Reprinted with the permission of Richard A. Barca - Jackson, Michigan

Prostate Cancer Article

Education, primarily self-education, has always been important to me. How can we best help inform pre- and newly diagnosed PC guys of their options BEFORE bad things are done to them?

At the risk of over-generalizing, I think guys walking in off the street and being diagnosed with PC tend to react in one of two ways. One of these, let's call it Class A, goes something like this, "Cancer, Yuk! Doc, get that stuff out of me, or kill it dead in its tracks ASAP, and be damned with side effects or recurrence rates .... just get it out of there, and the sooner the better!!" This person knows exactly what he wants, and, by all means he should have just that. Any unfavorable consequences are clearly his to bear. This guy wants or needs no part of our help, and we should give him a wide berth, and wish him well.

The Class B guy, on the other hand, wants to know all of his options, and may well have an interest in non-toxic therapies that are effective, either singularly or in combination. He has a serious interest in recurrence rates, and a very serious interest in adverse side effects. It is this guy, and maybe some of those people that may lie somewhere between Class A and Class B, that especially concern me. How do we help them to best self-educate themselves BEFORE things are done to them that they may well later regret??

This has always been a big challenge to me, and I don't know the answer. But I keep searching and thinking about this. In some ways, it seems like it is almost too late, for the great majority of cases, once the PC diagnosis has been made. Maybe its the guys with BPH problems that we should concentrate these efforts on. By trying to help them smarten themselves up before the Big C diagnosis hits them between their eyes.

At any rate, I compiled the following essay as an attempt to begin to move toward helping recently and pre-diagnosed guys become motivated to start learning about what they are up against, how they may discover their options, and who their worst enemies likely are.

If PC education concerns you, read it and see what you think. How can we improve on it? How can we best get something of this nature into the hands of those that need and want our help?? Give it some serious thought. Suggestions - comments welcomed.

RICHARD A. BARCA ...... a concerned patient-survivor,
& Patient Education Advocate

THE NEWLY DIAGNOSED PROSTATE CANCER PATIENT'S FIVE WORST ENEMIES

#1 FEAR & PANIC

This is a completely natural reaction, and will be present in everyone to one degree or another. The more ignorant of the cancer process the person is, the greater will be the tendency for him to embrace the common BIG C perception ...Fear, Panic, Suffering, and Certain Death! This, of course, is very far from the actual truth, but if it is firmly believed by the person's mind, it can easily become a synthetic or artificial "truth" ----- which can have a very detrimental effect on the patient's health. We've all heard stories of a cancer patient whose been "given" six months to live by a doctor, and who dies [a virtually programmed death] at the near-exact 6 month mark! But this is getting ahead to Attitude & Mind-Set, a truly double-edged sword. The immediate worst problem is that Fear & Panic leads to Hasty [and often later regretted] Therapy Decisions. Don't panic [no matter what you are told!]; conquer your natural fear through self-education. That will take a little work, but it darn sure can be done!! This is hardly the time for being lazy, or, for letting other people make your decisions for you. If you're not given ALL the options, you're not making the decision. Multiple choice, when ALL the options are not laid out on the table before you, will not constitute a real decision on your part. Who can choose among A, B, and C, without even being aware of D through M, and say he made an intelligent choice??

#2 HASTY THERAPY DECISIONS

Usually its better to do nothing, at least initially, than it is to do the wrong thing. The rush stems from the common misconception that TIME is so extremely important that it supercedes virtually everything else. The simple fact that this growth process has been taking place in one's body for the past 20, 30 or even more years is generally not known, and that fact is certainly not normally brought out by the hurry-up-and-do-something-FAST attitude of the allopathic medical community. "Sharpen the knives, book the O.R., crank up the radiation machinery, break out the chemo" are all too common Battle Cries of our times. Or in the case of P.C. [prostate cancer], rush into a radical, radiotherapy, cryo, castration, or, if one is a bit "luckier," double or triple hormone blockade action. That latter at least buys the person some time ..how critically it is needed [or indeed if it is needed at all], may be another matter. Hopefully the purchased time will be used wisely, but often it is not .. and the patient drifts aimlessly into hormonally refractive PC. And if he is [has been put on] on "continuous" hormonal blockade, the time he is likely to end up buying is even less than his "fair share." Hasty therapy decisions are, in my opinion, in many cases, far more detrimental to the patient's health than they are helpful. Most people, especially men, will never admit, that perhaps they "followed the wrong path." That is just not the way of the Warrior. Most guys, probably including Yours Truly, always make or made the "right" decision! Not many among us can admit to perhaps doing the wrong thing in such matters. Even the radical patient, or one who has undergone some form of radiation, or who has been castrated or frozen, AFTER the procedure has been deemed a PROVEN FAILURE by rising PSA, and perhaps even other diagnostics as well, will rarely admit that he flat-ass "made a mistake" in his decision. It is well known that PC is generally slow-growing. People with PSA counts in the triple digits will usually live for years doing absolutely nothing .. not that anyone is suggesting that that is "the way to go." You don't have to make a big or final decision tomorrow, or next week, or even within a fortnight or a month. Take some time, do some hard studying and learning, some serious networking [including non-toxic "alternative" therapies]. Time is on YOUR side .. Don't run for the nearest conventional or orthodoxed therapy. Serum PSA counts, by the way, theoretically range from 0 to 100,000 ng/ml. The highest I have noted in medical literature has been around 8000!

If you have been properly staged, if the size or total volume of your prostate has been properly measured with ultra-sound [TRUS = Trans-Rectal Ultra-Sound], if your Predicted PSA value has been calculated, and your are still concerned about a genuinely high, or too quickly rising PSA, then you should consider getting on a PC-SPES program straight-a-way. This is a pharmaceutical-grade mixture [non-prescription] of 7 Chinese herbs and 1 American herb. Unfortunately, it is quite costly, and, of course, as a supplement, not paid for by allopathic medical insurance, but in nearly all cases, it will bring the PSA value down markedly, and keep it there. It may have relatively minor side-effects in some cases. But, in the very least it will buy you some valuable time for further personal studies and investigations. If you have "health" insurance ["sickness" insurance might be more appropriate, in reality!], but can't afford the SPES, some hormonal therapy [conventionally or non-conventionally applied] might be appropriate to buy additional time. A good reference on PC-SPES, by the way, is a book titled "The Herbal Remedy for Prostate Cancer" by James Lewis, Jr., Ph.D. It is available through ECPCP [Educational Center For Prostate Cancer Patients at 1-516-942-5000] --- as is much good other information regarding PC.

#3 IGNORANCE .... Really #1 in a way

Let's start with the most fundamental question of all .. your prostate gland volume in cc's [cubic centimeters]. It seems to me that the great majority of recently diagnosed men will have PSA values under, 10, 12 or even 15 ng/ml. If you are significantly over these amounts, you are not really a viable candidate for localized, conventional PC therapies anyway ---- because likely you have some degree of metastises whether it be Clinical [determinable by the best of man's diagnostic instrumentation] or Non-Clinical [too small to be measured].

Getting back to our less than 10-15 man, chances are strong that he will be in his 60's or 70's, maybe his upper 50's. Since enlargement of a man's prostate, at these ages [at least in our society], is virtually a given, it is absolutely critical that gland size [that is, volume in cc's] be established by a good ultrasound measurement. This is because the larger the gland, the more PSA it will generate ... totally irrespective of the presence or absence of PSA of PC [although a new type of PSA test has just recently been announced that is supposed to read only PSA generated by malignant prostate cells!]. The volume of a prostate may be 25 cc's, or it may be on the order of 200-300 cc's! This is a tremendous difference! The Predicted PSA value is the normal amount of PSA that a gland of a given size can be expected to manufacture or generate. If a gland is enlarged enough, via prostatitis/BPH [Benign Prostatic Hypertrophy], it could put out a relatively high serum PSA value and still not be cancerous at all. In such a case it would warrant neither biopsy nor PC therapy. I have personally watched an ultrasound demonstration involving a gentleman whose Predicted PSA value was 25 ng/ml, and who had no conventional or color doppler mode signs of PC with ultrasonography. His gland size was in excess of 200 cc's, his predicted PSA 25, and his measured PSA was about 12.5. My own gland size at diagnosis was 104 cc. If you don't know your gland volume, you can't calculate your Predicted PSA, and thus you have no idea of whether a 10 - 20 PSA reading is normal or abnormal! So to panic at a reading of 6 or 8, or even 12 or 15, may not even be warranted, depending on the circumstances. And of course that is doubly so if surficial nodules could not be felt on a DRE, or Digital Rectal Exam. So-called abnormal PSA values lead to ultrasounds, as they should ... but all too often the latter leads to "blind" sextant biopsies --- that is where one biopsy needle core is routinely shot into each of the six prostate sectors [3 in each lobe]. According to good prostate ultrasound experts, six shots "in the dark" prove nothing. Valid PC-type anomalies should be seen on both the black and white mode, as well as the color doppler mode of the TRUS images, to even warrant shooting the cores. But that's where the experience level and skill of the ultrasound operator/specialist comes into the picture! An ultrasound machine is like a Ferrari. Do you want a Soap Box Derby driver driving the Ferrari that examines you?? Better pay close attention to whose "behind the wheel!"

So that being said, how does one go about the self-education process for PC? One sometimes helpful way is to join a few national PC support groups. Good ones are PAACT, Inc. in Grand Rapids, MI. [which stands for Patient Advocates for Advanced Cancer Therapy], ECPCP [Educational Center for Pro-state Cancer Patients] in Jericho, NY, and US TOO! International in Hindsdale, Illinois [a Chicago suburb]. Most have 800 numbers, but call information for those cities. Then call the organization and ask them to send out their information packet for prospective new members. Also, you can usually get the name and number of an adviser that you can contact for additional information. Normally these are knowledgeable layman who are patients themselves. The idea is not to believe all of what any one person tells you, but rather to get started networking on the subject. Read all the materials carefully that each group sends out. They will also send you samples of their newsletters or bulletins. They will ask for a membership donation, but feel free to pay whatever you feel you can afford to pay, or nothing at all if that's the case.

Find out where the nearest US TOO chapters are located ... they are all over the country. Get the name and number of local chapter organizers/ program chairmen from headquarters, and call to be put on their mailing announcing the meeting time, place and topic. Attend those of your choice, listen, ask questions, talk to the other guys before and after, and during the break. You can't discuss matters too much. You will get lots of opinions, good and not-so-good advice ..but you don't have to believe it all, nor should you. Another group with a lot of national chapters is Man-To-Man. It was an independent group for a number of years, but later to simplify getting places to meet, and help with preparing and mailing out announcements, and stamps [and in the case of the Syracuse group, publication of meeting minutes], they consented to become part of the ACS, or American Cancer Society. The latter has not been, historically, one of my favorite organizations. Both US TOO! and M-to-M meetings will range from conventional topics presented by allopathic medical doctors, to alternative [non-toxic] therapies presented by various speakers, to round-table discussions of the members' situations and histories, to support meetings for guys wearing diapers, etc. Pick the meeting topics that you are most interested in, and convey to the organizers what your interests are. They may organize a meeting on that issue, or put you in touch with other members with similar interests.

In addition to listening and talking, read! Get as many references to PC books and articles as you can, and pick those that are of interest to you, and read-read-read, and then read some more!

Be sure to ask all three or four support groups for a list of any and all audio and videotapes they have available, or know of. These are usually quite inexpensive [sometime just the cost of a blank tape and shipping!], and they are, overall, an excellent, and a fairly quick source, of PC information. There are symposiums for the PC patient that you can attend, and on rare occasions you can get at least audio tapes on these at a later date. Always remember, you shouldn't necessarily believe all that you see or hear. Take it all with a "grain of salt --- but you are going to get a wide range of exposure on the subject, and that's what you want. The broader and more far-reaching the better. Exposure, exposure, exposure ....the more you get the better informed you become. At first it may seem a little confusing, but your brain will eventually sift it all out, and as time goes on, the best course of action for you to follow will become apparent .... in both your mind and your heart. Don't let anyone push you into doing something, or rush you. Make your decision when YOU are ready.. not your family, not some doctor. Who's prostate is it anyway? Who's life is it? Easy for some doc to say Whack It Out, Zap It, Freeze It, Get Castrated, etc. It's not HIM who this is being performed on!!

Your final educational objective should be to learn about ALTERNATIVE Non-Toxic PC therapies. You might start by obtaining and reading a copy of An Alternative Medicine Definitive Guide of Cancer by Diamond, Cowden and Goldberg, Future Medicine Publishing, Inc., 1997. At book stores, amazon.com, sometimes large health food stores, or even from publisher in Tiburon, CA [call 1-800-333-HEAL]. 1116 pages, around $50. Notice especially chapters on a couple of alternative-minded MD's ...... Keith Block in Chicago and Michael Schachter in Sufferin, NY. But the whole book is excellent, and all should be read!

Remember that one is not limited to ONE singular alternative therapy. Several can be used in combination, or tandem. This is what I call CATs ..... Combination Alternative Therapies. More and more medical physicians are starting to use alternative methods in conjunction with standard allopathic procedures. They can be used as a Complement to allopathy, they can be used as truly a Mixed Therapy with allopathic, or they can be used by themselves as the primary mode of therapy ..... either singularly, or in combination with one another. Or they can be ignored. The decision is YOURS, no-one elses. YOU are going to have to live with the results .... no one else is! You can also find discussion groups and information sites on the Internet. Again, sort of take everything with that grain of salt. Alternatives, by the way, are NOT cheap, in general. And they can clean out your wallet and do you no good just as fast as allopathic, localized therapies can. No one has the corner on that market!

#4 ATTITUDE & MIND-SET

This is extremely important. We have all heard of the placebo effect ... tell someone you are giving him a pill that will cure him, give him a dummy or sugar pill, and he gets well! He believes it, and it happens ..... at least sometimes. On the other hand get a domineering White Coat to tell a guy he has 6 months to live, and that's exactly when he keels over!! The mind is an exceptionally powerful component! We've all seen stage hypnotists tell someone in trance that he was going to touch their arm with a pencil and that nothing would happen, and then touch it with a hot soldering iron and nothing happens! Or tell him or her he was going to burn them with a hot iron, and then touch them with a pencil ..... and they jump and a blister forms and they hurt like hell! Examples of the power of the mind, and the power of belief systems.

You can harness this energy through meditative practices of many different kinds. Everything from scientific biofeedback in a laboratory to faith healers. There are a great many to choose from, and if you are so interested, here is another whole topic for you to investigate. Also, this can be used in general, just by KNOWING that you have the power and the smarts to control this thing called PC. Some people BEAT it, some KILL it, still others NORMALIZE it by, in one fashion or another, converting malignant cells to normal cells. A strong POSITIVE, in-control attitude goes a LONG way in this business, and ALWAYS bear that uppermost in mind!

#5 TAKING CHARGE, TAKING RESPONSIBILITY, DESIGNING AND IMPLEMENTING YOUR OWN THERAPY PROGRAM

This gets back to the age old question Who's life is it anyway?? If you are going to be the one to live with the consequences of what you do, or allow someone else to do to you, then who in this picture should be making the decisions .... calling the shots?

In my experience, family is far more sensitive in this light, than some stranger wearing a White Coat, and sometimes coming across as knowing All There Is To Know. No doubt, there have been War's of the Roses, if not divorces, over lesser matters! Its a highly personalize subject, but in the end [at least in my opinion] it has to be the person with the problem's final decision. The spouse may be in drastic disagreement. And there can be some things done to ease that situation, without compromising overall objectives. In my case it was agreeing to do some limited [both in time and dose] hormonal mono-therapy. Some form of hormonal ablation is often [well at least sometimes] done prior to conventional, localized therapy. This is to reduce the tumor burden, or to shrink it, in an attempt to make the localized therapy more successful and lasting. Same can be said about the application of combination alternatives as a primary means of therapy. Reduce the tumor burden beforehand, to hopefully improve the results. Three one month, consecutive shots of 1/2 doses of Lupron won't hurt anyone, and it will reduce the tumor burden and run the PSA way down. Its not hard getting the latter down .... trick is to KEEP it down. And it will go right back up again, unless you do something to hold it down.

That something could be to have your prostate gland killed by radical surgery [and thus removal to the biological waste bin], or killed in place by radiation, or perhaps freezing it to death. Or it could be castra- tion, or intermittent hormonal ablation therapy [that is, surgical castration vs. chemical castration]. Or it could be alternatives. Or it could be any combination of all of the above. Each may have negative side effects, and its up to you to determine what those are, or can be. Through personal research, not by listening to some doctor or therapist. A surgeon will want to pull it, a radiologist will want to zap it, a cryoist will want to freeze it .... that should come as no surprise. And each of these people will have a million and one reasons why you should do it his way. And, you want to hear bad things about any of these? Ask a doctor who does one of the other procedures! Ask a good, dedicated radical surgeon what he thinks about radiation, or vice versa. A good way to learn the bad things about any localized, conventional therapy is to ask a specialist who does something else! You may get more truth that way, than asking a specialist to tell you what's good about his own method! And you don't even have to go between specialists. Ask a radical surgeon who uses the retropubic method what he thinks about the perineal method, or vice-versa! The latter is an older procedure, but does that make it worse? Is everything new always automatically better than everything old?

These are a few of the questions YOU have to answer, and nobody else can do it for you. YOU are the one the method may fail on, YOU are the one who may have to wear a diaper for the rest of your left [or operate a clamp or valve, or whatever]. YOU are the one who may have radiation damage to the bowel. YOU are the one who may never see another natural erection. YOU are the one who could end up [as rare as it may be] urinating through you anus, and defecating through your penis! So YOU better learn about these matters, YOU better call all the shots, and YOU better take control of your own program!!

GOOD LUCK, TAKE YOUR TIME, MAKE YOUR OWN DECISION,........... AND MORE GOOD LUCK!!

Richard A. Barca ...... a concerned patient-survivor,
& Patient Education Advocate