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Guest Ruben
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Posted

I'm back again, Jack.

 

It's hard to believe that you have only one PSA reading each year--you speak of your "annual" test. I would have guessed that a watch and wait program would require a new reading every 3-6 months. But, hey, what do I know. I'm new at this prostate game!

 

I want to ask again if you had to wait a long time for an appointment with the Buffalo clinic? Like I said, I'm not good at waiting. So can you give me an idea how long you waited from the time you made your first call to the hospital and your first visit with a doctor? Was it a few days, a few weeks or several months?

 

Finally, I am not sure what you meant when commenting on Proton Radiation treatment for prostate cancer. Was this something you investigated before you went to the clinic in Buffalo? Did you draw any conclusions about this type of treatment, Jack? As I said before, if I do have prostate cancer, the first move I'm going to make is toward Proton Radiation treatment. Do you think this is a sensible move?

 

I'll bet the other guys on this thread are getting mighty sick of our back and forth about cancer, but it's proving very helpful to me.

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Posted

>I'll bet the other guys on this thread are getting mighty sick

>of our back and forth about cancer, but it's proving very

>helpful to me.

>

 

Not tired here. Although only 44, I think this thread is of wonderful value to all. Just knowing that I have a resourse like this when the time comes.

Posted

I've got the echo the comments of BigK. I'm certainly not tired of the conversation and really find it educational.

 

I'm actually printing out a hard copy so I can have it as reference when (not if) my PSA starts rising. With my background I'm sure I'll eventually get prostate cancer. I hope I can handle it as well as you guys. I appreciate your openness and willingness to share.

Posted

Big K and One Finger, you raise my spirits following along with us. Prostate cancer can kill. The PSA has made it curable. The problem is: 1) All the curers, the radical surgery, the radiations all of them result in a high possibility of incontenance and erectile dsyfunction and, 2) urologists, in my opinion, have abused the PSA scores to perform these precedures when it has been unnecessary in order to advance their incomes and their reputations. The results are guys whose lifestyles have been ruined for no good reason. I think urologist are a big moral and ethical problem in medicine.

 

On the other hand, we find, and at least I am very comfortable, with the NCCN, National Comprehensive Cancer Network affiliated clinics and their procedures. Further, in their publications, they include the Risk Groups, Low, Medium, and High, as defined by an array of PSA, Gleason scores (from the biopsy) and other factors. At least you can locate where you stand and begin to make life saving decisions based on a history of medical information embraced in the Risk Groups.

 

Actually, the ease of getting hold of this information, incriminates discracefully those doctors who proceed without engaging intelligent one-on-one conversations with their patients.

 

To me the indepent doctors are all the same: the seven or eight hot shot "nerve sparing" doctors sure didn't care if I needed anything or not, and it turns out I was all the time in the Low Risk Group. At the NCCN associated Roswell Park clinic where I now go, where they pratice medicine, where they are dedicated to pursuing a solution to Prostate Cancer, they monitor my circumstance, now once a year.

 

I know, Ruben, that sounds mighty laid back, but, in my case in the Low Risk Group that's what my situation requires which is a 180 from my local doctor who said he's put my feet in stirrups and cut up through my pernium etc. which may have to be done, but not yet.

 

Ruben, I do not recall any "wait" to get an appointment and suggest you call them, though after you've checked to see which is your closed NCCN clinic -- off the website.

 

Regarding the Proton Radiation, and, while we're at it, the CyberKnife I advanced last week, to me it depends on the results: do they avoid the incontenance and the erticle dysfunction. That is the sole name of the game. So, Ruben, we are even, or together in our search to save our lifestyles. Right now, all of these still do the same thing to you -- they take off your boots in three or four years. The Cyberknife is at Stamford and someplace else, just starting this year -- so it takes time.

 

Once a procedure, I hope its a bio-genic pill, kills the cancer without effecting any other part of our lives, that's going to be the winner and it will break up this party. Plus, we'll all know about it. Until then, I'd hang on as long as possible before doing anything, to let new discoveries nurture, and, right now if I had to, I'd do the seeds which seem to be now just as good as the radical or conformal -- and its only a half day to do it compared the challenging invasivenes of surgery.

 

One last silly thing, Ruben, I was told that "having sex" within four days of a PSA test can jack up the number. Sooooo, be careful, dude and count the days on your left hand.:) Also, there are some common "itices" inflamations of the prostate that can jack up the number which can be taken care of easily with those anti-inflation pills. (How'd you like to get a radical removal of your prostate when all you needed was a two week prescription --- and that's exactly what we are talking about ). Let me know.

Posted

I realize I'm chiming in late (I haven't checked the message center in a couple of weeks), but maybe someone wants to hear from a real doctor. First, I should point out that 19/20 of the prostate cancers found through PSA screening will never affect the "screenee" in any way. This is why the US Preventative Task Force doesn't recommend routing PSA screening. 19/20 will suffer needless morbidity. Unlike screening for breast, cervical, and colon cancer, PSA screening has never been shown to save lives.

As someone pointed out earlier, when he discovered 9/11 friends over 70 with prostate cancer, ALL men will get prostate cancer if they live long enough (and, again, it will not affect the vast majority of these men in the least). Although PSA screening is controversial in general, it is quite dubious over the age of 70, and I think one can say with a large degree of certainty that it should rarely if ever be done over age 75.

Aside from a total PSA reading, one can get the free PSA. A high level of free PSA usually indicates a non-cancerous condition (unless the PSA is quite high), and a low free PSA usually indicates cancer. Someone mentioned Gleason scores below 4. There's really no such thing. With Gleason scores of 5 or 6, watchful waiting is usually the best course. With 9 or 10, one should usually do something agressive. With 7 or 8, it depends more.

To summarize, prostate cancer is very different from colon or breast cancer. It is usually not agressive, and only ends up harming a fraction of those who have it. Many urologists are eager to convince patients they're saving their lives, when in fact they're doing more harm than good. It's important to inform yourself very carefully about prostate cancer, and to get various opinions before committing yourself to a treatment. I, for one, do not plan to submit to PSA screening when I come of age unless our knowledge on prostate cancer improves in the meantime.

Posted

Hello Unicorn,

 

I think I understand what you are saying about the use of PSA screening for men who are 75 years old and over, and even for men between 70 and 75. However, I will turn 62 the day after my biopsy. Other than the DRE, what tool besides the PSA do men in their 60s have to detect when a biopsy for prostate cancer may be appropriate? I don't know of any. Besides, it doesn't seem sensible to ignore the PSA at my age because most prostate cancers are slow growing. Surely no prostate cancer grows THAT slowly!

 

From your post it is clear that you are not 70 -75 years old. I therefore assume that you, like the rest of us, if you are at least 50, have an annual check up which includes a PSA blood test. If not, may I ask, why not?

 

Finally, you say in your post: " It's important to inform yourself very carefully about prostate cancer. . . ." Since August 9 when I was told by my urologist that a biopsy might be in order--he also said prostate cancers tend to grow very slowly and I might wait 6 months and do another PSA and then decide--I have been trying to do just that through such web pages as NCCN and the CSA. This is tricky to do when you condsider the following. I had my annual check up in May. My PSA was 1.8; it had been .99. This result was reported to me via letter. My primary care physician said the following about this reading: "Your PSA level was 1.8 which is normal and indicates that there is no evidence of prostate cancer." In August I was due for another appointment with my urologist because of some bleeding I had had the year before. He took one look at the change from .99 to 1.8 and said a biopsy is recommended when a change of this magnitude occurs. Moreover, the NCCN says that a PSA below 2 and a velocity of more than .75 from one reading to another put me in the " high risk" for prostate cancer category! From " no evidence" to "high risk" just like that! If physicians vary this much in their intepretations of two numbers, what am I supposed to do ........

 

By the way, thank you for the "free" PSA comment. I had not heard of this before. I have already look it up and know that a higher % is better than a low %.

 

Ruben

Posted

One has to remember that prostate cancer is different from most other forms of cancer. With most types of cancer, you want to get the cancer out as soon as possible, since they keep growing. Prostate cancers not only grown slowly, but may also regress, so it's not the case that because you have a prostate cancer that it should come out.

Your case exemplifies the risk of performing "screening" in low-risk situations. Since there aren't any agreed-upon guidelines or adequate evidence in many PSA situations, one often gets led along a path where more harm is done than good. Why would one do a biopsy in your situation without even checking a free PSA? You could just have a boggy prostate. Even if the free PSA is low, I see little harm in rechecking some 9 months later. Prostate biopsies themselves run the risk of infecting or damaging the prostate or the nerves around it.

In answer to your age question, I'm still quite far from 50, but do not plan to do screening when I do reach 50 (again, unless better data comes to light about the effectiveness of screening between now and then). What if some meaningless cancer is found? It can ruin my chance to get long-term care insurance, health insurance, life insurance, disability insurance, and so on. What if I end up without testicles or prostate for a cancer which never would have harmed me?

If screening is ever found to be helpful, I suppose it will be for the 50-65 age group. But the jury's still out.

  • 2 weeks later...
Posted

There have been several pertinent articles published in the last several months that advance our intelligence or the ability to field information and questions in our own behalf with our Doctors to help prevent their doing something stupid to us.

 

Prostate Cancer Prevention Trial, conducted over seven years with 2,950 men, the results published in the May 27, 04 issue of the New England Journal of Medicine. This article focuses on the new idea of reducding the PSA level for biopsies (it's not so easy, a patient's PSA level must, it says, be evaluated with numerous other factors to avoid triggering unnecessary biopsiers and surgery).

 

In the July 8,04 New England Journal of Medicine, the issue of velocity, the speed of change in a person's PSA levels, based on a study of 1,100 men found the velocity doesn't always reveal the situation: must be calculated with clinical and pathological data or "PSA dynamics". Ruben, this probably already have read.

 

I was interested in recent results of brachytherapy (seeds) that sexual impotence is experienced in 15% of patients under age 70, and 30-35% over 70. Ruben, this seems better than other approaches and better news than previously reported on using the seeds.

 

In any event, these publications are like a hurricane of information for us, to help protect ourselves from melicious and greedy Doctors so that we don't get gelded when we don't need to be. All the articles come from the best professional sources we've got. Stick with the NCCN (National Comprehensive Cancer Network)affiliated clinics is what makes sense to me.

Posted

There have been several pertinent articles published in the last several months that advance our intelligence or the ability to field information and questions in our own behalf with our Doctors to help prevent their doing something stupid to us.

 

Prostate Cancer Prevention Trial, conducted over seven years with 2,950 men, the results published in the May 27, 04 issue of the New England Journal of Medicine. This article focuses on the new idea of reducding the PSA level for biopsies (it's not so easy, a patient's PSA level must, it says, be evaluated with numerous other factors to avoid triggering unnecessary biopsiers and surgery).

 

In the July 8,04 New England Journal of Medicine, the issue of velocity, the speed of change in a person's PSA levels, based on a study of 1,100 men found the velocity doesn't always reveal the situation: must be calculated with clinical and pathological data or "PSA dynamics". Ruben, this probably already have read.

 

I was interested in recent results of brachytherapy (seeds) that sexual impotence is experienced in 15% of patients under age 70, and 30-35% over 70. Ruben, this seems better than other approaches and better news than previously reported on using the seeds.

 

In any event, these publications are like a hurricane of information for us, to help protect ourselves from melicious and greedy Doctors so that we don't get gelded when we don't need to be. All the articles come from the best professional sources we've got. Stick with the NCCN (National Comprehensive Cancer Network)affiliated clinics is what makes sense to me.

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