Medical Forum / Diseases and Disorders / Prostate Cancer / July 2004
A Newbie squeaks
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Gareth Jefferson - 27 Jul 2004 20:56 GMT I'm not new to posting to Usenet newsgroups, only it's usually been something or other .photoshop, or to do with Japanese translation issues, or anthropology, you know, all the usual stuff that everyone is interested in.
This is, however, the first time for me to post to this group.
basics: 59yo, Gleeeaaason!!! of 7, Tumor state unknown. Mental state very confused.
Curiously, after reading of "dry orgasms" here after RP, it was dry orgasms that first took me to my GP for a check up. You know, with orgasms, you don't generally get to see what comes out, if anything, but there are those times when sex is too good to share, and then you do get to see the results -- either it hits the wall behind the bed, or failing that, it at least wets your tummy. In my case I felt the orgasm, and that was it. So I went to my GP, a nice man, tho perhaps a little whacky, macrobiotic, reincarnation, etc etc.
He had my PSA tested (result 5.5) then referred me to the local urology department, where I scored a 4 out of 8 biopsies. That's all I know at this point. I know GL7 is not good but could be worse. I have no idea what the prognosis is, but guess it's in the 2-to-five year range.
The booklet I was given talks about people perhaps opting not to have surgery because of the "quality of life" implications, whatever that means beyond impotence and incontinence.
Has anyone here opted to have no intervention? And how truncated would one's life expectancy be if one opted for that route?
I'm not interested in "I knew a guy who was given only six months and forty three years later he was still begetting like there was no tomorrow and his great-great grandchildren turned up in droves for his 140th birthday" stories. I only want realistic stuff.
Regards to all,
Gareth.
Larry - 27 Jul 2004 21:15 GMT Whoaaa . . .
It's WAY too soon for you to guess anything, young man! <g>
2 - 5 years? Try 30!
Let me assume you still have a bone scan and a test of the lymph nodes to find out how bad off you really are. You really don't know enough to jump to any conclusions at this point.
Assuming no worst case scenarios, you can attack this like you have a reasonable expectation of a cure (whatever that means).
Keep us posted! Can't wait to see how this plays out. Bottom line is, you have every reason to expect good results rather than the other way around.
Larry
> I'm not new to posting to Usenet newsgroups, only it's usually been > something or other .photoshop, or to do with Japanese translation issues, or [quoted text clipped - 34 lines] > > Gareth. Claude - 27 Jul 2004 21:37 GMT > I'm not new to posting to Usenet newsgroups, only it's usually been > something or other .photoshop, or to do with Japanese translation issues, or [quoted text clipped - 30 lines] > great-great grandchildren turned up in droves for his 140th birthday" > stories. I only want realistic stuff. Hi Gareth. Your numbers were very similar to mine in 2002. Age 64; PSA in the 5's; Gleason 3+3 (but after RP upgraded to 3+4). I had my RP, with one nerve spared, on 5/1/02. My margins were not clear. I regained continency within 48 hours and erectile ability (better with 25 mg of Viagara) 6 months post. My PSA is still undetectable. I'm planning on living a long life. If it's 2 to 5, it won't be because of prostate cancer. Besides, in 5 years or so I would expect some kind of cure for prostate cancer. Don't give in to this disease. You are too young and your numbers are too "good".
Don Coon - 27 Jul 2004 22:06 GMT Hi Gareth,
Five weeks ago, my "basics" were similar to yours: 62, Gleason 3+4 = 7, PSA 5.94. The DRE detected no external tumor.
I opted for surgery as my best bet to get rid of the cancer. After all according to published tables, I have over 20 years life-expectancy remaining. My research indicated the "Watchful Waiting" route was not for me.
My surgery took place on March 29. The surgery itsself was no more than a speed bump. One night in the hospital and 8 days with a catheter. The post-op pathology upgraded the Gleason to 4+3=7 but everything else came back negative -- i.e. Good news. Indications are the cancer was contained within the prostate. My first PSA 7 weeks after surgery was 0.03 -- essentially non-detectable.
Admittedly, so called "quality of life" implications have to be of concern. Incontinence is certainly a pain and I haven't licked it yet. But the number of pads per day continue to decline and I'm confident it will be a distant memory sometime in the near future. How near I can't say.
Conquering impotence is really the bigger challenge --- after getting rid of the cancer. I've yet to see any improvement but then everything said it could be a two year or longer battle. But remeber one things: It's hard to have sex when you're six feet under.
My advise to you is, after you get over the shock, to face this challenge head on. Do all the rational research you can before you rush to any conclusions.
Best of Luck!
Don
> I'm not new to posting to Usenet newsgroups, only it's usually been > something or other .photoshop, or to do with Japanese translation issues, or [quoted text clipped - 34 lines] > > Gareth. Steve Kramer - 27 Jul 2004 23:09 GMT ????????????????
Second, realize this is not a death sentence.
You should have been given, and should be able to get, three important numbers; your PSA, Gleason, and Stage (e.g., T1a, T2b, T2c...) With all this information, you can begin to get an idea of what you are facing.
But, you can get a pretty good idea from what you have. First, You're 59. That's an excellent time to get Prostate Cancer if you like a lot of options. At 46, I was too young to consider anything but surgery. At 79, most are too old to consider surgery. So, you're right there in the cat-bird seat.
You PSA is just a little higher than the norm for a 59-year-old. That's good. More than half of all the people here (and still here) had a Gleason of 7 or higher. Assuming you are a 3+4, higher Gleasons include 4+3, 4+4, 3+5, 5+3, 4+5, 5+4 and 5+5. Of those who didn't make it (in the 3? years I've been here), two were 9s and the other two were unknown to me.
Your state depends on where they found cancer and whether they could feel it. Based on your description, I'd guess T2c. I'm a G7, T2c with three times the PSA and I'm still here, but you said you don't want to hear that.
You have a really good chance of your cancer being contained in the prostate. If so, you can pop that baby out and never have cancer again. Or, some believe you have just as good a chance with radiation, especially in the form of seeds and external beam radiation. Some believe a combination of hormone treatment followed up with radiation is as good. And then there are those who freeze the walnut sized gland until it's dead. You really have to make this decision yourself and you need to invest some time in researching each method.
You'll find all have a likelihood of some disagreeable side effects. Most have temporary impotence and incontinence. Some man experience permanent impotence and/or incontinence. But, most dead men do as well. So, assuming your first priority is life, welcome to our club.
 Signature Prostate Cancer Survivor (so far), not a doctor PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Erection 05/12/2003 @ 48 HTbegins 07/21/2003 @ 48 PSA .07 .05 Lupron 7/03, 8/03, 12/03, 4/04 non illegitimi carborundum
> I'm not new to posting to Usenet newsgroups, only it's usually been > something or other .photoshop, or to do with Japanese translation issues, or [quoted text clipped - 34 lines] > > Gareth. Steve Kramer - 27 Jul 2004 23:29 GMT Man! It's like I missed whole parts of your post!
Reference 2-5 years? If you did nothing at all, you'd live that long. If you fix it now, you could live as long as you were destined.
Reference not doing anything, we only had one, Martin Howard. Martin was diagnosed in October 2002. He refused to use any medication first tested on animals. He died during December 2003. Admittedly, his PSA was 145 when diagnosed, but he could have greatly lengthened his life if it were not for his convictions.
 Signature Prostate Cancer Survivor (so far), not a doctor PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Erection 05/12/2003 @ 48 HTbegins 07/21/2003 @ 48 PSA .07 .05 Lupron 7/03, 8/03, 12/03, 4/04 non illegitimi carborundum
> I'm not new to posting to Usenet newsgroups, only it's usually been > something or other .photoshop, or to do with Japanese translation issues, or [quoted text clipped - 34 lines] > > Gareth. Dave Perry - 27 Jul 2004 23:56 GMT You're too young to opt for no intervention and I have no idea where you got the 2 to 5 year range you cited. I was a Gleason 6 at age 60 and with a PSA of 4.9 the tables indicated there was a 20% chance of my being dead from PCa in 15 years. The 80% not being dead looked pretty good to me until I realized that most of the "survivors" at 15 years had advanced cancer and were getting treated for it one way or another and the death rate would increase dramatically beyond the 15 year mark. I suspected if I had no treatment there was a good chance I would not outlive my enemies so I opted for surgery. My "quality of life" is probably a little worse than average because I'm still using a pad to catch drips and still no erections though quite good orgasms (see my other post). Still, I get along just fine and would rate my quality of life as very satisfactory. Not perfect but it wasn't pre-op either. So, unless there are other health concerns, you should opt for treatment. Also, find out if your Gleason 7 is a 3+4 or a 4+3. The outcome for the 3+4 is more like a 6, the outcome for a 4+3 is more like an 8. No matter, you may not be able to "hit the wall behind the bed" again but you will be glad you opted for treatment now for a probable cure rather than treatment later when there is no cure. Dave Perry
> I'm not new to posting to Usenet newsgroups, only it's usually been > something or other .photoshop, or to do with Japanese translation issues, or [quoted text clipped - 34 lines] > > Gareth. Alan Meyer - 28 Jul 2004 00:03 GMT Gareth,
My advice is to seek treatment - radiation or surgery are the two most common options, both proven effective in the majority of cases.
I have read that the average man lives above 10 years after first developing prostate cancer. How many of those you've already lived is unknown. However you aren't necessarily average.
Your Gleason score of 7 puts you at "intermediate risk". That means, as I understand it, that you have a decent chance of a cure with treatment, but a poor chance of survival without it. IMHO, only the "low" risk men, or men who are already near the end of life, should consider "watchful waiting". Even if you could live 10 years without treatment - which is far from guaranteed, the last years would be painful, the death would be very nasty, and at age 69, there is a good chance you could have lived longer if you didn't have cancer.
As for quality of life issues - it is possible that with either surgery or radiation you could become impotent, either for a short or a long time. If you get no treatment, you will eventually be in too much pain to consider sex, and of course dead men get no sex at all.
Whether you become impotent or not depends in part on the skill of your surgeon or radiologist, on what the surgeon finds when he opens you up (if you opt for surgery) and on the luck of the draw. However if you do become impotent, odds are good that you can still experience orgasms (just not stiff ones), and even regain potency with the assistance of drugs or mechanical aids (e.g., a vacuum pump.) Personally, I have come out of radiation at age 58 with potency reasonably intact (though Viagra helps). However even if all sex were gone, nothing worked at all, and sex was nothing but a memory, I would still choose long life over a short life followed by death by cancer. Sex is something I really enjoy, but there's an awful lot of other parts of life I enjoy too and don't want to part with.
I recommend:
1. Educate yourself. Get books at the library (Patrick Walsh's book is very good, but there other good ones too.) Also look at the websites. http://www.phoenix5.org/menumain.html is a good place to start.
2. Get help from specialists. Have your doctor refer you to a urologist/surgeon, and to a radiation oncologist. If possible find ones that specialize in prostate cancer since there are urologists that specialize in other diseases of the urinary tract and radiation oncologists that specialize in other types of cancers.
3. Ask questions here or wherever. Talk to people who have had the treatments you are considering.
4. Make a decision about treatment and go for it.
Best of luck.
Alan
Al - 28 Jul 2004 00:38 GMT *I'm not new to posting to Usenet newsgroups, only it's usually been *something or other .photoshop, or to do with Japanese translation issues, or *anthropology, you know, all the usual stuff that everyone is interested in. * *This is, however, the first time for me to post to this group. * *basics: 59yo, Gleeeaaason!!! of 7, Tumor state unknown. Mental state very *confused. <snip>
I'm 43, had RRP last Feb, diagnosed PCa at age 41. Gleason was 3+3, PSA was 7, I think, opted for RRP since I wanted the crud -gone-! I didn't have a wife or girlfriend so went through this alone. I had low back surgery in 2000 so this wasn't something new to me. I can't expand on what everyone else already said. I'd like to know, however, where you get the 2-5 yrs.? You're way too young to kick off from PCa.
Al Please be quiet if replying via email, flames will be deleted promptly. I won't even read the whole message...
Leonard Evens - 28 Jul 2004 00:41 GMT > I'm not new to posting to Usenet newsgroups, only it's usually been > something or other .photoshop, or to do with Japanese translation issues, or [quoted text clipped - 18 lines] > point. I know GL7 is not good but could be worse. I have no idea what the > prognosis is, but guess it's in the 2-to-five year range. Where in the world did you get that idea. In cases like yours, essentially all men are alive at 5 years after diagnosis, even without treatment. In addition, we appropriate treatment you have a good chance of a cure, and even if that doesn't work out, you have considerably longer than 5 years ahead of you.
To add to the list of others with similar cases, I was diagnosed at age 67 with a t1c cancer, PSA 4.5, and Gleason 7=3+4. I chose radical prostatectomy. Today 4 years after surgery I show no evidence of cancer, I am continent, and while not the same as before surgery, I am not impotent. My wife and I still enjoy an active sex life.
> The booklet I was given talks about people perhaps opting not to have > surgery because of the "quality of life" implications, whatever that means [quoted text clipped - 11 lines] > > Gareth. Beverley - 28 Jul 2004 02:14 GMT Hi Gareth, I'm one of the wives out here.
Confused? That's all????
We can help with confusion. There are several good web sites, Phoenix is one of the best. Cooleyville will give you the radiation perspective. You are way too young to do nothing!!! Do nothing and depending on the aggressiveness of you cancer and you'll be dead in 1-10 years. That's a guarantee and it is one of the most horrible painful deaths from cancer. Well, actually the death part is easy it's the agony you'll be in for the six months before you die and the constant pain for who knows how long. The good news is this is a very "curable" cancer (no one uses the word cure when it comes to cancer) if caught in time. That Gleason 7 probably knocked you out for brachytherapy (radioactive seeds implanted) but there are several other options when it comes to radiation.
Surgery is a very good option and many guys opt for surgery because they want the cancer out of their body as soon as possible. But radiation has come a long way in the last 10 years and is considered to be just as good and sometimes even better depending on individual circumstances. (Again, listen to your doctors!! YMMV)
Start reading! The more you know the better off you will be. One you will be able to ask educated questions and understand the answers from both your urologist and your radiation oncologist. You need to make appointments with both!!! Listen carefully and then choose the method with which you feel the most comfortable.
http://www.phoenix5.org http://www.cooleyville.com/
You have every reason to believe you will be here in another 25 years and still be prostate cancer free if you treat it now!! If you were 92 and had Alzheimer's they'll probably would tell you to do nothing and even then they are apt to treat it with hormone therapy. (My sister's 92 yo FIL is being treated with hormone therapy. And he still gets all happy when he has a pretty nurse in the nursing home but I'm not sure he remembers what is supposed to happen. LOL ) So treating the cancer should be foremost in your mind.
I think we have just about every type of treatment represented by someone here. So no matter which you choose someone can walk you through the procedure. The guys who have had their prostate removed (RP's) can help you with that. There are several different types of procedures from RRP, LRP, robotic (very high tech!) and the standard RP which is to slice you open and dig down in there and get that cancer infected sucker out of there!! There is nerve sparing and non-nerve sparing. If the nerves are spared you have a greater chance of regaining erections sooner. On the brachy/radiation fronts there are so many options. Brachytherapy, brachy combined with external beam radiation (EBRT) or without. EBRT alone, EBRT with temporary seeds. IMRT which is a fancy type of radiation, proton beam which is another fancy radiation technique on a very expensive piece of equipment. And a third type of treatment is cryosurgery which freezes the prostate.
My husband had brachytherapy after receiving 5 weeks of EBRT using an IMRT machine. He's younger than you, had a Gleason 6 and a lower PSA. He was the perfect candidate for brachytherapy. QOL was an issue to him and therefore he did not want a RP. He did not want to take that much time off from work nor did he want to chance having to wear pads/diapers to work. Sexual dysfunction was something we discussed and decided that if ED occurred as a result of treatment we were both willing to live without, the operative word being "live". Every man is different.
My husband fell into the 4% post-brachytherapy/EBRT who do have urinary/ED problems. His problem was starting the stream not incontinence . He has had some ED problems. But we have coped and used Viagra, Levitra and has had the most success with Cialis while using a pump. (I promise it is no worse than dealing with birth control!) And I will not so modestly say that the difference is he has had a supportive, loving partner who is willing to actively help him achieve an erection. (And since we have been using the pump things are working better and he's even achieving some impressive "morning wood" on his own.)
QOL issues are minimal. He's missed almost no time from work. No one would know he's a cancer survivor unless we tell them. Virtually no one knew he was undergoing treatment, at the time. I expect him to be around for many years. He's got 2 beautiful granddaughters and I expect him to be there for them. I also plan to have him sitting the rocking chair on the front porch watching the world go by as we grow very old together!
Anthropology?? We've got to talk! What is your niche?
Sorry you had to join this club but it's a great group of folks.
Oh, and BTW, if you are a Viet Nam veteran you need to apply to your VA. If you need help on that contact me. Bev
> I'm not new to posting to Usenet newsgroups, only it's usually been > something or other .photoshop, or to do with Japanese translation issues, or [quoted text clipped - 34 lines] > > Gareth. jk - 28 Jul 2004 04:56 GMT I've never heard of lack of semen production, being an indicator of PCa? But I'm not a doc. 2 years post surgery here, and all is fine in the quality of life department. Don't give up so quick.
 Signature JK Sinrod Sinrod Stained Glass Studios www.sinrodstudios.com Coney Island Memories www.sinrodstudios.com/coneymemories
Me - 28 Jul 2004 06:03 GMT >59yo, Gleeeaaason!!! of 7, Tumor state unknown. Mental state very > confused. > > The booklet I was given talks about people perhaps opting not to have > surgery because of the "quality of life" implications, whatever that means > beyond impotence and incontinence. "Watchful waiting" -- opting not to have treatment immediately and waiting to see how fast things get worse -- seems to me to be an option for an older man -- I AM NOT A DOC; THIS IS JUST MY OPINION. Many older men live with PC and outlive it. But a guy in his 50s (in my opinion) ought to think seriously about active treatment. First if nothing is done, it's going to have time to grow/advance -- (this can be less of an issue for someone in his, say, 70s-80s). And recent research indicates that PC that is curable in early stages can become very aggressive (and more difficult to cure) if it advances to more advanced stage. Gleason 7 is not terribly bad but it's getting close to being bad; you don't know the tumor stage but should find out -- if it's T1 or T2 it's most likely curable NOW; if it's left to grow for many years it could reach a point where a single treatment (surgery/radiation) might not be enough to remove it all/provide the cure. TALK TO YOUR UROLOGIST/ONCOLOGIST ABOUT THIS! Get a more informed perspective than that provided by a booklet. Good luck!
pbh1@comcast.net - 28 Jul 2004 06:34 GMT Watchful waiting with your age and stats strikes me as unbelievably risky. The problem is that there is no way at present to definitively determine which cancers will stay prostate-confined indefinitely and which won't. A New England Journal of Medicine article within the past couple of weeks said that rapid increases in PSA (more than 2.0 increase in a year) are dangerous and definitely require aggressive treatment. However, the article did not rule out danger from cancers producing lesser PSA increases, so there is at present no way for a 59 year old with a Gleason 7 to feel safe with watchful waiting. In a few years the science may have progressed on this point, but at present any PCa Gleason 7 diagnosis signifies the need for aggressive treatment except in the very old. While contemplating potential side effects from aggressive treatment can be depressing, I think most people would say they are doing fairly to very well and have no regrets about the form of treatment chosen.
(Almost) none of us on this group are doctors, so we all would recommend at a minimum that you see both a good urologist and a good radiation oncologist. By "good" I mean docs who truly specialize in PCa treatment. Many have said that this means doing at least 100 PCa surgeries or radiation treatments annually.
Buy Dr. Patrick Walsh's book, "Guide to Surviving Prostate Cancer."
There is a wealth of information available on the internet. The best stuff is on scientific journal pay sites. Many articles cost $20-25 each, so you need to be selective--although some sites like the Journal of the American Medical Association charge a reasonable flat rate for any and all articles that you want to download over a 24 hour period. But your life is at stake so investing a little cash to read peer reviewed articles by leading researchers is money well spent in my view. Abstracts of most articles are available for free.
I've recently read scores of articles and recommend the following (authors' names omitted), all available for a download fee on the web, that collectively provide an amazing wealth of information from both the surgery and radiation perspective concerning the efficacy and side effects of the various treatment options:
"Development of Prostate Cancer Treatment: The Good News," The Prostate 58:211-24 (2004)
"Practical Considerations in Radical Retropubic Prostatectomy," Urol Clin N Am 363-68 (2003).
"Monotherapy for Stage T1 and T2 Prostate Cancer: Radical Prostatectomy, External Beam Radiation, or Permanent Seed Implantation," Radiation and Oncology 71 (2003) 29-33.
"High Dose Rate Brachytherapy as Prostate Cancer Monotherapy Reduces Toxicity Compared to Low Dose Rate Palladium Seeds," Journal of Urology, Vol 171, 1098-1104, March 2004
"Editorial," Journal of Urology, Vol. 171, 1109-1110, March 2004.
"The Contemporary Management of Prostate Cancer in the United States: Lessons From The Cancer of the Prostate Strategic Research Endeavor (CapSure), A National Disease Registry," Journal of Urology, Vol 171, 1393-1401, April 2004.
Another extremely thorough paper, which I attach to a subsequent post, is the European Association of Urology "Guidelines on Prostate Cancer."
Paul
> I'm not new to posting to Usenet newsgroups, only it's usually been > something or other .photoshop, or to do with Japanese translation issues, [quoted text clipped - 35 lines] > > Gareth. Gareth Jefferson - 31 Jul 2004 21:06 GMT Thanks to everyone who responded to my original posting; I've received wisdom and comfort in equal measure.
I'll be seeing my oncologist and urologist Monday and hope to learn my T stage at that meeting.
-- Gareth.
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