May or May Not have PC: My PSA is 4... - Advanced Prostate...

Advanced Prostate Cancer

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May or May Not have PC

13thwarrior profile image
73 Replies

My PSA is 44. Has been gradually increasing for about 8 years. I know the PSA itself is of little value, but see it as a tool. My Naturopath has had a number between 60-100 for 20 years. I would only become concerned if it started leaping upward. One biopsy was enough. Won't do another. No surgery. No chemo. Frustrating because the "medical community" by and large seems only to understand cut and fry. My only concern now is to find a way to shrink my prostate a bit so I don't have to urinate so frequently. I have a "high Gleason Score" but few other "symptoms. No pain. No problem with my sex life, etc.

I've gone through this rodeo several times before: Three years ago with t a ruptured disc, "The only choice for you is spinal fusion." -pass, and have been healed by working out, stretching and chiro. High Cholesterol - for 25 years: "You MUST take statins!" - Nope, still here and hearty at 70. My grandfather had 425 and lived/worked on a farm untill 99, when he fell out of a tree stand deer hunting.

Here, take some Vioxx" said my Doc. Nope. 50,000 other Americans did...and died. "Take this 100mg Fentanyl patch for your back pain" said my GP. The pharmacist saved my life by telling me I could be killed; took it down to 25mg and still almost died. Thank you Allopathic 'medicine'. Sorry to be so down on "traditional" medicine, but I'm still here, while friends and family members are not, because I thought long and hard, and researched before and IF, I agreed to do something invasive that was recommended. I'll go sometime for sure, but I'm after quality of life, and hopefully some quantity too! Western Medicine is the best at trauma...not so good on the rest.

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YostConner profile image
YostConner

We all get to choose our own treatment path. It does sound like you have prostate cancer. I hope you get to the end of your life without the prostate cancer causing you any problems. I will say, though, that has a guy with prostate cancer and pain from the cancer, I hope your naturopath has a good plan for dealing with pain if it occurs. Best to you.

13thwarrior profile image
13thwarrior in reply to YostConner

Thank you, Yostconner. If I do have PC, it may well be a slow-growth, decades' long issue. What bothers me the most is how few physicians seem to be able to think beyond the surgery, chemo, drugs route. I believe that the premise that high testosterone is responsible for PC is highly-flawed. I have no intention of having my gender changed by being placed on an estrogen routine just to find out. The day will come - after many millions more have died in the process, that medical "science" will have determined that, by and large, surgery and chemo are at their root, barbaric practices. Like spinal fusion, which most surgeons would not allow family members or themselves to undergo, yet they propose it with alacrity, on as many patients as they can diagnose. My insurance company would have instantly shelled out $100k for my spinal fusion, yet I had to pay a couple of thousand dollars myself to avoid it...to excellent effect, I might add! Just like "high cholesterol" where 50% of heart attack patients do NOT have it; half of prostate cancer patients do not have high PSA. So go figure...

spinosa profile image
spinosa in reply to 13thwarrior

I'd like to tell you what one of my former students told me (I emailed him as he was finishing his residency in family medicine) after I was diagnosed. My PSA was 8.5, and 10 seems to be the magic line... I didn't know whether to have surgery, radiation or what. He told me, without the tumor load, you have a much better chance to live. My wife - a nurse practitioner - insisted we try surgery. I am glad I did - that was 2002, and it "bought" me these many years. Before surgery, I was on a course of Casodex, to shrink the tumor, which was quite large...I know the weakness, fatigue, cardiovascular problems, voice cracking, hot flashes, etc. Yet, I am glad, for I would not have survived. And, even though my PSA has recently risen from "less than 0.04" to fluctuating between .12-.15, and several experts have told me to prepare for this "indolent" cancer to advance, I may have a chance at several more years. I urge you to visit a urologist and get a scan, a biopsy. Because here's the problem...low PSA cancer patients often have "HIGH-GRADE TUMORS," which are particularly deadly, and do NOT "express" much PSA.

pjoshea13 profile image
pjoshea13 in reply to spinosa

Good advice IMO. -Patrick

in reply to spinosa

He says his PSA is 44. That is high enough to be out of the range that you categorize as the ones that "do NOT express much PSA".

spinosa profile image
spinosa in reply to

True...

in reply to 13thwarrior

you say "half of prostate cancer patients do not have high PSA".

Do you have a citation for that claim??

And how were the patients identified if not by PSA? That is the most common way to find prostate cancer...

13thwarrior profile image
13thwarrior in reply to

martingugino, this snippet and a link sourced from the Harvard Medical School follows:

In fact, studies have shown that about 70% to 80% of men with an elevated PSA who have a biopsy do not have cancer. However, many men undergo an ultrasound and prostate biopsy, to be certain.

Conversely, the PSA test doesn’t detect all cancers. About 20% of men who have cancer also have a normal PSA (less than 4 ng/ml)....harvardprostateknowledge.or...

in reply to 13thwarrior

So that's 20%, not 50%. I am surprised that it is as high as 20%. Maybe those cases were caught by DRE, low PSA, then MRI-or-biopsy.

13thwarrior profile image
13thwarrior in reply to

Factoring in both ends of the error spectrum, where 70% with high PSA were assumed to have cancer, but did not, would give an error rate of >50%. No doubt a number (many?) of those acted upon or took the advice of doctors who either suggested they undergo surgery, or begin taking estrogen. Indeed, if you go back and look at the original, underlying premise (and how it was interpreted) about what often causes PC, it becomes apparent that the premise itself was unsound. Therefore, by definition, much of what flowed/flows from it has a very high probability of being unsound as well.

in reply to 13thwarrior

you say "half of prostate cancer patients do not have high PSA".

A prostate cancer patient is a person who has been diagnosed with prostate cancer. So I don't think that that statement can be true.

BigM62 profile image
BigM62 in reply to

Its true, that mist people are diagnosed (and usually fairly early) through PSA. For the unfortunate 20% of us with low PSA, we still get diagnosed - but very late after already making it to stage 4 and having some sort of pain. I was following my PSA carefully 4x per year by a uro. I still was suprised with stage 4 after back pain with PSA 11 (but 2.9 two months before).

AlanMeyer profile image
AlanMeyer

I'd first like to say something about medicine, and then talk about your PSA and prostate cancer.

I think the name "western" medicine is a misnomer. That style of medicine is practiced pretty much the same way all over the world, not just in the west, and its opposite "alternative" or "allopathic" medicine is also practiced all over the world - though it tends to be different in each country and very different between practitioners. I think what you have called "western" medicine is better named as "scientific" medicine because it uses scientific methods (biochemistry, biology, experimental research, clinical trials, peer review, etc.) to reach its conclusions. Personally, I think that scientific research is the only reliable way to get proven information about medicine although, as you point out, going to a scientifically trained doctor is no guarantee of getting good treatment. There are some medical problems for which scientific diagnosis and treatment has not yet reached a high level, and there are many, many doctors who make mistakes. They may make mistakes because they don't know enough, because they care more about their income than their patients, or because, like all of us, they're only human and humans make mistakes. The trick is to not go to just any old doctor you come across but to find the best ones that you can.

Now, about your PSA:

With a PSA of 44 that has steadily advanced over the years, it's possible that you don't have cancer, but it's more likely that you do. Furthermore, with a PSA that high you may be on, or have already crossed, the line between local and metastatic disease (i.e., cancer that has spread outside the prostate.) If it's still local, it may be curable by surgery or radiation. If it's already spread then surgery or radiation can't cure you and, unless some new cure is discovered, you'll be looking at the possibility of a serious cancer.

Can you get away without treating it? Maybe. Nobody knows. One thing we do know however is that, for most people, cancer becomes more aggressive over time. It starts out slow but eventually picks up speed.

If I were you, I'd find the best urologist you can, someone whom you think you can trust to care about you as his patient. Consult him. Let him do a biopsy. We've all had them. You didn't like yours. I didn't like mine either. It was a pain in the ass. But it really wasn't that big a deal and I did get important information from it about the amount and aggressiveness of my cancer.

If you don't do that, you may live without problems until you die of something else. A lot depends on how many more years you expect to live. But it's possible that you'll develop a serious cancer with real pain for which you'll have to take significant medications for the rest of your life - which may be cut short by the cancer.

As for shrinking your prostate, the usual prescription treatments are finasteride (Proscar) or the newer dutasteride (Avodart). They do work and, if you have cancer, they may actually slow its growth a bit as well as shrink your prostate. There are other drugs too. A non-prescription treatment that some men have used successfully is saw palmetto. If you search Google for "benign prostatic hyperplasia" (the fancy name for enlarged prostate), you'll find articles about these and other treatments.

Finally, let me emphasize again that I think your best course of action is not to avoid doctors because you've gotten bad advice in the past, but to find good doctors if you can. Tell the docs that you want the most conservative treatment that they can recommend - though do listen to them if they tell you that you need something more intensive. You always have the right to decline whatever they recommend that you do, but isn't it better to decline a treatment because you don't want it than it is to never even find out that there is a treatment that could help you?

Best of luck.

Alan

13thwarrior profile image
13thwarrior in reply to AlanMeyer

Alan, thanks for your comprehensive and reasoned response. I continue to work through a variety of supplements that have shown promise - including boron, lithium, and yes saw palmetto and beta glucan. I am also taking curcumin/peperine and upping my D3 -sublingual liquid, CoQ10, and astaxanthan. These are showing promise in other areas of my life - and perhaps they are helping my prostate as well - perhaps. I've researched Proscar and Avodart and they both have registered severe side effects, so like statins, I've avoided them. What's amazing to me (actually not, because of the profit motive) how Big Pharma looks for a natural item that might work, isolates it and tries to make a chemical equivalent. And of course the original RX has side effects, so the doc prescribes more meds to deal with the side effects and on and on. The reality, Alan, is that we really don't have health care in the U.S. - we have Sick-Care. The medical profession doesn't want you to darken their doors unless you've got something going on that they can "treat". I listened to a panel of 4x doctors on this site today, and the first thing one said was that "we generally proscribe castration" to deal with the cancer. Well, thanks a lot, doc" as I speak with a much higher voice, become impotent and develop all sorts of other symptoms.

My best friend died last winter of a heart-attack, after he had received $1.5m worth of "treatment" for Parkinson's - which they can only "diagnose" after they've given you a Parkinson's drug to see how you react to it. Two brain surgeries to try and control his legs (one switch on which they forgot to turn on and he almost died from that "medical misadventure" , meds that made him constantly ill, etc. He told me before he passed away that he felt much worse than when he had started "treatment". Research is now showing that just staggering into the gym and working out is about as effective for Parkinson's patients about as well as disrupting their systems with high-potency drugs and debilitating surgery.

My mother passed away three years ago after a mx/years' regimen of Warfarin, which they are now finding causes accelerated dementia. I couldn't get her to do something else at the time, but her doctor made a lot of money "treating" her each month. At age 93 he had recommended surgery on her carotid to remove some plaque. Fortunately, the surgeon demurred, saying the risk-reward was no better than 50/50, with which I agreed.

After 30 years of the "War on Cancer" women are "surviving longer" now from breast cancer because they have moved the survival time goal post from day of diagnosis rather than end of treatment. My sister in law had both of her breasts removed and also her lymph glands, so now she goes to PT several times a week to have her arms massaged/drained because she can no longer process fluids. And her feet and hands go numb due to the 5 years of high potency drugs she was prescribed post-surgery. 10 surgeons worked on her, and my brother said that NOT ONE treated her with any kindof empathy, like a human being, rather than a statistic.

Treatment always gets "most of the cancer" - because it kills the daughter cells, leaving the more durable ones to stage a comeback later -often with a new type of cancer brought on by the chemo/radiation. (And studies are now demonstrating that of the dozens of chemo varieties, doctors tend to choose the ones on which they get a discount, rather than trying to see which one might actually offer the best outcome.)

What we need to do is somehow resurrect Hippocrates teach him how to use a computer. He could probably put 80% of the current "practicing" doctors to shame. There, now I've got that out of my system and I'm going to go snack on organic apples, some grass-fed beef (minus the hormones, antibiotics and e-coli) and some non-GMO corn.

This is why I am a "warrior" Alan...about a lot of things.

phopkins profile image
phopkins in reply to 13thwarrior

I’m with you!

AlanMeyer profile image
AlanMeyer in reply to 13thwarrior

13thwarrior,

I assume you live in the United States. If so, one place you might look for good quality doctors and treatments is in the teaching and research hospitals designated by the U.S. National Cancer Institute. Here's a link to the NCI Designated Cancer Center program. Click "Find an NCI-Designated Cancer Center" to locate the ones that may be close to you.

cancer.gov/research/nci-rol...

I was treated at the NCI Clinical Center and I thought all of the doctors I dealt with there were first rate. I'm not sure, but I think that most of the docs in the teaching and research hospitals are salaried and make no extra money by prescribing this or that drug or treatment. Further, because they do research, they are interested in and generally keep up with the latest research and so are less likely to make mistakes due to ignorance. You'll also be able to find docs who truly specialize in prostate cancer (and perhaps related diseases like bladder cancer or other urinary system cancers) and aren't just general urologists or general oncologists for whom prostate cancer is a minor part of their practice. Medical science has advanced so much these days that no human can keep up with it all and I think it's important to find real specialists.

It's not guaranteed, but hopefully you can get well informed and compassionate advice in the NCI designated centers. Another way to find good doctors is to post a message in this group saying where you live, or what regions you want to look in, and there may be some members here who can recommend a doctor in your area. If that's not an issue for you and you can go anywhere in the country, say so and you may get a lot of recommendations. Maybe you'll be able to get better care than you've had in the past and avoid the horrors you've experienced. Who knows? Maybe you'll find a modern day Hippocrates.

Also, for more on foods, vitamins, and supplements, I suggest searching this group for postings by pjoshea13. He's done a huge amount of reading on the subject and seems to have the scientific background to really understand it.

Best of luck.

Alan

13thwarrior profile image
13thwarrior in reply to AlanMeyer

Excellent information, Alan. Your suggestions will go onto my "Keep for Sure" list!

Charlean profile image
Charlean in reply to 13thwarrior

I totally agree with what you say and I am so happy to see that some people are not so afraid of dying that they will do anything that doctors tell them. I lost my husband to cancer but the side effects and the doctors/hostpitals mistakes made his life so miserable in the final years. I have a close friend who is going through medical school and plans to go into alternative medicine because he is so disturbed at the barbaric way things are done, the same as they've done for years, and he says most doctors wouldn't EVER do chemo. Fear and big dollars keep it all going so well. You are so right, that natural options can't make them the billions of dollars, thus the reason for the chemical substitutes. Even now, the chemical designing of cannabis is growing while the results are not close to the same. Seems that if you do have cancer, it is slow growing, and I hope it stays that way, but I do applaud you for your convictions!

Charlean

13thwarrior profile image
13thwarrior in reply to Charlean

Thank you very much, Charlean. As you can see by the responses, not everyone has been so charitable. But that's ok. It should be easy to understand why I (and so many other people) have become rather "agitated" by what they've seen done to loved ones and friends, in the name of "practicing" medicine. My barber having 14 knee surgeries and 7 surgeries on the same foot, becoming more crippled each time. And I didn't even mention the two decades of "treatment" my father endured befoe his death. Charlean, a year ago, a car ran over one of my feet. I could hardly walk, was in a lot of pain and a doctor wanted to "operate". I couldn't see how that would help, went to a trusted chiropractor who diagnosed 4 dislocated bones and some nerve/tissue damage, and, along with a masseuse, worked on my foot for several months. Today I have no trouble walking, doing anything at all. Occasionally I have some nerve tingle or a bone misaligns. I tell these stories not to try and be "superior" but rather to illustrate a mega-principle that we could all follow in our dealings with the medical profession. Only engage with doctors who will treat you as a valued member of the team. Question everything - and every medication - they want to give/do to you. They know more than we do about certain things, but we - you and I - know more and care more about our bodies than they ever will or can know. I engage my doctors and tell them exactly what I feel and where, what I've done/not done, etc. Sometimes my analysis is incomplete or incorrect. But by saying something more than "my lower back hurts" and then seeing if they can "fix" it - usually with a pill, I give them a lot more info. A capable - and caring professional -will take that data, plug it in with what he/she knows, and together we come up with a plan. I've had surgeries and taken strong medicines before - when it had been established to both my satisfaction and my doctors - that this course of action was necessary. And since we're all learning, I might have done a few things differently with what I now know. But all we can do is attempt to make the best decisions we can, based upon what we know in that moment.

Charlean profile image
Charlean in reply to 13thwarrior

They don't call it PRACTICING medicine for nothing! I totally agree. Sadly, most all of us have horror stories of treatments our loved ones have endured and many who suffered deeply before finally succumbing to the ravages of these drugs and treatments. You can read on this site many of the side effects which often surface. I realize that without all the people allowing themselves to be used by taking these drugs and treatments, especially experimental ones, it would be hard to make any progress, but frankly I don't think it has really made much progress when you think about it. Cancers increase and successful treatments are rare. There is far too much money to be made by not curing anyone and keeping people alive as long as possible but no thought to quality.

A friend of mine went through a long regiment of experimental drugs for liver cancer. He barely survived the drugs but suffers from such bad neuropathy all over his body, he can barely stand a sheet touching him. He hardly has any strength to walk and rarely leaves his bed and is now so anemic that he has to get regular transfusions. When he asked the doctor about these problems, the doctor actually said to him, "Well, you're alive aren't you? Isn't that what you wanted?" Living and being alive aren't always the same thing. Again, I wish you the best.

13thwarrior profile image
13thwarrior in reply to Charlean

Charlean, you are wise beyond your years...no matter how many that has turned out to be!

in reply to Charlean

You said "Cancers increase and successful treatments are rare" I think a lot of people on this forum would disagree with that. I guess it depends on what you consider a successful treatment. There are people on this forum who have had cancer for over 10 years, have been successfully treated and maintain a good quality of life.

It really depends on the kind of cancer. Some cancers are hell no matter what you do. Treatments are bad and not treating is bad too, so it's a no win situation. I watched my father go through a particularly difficult chemo that I felt shortened his life and reduced the quality of what he had left. But the reality is that not treating would not have been any better for him. He was happy to at least go down fighting.

We with prostate cancer are luckier than many others with much worse forms of cancer.

13thwarrior profile image
13thwarrior in reply to

Gregg57, you are correct that certain types of cancer have considerably better survival rates than was the case a decade ago. But for many kinds, not a lot has changed. And what's disconcerting about chemotherapy, is that the treatment itself can cause new kinds of cancer to appear in the patient. I'm reading about advances in DNA work that places the patient's own fortified assets in this regard, to work in helping them recover. It would not surprise me if one of these days, an 18 year old in a high school chemistry class finds the Rosetta Stone in this regard.

Robertleeb profile image
Robertleeb in reply to AlanMeyer

Great information from AlanMeyer ,I have ProsCancer also and changed my diet and lifestlye because one of them probably what caused it ,it don't matter now but I eat mostly veggies and real fruit not canned. taking B17 regime recommended by my radiation doctor. on Hormone therapy with casodex, I will get a scan in two weeks and start radiation. it seems doing the hormone therapy has helped no more aches around the pelvic.

I believe in fighting this disease at every angle because that is what its trying to do to us.

Best always.

Robert

13thwarrior profile image
13thwarrior in reply to Robertleeb

Robert, the very best definition I've ever heard about cancer is that "Cancer takes place because of a series of insults to the immune system". Much evidence indicates that we ALL have cancer cells inside our bodies. They only get "active", increasing the number of blood vessels, etc. when our immunity drops, giving these little opportunistic B'tards a chance to cause mischief. My sense has always been that we're not just treating/trying to prevent one or more cancer "types" but ALSO we should be seeking to build and maintain the strongest immune system possible. This is going on offense, rather than playing defense. As John McAfee, inventor of the world's first anti-virus (Norton) says, "Any kind of anti-virus is going to be compromised - you must deal with the problem during its 'set-up' phase." Same with us with health or anything else. Same with dealing with violence on the street. You get 'jumped'? Don't "defend" yourself. Attack the attacker! Defense does not win!

I hear what you are saying about the downside of the profit driven medical system we have. There's plenty to criticize for sure. On the other hand, the system produces solutions that work reliably and are proven using scientific methods. And yes, many of those treatments are less than ideal, but they are what we have. We all hope for treatments that are better, less toxic and less side effects in the future and hopefully they will come along as our understanding of this disease improves.

In your case, you've had a biopsy already and you told us you "had a high Gleason score". Unless I'm missing something, that means you have prostate cancer. You also said you had spinal injury. You may already know this, but prostate cancer does often metastasize to the spine. Not trying to scare you, that's just how it is.

I don't see why you would need another biopsy, the first one told you what you need to know. If I was in your situation, I would have a bone scan and CT done to see if you have mets to your bones, lymph nodes or organs.

Sorry I'm being blunt in this post, but as brothers here we want to respond and help those that share their situation with us.

The decisions are yours to make of course, this is just my opinion.

13thwarrior profile image
13thwarrior in reply to

Thank you, Gregg57. I appreciate your approach. No point in pussyfooting around things here, LOL! My spinal injury was due to a ruptured disc. For several weeks, the most incredible, unremitting pain - 24/7- I've ever experienced. I am pain-free now and although I need to do certain stretches and massage sessions to "keep things in line" I am in no way handicapped by the earlier injury. I just have to move around intentionally, do only those stations in the gym which don't irritate things - e.g. no prone leg curls, butt blasters or abductors - and lift things sensibly - good advice for anyone! This is my 30th consecutive year practicing the same martial arts system, and I all my kicks except the back kick (which I seldom now practice, due to the spinal compression effect) can be done full power. In fact, my strikes have become more and more full body, rather than limb techniques.

My first biopsy was about 16 yrs ago. My less than empathetic "specialist told me, based on PSA of 6 that I had a 70% chance of PC. Scared the hell out of me. And they found...nothing. When I wouldn't do a second one soon thereafter, he said "Well, you can choose how you're going to die." I told him I could also choose another doctor, which is what I did.

I may look into the CT. Spent $2k about 6 yrs ago doing a color doppler, which only 6 doctors in the country offer. He found my prostate was small, hard and not lacerated. Said he had never seen any situation like mine in his career. Other than hardness and high scores I didn't have any other symptoms he thot I was supposed to be having. I mentioned to him that I had practiced for a number of years, a "single cultivation" sexual kung fu practice taught by Mantak Chia ("The Healing Tao") which involves an initial "physical lock" near the perenium (both sides) to prohibit ejaculation - thus enabling any number of "valley orgasms". I now can do it mentally and through deep breathing. I suspect that this might have accounted for the denseness. Probably not literally one in a million men know about it. Pretty amazing, for both individuals in a mutually-loving relationship. This was commonly practiced by Daoists in Asia as far back as several thousand years ago. No historical record about how their prostates fared...

in reply to 13thwarrior

From the sounds of your posts, it looks to me like you are trying to convince yourself that everything is OK. and that you really don't have metastatic prostate cancer. You can believe that if you want, but the knowledgeable and experienced people here on this forum are unlikely to go along. We are going to tell it like it is here. You have a high and rising PSA, a high Gleason score and you have already had a serious back injury. You need to get a bone scan to see if you have mets to your spine and pelvis. You also need to get a CT scan to see if there are mets to organs and/or lymph nodes. Without this scientific evidence, there is no proof. I had no symptoms until my PSA was somewhere around 200-300.

Charlean profile image
Charlean in reply to

I would be careful about all the scans as well. When we were at UCSF, the doctor there told us....Like X-rays and PET scans, CT scans use ionizing radiation, which can damage DNA and cause cancer. Some cancer treatments such as chemotherapy and radiation therapy may increase a person's risk of developing a different type of cancer later in life. Just what you want to do, treat the cancer with something that causes more kinds of cancer! This always stuck with me when they kept wanting to do more scans all the time. Just sayin....

in reply to Charlean

Yes, you are right about ionizing radiation causing cancer. You definitely want to minimize the amount of exposure. You have to balance the benefit of imaging with the negative impacts it causes. I make my decisions based on how the images effect my treatment plan. I think an initial set of images is important because you want to see if you have metastases and where they are. That's important to know because it effects your treatment plan.

In my case, I've had an initial set of images and my treatment plan has been established. One doctor wanted to do another set of images as a "baseline" for future comparison. I asked how the images would effect my treatment plan and she admitted that more imaging would not be useful for that at this time. I said in that case, we won't be doing them. I went to another doctor who agreed with me and he said there is no reason to give you more radiation at this time.

When it comes to getting treatments that may cause cancer later, one has to look at the timeframe for this in order to make a decision. If getting radiation will extend your life for an average of 2 years, but may cause cancer in 10 years it makes sense to get the treatment. I rather be alive worrying about possibly getting cancer later than dead.

13thwarrior profile image
13thwarrior in reply to Charlean

You are a sharp one, Charlean! Just last week I initially turned down a set of dental X-Rays, until they told me the dosage was 1/2 of what was done a couple of years ago, and then I went ahead. All about (perceived risk/reward). Turned out I got rid of 2 amalgam (mercury-filled) fillings, in exchange for ceramic ones. All of these things either add to or detract from one's cancer/progression risk profiles.

Don1157 profile image
Don1157

It is profit driven on both sides of the isle. Anecdotal evidence is fine, but it does not stand over time or over large groups of people, good luck to you, but I am sticking with researched based treatment. I sure wish the alternative folks would publish more scientificly sound studies! I never buy something based on testimonials.

in reply to Don1157

Selective testimonials and hearsay is about all you get with some of the alternative treatments that some people are suggesting. They are often based on someone's belief rather than real science. I can't afford to try unproven treatments and risk my life to see if they work.

And anyone who thinks there's no money in alternative treatments is really naive.

13thwarrior profile image
13thwarrior in reply to

Gregg57, there is truth to what you say. That's why it's so frustrating at the present time, that there seem to be no "magic bullets" for most kinds of cancers. But the search for better ways, traditional and non must go on.

TommyTV profile image
TommyTV

The cost of drugs and Big Pharma is of no consequence here in the UK. It’s all free.

Everyone else seems to be skirting around the issue, bur personally I think you’re a crackpot.

Why are you even on this site. Are you here to tell us that you’re really clever and know something the rest of the world doesn’t? Sounds a bit like grandstanding to me. Surprised you haven’t brought up Cannabis Oil.

Given your PSA and high(?) Gleason you state you have, you’re doomed.

Alternatively, your comments are mearly here to provoke and insult our community, just like the rest of the conspiracy theorists on the internet.

What do you want us to say? I’m sorry, but I don’t buy any of it.

in reply to TommyTV

I guess there's no point in sugar coating it, is there?

TommyTV profile image
TommyTV in reply to

When your already dying with stage 4, just say what you feel. What’s the worst that can happen?

in reply to TommyTV

I agree. Many of us here are past the point of "mincing words". What's the worst that can happen? Someone might get a bit upset. What's the best that can happen? Someone might get the treatment they need to extend their life and use that time in a meaningful way.

Don't shoot the messenger, take action!

13thwarrior profile image
13thwarrior in reply to TommyTV

Tommy,

Given the circumstances under which you're currently forced to live, where the government's response to terrorism (or a home invasion) after they've made sure all the honest people are defenseless, is to "Run! Hide! Tell!, I fully understand why you feel "doomed". Quite a change in spirit from that of your greatest leader, Sir Winston, eh?

Be that as it may, it's interesting to note that until your post, I was having excellent give and take with all those who had preceded you. They may or may not have learned anything from me, but I certainly received some takeaways from them.

My sense is the most of the individuals on this site are strong characters who are out to learn (and apply) as much as they can in order to extend both the quality and quantity of their lives. They can handle a spirited give and take. Only one person I've ever heard about has been ultimately been able to cheat death, and it sure won't be anyone on this site. But most of us are as much process, as we are product oriented.

As for the medical services in your country being "free" - they're actually are being paid for through heavy taxation and fiat paper printing by the government (ours does this too!), causing inflation - still another form of hidden taxation.

But we CAN live life to its fullest, and never lose the curiosity and wonder of the child. And we can learn from Felix Dennis, one of your country's wealthiest men, who has said "If you are young, you are infinitely richer than I can ever be again." At 70 I am still "young" in spirit, energy, and inquisitiveness. Why should I spoil the time I have going forward, by feeling "doomed"?

Tommy, I am not at all "clever", as you accuse me of being, but rather driven by the quest for a better (the best?) way to tackle a "problem" - this one being that I might have PC - or not. Even if I was/become Stage 4, I am not necessarily "doomed".

Consider taking time to Google what the doctor who created the PSA test has stated (hint he's no longer too big on it) or the fact that last year, the U.S. Govt. stopped recommending that it be done at all.

I'm a life-long learner. If new information contradicts what I think is best (often the case in this age of hyper-advancements in understanding across all fields), I am more than willing to "change my view" and actions accordingly. Indeed, that's why I'm taking valuable time away from irritating others, in order to make a few posts on this very interesting and informative site.

IF I did perchance "provoke" or "insult" any of my earlier responders, it was/is certainly unintended.

I wish you the very best, Tommy. Keep Calm (perhaps have a toke?) and Carry On!

Don1157 profile image
Don1157 in reply to 13thwarrior

What Tommy said was heard not. I felt the same way too, I felt lectured to by someone who has beat us up with ego if not age, and then you go and degrade his government. We all have recognized that no one is an expert in this battle, still looking for answers, all of us, so when you come to our group discounting what we have learned, the tone of the conversation does change, natural thing. We support each other and practice humility. There must have been some reason to join the group other than to present us with pseudo-science; some of the people, like me, have tried supplements and other concoctions that we have researched in carefully controlled studies (few and far between), we accept science, we do not build an argument against it. And by the way the "Government" did not recommend stopping the PSA test; just when it is done. There are arguments for late and early testing. If I would have had an early test, I may have been able to start treating it sooner! We are also realists, we do not try and build our esteem through denial and pin our hopes on people telling us what we want to hear. One more thing, we have not experienced inflation in years.

13thwarrior profile image
13thwarrior in reply to Don1157

Don1157, the response was in part due to the tone and accusatory nature of his first post. There is no denial here, and as you know people are always able to choose what they want/need to hear. I find that those who have responded so far seem well able to do so. Re the BP, it has lost 50% of its purchasing power (a form of inflation) in the last 10 years; the USD 80% since 1970 and 98% since the 1920's.

Don1157 profile image
Don1157 in reply to 13thwarrior

I do not believe purchasing power is a good substitute for inflation, but I would be interested in looking at those stats, do you have the references? It may be that the stat you are quoting may be more of a function of stagnant wages and concentration of wealth and increased pricing. The length of time you quoted may be a bit long considering all the history that has occurred. And of course the Euro. I do agree that people only hear what they want to hear. That is painfully obvious these days. I personally trust my physicians, as they do not order me to follow a treatment protocol, we discuss options. I make the final decision in conjunction with my wife. You may have something to offer, my request would only consist of the provision of the references, so I may examine the quality of the research and learn for myself. My reaction to chiropractors and alternative health practitioners is that my daughter got trapped in their path and now is scared of everything, by their practice of promoting their businesses, with very weak to no sound scientific research behind it, and they have convinced her to be skeptical beyond reason of sound medical practices.

13thwarrior profile image
13thwarrior in reply to Don1157

Don1157, looking at relative currency changes is one way to gauge this. Consider that, in the U.S. at least, probably elsewhere, "official" inflation is considerably understated, enabling lower govt. payouts on transfer payments like Soc. Security, etc. Looking at how prices change on things you normally buy is another way.

I understand your daughter's reticence about chiros. 5 years ago, I would have had very little positive to say about them either, having had several neutral to sl negative experiences. But I have been lucky to meet two who are literally shamanistic in their understanding of the body and what it takes to "fix" it. One of these miracle-workers kept my brother from going into neck surgery, just two weeks before his scheduled operation (2 months ago.) When/if you find a good one, keep their number!

Don1157 profile image
Don1157 in reply to 13thwarrior

Oh no Warrior, she is still under the spell, and he is not the kind of miracle worker to whom you referred. I thought he was good at muscle manipulation, but that was it.

Sisira profile image
Sisira

Thank you Tommy, you have given the devil its due!

Sisira

OK, I get it. You are angry at the 'medical establishment'. I hope you are open to the guidance you are receiving on this site. You sound like a rebel ... without a clue. Sorry for the bluntness. Good luck.

13thwarrior profile image
13thwarrior in reply to

WSOPeddie,

Yes, I AM a rebel...following the clues.

Dan59 profile image
Dan59

Warrior, I have been on avodart for 11.5 yrs with absolutely no side effects, except a posible thickening on the hair on my head, Also I have been on all treatments including estrogen, and I can assure you, I am very much a Man.

You never actualy mention what your Gleason score was 16 yrs.ago, It is my understanding they can migrate up over time. I suspect it was lower given your slow disease progression, and that you were doing active surveilance. However the marker you have is an increasing psa , indicating advancing cancer, If you wait for sudden dramamatic increase it could double in a month, which would be a much harder cancer to control. As Yost says everyone of us must make our own treatment choice, and often denial is an excellent defense mechanism for handling the mental stress of APC. Just my guess that 12 months of treatment would leave you with an undetectable, psa at 71 yrs old ,and your T would recover. I suggest you read Dr Bob Liebowitz and his protocols and results.

I wish you the best

Dan

13thwarrior profile image
13thwarrior in reply to Dan59

Thanks Dan. Will place Avodart on my "Go back and Check out a Second Time" list.

13thwarrior profile image
13thwarrior

Many thanks, Nalakrats! Looks like they have several clinics in that area, to wit,

Dr. Zeligs, Urologist, Colorodo denverurology.com/ I have known about the presumed efficacy of DIM for quite awhile, but have now done enough research to cause me to "activate" using it. Along with Boron, Curcumin, Astaxanthin and CoQ10, + liquid D3 I spent years tying to get my Vit D levels up to even low normal. Started taking MyKind D2 (Methylcobalamin (sp?) and within two months it was at "high normal". Go figure.

13thwarrior profile image
13thwarrior

Tremendous! My ongoing research indicates that Vitamin D is a Linchpin for systemic health and immune strength. D3 is the important version to take, ideally with Vit K. The breathing exercises invigorate the entire system, yes.

This may be too esoteric even for you, but Dr. Joe Dispenza (who literally saved my life before he sold his chiropractic practice to focus entirely on energetic work), has a powerful program using meditative practices where you mentally create the future you want and then "release" that vision into the "quantum field" to, over time, be realized.

It is a process to help us react in new ways to old stimuli. I am certainly no adept at it, but after several years, adding it to my two decades of practicing Tai Chi-Qui Gong-Daoist energy movement practices, I can tell you that it is a powerful tool in 'reframing our responses to life's challenges. His seminars are not cheap, and you may not want to attend anyway.

For a glimpse of his philosophy, go to Amazon and see my review of his book, You are the Placebo, one of the very few book reviews I've ever done. And by the way, has anyone ever told you to express gratitude BEFORE something good happens? No one in my life, until Dr. Joe. Expressing Gratitude exerts more positive power in a person's life than all the unpronounceable medical nostrums that Big Pharma will ever devise - and with NO known (negative) side effects!

softwaremom00 profile image
softwaremom00

I would love to hear about your supplements. I have my DH on quite a few supplements, some are ideas from me and some from our Nutrition Doc. I am always open to new suggestions.

Although we are also using conventional medicine. I totally understand a complete holistic approach. I watched a bunch of the video's from Chris Cures Cancer.. they were free and interesting. Much of it is stuff we were doing but learned some new ideas too.

13thwarrior profile image
13thwarrior

Excuse me to both you and softwaremom00 - but what/who is the context of DH?

softwaremom00 profile image
softwaremom00 in reply to 13thwarrior

DH is Dear Husband, He is a dear and sweet guy!

DFZ4835 profile image
DFZ4835

I have never even heard of a medication that doesn't have side effects of some sort. Food is another thing that can have side effects from mild to fatal. Our environment the plants, animals and insects could kill us from allergic reactions. The men on this site weighed the options and come up with a personal plan to fight this APC. ( Advanced Prostate Cancer ) Most of us have included additional supplements to add to our prescribed medications. This forum is for those of us who have advanced prostate cancer with metastasis. Does this description fit you? Please advise us of your status as how you fit with those of us on this forum. Maybe you should go to the breast cancer forums and tell them they it all wrong and should do it your way.

Dennis

13thwarrior profile image
13thwarrior in reply to DFZ4835

DFZ4835, I may well have advanced- PC. In fact, certain (but by no means all) data points indicate this possibility. But the exchanges I have here and the knowledge I may gain (several good ideas already) will in the event help me to be more prepared, more proactive and more aware of my options. I will not (and have not so far) been made to feel like I should do exactly what the doctor orders, without question, and without being fully involved in the conversation. In part, it's because I've been an activist for myself, and for those whom I love, in their own hours of need.

Many (most?) of those with whom I've been acquainted - family and friends - were not prepared to do so, and their stories, and fates (including both of my parents) largely reflect this fact. I mentioned in one of my posts, that a relative who had a double-mastectomy said that of the 10 doctors who interacted with her, NOT ONE treated her as anything more than a statistic. How would something like that sit with yourself, or a loved one?

Becoming "agitated", "angry" "upset" - whatever term you'd like to use, can lead to focused, rational research, understanding and then calm decision-making on the part of the patient (us). The opposite, passivity, hopelessness, deferring all decision-making responsibility to someone else, brings about the exact opposite. Watch the excellent series "The Truth About Cancer" (TTAC) and see if you don't agree. The pathbreaking series grew out of a man's grief, helplessness and anger over the way several of his family members were taken away in a professional environment where more, and different things could have been performed. Not to mention how much more so many patients themselves might have taken things into their own hands - before and during a given diagnosis/prognosis.

softwaremom00 profile image
softwaremom00 in reply to DFZ4835

I am here for my husband who has Advanced Prostate Cancer. Sometimes I refer to this as a we.. or even a me...as I am the one doing the research and getting the supplements.. cooking the healthy meals.. coming up with the diet..etc. Sorry for the misunderstanding. His cancer is very aggressive.. so I have to work fast and hard.

13thwarrior profile image
13thwarrior in reply to softwaremom00

softwaremom00,

You are truly a Warrior. You are both on the same battlefield. He went out on Point, and you have his Six.

Here's something for you to research/consider. Don't take my word for it. I've used it from time to time over the last few years (mostly because it's time-consuming to make). I intend to shortly begin drinking it daily. It is called Essiac Tea. Read the history behind the Canadian lady who developed it and see if it holds for you "the ring of truth".

Here is a site which sells it ready-made. If you see advertisers who sell "improved" essiac tea, don't bother. Simple is almost always better. tinyurl.com/y9zyxzgh Just copy/paste this shortened URL into your browser. If he (and you) drink it, rinse/drink the residue too. No point in keeping the metaphorical nuggets and tossing out the gold dust!

My absolute favorite definition of cancer is that "Cancer is caused by a series of insults to the immune system." This and other procedures can help lessen these "insults". Dealing only with "the cancer" focuses just on the symptoms. If your husband's immune system (as most likely mine too) had not been so often "insulted" he/I might be operating on a much higher plane than is the case at present.

softwaremom00 profile image
softwaremom00 in reply to 13thwarrior

Thanks for the advice. We are doing Essiac Tea. I make two kinds the one with the 4 herbs from Starwest Botanicals and the one with extra herbs from Flor Essence - I like that it has red clover. I try to get him to drink 4 ounces in the am and 4 ounces before dinner. Every so often I give myself a cup. I think it tastes decent. I find if I have him drink it too late at night then he is up going to the bathroom more often..so for him it must have some Detoxing effect.

Often when I add a new herb, I try it first to see if there will be adverse reactions. Last night I tried a teaspoon of Moringa Powder in my tea. It made me sick(throw up). Might try it again with food. I am worried it will make him sick.

We like the Essiac - It is a great tea and not too bad tasting. Thanks so much!

13thwarrior profile image
13thwarrior in reply to softwaremom00

Great, softwaremom00! Keep on keepin' on.

softwaremom00 profile image
softwaremom00

My honey has Small Cell Neuroendocrine Prostate Cancer. . the PSA does not mean much, we are using ChromograninA to measure progress. His oncologist has him taking Zytiga and Lupron shots. We have finished our 5th chemo round last week, the chemo includes Docetaxel and Carboplatin. The PSA high was 10.7 after the biopsy in June but it has been down around .02 since the Hormone treatment began.

I have been trying hard to get his RGB counts up and Hematocrit but it has been hard.

We never got a Gleason score as the Cancer was discovered when it had gone to the hip. At that point they did not know it was prostate cancer yet.. even with the Pathology. This was late May of this year.

He is actually doing quite well considering. He finally got a BiPap, and eats tons of fruits and vegetables and fresh made juices. So far the chemo has not been able to kill off all of the cancer... at least according to the CgA readings.

13thwarrior profile image
13thwarrior in reply to softwaremom00

Softwaremom00, I sincerely wish your husband - and by extension - yourself, the very best. All of us have many dozens of chemicals in our bodies/bloodstream due to the toxic environments in which we live. My strategy has long been two-fold: to work on minimizing/slowing the growth of a cancer which I (might) have, while also avoiding when possible chemicals such as electric air freshener plug-ins, scented detergents food in plastics (chemical leaching), etc. Virtually all of us have in our blood, toxic amounts of teflon from cooking ware. I can remember years ago seeing a cloud of it in my kitchen when a pan got too hot on the stove. Not good at all!

Sometimes this may seem overwhelming. But everything done in this regard is all to the good. Recent reporting shows that in the U.S. 70% or more of all the commercially-raised beef, chicken and pork contains massive quantities of antibiotics (100%?), growth hormones and often e-coli. Farm salmon is just as bad. 80% of all antibiotics sold in the U.S. goes into commercial meat production. One has to believe that limiting the amount of such products ingested can have powerful salutatory effects on our bodies (and minds). If I could only afford a pound or so a week of hormone free, grass fed meat protein vs. 20 pounds of the mass-produced kind, I would opt for the former. It would not surprise me in the least to one day find out that 75% of all cancers have been initiated - and perpetuated - the toxins we ingest daily. This is really sad for all of us, but the increasing awareness can and will do much to give everyone, your husband included, a longer and much more vibrant life. Best to you both.

Charlean profile image
Charlean in reply to 13thwarrior

i so agree with you on the meat. Check out ractopamine. It is fed to pigs, turkeys, and other meat animals as a growth promoting agent. It is banned in over 100 nations, including China, but not the US of course. I have seen pigs fed this additive and they can hardly walk, they are aggressive, and look like Arnold Schwarzenegger.

13thwarrior profile image
13thwarrior in reply to Charlean

Charlean, it's amazing how different a grass-fed sourced hamburger, or a hormone-free chicken tastes. If we're going to meat, I feel we owe it to the "victims" to treat them with a level of respect during their lives. Indeed, though I could never totally become a vegetarian, I also cannot argue on ethical grounds, against their position either.

Charlean profile image
Charlean in reply to 13thwarrior

I feel the same. We raise a lot of our own meat, organically grown. My granddaughters get a lot of criticism about how they can kill their own animals, and they proudly tell their friends "our animals have a great life and only one bad day, and we know exactly what they eat." People are so naive about our food and water supply, even though its not that hard to do the research. The fish in the great lakes show large quantities of antidepressants in their brain tissues, FDA confirms residue of round up in baby food, etc. and we just turn a blind eye to the consequences and wonder why so much cancer.

13thwarrior profile image
13thwarrior in reply to Charlean

Charlean, Yes. Supposedly as of a result of the solar eclipse, we had a 150,000 accidental farm salmon release. The Game Dept. said "No limit! Fill up your creels!" Farm salmon - One of the most polluted "foods" on the planet. Gray flesh before artificial coloring is added. Sores on their bodies. The bottom fish below the pens covered with cancerous lesions. I would not use them as fertilizer in my garden. Hopefully, the Orcas will pass on them too.

Here's a humorous - and truthful story. Wolverines are extremely aggressive when they go after something. In this case a sourdough's cabin in Alaska which had been barred on the windows and door. He went down the chimney and ate all the food on the table. The one thing he would not touch? Packets of artificial sugar! Go Wolverines!

Charlean profile image
Charlean in reply to 13thwarrior

Yes, and the list goes on and on. My point is, people owe it to themselves to do the research because our government protects and covers up. Ignorance is no excuse any more..too easy to really find facts.

j-o-h-n profile image
j-o-h-n

TO EACH HIS OWN.

youtube.com/watch?v=0G5wqiL...

Good Luck and Good Health.

j-o-h-n Tuesday 09/26/2017 9:19 PM EST

13thwarrior profile image
13thwarrior in reply to j-o-h-n

J-O-H-N, this video did not open. If it was meant for me, pls consider typing in a hyperlink (URL) into your response, which I can then copy/paste into my browser window.

13thwarrior profile image
13thwarrior

Nalakrats, you sound like a person of great curiosity and deep, reflective thinking. Important "weapons" on the health warfare battlefield.

j-o-h-n profile image
j-o-h-n

It was meant for everyone. (Keep smiling).

youtube.com/watch?v=0G5wqiL...

Good Luck and Good Health.

j-o-h-n Wednesday 09/27/2017 1:32 PM EST

SOLY HIT, the 15th anniversary of my RPD.

maryk_tx profile image
maryk_tx

Hi 13th Warrior. Are you doing Oriental Medicine (nccaom.org/find-a-practitio... )? Have you looked a ecoNugenics ProstaCaid or Modified Citrus Pectin (MCP)? Have you read about Green Tea/extract for catechins, POM 100% Pomegranate juice, Turmeric with curcumin? Avoid dairy. Eat broccoli, cooked tomatoes (lycopene), watermelon, ginger, spriulina tablets, ground chia seeds, ground flaxseed, celery, walnuts, ginseng and the other substances that were in PC-SPES (Google it or link to it through this important article:

cancer.gov/about-cancer/tre...

My story: at age 52, my husband had his annual blood work in late July. At a PSA of only 3.7 his PCP referred him to a urologist. (His prior PSA eighteen months earlier was 1.7.) Urologist felt a lump, a week later did a 16-needle biopsy (early Sept). Seven pins were cancerous: Two at Gleason 9 and at 90% of 100% of the needle, five at Gleason 7. Several more were pre-cancerous (high-grade PIN). In both lobes - so at that point considered Stage T2b or T2c.

I instantaneously became a fulltime PC researcher while my "real job" took a back seat. We didn't wait -- we started adding things mentioned above to his daily supplements and diet as I learned about them.

Thank God his bone scan and chest xray are clear, but MRI (early Oct) shows PC is in left SV and possibly in left nerve bundle. That puts him at Stage T3b.

He wants to do radiation with ADT, not RP surgery - hoping for less chance of side-effects like bladder incontinence and ED, and due to his "positive margin" tumor, he feels he'd likely have to have radiation following a RP anyway. He started Lupron today (mid-October).

We are looking at IGRT (image guided IMRT) unless MD Anderson can convince us that IMPT (intensity modulated proton therapy) is worth the drive from our home. From what I've read, proton therapy may give him a 26-39% less risk of secondary cancer (from radiation) down the road. We hope to find out tomorrow whether he is even eligible for proton therapy at a Stage T3b and Gleason 9.

In any case, we will be continuing with the natural substances up to, during, and after Western treatment.

13thwarrior profile image
13thwarrior in reply to maryk_tx

No, I am not, maryk_tx. But thank you for the Oriental Medicine Practitioners' Directory link - which I am saving for future reference.

And yes I am very aware of Pecta Sol. I've taken the powder off and on for a couple of years. I am taking several other supplements now, and once I have subjectively determined if they are helping me (2-3 months?) I fully intend to order more Pecta Sol AND do the first try on ProstaCaid capsules (vegecaps yet!).

Looking at your list, I am taking/increasing my intake of most you show. Now taking liquid Tumeric (Purathrive) - much easier to do than the hard capsules; Eating a lot of steamed broccoli, celery, walnuts, etc. I pigged out on watermelon in season for two months. One of my (several vices is milk, but I drink Organic 2% Costco on my organic cereals. I do however intend to drink less milk and more rice milk - an excellent one is Costco's unsweetened version. Thank you for the reminder list...

I am sorry to hear about your husband's circumstances - however, it appears that he is very fortunate to have you in his corner. I've heard some very good things about proton therapy - and it seems they continue to make substantive improvements on the procedure.

May I suggest that you become even more intentional than you probably already are about working to strengthen his immune system via diet, even as he "follows the doctor's orders"? The goal (my goal) is to have at some point, a "convergence" between strengthening the immune system and directly working on alleviating/destroying the rogue cancer cells in the body.

Have you watched the Truth About Cancer Series? Here is a new teaser link about pets - amazing how much applies directly to us! I think that you, and possibly your husband, will enjoy it.The Truth about Pet Cancer. tinyurl.com/ybs2wn5a

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