Mar 11, 2010 - 9:49 pm
I've been lurking here for awhile and thought it would be useful to post info on my situation. FWIW, I'm not looking for condolences or advice. I'm just posting this in case it will be of use or value to anyone who reads it.
I was diagnosed w/prostate cancer following a biopsy on 1/28/10. I'm 59 and the diagnostic stats are: Stage T1c, 1 core out of 10 positive (only 0.6mm involved), PSA 4.5 (1/7/10),PSA 3.4 (3/21/08) and PSA 2.9 (10/12/06), Gleason 3-3 and Prostate Volumne 42cc.
I was not traumatized by the diagnosis. It concerned me, of course, but after I read the literature (and I'm still reading), I'm comfortable with the situation. I don't like it, but I'm not going to die tomorrow, there are "cures" for the disease and I have time to make choices about what to do next.
So, I've already decided to engage in "active surveillance" and am determined NOT to let the "fear" of the unknown effects or course of the cancer affect my quality of life. I am going to continue living my life as I always do -- enjoying it to the fullest -- and will make whatever accommodations I HAVE to make and take whatever actions I HAVE to take in order to address the cancer when the time comes.
An important factor my decision to opt for "active surveillance" is the fact that I am still sexually active and have no interest at this time in subjecting myself to the "risk" of becoming impotent (even if temporary) for up to 2 years and incontinent (having to wear a diaper for up to a year or more) or risk a shortened penis following robotic surgery, unless it is ABSOLUTELY necessary (as in, my life depends on doing it NOW) to do so. It's not absolutely necessary yet and may never be.
Actually, given what I've read so far, I already know that I'd opt for brachytherapy over surgery because of it's less damaging "side" effects and, if it is necessary, I will go that route, as long as I'm still eligible to do so when the time comes. Both are covered under by my HMO - Kaiser Permanente in CA -- and will cost me nothing. Between surgery and EBRT, the decision isn't as clear given the potentially more damaging (than brachytherapy) side effects of EBRT.
However, I've also read that proton beam therapy is even better than brachytherapy in limiting the risk of impotence and incontinence, but that is not covered by Kaiser and I would have to pay for the treatment out of pocket. I have the money to do that, if need be, and will pay for it out of pocket,if I decide that that is the way to go. Two additional advantages of "active surveillance" will be the possibility of the reduction in the cost of proton therapy and the possibility of the discovery of alternative treatments in that time.
In the meantime, what to do?
Well, I've read the literature and recommendations about diet and exercise. There's no "proof" that improving your diet or exercising more will "cure" or "abate" any cancer, but it certainly can't hurt. So, I'm going to eat as well as I can. I eat pretty well and exercise already, but will try to exercise more and reduce even more my intake of red meat, fat, sugar and fat and increase my intake of fish, soy products, fruit and veggies.
A urologist also recommended that I eliminate alcohol & caffeine from my diet because they are diuretics and because alcohol can be damaging to the bladder and to "drink less" generally (which I thought was an impractical suggestion). I usually drink a couple of cans of Bud and Coke a day and I can easily stop drinking them. I also don't drink coffee or tea very much and can eliminate them, but there's no way that I'm going to give up fine wines, champagne, single malt scotch or martinis (all of which I drink in moderation) Giving up Buds, Cokes, coffee and tea will have to be enough -- at least until someone proves to me that drinking ANY alcohol will kill me (or exacerbate my cancer) if I don't stop immediately. I don't think anyone will ever be able to do that and I can live with whatever risk my remaining consumption of alcohol presents for the future.
Beyond diet, after reading about various alternative treatment approaches, I've decided to take low dose naltrexone (LDN) and conduct my on "clinical trial" to see if it is of any benefit in reducing my PSA and suppressing the cancer over time. LDN supposedly strengthens the immune system and this has reportedly contributed to treatment of a variety of diseases, including cancer.
Of course, there is no "proof" that LDN helps at all in treating any disease and all of the "evidence" is merely anecdotal. However, there is enough anecdotal evidence out there to suggest that it "may" help and, since it is not costly and has no "major" side effects, I'm willing to give it a try. My urologist at Kaiser is unwilling to prescribe it for me, which is no surprise, but I found a naturopathic physician in Seattle who will. I'm going to use my PSA test in April as a base line and will then begin a regular regimen of LDN and will measure my PSA over time to see if has any effect on the upward trend in that number for me. I'm hoping for a stabilization (and maybe a small reduction) in the PSA level and no increase in growth of the cancer as evidence by the follow-up biopsy due in Feb 2011. I will post follow-up reports here.
I haven't seen any other threads on LDN on this forum. So, if anyone else is taking LDN or has taken it in the past, please share your experiences here. Thanks!