still progress (or maybe "debulking" will slow it down) how long can i realistically expect to live? I am 70 next month. Gleason 9 current PSA is about 50. Doubling rate is 1.6 months. Castrate resistant supposedly. Only targetable mutation is CDK 12 but no one has suggested how that can be used to my advantage.

Also xgeva was recommended but no one seems to be insuring that it happens. Should i insist? Do not want any more fractures and some of the bone lesions do seem like they could be indicative of bone weakness as they are fairly painful. Bone scan does not show lacking bone density.

Nwdx profile image
Nwdx in reply to Tall_Allen

Thank you, I understand you are the long standing survivor and give lot's of great input here, much appreciated to read your thoughts over this past couple months on other posts. I thought the pain can be dealt with careful planning and timing- is that wrong?

You mention: "What about the hundreds of thousands of men who have minimal side effects and lead full and happy lives?"- I sure would like to find those stories that include full sexual performance ability, specifically some who had small beam thin beam radiation or other accurate radiation as that's the only option I have thought about- "full and happy lives" hmmm. Meaning healthy but impotent or non-impotent?, I don't believe most men will be truly honest about their actual sexual performance to others, it's usually pretty secret and not discussed and embarrassing- so to get to the truth is kinda shaky. And not sure if Dr's are are honest about it either as it would dissuade a future customer for his scalpel. All the reading numerous studies and decent sites on surgery is 50% chance of impotence. I have yet to read many stories here or elsewhere about success.

Treatment side effects like energy loss, weight gain- nothing like that would I even complain about- sexual side effects are undeniable, which scared me- I have sexually active friends in their late 70's and older. One 78 and one nearly 90- both lifetime vegan/vegetarian, no meat for decades- and no PCa. Few health problems, active walkers.

What is "success"- in this awful disease? To live to 80 or 90 with a post menopausal wife who already became disinterested in playing around? I mean, sure their idea of life is to grow old to watch their grandchildren and play golf. But they accept the fact they have no sexual function anymore- that's not me, no postmenopausal wife, not a golfer or any grandchildren.

The plant based diet has been all over the net and it seems logical to me- so that's my current course of action. I am curious, do you believe Dr. MacDougall is correct about what he says about diet?

Dr. Sholz and others state high percentage chance of impotence, which ADT seems certain . Surgery is hit and miss, recurrence in time- or worse yet damaged front nerves, now with corporate owned systems or insurance and hospitals pressure Dr's to rush surgeries so they can make more money for their shareholders... patient wakes up and Dr. says: "I believe we got it all... oh and btw- we had to remove your erectile nerves". Meanwhile, they return here a few years later to state it recurred (micromitastisis) and what are options...

Thank you for your input.

hopeful1956 profile image
hopeful1956 in reply to Nwdx

"What is "success"- in this awful disease? To live to 80 or 90 with a post menopausal wife who already became disinterested in playing around? I mean, sure their idea of life is to grow old to watch their grandchildren and play golf. But they accept the fact they have no sexual function anymore- that's not me, no postmenopausal wife, not a golfer or any grandchildren."

Well, most folks would love to live this long with their wife, grandkids and play golf. You're only thinking with your dick and not your brain. Hopefully you will pass away with a smile on your face, but more than likely not.

fourputt profile image
fourputt in reply to hopeful1956

Bravo !

dentaltwin profile image
dentaltwin in reply to hopeful1956

I think you've put your "finger" on the problem here. Had Nwdx said up front that his priority was sexual function above all else, the replies certainly would have been different--and maybe more useful to him.

Nwdx profile image
Nwdx in reply to dentaltwin

If you read my other post, and profile you would not have wasted space posting that.

Profile: "Sexual function and quality of life more important than length of life. "

Tommyj2 profile image
Tommyj2 in reply to hopeful1956

More than a little “judgy” aren’t we? The guy is clearly saying that what floats his QOL boat is sex. His life path appears to have deviated from the “norm” and he does not have grandchildren to absorb him…a wife to support him… or most of the accoutrements of a more standard life……losing sexual function would be quite a blow. To say that he is thinking only with his dick is a simplification.

hopeful1956 profile image
hopeful1956 in reply to Tommyj2

I still stand by my comment. I'm not being "judgy" just realistic and honest. He needs to care and worry of the realty of what's to come. Too each their own Tommyj2.

Nfler profile image
Nfler in reply to hopeful1956

It seems to b you are judgy and your telling him what he needs to do, why don’t you just worry about what you need to do instead of trying to align people to your agenda…

Nwdx profile image
Nwdx in reply to hopeful1956

Every forum has people like you on it. I didn't expect people to waste their time posting like this, I asked for what to expect not to judge me for my decision.

Tommyj2 profile image
Tommyj2 in reply to Nwdx

I’m confused….have you gotten NO tx for your prostate cancer? Appears that your definition of QOL is maintaining sexual function…..that is a crap shoot with any of the current treatments….but you haven’t said anything about your disease status……if you are advanced your time to enjoy sex is likely to be quite time limited….a trade off for sure. Hmmm..a couple of years of good sexual functioning then a rather painful demise over a couple more years vs a decade of life with compromised sexual function…..tough call. Particularly when we don’t know your objective disease status……. I know a fellow now who has chosen to avoid conventional treatment and is still going strong after seven years….you too could be one of the lucky ones. Are you a gambling man ?

Nwdx profile image
Nwdx in reply to Tommyj2

Thank you for your comment. Diet change only. Not a tough call for me, I decided immediately on discovery not to compromise sexual function. I hope to be lucky. So far 2 PSA tests 6 in 2016 and now 17 in 2023 no treatment, no real symptoms, no Dr. visits, no biopsy only ultrasound measure of the lesion, no idea where I am with gleason on this mess. But attempting to gather anecdotal stories of end of days. I have no symptoms and have had a super sex life over the years, which no plans on changing. Thank you for the comment too on your friend, no treatment and 7 years. I am not a gambler as far as casino's, but I am an entrepreneur, started companies, had up's and downs, speculative deals- I am frugal and don't throw money around, but tolerance for risk depends on the subject. With this PCa, I am willing to gamble- I just am gathering info from people who have been through non-treatment.

Tommyj2 profile image
Tommyj2 in reply to Nwdx

The guy who has lasted 7 yrs HAS been, biopsied and scanned a few times…..his decision to use only alternative txs is predicated partly on knowing where he objectively stands medically. You might want to keep in mind that if your cancer is still localized you could be a candidate for a number of treatments that focus only on existing tumors and have excellent erectile outcomes…. They would doubtless recommend ADT to shrink the tumors but you can always refuse that…….makes sense to me (if not to you) to know where you objectively stand time wise and whether the trade off is worth it. I refused ADT due to the sexual side effects and now regret the choice because I might have been cured….instead I am impotent 7 years later with recurrent PCA on ADT with little chance of a cure.

Depending on your Gleason and scans you might find that you are curable with an excellent chance of maintaining erectile function…….. and if you are not you still have the option of forgoing treatment.

Vangogh1961 profile image
Vangogh1961 in reply to Nwdx

It appears you're not Stage IV, this may be the wrong forum for you.

Tommyj2 profile image
Tommyj2 in reply to Vangogh1961

Thought this was a forum for recurrent PCA not just metastasized PCA …..

Tall_Allen profile image
Tall_Allen in reply to Nwdx

"I thought the pain can be dealt with careful planning and timing- is that wrong?" Sometimes. There is often breakthrough pain. How potent do you think you will be when doped up on opiates?

"I sure would like to find those stories that include full sexual performance ability, specifically some who had small beam thin beam radiation or other accurate radiation as that's the only option I have thought about"

Well, I've been fully potent with SBRT. With ADT, you won't necessarily lose potency, but you will probably lose libido - the desire to have sex.

"All the reading numerous studies and decent sites on surgery is 50% chance of impotence."

Potency preservation with surgery is 35%. So surgery is out of the question for you.

"Which channels you believe are misinformation videos?"

The youtube video you posted.

"The plant based diet has been all over the net and it seems logical to me- so that's my current course of action. I am curious, do you believe Dr. MacDougall is correct about what he says about diet?"

Misinformation. There is no clinical evidence that a plant-based diet helps. In fact, the only high-level evidence proved that increasing intake of vegetables had no effect on progression.

IDK why you are even discussing surgery. Potency preservation is 75-80% with SBRT or HDR-BT - it's why I chose SBRT.

Nwdx profile image
Nwdx in reply to Tall_Allen

Thank for your answers! So you believe the Ornish study was also is wrong? What about eliminating foods such as arachidonic acid and methionine containing foods, and intermittent fasting to delay progress? Diet is even mentioned on Cancer.gov I believe.

SBRT, which clinic or hospital where did you have it performed?

I still have not read much about all the radiation optional differences yet other than photon/proton results appearing to be the same in studies. These technologies are really so operator dependent, and being one who used to fly around the world training doing acceptance testing on million dollar machines, and working with less than stellar customers on complex machines like this, software, motion control, graphics, and imaging, robotics, etc. (IE: not so much beam width but machine tolerance how much overshoot occurs that might damage my nerves...) I have first hand experience, and mild amount of confidence in operators- equipment error, repeatability of mechanical positioning, positioning on table for home positioning each time, etc. I know the implanted gold fiduciary markers assist in one version I read about I am encouraged reading that you are fully potent, and others here saying so and happy for you. You are correct, I should not mention surgery as it's off topic. I truly appreciate your input as well as others here who kindly have shared their thoughts pertinent to the questions.

Tall_Allen profile image
Tall_Allen in reply to Nwdx

The Ornish study had to do with lifestyle change, including exercise, diet and meditation. It was not an trial about increasing vegetable intake.

scientificamerican.com/arti...

The MEAL RCT was about increasing vegetable intake and definitively showed there was no benefit:

jamanetwork.com/journals/ja...

There is no convincing evidence that any dietary changes you can make in the short term will have any effect on your pre-existing cancer.

I had SBRT at UCLA.

Modern linacs are well-maintained, and auto-controlled so that they cannot make a mistake. There is a team consisting of the radiation oncologist and physicist who do the contouring, the doses and dose constraints for organs at risk, and construct the plan. The technician does little other than check the rough bench position with the tattoos, check you've had adequate water, and check that your rectum is empty. Radiation has almost no effect on nerves.

Mark2025 profile image
Mark2025 in reply to Nwdx

Hi, thanks for your posts and I feel I have finally found someone who is on my wavelength re decisions about treatment. I was diagnosed over 3 years ago with Gleason score of 8 and a PSA then of 9. Now 13. I am in Australia and have benefited from the gold standard in diagnostic tests including PET PSMA. Initially this showed the cancer was confined to the prostate. More recently it shows it has spread to the lymph nodes with 2 very very small spots. To date no treatment at all as the side effects and general uncertainty about the best option put me off. I am now considering SBRT as the best of a bad lot of options. Oncologist wants me to go on ADT which I refused due side effects now and long term as it seems once on it it’s for life. As for pain management, in Australia we now have access to VAD or voluntary assisted dying to deal with that issue once its becomes too bad. Also in Australia cost is not a problem given our universal healthcare system topped off by private cover when you want things done quicker. I would urge you though to get the biopsy done and a PET PSMA so you really know what you are dealing with before you make any final decisions.

Nwdx profile image
Nwdx in reply to Mark2025

"I would urge you though to get the biopsy done and a PET PSMA so you really know what you are dealing with before you make any final decisions."

Thank you for sharing your story and I knew others might be on the same page as me. Great to hear your doubling time of gleason 8 isn't fast, going from 9 to 13.

Yes, I am reluctantly considering flying into the states to do the transperineal MRI assist biopsy under IV sedation and PSMA. Seems both are covered under medicare.

I assume you might try small spot radiation for the lymph nodes?

RCOG2000 profile image
RCOG2000 in reply to Nwdx

Treatment in 2000 at age fifty with brachy boost ( and no ADT ) gave ne 18 year remission wifhout significant side effects. Potency was preserved as was bowell and nladder function. Each case is unique

Watchful waiting or no treatment are really about the same. Current treatmentx are constantly improving In all areas, including surgery, radiotherapy, chemotherapy, and immuno therapy I don’t believe you have to make a lifetime decision at this point it sounds like you are in the camp of watch waiting and this may be rewarded with a definitive treatment that is curative at some point during your wait

Nwdx profile image
Nwdx in reply to RCOG2000

Yes, I hope so. But I have not gotten to the bottom of why the 50lb weight loss other than thyroid issues. Thank you.

GP24 profile image
GP24

Before the PSA test was available prostate cancer was detected in the emergency room when patients arrived with unbearable pain. They were treated with ADT which mitigated the pain. Life expectancy about two to three years after that.

Nwdx profile image
Nwdx in reply to GP24

I assume that might be common I have seen this 2-3 years quoted before. Thank you for posting.

Derf4223 profile image
Derf4223

Weird thinking. Reminds me of someone I once knew who had a Ford Pinto (the one that spewed gas in a rear-ender) and said that was why he didn't wear his seat belt. All he did was double his chances of dying trapped in a fiery wreck or in a head-on collision.

ADT for many goes from 4 months to 24 months. If you get cialis 5 mg for d1ck maintenance, your sex life should resume a couple months after. Untreated APCa takes 2-3 years and for a lot of that time sex will be unthinkable. I suggest thinking again my friend.

Nwdx profile image
Nwdx in reply to Derf4223

I have been on forums for nearly 30 years, I didn't expect such a comparison to the Pinto scandal, though it's quite funny.

MrG68 profile image
MrG68

It depends. Everyone is different and the side effects vary. Some people get bone pain and some don't. My dad didn't experience any pain whatso ever and it was deep in his bones. It was considered unusual. Maybe you'll get lucky, maybe not. But I would think the chances are you'll probably experience bone pain because thats where the cancer spreads to.

If you're not taking any treatments, I would recommend that you should at least prepare yourself for this. It will potentially be quite extreme pain. But no one will be able to give you a definitive answer to what that level of pain will ultimately be.

Nwdx profile image
Nwdx in reply to MrG68

Thank you, yes I need to investigate the pain management issue deeper. All I recall is with my father the morphine, etc. caused his severe constipation. He was in severe pain especially last final month with his cancer bed ridden. It was awful to watch, but we were there for him.

MrG68 profile image
MrG68 in reply to Nwdx

Yeah, theres extremely strong medication you can take to relieve the pain. It's not that there's nothing you can take, and near the end I'm sure most will take it if needed. It's worth noting though, that some people get it early relatively speaking. But hopefully you'll not be one of these.

I've read that treatments don't necessarily extend your life. But they do potentially give you a different path to the end of the line. It's all a craps shoot really.

Nwdx profile image
Nwdx in reply to MrG68

"It's not that there's nothing you can take, and near the end I'm sure most will take it if needed."

My father suffered and vividly recall the final hours. He was in a "rehab" hospital they called it. Complete BS name for it- should be a "Pre-Death prep ward". It was a room full of frail, moaning and dying people around the perimeter of 4 walls, probably 30 people on his floor. He had a private room fortunately, I imagine given that so they could charge the insurance to exploit his extra great insurance he had in addition to medicare.

After a week or so, once the morphine reached a certain dosage, the nurses called me to meet with them. They said "YOU need to tell your father that if we increase the dosage, his heart will likely stop". I thought this was the job of the hospice people, to communicate this in a caring experienced manner- but instead they told me I had to do it (Is that standard??? anybody else know?). It hurts still to recall now, as I looked into his eyes to give him this option of prolonged pain or death. So, I go in and whispered in his ear what they told me to ask him it was a yes or no type question. He said yes, increase the dose. I kissed him before leaving and unfortunately, the timing could not be worse and I had no idea what was going to immediatly occur next. We had a birthday party to attend. Within 2 hours, the nurses called me on my cell and said he was gone. We rushed over, and witness his body strewn out legs sprawled out, eyes wide open, arms twisted, what a shock. I thought there was some dignity from these "nurses" other than to just look inside the room and make a call.

I just stood there in shock. So my girlfriend who had experienced this death procedure with her own parents, pulled down his eyelids, straightened his legs together and out (his body was not rigid), pulled his arms up and placed his hands over his chest, and a sheet over the body. I thought that nurses should have done this and it would be standard procedure no? Maybe they were too busy drinking coffee or lunch. At least they put nickels on peoples eyes 100+ years ago. We both cried, and left the room- I was disgusted at the situation, but also knew he was finally without pain and at peace.

mrscruffy profile image
mrscruffy

I saw my dad die from the beast and the last 3 months were the worst. Lots of pain, diaper changes and horrible to see the effect when it got to his brain. It is so bad that a good friend of mine will be "performing" euthanasia when I become unresponsive. It is a hideous death.

Pinkyboy profile image
Pinkyboy in reply to mrscruffy

Damn 😔

Nwdx profile image
Nwdx in reply to mrscruffy

Hideous is the right word from all the reading, I imagine very difficult to witness it first hand. I did with my own father.

Tommyj2 profile image
Tommyj2 in reply to mrscruffy

And he will do this how?……

mrscruffy profile image
mrscruffy in reply to Tommyj2

Depending on my condition, liquid morphine which I have stockpiled or smother with a pillow. I have witnessed the latter with a family member, not horrible

Tommyj2 profile image
Tommyj2 in reply to mrscruffy

Do you have medically assisted end of life in your state? I totally agree that ending life SHOULD be I n the hands of the patient but the law seems to disagree with this……wish I could find someone to assist me with this when my time comes but I doubt that’s going to happen. Glad you are able to plan ahead.

mrscruffy profile image
mrscruffy in reply to Tommyj2

AZ does not have assisted suicide. We took matters into our own hands when my mother passed with each relative giving dose of liquid morphine so as all that had a desire to had a part in this. Took a lot asking and got a lot of "no's" but I get it. A very good friend of mine that is a farmer and hunter volunteered. I think those that are in tune with life and the land are suited for this. Made this decision years ago and am comfortable with it. Mt father passed from the same cancer and like he said at the end, "there is a new adventure out there and I am excited for it"

Tommyj2 profile image
Tommyj2 in reply to mrscruffy

That’s a good friend….hoping for the best for you.

mrscruffy profile image
mrscruffy in reply to Tommyj2

Thanks, plan on living a long time

Nwdx profile image
Nwdx in reply to Tommyj2

My thoughts to you both as well.

Nwdx profile image
Nwdx in reply to Tommyj2

You should consider venturing outside the USA, and non-western countries not rigidly controlled like the states. I am planning to remain outside the USA if possible.

Nwdx profile image
Nwdx in reply to mrscruffy

I have been planning various options available which I won't disclose, as this age I have also aged friends I have around me with various conditions also on the same page who do not want to suffer or be part of the system. Somehow your original post was appearing as deleted. Not sure if true as it's here today as it was in email. Thanks! All the best to you and yours!

Lizzo30 profile image
Lizzo30

My father was dx with prostate cancer with bone mets in 1997 he stopped chemo bc he felt ill with it, the outlook was pretty dire, back then we didnt have internet access like today My Dad lived for another 6 years and succumbed to cancer at the last minute - or so it seemed I was bringing up young children he wanted to die at home he only had morphine in the last week or so of his life and it went down well he was a deep sea fisherman

A friend who is a nurse says NHS have lots of medication to make death easier

How can we say what someone elses death is going to be like - we cant

One thing I know for sure though is that there is an afterlife and we all get helpers to escort us there

Nwdx profile image
Nwdx in reply to Lizzo30

Thank you for sharing your story.

JRLDH profile image
JRLDH

Given the sheer complexity of a human body and the fairly random mechanisms how prostate cancer affects parts of a body, there isn’t a typical death sequence and time.

Some get it in a lumbar vertebrae early and through bad luck fracture it in a way that compresses the spine which causes severe pain and even paralysis.

Others get it on a rib that carries no significant forces and may not even feel the cancer.

Or it spreads to the liver, causing all kinds of metabolic problems.

Eventually it will interfere with too many systems which leads to death. How long that takes is individual.

And about the video: Yeah, tests are imperfect and cancer can take years to cause issues. Some are indolent, some mutate into a hyper aggressive disease. Doubling time doesn’t stay constant like this video implies. It depends on how the cells mutate and how their cell division pathways malfunction.

Prostate cancer is one of the lucky few ones that can be kept in check for many years, usually because of the hormone sensitivity. Once that’s gone and if cell division accelerates, it’s often as lethal as other cancers that have a worse reputation.

Nwdx profile image
Nwdx in reply to JRLDH

Thank you for posting, I have endocrine issues, GI issues for years, anxiety and stress issues so that is another wildcard in the equation.

Doctorsceptic profile image
Doctorsceptic

I am greatly moved by your post. I don’t have answers to your questions. The best I can suggest is to find somewhere with really good palliative care. If assisted dying is an option for you is Oregon an option?

In the meantime spend your time in the best way you can.

Nwdx profile image
Nwdx in reply to Doctorsceptic

Believe me, I have been living it up- retired happily 21 years, only now reaching official gov retirement age! Yes, I was looking into Oregon for my own father, but the travel expenses, and being non resident at the time wasn't an option per their law I read back then, now I believe different. I can't afford to stay in the USA. I am looking into palliative care options where I am. I like your handle, that's me. Skeptical. I have had numerous medical f up's, a couple jacked up treatments that all was required was a simple use of gloves for my work, instead of some quack injecting me with I dont recall. 40 years of misdiagnosis all my life of various health issues, one which I suffered severe GI issues vomiting all night long and the other exit valve....(High gluten intolerance- pre celiac)- hospital lost my biopses, dangerous infection from surgery, prescriptions for SSRI's- and that scam. Most recently, for my anxiety some Dr. gave me a new version of that same useless thing.... I could go on and on.

maley2711 profile image
maley2711

You don't mention your current home locatioN? Can you not find and consult with an MO who specializes in PCa there.....someone who has helped 100s of men with PCa, can review your situation, and try to help you understand the probabilities for your situation?

Alternatively, if affordable for you,consult with one of US leading PCa MOs......if you ask, some folks here will surely give you names. You might check PCRI and consider consult with Dr. Scholz? Last I heard, expect $1000 for an hour consult...anyone will want to reviews your history of course.

I don't know why you expect any definitive answer on a PCa forum to your questions.....none here are specialists and have experiences with 100s or more patients. Yes, smart sharp guys here..but wouldn't you feel more comfortable with the straight dope from one or several expert specialists? They ARE available, but you must contact them, they won't contact you.

MANY/most of the top medicalfolks defintely consider the balance of QOL vs treatment efficacies. One 40ish physician here or on another forum tried evrything for his aggressive PCa and , when options were exhausted, chose to avoid the last most horrible days by refusing any liquids from his wife or anyone else ?

We now have the tremendous advantage of being able to consult remotely with top Docs !!!

Nwdx profile image
Nwdx in reply to maley2711

Thanks, radiation requires me to go back to the states, but I sure don't know how they avoid damaging the nerves, and impotence still is likely after a couple years.

I have a good Dr. friend who brought his oncologist friend over to socialize a few years ago. I sat with the MO alone and asked him what he thought of his profession, as he retired very wealthy with all the drug company gifts... lol. We got into the true philosophy of his profession and how valid it was, what he really thought about his profession. He said his job was more a death counselor as all the chemo drugs do is prolong death. Which confirms my fathers situation.

I don't expect anything definitive, as I stated I thought. Opinions, experiences, etc. I have watched many of those good PCRI videos of Dr. Sholz, I like him and called to get enrolled, but waiting until medicare.

That "no liquids" option is on the table. Maybe, Ronnie Montrose type exit.

I intend to do remote consultation, so far am collecting lists of Dr's.

Vangogh1961 profile image
Vangogh1961 in reply to Nwdx

I guess I consider impotence a simple side effect to not being with my family for the next few years.

Nwdx profile image
Nwdx in reply to Vangogh1961

Yes, we all have different priorities and situations and that you are able to live the life the way you choose is all about what freedom we have. Enjoy it all! Thanks.

WisdomSeeking profile image
WisdomSeeking

Take a look at the comments of a question on Quora: "What happens in the very end stages of Metastasized Stage 4 prostate cancer?": quora.com/What-happens-in-t...

Nwdx profile image
Nwdx in reply to WisdomSeeking

Good thread, starting to read it. Thank you!

Niso profile image
Niso

Hello,well its your life and your decisions, I can offer you to try alternative treatments with off label drugs and supplements ,give it a try while you are preparing to the end of your life,no major side effects and maybe will help you prolonging life with better quality of life. You can search fenbendazol,ivermectin info and groups,how to starve cancer etc.

If you are interested with more info let me know.

Nwdx profile image
Nwdx in reply to Niso

Yes, thank you! Please DM or post your choice whatever you wish to share. The Fenbendazol and ivermectin starving cancer stories thing I have read a small amount but haven't figured out how to obtain the former or dosage, but have the later available. I have been doing many of the alternatives- lot's of celery and brocolli, fresh papaya, tumeric, soursop, B12, Prostate supplements, Vitamin D (which was mentioned in a good video) etc.

Niso profile image
Niso in reply to Nwdx

To make long story short You can find full protocols in several Facebook pages like:Jane mclelland off label drugs for cancer.

Fenbendazole cancer support group.

Fenbendazole and other alternate choices.

Mycancerstory.rocks.

Search for metro map or protocols for prostate cancer.

Basically you need to block 3 main pathways that feeds cancer ,using off label drugs and supplements.

The main pathways are:

Glucose

Glutamine

Fatty acids

There are dozens of options I will mention some of them:

Drugs:

Fenbendazole it's a dewormer you can order from the happy healing store ,pure powder 50 grams or tablets, another options panacure c or safeguard both from merck for dogs,dosage starts at 222 mg a day and you can go up to 2000 mg a day,I use the happy healing powder. You should take it with food and oil because it's oil soluble only.

Use tudca to protect your liver during fenbendazole 500-1000 mg a day u can order from doublwood.

Ivermectin another dewormer u can order from India alldaychemist its a good pharmacy.

12 mg a day or up to 1-2 mgs per kg of body weight,you can use it with fenbendazole they are both dewormers with different mechanism to kill cancer cells and cancer stem cells.

Metformin diabetic drug 2×500 mg a day or 875 mg once a day.

Atorvastatin for cholesterol reduction and blocking Fatty acids 20 up to 40 mg a day or you can use red yeast rice supplement instead it does the same thing 1200 mg 1or2 times a day from iherb.

Selcoxib anti inflammatory 200 mg a day.

Supplements:

Red yeast rice as mentioned above.

Berberin 500mg ×2 -iherb

Quercetin 800×2 -iherb

Reseveratrol 500×2 -iherb

Egcg 1000-2000 mg a day -iherb

Curcumin 500×2/4 a day

Ursolic acid 800-1600mg a day

Chromium picolinate 100×2

Pectasol c modified citrus pectin powder 1.5 scoops twice a day,from eco nugenics.

Ip6 gold powder 1 scoop 1or2 times a day on empty stomach.

This is a short version to start with,afterwards you can add more drugs and supplements.

If you have some hesitations just search those drugs and supplements on pubmed for example : berberin and prostate cancer pubmed,you'll find a lot of information supporting the idea of fighting cancer with off label drugs and supplements.

Life is worth fighting for.

Good luck.

Niso profile image
Niso in reply to Nwdx

I forgot mentioning high dose melatonin, buy it from pure bulk capsules or powder 60 mg×4 total of 240 mg during the day and 180 mg 1 or 2 hours before bed time total of 420 mg a day.Melatonin stops and disturbs cancer cells spreading and proliferating in 8 ways ,causing apoptosis programed cell death, stops angiogenesis the ability of cancer to produce new blood vessels etc.

Nwdx profile image
Nwdx in reply to Niso

Thank you Niso, both of your time consuming and detailed posts are much appreciated and hope it can also help others who are lurking here and reluctant to go against the grain like myself and not writing their story, I printed them and need to search- supply here is an issue. Tried already to find several in macrobiotic stores who sell supplements, cannot mail order or have them shipped in as the Gov customs will just seize any and all medicines or supplements. They even seized condoms... go figure- took a month but released them finally. But my good quality of life outside the USA, mellow people, safe, no need to own a vehicle and much lower cost of living and great weather is trade off for such. Keep up posting anything new you find.

Niso profile image
Niso in reply to Nwdx

Be well my friend.

RodofGod profile image
RodofGod

You ask "What to expect with mets and no treatment".... That's easy ... Death sooner than later...

You know that already... So why are you on here? (I have my suspicions)

Nwdx profile image
Nwdx in reply to RodofGod

Your input is off topic. I posted specifically about "what to expect" as far as min/max time lines, stories, etc. I have no agenda other than learning.

Fitzbruce1 profile image
Fitzbruce1

nwdx- at 68 I was diagnosed w over 25 tumors all over my spine, ribs, hips, etc. I went on Abi, steroid and Lupron. 6 years later and I am doing great! Riding motorcycles off road in the mountains, jet skiing from Florida to the Bahamas, parachuting from 15,000 feet, paddle boarding and then biking most mornings, went snow skiing in February in the Rockies w 5 friends who are all in their 50’s, hosting a billiards night at my house each Tuesday, etc.! Currently my wife and I are in Paris and leaving soon for Switzerland where we will hike and maybe paraglide. In august I will live in a 4 wheel drive van for 14 nights while exploring Iceland, mostly off road.

My symptoms after 6 years - hot flashes (if a woman can take it so can I). Some fatigue but not much. THATS IT! No diapers, no catheters, I don’t really think about my cancer much because I feel fine and every 3 months that is confirmed at the doctors office.

For the first 3 months I cried at the thought of my early demise. Yes I have had 40 rounds of radiation and will have 10 more on a spine met starting in mid May. Big deal, it doesn’t hurt. Now if you don’t have the insurance or funds to cover this kind of treatment, well you have a bigger challenge ahead. But if you can pull it off, just do it and enjoy many more years of your new life! Shake it up and get ‘er done!

GoBucks profile image
GoBucks in reply to Fitzbruce1

All that is awesome but the original poster appears to really be just interested in sex.

Professorgary profile image
Professorgary in reply to GoBucks

Dead men don’t get erections

Fitzbruce1 profile image
Fitzbruce1 in reply to GoBucks

Yeah but I also wanted to say Go Dolphins! 😬

Nwdx profile image
Nwdx in reply to GoBucks

Yes, exactly.

Tommyj2 profile image
Tommyj2 in reply to Fitzbruce1

You are non castrate resistant still after six years?

Fitzbruce1 profile image
Fitzbruce1 in reply to Tommyj2

yes sir. 0.17 PSA. Just lucky I guess. My PSA STARTED GOING UP A COUPLE OF TIMES BUT NEVER HIT 1. I CHANGED FROM prednisone to Dexamethasone and I have also done something different. For the last 2 years I switched from Abi to Appalutimide. Since I had numerous bottles of Abi left over I started taking a couple days with it and maybe 5 days with Appalutimide. I don’t have a schedule, just randomly sneak up on the rascals. Not SOC but it might be helping me by hitting the bastards from 2 sides. Who knows.

Tommyj2 profile image
Tommyj2 in reply to Fitzbruce1

I’d be curious if the Abi is actually doing anything or just robbing you of the full apaludimide effect…..then again whatever you are doing seems to be working so why argue with success.

Fitzbruce1 profile image
Fitzbruce1 in reply to Tommyj2

Tommy- I was on Abi for 4 years when my PSA almost doubled for 4 three month check ups in a row. I knew I was going to be, or already was, castrate resistant with the highest PSA being 0.88 (I had been 0.02 for almost 3 years). That’s when my Doc agreed to let me change to Appalutimide. The change has brought it down for 7 checkups in a row. It’s not SOC and not what is suppose to happen but….. I know that I am very fortunate and I like the feeling that I am keeping the bastards looking which way the attack is coming from each night! All the best! Bruce

LDC2024 profile image
LDC2024 in reply to Fitzbruce1

LOVE this! Thanks for sharing your positive story and wishing you more great years ahead.

Fitzbruce1 profile image
Fitzbruce1 in reply to LDC2024

LDC- I’m glad you took it as uplifting rather than bragging. I just wanted to show you that it is not all doom n gloom! I did forget one other side affect - the lack of hard erections 😩 but over the years it just isn’t that important. 🥹

Grandpa4 profile image
Grandpa4

while you feel you have reached acceptance I think you might have reached depression. I would discuss it with someone as it is very treatable. The side effects you are worried about are all reversible. There is no reason not to try them and then if you are miserable stop them. In my case the lack of muscle mitochondrial was annoying but otherwise I did great. I was going bald but developed a full head of hair. The trick to side effects is to exercise. It is also very helpful for depression.

Nwdx profile image
Nwdx in reply to Grandpa4

ADT damage to libido and T does not seem always reversible. Losing my hair would not be an issue, fortunate to have it all now. I have not shed a tear. But angry at first, now less, not depressed I don't sit around moping "why me" or that sort of thing, it is what it is and enjoying each day- I have plenty of activities to keep me busy. Yes, I have started to exercise after many year of only walking. Thanks for posting.

turkeyjoe1 profile image
turkeyjoe1

My dad had a very slow and painful death. It took his ability to stand or sit. Unbelievable pain with morphine and fentanal. Cather. You couldn't even touch him. It went on for weeks until he couldn't swallow the small pieces of jello that were fed to him. He still lasted a week after that grasping for air. It was not pretty. I lost my brother to this last Dec 26. It only took a month. He was fine up to Nov, then it all crashed.

How it will work out for you, who knows, that's my experiences. I will take the treatments for now. I also have someone to end it before it gets to that point of suffering.

Nwdx profile image
Nwdx in reply to turkeyjoe1

Thank you for sharing, at least it wasn't years of suffering or was it?

I spent 3 months helping and watching my father in pain before he expired from another form of cancer.

turkeyjoe1 profile image
turkeyjoe1 in reply to Nwdx

He had it for 23 years. He suffered badly for the last 2

Nwdx profile image
Nwdx in reply to turkeyjoe1

So you are saying your father and brother AND yourself now have PCa? Horrible.

The more data I gather it seems like an average, final 2 years are suffering. Thank you for following up!

turkeyjoe1 profile image
turkeyjoe1 in reply to Nwdx

Yes, and my brother did not suffer until the last month. He did well really. No pain, just lost all strength and abilities. Your welcome

Nwdx profile image
Nwdx in reply to turkeyjoe1

How awful to have it like the flu was passed around the family..... Glad to hear your brother did not suffer long, I have seen it first hand and my mind keeps going back in time watching my father. My heart goes out to you 3 of you had to deal with this.

Hawk56 profile image
Hawk56

What can I say...your choice. I've peaked behind Door #3, death by prostate cancer, no thanx. My medical team knows their mission is to get me to die of something else, hopefully a quick heart attack (though ny cardiologist says differently)...?

I'm at the 10+ years point since diagnosis, attached is my clinical history. I've done four fo rounds of treatment, total time on treatment, just under three years. That's seven years off treatment.

I've celebrated anniversaries (on #34 now), birthdays, watched my daughters graduate from high school and college, gone to concerts - Eagles, Bruce Springsteen. Chicago, Doobie Brothers, BillyJoel, can't count the vacations - Iceland, Utah, Colorado, Oregon...going to Glacier National Park, Waterton and Banff in September.

With the help of Cialis, I've been able to achieve erections, albeit my wife long ago gave up intimacy so it's solo now, but...

Even while on treatments, I have not changed my lifestyle. I went skiing while on ADT, did the Bataan Death March with my sister, and rode the Garmin Unbound, a 50+ mile gravel bike ride in the Flint Hills of Kansas with my daughter and sister, travelled to Las Vegas to watch my daughter play in her college basketball post season conference tournament and went to Hoover Dam, Death Valley, Red Rock Canyon...while on chemotherapy.

I'll admit, I've been "fortunate." My PCa while aggressive based on the initial biopsy, GS and GG along with time to BCR and PSADT and PSAV has never spread to bones or organs, nor become resistant. Why, who knows, perhaps actively monitoring, taking action when it recurs (for definitive time) has kept it in check.

I have seen many men on this forum and others, who live with it with the same approach. It may be for many, this is a chronic disease, aka, AIDS and Diabetes, that you live with by actively treating. I will give you there are the 27k or so who die each year in the USA despite theirs and their medical teams bests efforts.

Perhaps one factor in my journey is an active lifestyle. My medical team says exercise plays a key role in mitigating the side effects. I go to the gym most days, indoor bike, weights, swimming, other days I ride my bike outside, yesterday I rode 50 miles.

Kevin

Clinical History
Nwdx profile image
Nwdx in reply to Hawk56

Thank you for your post and uploading the chart, at least the time line is long. The advantage you have is you've been active physically for years, I would imagine this is a factor in your journey. I haven't exercised in a gym or bike in years and required sitting in a chair 16 hour days before retiring and all working for my early years. So been walking nearly daily since Pandemic even before this.

Apisdorsata profile image
Apisdorsata

I understand your reluctance to try treatment but consider trying something less than the full enchilada. Maybe just intermittent bicalutamide or abiraterone. They work quickly and the effects end quickly. Maybe six months on, six months off. Yes, some fatigue etc, probably some impotence which might be correctable with medication. You might get many years of good life. If you lived ten years longer but were impotent half the time you still might get more rolls in the hay than if you take nothing and die in three years. Just a thought.

Nwdx profile image
Nwdx in reply to Apisdorsata

Thank you for your comments, I will need to look up those chemicals.

CountryJoe profile image
CountryJoe

Why are you so pesimistic about the future, amigo? And why are giving up? You are wasting your time with all of the fear of the future. Don't sell anything. Take the treatment and enjoy your life as you always have. Other wise, you are already dead.

Nwdx profile image
Nwdx in reply to CountryJoe

Thank you for your comments, I am fully sexually active and don't want to compromise it, now exercising, diet, not giving up on life, just attempting to look into various other people's histories of what to expect.

Blueribbon63 profile image
Blueribbon63

Hello, I empathize with you almost at a 100 % in that I am not that wealthy and I am not interested on sex any longer. I was diagnosed with advanced PC back in 2018 and then Metastasized on 2022. After so much pushing from MOs I have been taking the Lupron infusion and couldn't feel more miserable. I've had radiation 38 sessions back in 2019 and just now am starting to get some SE from that. I did years of Lupron from 2019 to 2020 and again since Nov/2022. I experience the most horrendous hot flashes at any time of day or night, my testosterone is almost non-existent so no muscle mass, extreme fatigue, have put on over 40 pounds (I used to be a long distance runner) I walk so very slowly and climb stairs as if I was much more older than what I am (I'll be 61 y/o in October) My mode changes are off the roof (it is a good thing I live alone) they have got me in trouble at work.All this been said, I refuse to get on any other treatments specially if they make me dependent of anyone else. I already have broken my arm from a simple side walk tripping. (I used to get a lot of falls when running and never broke any bones) In a way I am lucky to have the most open minded MO as he assures me he won't put me on anything I don't want to. I refuse to join the 'thousand guys' who in the end die in a horrific state the same as 'they say we PC men will die. So, continue living your awesome life always planning those last days to not become misery for others too.

Nwdx profile image
Nwdx in reply to Blueribbon63

Wow, I empathize with your experience. This isn't the treatment road I want to go down. Yes, I have been blessed with many gifts and a great life and do not want to become dependent on any 3rd parties nor become a burden.

Blue-Mockingbird profile image
Blue-Mockingbird

I just went through this with my dear husband. He was 100% disabled with VA. Once the MO informed him that there were no more options of treatments for him he was put on hospice. At that point Medicare took over. He had a wonderful, caring hospice team who provided everything he needed to manage his pain and comfort.

Nwdx profile image
Nwdx in reply to Blue-Mockingbird

Thank you, that answers my Medicare question I think unless the VA had something to do with his ability to get Medicare hospice- did they? My only issue is I really dread returning to the USA, I left years ago and have a much better, less expensive life outside of the states.

Blue-Mockingbird profile image
Blue-Mockingbird in reply to Nwdx

The VA social worker chose the Hospice provider which in our case was Providence Hospice but it was made clear to me that hospice was paid for by Medicare. Hospice provided all meds, durable goods like the hospital bed, nurse visits, bath aide, social worker, chaplain and one year of grief counseling for me. He even had acupuncture treatments while in hospice.

Hope your return is uneventful and everything you need

Sandy752 profile image
Sandy752

Might have missed but have not seen any reference to MAID (medical assistance in dying.) It is becoming more common in my country of Canada. One could qualify whether he had treatment or or not. Rules say: "To be considered as having a grievous and irremediable medical condition, you must meet all of the following criteria. You must:

have a serious illness, disease or disability

be in an advanced state of decline that cannot be reversed

experience unbearable physical or mental suffering from your illness, disease, disability or state of decline that cannot be relieved under conditions that you consider acceptable

You do not need to have a fatal or terminal condition to be eligible for medical assistance in dying."

Mascouche profile image
Mascouche in reply to Sandy752

I am in Canada as well and they are very trigger happy to propose MAID. Just a few months ago I saw in the news that it had been proposed to a disabled army veteran who was just trying to get a new wheelchair or something like that with a cost of $1200. She was offered MAID as an alternative !!!

I also remember it being offered to another veteran who was trying to consult for PTSD. My memory fails about whether this was in Canada or in the USA for that one.

They wanted to broaden the net and offer it to people with mental issues in March of this year but that was thankfully postponed to a later date.

MAID has become out of control in Canada and especially in QC where we hold the unenviable record of having had the most MAID approved.

Sandy752 profile image
Sandy752 in reply to Mascouche

Good points. But the few folks I knew who used MAID were in their 80s and in terrible pain with no hope of recovery.

Mascouche profile image
Mascouche in reply to Sandy752

I am not opposed to MAID. I just think that it should be something that a patient ASKs for, not something that is OFFERED to the patient as a solution. Someone who has a heartache over a breakup might feel like MAID is an option right after the breakup but it is quite likely that this someone would feel otherwise a few months later.

Jpburns profile image
Jpburns in reply to Sandy752

I so wish we had something like this in the US. I would much rather choose to painlessly end my life when I got to that point, rather than… I dunno, swallow a pistol? Seems messy and needlessly traumatic for your loved ones.

My dad had a good friend who stayed at his place when he was in town. His friend was diagnosed with some sort of cancer (I don’t know which), and after undergoing some of biopsy that revealed he was riddled with cancer, he went back to my dads house and blew his brains out in dad’s living room. He was nice enough to roll up the carpet, but geez! What a rude thing to do.

Adendino profile image
Adendino in reply to Jpburns

we do have this in the US, depending on what state you live in. 8 states allow it including Colorado Vermont Montana Oregon Hawaii Washington California and New Jersey

Jpburns profile image
Jpburns in reply to Adendino

Unfortunately, Georgia killed (heh) a similar bill back in 2020, I think.

Nwdx profile image
Nwdx in reply to Jpburns

Wow, so many other ways to end it without damaging someone elses property or inflicting the gross, non-eraseable trauma of arriving home to such a mess. I had a neighbor whose son did the same in the bathroom but with a 12 gauge, so you can imagine... it caused both parents severe PTSD for the rest of their lives.

tsim profile image
tsim

You seem to have had a pretty good life and you're asking for support for a decision you've already made.

Nwdx profile image
Nwdx in reply to tsim

I have made my success on my own and it's been an incredible run. To be clear, I never asked for "support", I am not here to cry on anyone's shoulder, I wanted to hear the gory details of death stories and time lines, what min / max of life, suffering etc. I am grateful for all the above posts that answered my question, rather than be judgmental.

NanoMRI profile image
NanoMRI

I have read all the replies. I think it is fair to say death from cancer, any cancer, is ugly.

The "data" indicates most men with prostate cancer die with it, not from it.

With or without treatment you may well die from this disease, unless of course, something else gets you sooner.

All the best to all of us with our decisions.

Nwdx profile image
Nwdx in reply to NanoMRI

I hope so, as upon discovery of this lesion in December, I was totally uneducated and ignorant of the sequence of pain and death for this nasty disease, had no idea of the suffering- and suffering from treatments for PCa.

A month before my ultrasound exam discovery, my 85 year old close friend who I spent every week with going to lunch, died of lung cancer that a small tumor grew into a huge one. He was fortunate to have no pain really until the end and that lasted only a month or so. But up until then, we walked several miles together and I watched his weight loss and energy decline. So he was lucky, I guess.

A couple months ago, my friend since high school died of pancreatic cancer. Misdiagnosed, insurance problems to allow Dr. visits, delays, etc. all a year prior to accurate diagnosis. Lovely how the insurance/corporate hospital/medical "system" being what it is. The company he worked for 30 years stopped his insurance, he had to train his replacement and he went the 2 years of chemo treatment on credit cards suffering, and said his decision was for more time fighting for his several children. Last conversation on the phone was when I told him about my tumor, he said jokingly "I'll trade you".

NanoMRI profile image
NanoMRI in reply to Nwdx

A mantra of mine is memento mori - just not from prostate cancer! Many of us have very successful treatments. I had prostatectomy, salvage RT to prostate bed, salvage extended pelvic lymph node surgery, and a year on ADT for added insurance (a negotiation so to speak with my medical team). I am six years six ePLND, and gratefully, doing very very well.

Nwdx profile image
Nwdx in reply to NanoMRI

The fact that you are happy, still alive and did the SOC and it worked for you is great, I wish you many more great years. Thank you for posting.

NanoMRI profile image
NanoMRI in reply to Nwdx

For clarity, no I did not and do not follow 'SOC' - it is a fallacy anyways. Yes, I chose treatment, my first, RP, after extensive imaging and many consultations. I wanted the beast out. I test with ultrasensitive PSA, out ahead of 'SOC' and many HU members who oppose it. I was recommended the STAMPEDE trail and said no. The imaging and salvage extended pelvic lymph node surgery I went for in Europe are also well ahead of 'SOC' and many members oppose as well. Eight years + since my RP, my goal remains to defer ADT and thereby castration resistance for as many years as possible - should I elect to take it on. All the best to all of us fighting this beast!

Nwdx profile image
Nwdx in reply to NanoMRI

Thank you for your response, wow so you also had a RP. I understand the complete removal ideology, and why most go down that path. I sure hope your QOL is great, continues to be great and on the good percentage side of the lucky ones without severe ED, etc.

Curious, where did you go in Europe for your treatment? I have considered going there if I can.

I am curious why so much "opposition" you state that is here. Perhaps many lurkers too that agree with seeking "alternatives" as with all forums and people do not post their situation.

One thing I really know is I want to make my decision, not a Dr. Their job description is to "save your life at any cost" to follow the hypocritic oath, do no harm. But by castrating someone in whatever manner, that seems contrary to "do no harm" when the treatment results are what they are.

Where I live, sadly if someone has an accident or diabetes on their toe, etc. all they do is just whack off limbs, I daily see people with prosthetic legs, unlike the states. I keep getting pressured by my friends to go see a urologist, yet I see no point until I can get somewhere else like the states.

I have been reading everything for days since December, and pretty much feel educated on the benefits and risks of various treatments, seems like walking into an office and being offered on what I already know is available. RP, seed implants, various forms of RT photon or proton, ultrasound, water or laser ablation, and/or ADT- why spend $500-1000. to be told that? Cleveland Clinic and others want $1200 for a phone call. I don't know if I am missing something about not spending $1200, the rectal ultrasound by a urologist in a private clinic and written report cost me only $100 (Yea a fraction of USA costs) showed and told me what I never expected (a 2cm tumor), so that it makes little sense to call up and hear about the same treatments above, I already read that are available. Sure are a lot of stats and papers and research studies, meta studies of combining those, etc.

NanoMRI profile image
NanoMRI in reply to Nwdx

So you have written a lot – I have strived to offer a useful reply.

Both my sweetheart and my sister are in palliative care for their respective cancers which will most likely be their cause of death; not looking like something else with get them first. Their circumstances and QOL are on my mind, daily.

Since my diagnosis nine years ago my focus has been to not die from this beast, and if it comes to it, to defer ADT, castration resistance and chemo for as many years as possible. My QOL is most excellent. I am very fit and active and take no medications of any kind. Just celebrated my sixty-seventh birthday hiking slot canyons and biking the San Rafael Swell in Utah, USA.

All treatments for cancer have side-effects. All! As some put it, choose your poison. Yes, I chose surgery for my first treatment after many consultations, several of which I happily self-paid. Investing in my life, my QOL, remains my most important investment. With the findings of two multiparametric MRIs, done slightly differently, the consensus was the margins surrounding the tumor were marginal and surgery was my best option. Fortunately, cancer had not entered critical urinary bits, so my risk for incontinence was very low and in fact I have excellent continence for an aging man. As for ED, I recovered adequately from the RP, naturally. ED is a consequence of ADT, and general aging as well.

As for Europe. I was living and working outside of London, England at the time of my diagnosis and had several excellent consultations there. My RP and subsequent salvage RT were near my home of Austin, Texas. Both procedures failed to get all the cancer and so ADT/chemo was recommended.

I said no and remained focused on removing tumor burden. Imaging seemed key and I found my way to Netherlands for the Ferrotran nano-particle MRI which identified suspicious pelvic lymph nodes. I chose to have those surgically removed, salvage extended pelvic lymph node dissection. That procedure was done in Belgium as I could not find a US center.

A contingent of members are simply opposed to all surgery. In my experiences fighting this beast, having many treatment options is a very good thing. I am very self-directed in my diagnosis and treatment paths, advocate strongly for me, and I believe I have and continue to choose wisely.

All the best for you!

Nwdx profile image
Nwdx in reply to NanoMRI

Thank you very much for being so kind to share those details. I wish you all the best, keep fighting it. I've probably written too much now, you are correct. Keep living life to the best of your ability as you are!!! Interesting that you had to leave the USA to get your alternative treatments and no entity offered them at all there.

Nfler profile image
Nfler

niso summed it up pretty well, I’m only doing the ivermectin cbd oil and some of the supplements he recommended. I do 12 mg, 2 times a week as a maintenance dose and psa has declined for over a year now, has stabilized at .75, I had the surgery wish I wouldn’t, had radiation mixed thoughts on it as only little side effects n seemed to b effective, did adt for 7 months. Absolutely hated it the whole time which led me to find alternative options hence the ivm. The radical prostatectomy is just that radical n didn’t cure me just f’d up my sexual function. After two years I am able to function decent w bi mix as the prostaglandin in tri mix is a little painful not to mention the injections themselves are as well. It seems to b from the scarring tissue. Nonetheless there is somewhat adequate function but nothing to the degree of what it was n atleast I have my testosterone back feeling much better, able to surf regularly n throw football with good velocity n psa is under 1. MO’s , RO’s are amazed that psa has stabilized for over a year while testosterone has returned and open minded about my protocol n have tests done every 6 weeks. So you may want to look into the alternative route niso so thoroughly explained as it’s the route I wish I would’ve gone pre soc care and you may very well have that option now. Hope this helps, good luck and btw good for you for keeping your ground n being honest w yourself…

Nwdx profile image
Nwdx in reply to Nfler

Thank you for your response "The radical prostatectomy is just that radical n didn’t cure me just f’d up my sexual function. "- wow. Man, my heart goes out to you. Excellent your T has returned and you have been able to return to somewhat decent QOL. ... and after all that treatment. This is exactly my trepidation after seeing so many bad medical decisions on other maladies based on my own friends suffering by following the crowd. I won't even mention the past and future fall out from the g o v forced "s-h-o-t".

Nfler profile image
Nfler in reply to Nwdx

Yes you’ve hit that right on the nose. The masses follow n believe most everything they hear and there’s so much corruption that if anyone says anything they get chastised to no end. Fortunately as a couple tried to do that to you a few more stepped in and was able to counter, giving you very valuable knowledge n info…😁

Nwdx profile image
Nwdx in reply to Nfler

Thank you! I have experienced lot's of great people and friends around the world as I've been in forums since 90's on various topics, and unfortunately have been threatened with violence, doxxed, slammed, yelled at, but always because I am non-mainstream and a skeptic and call out BS when I see it. And that is not to state anything about BS here except the off topic comments wasted space "You're dumb", etc. I remain grateful to have had a good day today, no depression and worrying and really happy to read these shared stories, grateful to all who answer my question. I am just going to "enjoy every sandwich"- to quote Warren Zevon before passing from lung cancer.

Life is short, one of my girlfriends keeps reminding me of. I find though most people don't realize how nasty this disease is whom I talk to about it. Too many details about dead end roads, treatments that destroy your sexuality, too much to share with non-PCa people. I keep getting this "Think positive" stuff from them, which is ok I guess. However, I am a realist, not idealist.

One more comment, have you read how years ago Rockefeller funded and started the Medical profession students to his own design around to what it is (No money in solutions, but money in treatments. There are some articles on it.

meridianhealthclinic.com/ho...

"Rockefeller knew that to get total control of the medical industry he would have to expunge the competition. Rockefeller’s first move was to use his vast wealth (from oil) to purchase part of the German pharmaceutical company I.G. Farben. (look up Farben’s involvement in WWII). Now that he controlled a drug manufacturing company he could move forward with his plan to eliminate the competition"

I recall in 70's as a young student, being in public school health education class and vaguely recall that teacher spent 2 days explaining how Chiropractors were quacks. There were other days he spoke about anything non mainstream as quackery. Only real Doctors who followed the early 1900's program were legit. Go figure.., chiropractors help millions of people that would otherwise be given pain killers to mask the problems.

Sure some of this stems from the first traveling snake oil salesmen of old who did rip people off. Now we live in the age of so many people instantly connect digitally and are being paid off by corporations to do their dirty work. Or the G o v figuring out how to get around constitutional rights by using NGO's and paid proxies.

Nfler profile image
Nfler

Yes I have heard what Rockefeller has done, just didn’t know it was to that degree. Like the old saying goes he’ll have to answer to manipulative decisions someday, it’s just a shame someone can think n act on like that…

Nwdx profile image
Nwdx in reply to Nfler

archive.org/details/carnegi...

This is the Abraham Flexner report of 1910.

In the early half of the 20th century, a coup was organized on the medical research facilities, hospitals and universities. The Rockefeller family, ye ole step-n-fetch-its of the actual slavemasters, sponsored research and donated sums to universities and medical schools which had drug based research. Establishments and research which were were not drug based were refused funding and soon dissolved in favor of the lucrative pharmaceutical industry.

The Rockefeller Institute for Medical Research was founded in 1901. Simon Flexner headed the Rockefeller Institute of Medical Research. Simon Flexner appointed his brother, Abraham Flexner, to survey medical schools throughout America.

ncbi.nlm.nih.gov/pmc/articl...

But the oversights of Flexner and his associates need not have occurred if these leaders had recognized the primary role of physicians as beneficent healers; the delicate balance of patient care and research could have been pursued with mutual benefits for both sides. As it was, the science of medicine eclipsed the active witnessing of our patients. Edmund Pellegrino’s lament was proven true that doctors had become neutered technicians with patients in the service of science rather than science in the service of patients.

Nfler profile image
Nfler

Yes that pretty much sums it up, people just refuse to look back at history n get the real picture n truth, just a shame…

Nwdx profile image
Nwdx in reply to Nfler

Glad you are aware of this 100+ year old vision, so spread the word. At least outside the USA, things are easier walk into a Pharmacy and buy whatever and no $200 Dr. visit just for a Rx, since Pharmacists know what to offer anyway, and it is cheaper ($5 for an injection from nurse) and more flexible- more liberal sales of controlled prescriptions, etc.

Truly sad to see the good true healing humanistic oriented Doctors retire or quit the profession too, due to the burden of Insurance companies and chasing their unpaid bills. I have read, small independent non-corp hospitals around rural USA are closing too.

Wait til the latest new "equation variable" gets added into the "Doctor-Corporate Hospital-Patient-Insurance"- c*rcle j@rk mess. When AI decision making starts deciding what Dr.'s should do and not do, aggregating all the G00gle years of scraping the WWW in their already "borrowed-copied-stolen" data from humans.

AI will be indexing published papers from some of those academics "publish or perish" mentality and only in it for job security.

Future AI treatment orders to be based on demand, age, comorbidity triage, manipulated information, or human money saving injected bias (ChatGPT is going to be preinstalled on Apple phones soon), AI force or limit treatments, deny claims with insurance, nobody answers the phones already in some segments with decent customer service.

LMAO as I guess I get closer to circling the drain with a smile on my face. 😀

Nfler profile image
Nfler in reply to Nwdx

Yes it’s getting really bad and I’ve come to the conclusion there is no point of return, we just have to b vigilant in knowing what’s right n not succumb to their bullying whenever possible, good luck…

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