just diagnosed

dinkjackson said:

My husband was diagnosed with prostate cancer a few days before thanksgiving. A biospsy was done on November 18, 2009. 10 of 12 came back positive. Gleason score 4+3=7; PSA 10. We are scheduled for a planning scan in a few weeks. My husband also has Parkinson's. He is 58 years old. We were told by the radiation oncologist that he will have to go through 8 weeks of radiation. Surgery was not an option. CT and Bone Scan negative. I would appreciate any advice you may have.

-------------------------------------------------------------------

I had a biopsy in December 2008. A LOT of cores came back positive. Gleason score 4+5=9; PSA 4.2. Nothing showed on digital exam. CT & bone scans were negative. I read Dr. Pat Walsh's most recent edition of his book on Prostate Cancer (PCA), and without hesitation, I chose surgery for my treatment. I called Johns Hopkins, only to be told they did NOT "see" or operate on Gleason 9 patients. Then that night, they sent me a mass e-mail about buying some $35 book on SURVIVING PROSTATE CANCER. I wrote back using every curse word I could muster, and by the next night, I had about 10 emails from administrators at Hopkins, apologizing. A mistake had been made (no it hadn't, they don't want Gleason 9 patients screwing up their research stats--they're cherry-picking). Anyway, I was not able to get the services of one of their "stars," but I got a good Hopkins surgeon, Dr. David Chan (who is now in NYC), who was then director of the Hopkins Outpatient Clinic. He obviously did a good operation. He called me on a Saturday night at 8:00 as my wife and I watched television, to tell me, "You made an A+ for the surgery!" He was obviously excited by his news, and so was I. Instead of a Gleason 9 (which had been confirmed by Hopkins' pathology lab--they will do that for anybody, if slides are sent to them.....my insurance covered that). But NOW, there pathology lab had not looked at 12 biopsy slivers, but had dissected by entire prostate gland, as well as the perimeter of the gland, a couple dozen lymph nodes, my seminal vesicles, and God knows what else they took out while they were messing around with all my plumbing. But, the fairly dire "Gleason 9" was DOWNGRADED (often the actual post-op pathology report goes the other way, UP), but my cancer, though it is aggressive (a 4+3 is still a threatening cancer), had not penetrated the perimeter of my prostate or spread outside the organ. Understand this: that does not mean I have been 'cured.' PCa can show up 3 years later, 6 years later, 10 years later, even beyond 15 years later. It's not really "recurring," it's just been "persisting." It does *very usually* take prostate cancer a LONG time to grow, if it has metastasized to the skeleton or to organs, and even after METS show up, they can give you about three more good years, with meds, and maybe a couple of years in decline. I am not trying to be over-optimistic here. This is NOT a "chronic" disease that physicians can treat with medications till you die of some other Old-Timers' disease. But I encourage you, your husband, and all who are reading this to go read "Prostate Cancer-Specific Mortality After Radical Prostatectomy for Patients Treated in the Prostrate-Specific Antigen Era," by Andrew J. Stephenson, Michael Kattan et al. (including Eric Klein of the Cleveland Clinic and Peter T. Scardino, etc.), published September 10, 2009, Volume 27, Number 26 of the JOURNAL OF CLINICAL ONCOLOGY, pp. 4300-4305.
Let me quote just a few of the more sanguine statements made here: "A multi-institutional cohort of 12,677 patients treated with radical prostatectomy between 1987 and 2005 was analyzed for the risk of PCSM [prostate-specific morality]. . . . Fifteen-year PCSM and all-cause mortality were 12% and 38%, respectively. . . . Few patients will die from prostate cancer within 15 years of radical prostatectomy, despite the presence of adverse clinical features. This favorable prognosis may be related to the effectiveness of radical prostatectomy (with or without secondary therapy) or the low lethality of screen-detected cancers [i.e., detected on PSA testing]." This was a LARGE cohort of patients at Cleveland Clinic, Memorial Sloan-Kettering in NYC, and the University of Michigan [all reputable sites] and conducted by researchers/physicians well-known in the PCa literature and community. It is the most sanguine (promising, positive) medical article I've read. Of course there are exceptions--more than 30,000 American men die each year of PCa, but the odds are none the less good for those newly diagnosed. (And new treatments are in the pipeline, as always.) Also, many of those 30,000 men who die annually may have been living with a PCa diagnosis, and may have been out playing golf etc. with Tiger Woods for years.
As for your husband, I am sorry about the diagnosis and the Parkinson's. He may well have adverse clinical features that rule out surgery for him (be sure to see a prostate specialist surgeon before going with the radiologist's opinion alone). I will always regret the damage that surgery did to my plumbing (it's getting better, after almost two years!), but I will NEVER regret having surgery. It just made sense to me--how else would they know what's going on INSIDE me, if they don't have the prostate gland to dissect? I lucked out, I hope, in having my Gleason 9 downgraded to a Gleason 7 (4+3), and at least I have had SOME peace of mind, knowing it's a 7 instead of a 9 (though I know Gleason 8 and 9 patients who've been going to support groups here locally for a decade or more).
Next, take your husband to what they call a "center of excellence." I know M.D. Anderson in Texas is one of those. Johns Hopkins Hospital in Baltimore, Memorial Sloan-Kettering in NYC, the Cleveland Clinic, and lots more exist. If your husband does manage to get surgery as an option, choose a surgeon who has done at least 1,000 such surgeries---ASK, it's your husband's life, you aren't buying a car. Be direct. Take a tape recorder or another person who can take notes, with you, to each appointment. Read the literature on the Internet (some of it is excellent). Visit sites such as Yananow and this one, to read what other patients and their loved ones are asking, what others are telling them. If he decides to go the route suggested by the radiologist (and, indeed, perhaps that's the best route, for your husband), then read up on radiation. The survival numbers there are good, too.
Myself, I'm battling serious hypertension and diabetes as well as PCa (I'm 64), but I'm determined to do all I can, in terms of nutrition and some exercise, to help myself. And I may yet go golfing with Tiger. (grin)
BEST WISHES to you--there are lots of people out here to help you. And do take a look at the Yananow site, run very well by a patient, Terry Herbert.

D. Jackson

WHW said:

A Few More Thougths
DJ's post was very informative and filled with extremely valuable information. I know from experience, I was diagnosed in July of 09 and have been involved in PCa forums and research daily since then. I am a surgery guy.

I would just like to add a couple of other things.

In addition to the sites that DJ mentioned, try healingwell.com. This site has an extremely knowledgeable and active Prostate Cancer forum. I doubt there is a question that you can think of that has not been addressed or is unaddressable by the folks there.

Second, is your husband by chance a military veteran that served time in Vietnam. I am 61 and spent time there in the Navy. The reason for my asking is that Prostate Cancer and recently added, Parkinson's, are considered presumptive caused by agent orange use in Vietnam. Prostate Cancer is considered 100% disability (about $3000 per month)with the Va and is easily established with connection to Vietnam.

I recently filed for disability because of Prostate Cancer and am now helping my father-in-law with his filing because of Advanced Parkinson's.

Good luck to you in your quest for answers and bless you and your husband,

Sonny