creating my own treatment program

[WTL]

Just diagnosed Feb. 15; Gleason 8, PSA 8.8, stage T1c, clean bone scan, MRI indicates contained in prostate, no seminal vesicle/lymph node involvement. I'm 61, ridiculously healthy and athletic, sexually active w/ my wife and want to stay that way. My problem: every treatment program has the same goal: kill the cancer by killing the prostate. Even proton beam with so much talk about targeting only the tumors and sparing healthy tissue - they don't mean healthy prostate tissue. i like my prostate. I don't want dry orgasms. I don't care what anyone says - I sometimes have dry orgasms thanks to Flomax, and they suck - nowhere near the same sensation. There has to be ejaculate pulsing to the outside for that feeling to occur. And that feeling originates in the prostate, not the penis. I have spectacular orgasms - even my wife says so.

Second problem: It's all a **** shoot. Every practitioner of every treatment modality says his is the best and the rest have problems. At least they're honest and concede that they don't know if they can get all the cancer anyway - as recurrence proves too often. The way I see it: if I go for surgery, radiation, HiFu, cryo, that's it, the prostate is dead and/or gone. There's a good chance for impotence and incontinence. And there's a good chance the cancer will recur. Then I'll be treated to eliminate my testosterone, which as far as I'm concerned finishes me off as a male. I didn't get married to have a platonic relationship with my wife. I'm the happiest I've ever been, actually it's the first time in my life I've been happy, we were both alone for decades and then found each other, just learning how to love...and now this.

Third problem: I don't have insurance, and I don't qualify for Medicare. I have to pay cash for everything. That's a real problem - means a loan I can't afford the payments on, or taking money out of retirement savings, and there isn't that much of it. If treatment should fail, and I die, my wife would be left destitute. And all these treatments cost tens of thousands of dollars - the one I was considering, proton beam, is the most expensive, and because Loma Linda isn't taking new patients right now, I'd have to fly across the country and live there for two months. The money problem is as stressful and depressing as the cancer, causes half my many sleep-deprived nights. (My solution: extend Medicare to everybody, i.e., universal single-payer. But that's not gonna happen.)

I haven't had a chance yet to interview different doctors and their treatment programs. I will, but I'm already biased against any of them for the above reasons. And again, each one will tell me his way is the best. I will be forced to decide for myself what's best, and here's what I'm coming up with:

My cancer is probably contained, and it would be a good idea to slow or stop the cancer growth as much and as quickly as I can so it doesn't get out. Even if it already has, slowing or stopping it is a good idea. So I'm taking everything I can think of to do that: dutasteride, selenium, vitamin D, ECGC, lycopene, genistein, curcumin, some others. I'm staying away from things like Lupron (chemical castration - I hate that word!) for now, but I may even consider taking that a month on, a month off. Such drugs are being used more and more now in early stages for precisely the reasons I stated - actually, I came up with the idea on my own, and when I went to research it I found some support for it.

I'd do all this and keep close track of my PSA, free PSA, testosterone, DHT, estradiol, BUN, creatinine, vitamin D, calcium, whatever else seems related. I'd be taking Cialis, not just for sex but for nocturnal erections, because a major risk of this kind of therapy - literally tipping the scale towards the female - is penis/testical shrinkage, let alone impotence. If my blood counts become normal, I could ease up and try to tilt back towards the male. This whole thing - cutting down on my male hormone - freaks me out, but it is reversible to a large extent, while destroying my prostate and possibly my continence and potency is not reversible.

I may be 61, but I surf, run, lift, do heavy work in the garden, jog up and down long flights of stairs, write, and have a terrific love life. I just feel far too vital.  If the MRI had shown the cancer was out of the prostate and running amok, I would probably take more aggressive action like the doctors recommend. But I'm not at all emotionally ready to do that now, and given my status, I want to try something different. And since no matter what treatment is offered, all have major risks, including recurrence, and I'm the one who has to make the decision because there are no absolutes in this game - well, who's to say my plan is any worse than any other?

I'd appreciate some feedback here because obviously I'm stressed out (but still joking around and making my wife laugh) and operating in a near-vacuum. I don't pretend at all that I know what I'm doing, but the doctors, with all their uncertainty, can't say that they have all the answers either. I happen to think that a great many doctors are geniuses and amazingly talented and skilled people, and still...they just don't know. They don't KNOW that their way will work, and they don't KNOW that my way won't.

Thanks for the opportunity to vent.

[gymdandee]

Destroy prostate cancer with vitamin E


Scientists from Australia found that vitamin E might play a major role hampering the development and re-growth of prostate cancer tumors. For the study, Dr. Patrick Ling and a team of researchers injected mice with prostate cancer cells. Then, they divided the mice into two groups. They fed one group of mice water fortified with a form of vitamin E called gamma-tocotrienol or y-T3. The other group of mice drank regular water.

Researchers found that 70 percent of the vitamin E mice never went on to develop prostate cancer tumors, despite being injected with malignant cells. And, yes, the remaining 30 percent did develop prostate cancer. But following surgery, their tumors were far less likely to re-grow or metastasize. On the other hand, tumors formed in 100 percent of the control group of mice not given vitamin E.

Those incredible results, though tested on mice, show just how powerful vitamin E really is.

According to Dr. Ling, "Currently there is no effective treatment for metastatic prostate cancer, because it grows back after conventional therapies in more than 70 percent of cases. But with [vitamin E3] researchers have found a better way to treat prostate cancer, which has the potential to inhibit recurrence of the disease."

Dr. Ling went on to say that chemo, radiation, and hormone therapy fail to cure prostate cancer because they don't kill the cancer stem cell responsible for the re-growth of tumors. He also believes that y-T3 will also prove effective in suppressing other types of cancer, including breast, colon, liver and stomach.

Dr. Ling and his team do have a clinical trial with men in the works. In the meantime, keep up the daily regimen of 400 IU of vitamin E. Choose only 100 percent natural vitamin E that contains mixed tocopherols. This will provide provide balanced antioxidant protection. At the very least, the bottle should say it contains d-alpha or D- alpha. Skip any bottle that says it contains Dl-alpha (note the different "Dl" prefix). This means it's a synthetic, cheap imitation of vitamin E. Plus, it probably won't contain y-T3.

[keyzersoce]

In his original post, he says he doesn't want dry orgasms, which would result from any form of prostate removal.

[kazzy101]

What about nerve sparing surgery.

[HeinrikMD]

Hi,

I think the main reason you were recommended curative therapy is your age - in which a goal of 10 year survival was the target. It is apparent however (and you are not alone in this), that you prefer to maintain your quality of life. Hence, your goals and the doctors goals are different.  If this is the case, then the goal is no longer the 10 year survival, and you are likely making a well-informed decision.

Following this logic though, even without surgery or radiation, you also have some risk factors for erectile dysfunction. Perhaps you need to discuss the odds of your sex life worsening with your doctor even without curative treatment - if the odds are equivalent with surgery or radiation, you may need to reconsider your position.

[keyzersoce]

My dad used to say: don't ask a barber if you need a haircut because of course, he'll say you do. Each specialist will tell you their way is the best. I think the best course is to gather all the facts and consult with a medical oncologist. They don't have a dog in the hunt and can look over all the info and give you their opinion. Of course, it will still be up to you.

All doctors are trained in evidence-based medicine and it is difficult to get them to see you as an individual. However, I believe you are doing the right thing by taking such an proactive stance on your treatment; too many peoplke just blindly do what their doctors tell them. Hopefully, you will shake the doctors out of their lethargy.

Best of luck.