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The Big P- Prostate Cancer


Gar1eth
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Posted

I've had chronic prostatitis for 20 years- or as they sometimes now call it- chronic pelvic pain syndrome- since they really aren't sure what it is or how best to treat it. It supposedly has no relationship to cancer- but since I have recurrent symptoms - it would be hard to tell the difference. I often have frequency, urgency, low back pain around the waist-line in a fairly circumscribed location. Plus I'm at risk for prostate cancer because of my diet most likely and the fact that my father had it.

 

So I was wondering if anyone out there in Forum Land has had prostate ca- that wasn't 1st picked up on a rectal exam or by PSA screening? If so, what were your symptoms?

 

Thank you for all of us.

 

Gman

Posted

I had prostatitis in 1996, but a low PSA and no evidence of a problem during the rectal exam. I do not know how to do this without scaring you, but I suggest you demand a prostate biopsy immediately just to be on the safe side.

Posted
I had prostatitis in 1996, but a low PSA and no evidence of a problem during the rectal exam. I do not know how to do this without scaring you, but I suggest you demand a prostate biopsy immediately just to be on the safe side.

 

I appreciate the advice. But I've had these same symptoms recurrently for 20 years now. I had my last prostate exam last spring- and at least at that time- the urologist thought everything was ok. If I had had a biopsy everytime I had had these same symptoms over the years- well I would have had a lot of biopsies. If my symptoms remain constant over the next month, I'll go for a recheck.

 

Gman

Posted

I also strongly encourage you to have a biopsy. A negative result with increased PSA means watchful waiting is OK but only for a "little" while. Then, have another biopsy. Generally most prostate Ca are slow growing so you have time to decide what you want to do. But, you do need to know what is going on in your own body. Therefore, if your first biopsy is negative but your PSA continues to climb, then another is indicated. This may be a year or two down the road. Eventually the biopsy will discover the "real" truth and you can then, at a reasonable pace, decide what you want to do. There are numerous options and not every option is the ONE for you.

 

Keep investigating.

 

Best regards,

KMEM

Posted
I appreciate the advice. But I've had these same symptoms recurrently for 20 years now. I had my last prostate exam last spring- and at least at that time- the urologist thought everything was ok. If I had had a biopsy everytime I had had these same symptoms over the years- well I would have had a lot of biopsies. If my symptoms remain constant over the next month, I'll go for a recheck.

 

 

Have you actually had a biopsy at any time during these years? If not or a long time ago, I can tell you first-hand that even the best urologist in the world can not say everything is ok without the evidence of a recent biopsy.

Posted

experience

 

Even though I don't fall into the diagnostic category you mentioned, I did have prostrate cancer and was operated on a year ago last October.

 

Having spent the previous two years battling other kinds of unrelated cancers, I want to encourage you to have the biopsy done...if nothing more than to have peace of mind. I had been having blood tests fairly often for PSA since I turned 50. My doctor found a small hard area during a digital exam a few years ago and ordered a blood test. The test came back with a very small PSA, but did show dangerous other levels and he called me and asked me to go in and have another blood test right away. I went in an hour later and 30 minutes after I got home from that test, he called and told me to go to the emergency room right away and ask for a specific Doctor by name. He didn't say it was the prostate, but that's what I thought it was. It wasn't until after i had been admitted and put in isolation, that a doctor came in, introduced himself and told me point blank that I had the most dangerous kind of leukemia.

 

In the meantime, as I battled the disease and the chemo, they continued to check my PSA...which still registered as very low. It wasn't until after I had been in remission for 6 months, that we ended up addressing the "hard spot"my doctor had found in the earlier exam. I went to a urologist and he did another digital exam. He apparently felt the same thing and ordered a biopsy. The results showed the development of cancer, and I made the decision to have it removed rather than have it radiated. I felt strongly that I would prefer to have the cancer sitting in a small jar on someone's shelf than to have the radiated remains in my body. I elected the Da Vinci robotic surgery.

 

My point is, the PSA screening was unhelpful in finding the cancer in my case. It took a biopsy to find it. As others in this thread have pointed out, prostate cancer is slow growing so you have some time to decide, but for me, having battled cancer for four years already, I would rather know what I have and act on that knowledge.

Just offering my advice....

Posted

The problem with biopsies is that they can easily miss a cancer. I'm not going to go in and demand a prostate biopsy when all the urologists I've ever seen over the years have not recommended one. I will schedule an appointment with the urologist if the symptoms continue. But if you consider how often I have had symptoms over the past 20 years- I might have had way over 10 biopsies. And the more biopsies the more likely occurrence of complications. So every 3 to 4 month biopsies over 20 years was obviously not the answer.

 

Gman

Posted

I had read your original post and your feelings about the 20 years of living with this issue. I was just offering my opinion and advice on how to finally have peace of mind on this issue.

 

The biopsy I had took small samples from 6 or 7 different areas of the gland to allow for a more complete test. That may be the standard, I don't know. I was a novice at this.

 

I thought you had asked for advice, and I tried to give it based on my experience. I realize now your mind was already made up and I will have nothing else to offer

Posted

 

The biopsy I had took small samples from 6 or 7 different areas of the gland to allow for a more complete test. That may be the standard, I don't know. I was a novice at this

 

Yes, I understand that is the standard for a prostate biopsy. I remember being in a lot of pain days after the biopsy. Let me say again that you can not necessarily relie on a doctor or a urologist. In my case, I had none of the warning signs (PSA. etc). But, I knew there was something wrong because I was tired for many hours after sex. I asked for a biopsy, against my urologist's advice. And indeed I did have prostate cancer, followed by an operation to remove my prostate. But, the operation was very early, and I have been fine for 17 years with no follow-up treatment required. My urologist was surprised by the biopsy results, and sent samples to a second lab at Johns Hopkins. They verified the prostate cancer. Garleth, your situation may be completely different. I hope so. And your doctors may be spot on in treating you. And I assume you have received 2nd, 3rd, 4th and 5th opinions from other doctors because that is imperative.

Posted
I've had chronic prostatitis for 20 years- or as they sometimes now call it- chronic pelvic pain syndrome- since they really aren't sure what it is or how best to treat it. It supposedly has no relationship to cancer- but since I have recurrent symptoms - it would be hard to tell the difference. I often have frequency, urgency, low back pain around the waist-line in a fairly circumscribed location. Plus I'm at risk for prostate cancer because of my diet most likely and the fact that my father had it.

 

So I was wondering if anyone out there in Forum Land has had prostate ca- that wasn't 1st picked up on a rectal exam or by PSA screening? If so, what were your symptoms?

 

I actually do a urology clinic with a urologist once a week. I feel for you--this is a very challenging condition to treat with no 100% reliably effective tool. Obviously you long ago were tried on a 6-week course of a quinolone antibiotic such as Cipro and an alpha-blocker such as tamsulosin, and didn't have success with this, or you wouldn't be writing. Right off the bat, I want to make sure that we're clear that in your case checking a PSA is not screening, since the term screening means one is checking for a disease in someone without symptoms, and this doesn't apply to you. There are physical therapists trained to help those with your condition, and that may be one of the most reliable therapies to recommend. Medications which have worked for some patients include finasteride (which can put hair on your head if it needs it, BTW), gabapentin, or amitriptyline.

I don't have access to your records, of course, but if you have a good urologist who doesn't recommend getting a biopsy, I would very strongly advise you to follow his advice. What is not commonly understood is that prostate cancer is in most cases a normal part of aging, in that all men will get it if they live long enough. Although a small fraction of these do spread and can obviously be fatal, the vast majority never spread or affect the life of the man who has it. It's roughly accurate to say that you can take your age, and that's the percentage chance you have prostate cancer in you right now. These are the statistics:

Table 3

Autopsy prevalence of prostate cancer in the world

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2706483/table/T3/

 

In other words, if you look for it, you're going to find it virtually 100% of the time, eventually. Unfortunately we do not have good ways at this time to know which cancers are along for the ride, and which are trouble. That being said, it's a good bet that if your PSA is stable, and very especially if your free PSA is over 15% (and total under 10), that you don't have the dangerous kind--and that if you go looking for trouble you have a good chance of finding it. If you have an irritated prostate, I can guarantee you that sticking needles in it or zapping it with radiation or surgery is not going to make it less irritated.

Can you go around hunting and find a urologist who will take your money and biopsy your prostate? Absolutely. Will it be helpful? Pretty unlikely. Will it make things worse for you? Very good chance of that. You are much more likely to get good advice from an intelligent, evidence-based, ethical urologist than from a lay person. This is your life. If you need to, spend the money you'd otherwise spend on an escort or two, and get a second opinion if you like from a urology professor at a local medical school (or better yet, a top-notch medical school). It is the epitome of foolishness, in my mind, to imagine that one knows more about a health problem than someone who makes a career out of studying it. That would be like me telling Roger Federer how to play tennis because of stuff I read on the internet.

Good luck.

Posted

Unicorn speaks with wisdom. In my own case, I had some urinary issues - frequency, difficulty getting "clear" as well as getting up at night. My father also had prostate cancer so eventually in an effort to allay my fears, I went to the urologist. We did the PSA thing although he told me of it's limitations as a diagnostic tool. Eventually I opted for a biopsy. In my case he did 12 sticks (not a pleasant thing, as someone noted above) - one came back positive but the Gleason score was good. Nevertheless, the doctor said we didn't didn't need to make a decision right away - we wanted to do watchful waiting. There has been no real change in my PSA read and nothing else has changed. It has been several years now. When we discussed treatment options the urologist laid it out about the differences in survival rates for surgery versus radiation. After 10 years of treatment (whichever one), surgery becomes the gold standard for survival. The problem for me was that my father opted for the surgery and he life was considerably changed as a result. I wasn't ready to deal with that kind of change. Oh yes, because my PSA has been so stable, we have moved from every three months to every six months for PSA and consults. I have heard of guys having the surgery and having everything in working order down there, and that would certainly go a long way toward helping me move on this should I decide that it was indeed time to do so. But as noted above in Unicorn's post, most men eventually get this condition and do not die from it. While I realize it's serious, it doesn't necessarily mean that you should react quickly and in a c-induced panic.

Posted

Please consider the possibility you might have an infection, rather than cancer. Only a good urologist will be able to tell you for sure what you've got. But last year I was having an ache in my groin that came and went, and peeing was becoming increasingly painful. I didn't do anything about it and a couple of weeks or so after this started I found myself one night peeing what looked like cranberry juice! I got myself over to the ER at the nearby hospital and they put me on intravenous antibiotics even though the preliminary tests weren't conclusive. The cranberry juice thing stopped within 2 hours of going on the antibiotics. They kept me in for a couple of days with more antibiotics. Lots of tests but they never really figured out exactly what bacteria was at fault. However, they told me what I had was a urinary tract infection that seemed to have gotten into my prostate, as well. Ordinarily, I was told, that's more complicated and takes longer to treat and cure. In my case I was well enough to go home after 2 nights in the hospital, after which they sent me home with oral antibiotics to take for another week or two. I'd never had a UTI and once it was gone I've had no further problems. But, as you can see, there are a number of things that can go wrong with your prostate and they're not all cancer. So take plunge and find a good urologist and pay him a call!

Posted

It is the epitome of foolishness, in my mind, to imagine that one knows more about a health problem than someone who makes a career out of studying it. That would be like me telling Roger Federer how to play tennis because of stuff I read on the internet.

 

I have had a lot of illnesses in my life, big and small. If I had not followed by own instincts about what was happening in my body I would have been dead twenty-seven years ago. And I am not writing about my experience with prostate cancer.

Posted
Please consider the possibility you might have an infection, rather than cancer. Only a good urologist will be able to tell you for sure what you've got. But last year I was having an ache in my groin that came and went, and peeing was becoming increasingly painful. I didn't do anything about it and a couple of weeks or so after this started I found myself one night peeing what looked like cranberry juice! I got myself over to the ER at the nearby hospital and they put me on intravenous antibiotics even though the preliminary tests weren't conclusive. The cranberry juice thing stopped within 2 hours of going on the antibiotics. They kept me in for a couple of days with more antibiotics. Lots of tests but they never really figured out exactly what bacteria was at fault. However, they told me what I had was a urinary tract infection that seemed to have gotten into my prostate, as well. Ordinarily, I was told, that's more complicated and takes longer to treat and cure. In my case I was well enough to go home after 2 nights in the hospital, after which they sent me home with oral antibiotics to take for another week or two. I'd never had a UTI and once it was gone I've had no further problems. But, as you can see, there are a number of things that can go wrong with your prostate and they're not all cancer. So take plunge and find a good urologist and pay him a call!

 

You are definitely right. It could be an infection. In fact when chronic prostate acts up, they often give antibiotics- even if they aren't sure it's an ice took or not- -#1) sometimes if it's a deep seated infection inside the prostate - the urine comes out clean - and it can be hard to express prostate secretions in the urine- takes vigorous pressing on the prostate- which I frankly can't handle. My prostatitis or whatever it is can be triggered by even the normal 'gentle' exam ( that's one reason I'm a strict top- I figured if a doctor exam could cause me a week's worth of pain, someone deliberately trying to hit it was not the thing to do). The only other way to possibly find if there is an infection into the prostate would be to stick a needle into it. They save that procedure for when they desperately need to know. There is some thought that some antibiotics might also provide an anti-inflammatory effect as well as an anti-infective effect.

 

So antibiotics might be the way to go. But from experience of 20 years- while this case may be different- I can tell you the antibiotics haven't helped much.

 

Gman

Posted

Please Guys

 

I'm pretty much up on the symptoms of my disease- it's easy when they mostly have only theories and still aren't sure what to do. What I didn't know for sure was how much different. the symptoms of prostate cancer were in people who were symptomatic at diagnosis and not just diagnosed by digital exam or a prostate nodule.

 

I appreciate everyone's replies. I did not start this topic for people to pick at each other. I wish everyone good health- for those who have had cancer or are in the middle of the process- my best wishes for a cure.

 

Gman

Posted

Hey Gar,

I appreciate your dilema. I note you are in Cincinnati and there is a great medical center there that would be worth checking out both with Internal Medicine and Urology. If you have the resources, I would suggest a trip to John's Hopkins, as they are the foremost center in the USA for urological conditions, including diagnosis and treatment of Prostate Cancer and other conditions of that area of the body.

 

After several years of watching my PSA levels go up and down, the general trend line was definitely up, and so saw two different urologists in two different cities for their opinions. Both recommended a biopsy, but also discussed all of the other options that have been mentioned above. I found the biopsy to be painless and not at all uncomfortable. 12 samples taken, one with cancer and a moderate Gleason score. However, for other reasons, I elected to have it out, and in retrospect it was the right decision. It turns out my prostate was not the size of a walnut, but of a grapefruit! The cancer was found in several areas of the gland, and it was quite aggressive. Fortunately, it appears not to have spread beyond the gland itself. My recovery has been excellent, and only one small residual issue that may take a couple of months to disappear, but I can live with that. Every person is different, and I am not suggesting what you do, other than given your long term issues as you describe them, there is something definitely going on, and I would encourage you to check it out. Good luck and if you like you can send me a PM for further info.

DD

Posted
Unicorn speaks with wisdom. In my own case, I had some urinary issues - frequency, difficulty getting "clear" as well as getting up at night. My father also had prostate cancer so eventually in an effort to allay my fears, I went to the urologist. We did the PSA thing although he told me of it's limitations as a diagnostic tool. Eventually I opted for a biopsy. In my case he did 12 sticks (not a pleasant thing, as someone noted above) - one came back positive but the Gleason score was good. Nevertheless, the doctor said we didn't didn't need to make a decision right away - we wanted to do watchful waiting. There has been no real change in my PSA read and nothing else has changed. It has been several years now. When we discussed treatment options the urologist laid it out about the differences in survival rates for surgery versus radiation. After 10 years of treatment (whichever one), surgery becomes the gold standard for survival. The problem for me was that my father opted for the surgery and he life was considerably changed as a result. I wasn't ready to deal with that kind of change. Oh yes, because my PSA has been so stable, we have moved from every three months to every six months for PSA and consults. I have heard of guys having the surgery and having everything in working order down there, and that would certainly go a long way toward helping me move on this should I decide that it was indeed time to do so. But as noted above in Unicorn's post, most men eventually get this condition and do not die from it. While I realize it's serious, it doesn't necessarily mean that you should react quickly and in a c-induced panic.

 

I'm glad you had such a good outcome. In order for this to happen, there has to be (1) an intelligent, level-headed patient, (2) a knowledgeable, caring, and ethical urologist who's willing to take the time to explain the facts and options to the patient, and (3) a patient (and often-times wife/family) who's willing to listen and act rationally rather than emotionally. You're lucky you had such a good urologist (and are intelligent/rational yourself). Unfortunately, the truth of the matter is that urologists get paid to take out prostates, and not to sit down with the patient and family and have a rational discussion. There's definitely no financial incentive to try to cool things down and put things into perspective, especially when you have a patient (or, commonly, a wife) who's bouncing against the walls and ceiling from the moment the word "cancer" is uttered. If a patient mentions a family history of prostate cancer, it's important to know whether the relative died of or with the disease, and whether the cancer invaded outside the prostate. Since prostate cancer is ubiquitous, everyone has a family history of prostate cancer. Since my father died at the age of 82, it's most likely that if an autopsy had been done on him, they would have found cancer in his prostate. Likewise, my older brother is 60, so odds are he has prostate cancer (confined to his prostate).

Posted
I have had a lot of illnesses in my life, big and small. If I had not followed by own instincts about what was happening in my body I would have been dead twenty-seven years ago. And I am not writing about my experience with prostate cancer.

 

Of course doctors do make mistakes, some may have off days, and--let's face it--there are simply some bad doctors. It's often wise to get a second opinion if you sense you may not be getting a good answer. Few people, including physicians, would deny that. This might have been the case for whatever happened to you 27 years ago. In G-man's case, however, it sounds as if he's had multiple specialists telling him it the same thing: it would be safest not to get another biopsy. In that case, there's a greater likelihood of his being harmed by insisting on an invasive procedure because of information he's garnered on an escort message board, rather than following the advice of multiple specialists.

 

Posted
In G-man's case, however, it sounds as if he's had multiple specialists telling him the same thing: it would be safest not to get another biopsy. In that case, there's a greater likelihood of his being harmed by insisting on an invasive procedure because of information he's garnered on an escort message board, rather than following the advice of multiple specialists.

 

 

This thread is valuable because we are having a lengthy discussion of prostate cancer, in my experience something that men dislike talking about greatly. I wish there had been such a useful range of information available when I had a prostate cancer operation in 1996. It likely would not have changed my decision because in those days, everyone recommended surgery for someone in their very early 50s, as I was. Perhaps, because you deal with prostate cancer issues frequently, you are unaware of how little the average person knows about the subject, especially the very possible every-day consequences of an operation. If anything, I wish there were more threads like this, not less.

 

I have a huge amount of respect for 95% of doctors, but I believe you have too much faith in the advice of multiple specialists, some of whom may not given more than a glance at G-man's case.

Posted

IMO, the medical community is clueless about the prostrate and what causes PSA changes or in fact what can affect the gland. Treatment for the Big P are barbaric! It is slash and burn medicine. They don't treat the disease or remove the cancer, they either cut out or burn out your prostrate! And there is no proof that multiple biopsies (which are taken by driving needles through the rectum into the gland) do not cause trauma to the gland aggravating the situation that might contribute to the mutation of the cells. Additionally, even if you have it, how can breaking the encapsulation and possibly spreading the cells possibly be a good thing.

 

You can tell, I do not think much of the urology community when it comes to this! For two years I've lived in PSA hell. PSA from 4 to 6 in two years, then a biopsy - 20 cores negative. Six months later, PSA 12, 30 days later, PSA 18. Four months later PSA 6. Seven months later PSA 14. Doctors have NO CLUE! The only thing they offer is another biopsy. Thanks but no thanks.

 

Oh, and I'll pass on the sexual lobotomy, too!

Posted

I am absolutely lying flat on my face with some of these "answers/opinons". Of course, MD's are human and make mistakes. That is why, heaven forbid, we should take the responsibility to participate fully in our care and treatment. However, you can forum shop until you find the one in twenty doctors that agrees with what you wish is happening but that likely is not in your best interest.

 

I know of one guy who was so worried about his very slowly but slightly increasing PSA that he had it removed, even though he was not getting any medical advice to do so. His decision, right or wrong.

 

I also know of one guy who had 3 biopsies over a period of 5 years during which his PSA steadily increased from 10 to over 100. The 3rd biopsy definitely showed cancer. That still left several courses of treatment available to include "watchful waiting", broad beam radiation, narrow beam radiation, brachytheraphy and cyrosurgery. It is not easy to choose the best course. Your age, the opinion of whether the cancer is slow or fast growing, your mental attitude towards everything and last but certainly not least, the opinion of your team of doctors.

 

As an aside, one urogologist says he makes $1900 to remove a prostate. His point was he was hardly coining money to do so. From knowing this guy, I think he always has the best interests of the patient in mind and offers, not all, but most of the aforementioned treatments or will refer you to those who do. Still he is not always correct in his opinion and the patient must provide to the doctor and himself his real opinion of what should go on (next).

 

We have not yet arrived at a point where we can wave an electronic instrument around and "cure" very much of anything. Unfortunately, a good deal of the time burning, poisoning and cutting are the only "realistic" procedures available to prolong life.

 

None of us are likely to survive this life so a prolongation plus some thought about quality of life is the only hope we have.

 

Best regards,

KMEM

Posted

As an addendum to the topic of prostate cancer- I am aware of a friend of a friend who has had his second bout of rectal cancer. While I don't bottom, I have performed unprotected oral before. I have received the 3 dose human papilloma virus vaccine. I strongly urge everyone out there to discuss with your physician about getting it. If your physician says yes, but doesn't carry it- I was able to get mine without a prescription at Walgreens.

 

Gman

Posted
I am absolutely lying flat on my face with some of these "answers/opinons". Of course, MD's are human and make mistakes. That is why, heaven forbid, we should take the responsibility to participate fully in our care and treatment. However, you can forum shop until you find the one in twenty doctors that agrees with what you wish is happening but that likely is not in your best interest.

 

I know of one guy who was so worried about his very slowly but slightly increasing PSA that he had it removed, even though he was not getting any medical advice to do so. His decision, right or wrong.

 

I also know of one guy who had 3 biopsies over a period of 5 years during which his PSA steadily increased from 10 to over 100. The 3rd biopsy definitely showed cancer. That still left several courses of treatment available to include "watchful waiting", broad beam radiation, narrow beam radiation, brachytheraphy and cyrosurgery. It is not easy to choose the best course. Your age, the opinion of whether the cancer is slow or fast growing, your mental attitude towards everything and last but certainly not least, the opinion of your team of doctors.

 

As an aside, one urogologist says he makes $1900 to remove a prostate. His point was he was hardly coining money to do so. From knowing this guy, I think he always has the best interests of the patient in mind and offers, not all, but most of the aforementioned treatments or will refer you to those who do. Still he is not always correct in his opinion and the patient must provide to the doctor and himself his real opinion of what should go on (next).

 

We have not yet arrived at a point where we can wave an electronic instrument around and "cure" very much of anything. Unfortunately, a good deal of the time burning, poisoning and cutting are the only "realistic" procedures available to prolong life.

 

None of us are likely to survive this life so a prolongation plus some thought about quality of life is the only hope we have.

 

Best regards,

KMEM

 

Thank you for such strong and thoughful writing. As valuable as this thread may be, we have gone all over the place. With regret, I include myself as guilty. So it was important for you to compose such a reasonable piece.

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