Friday, May 25, 2007

Diagnosis - is it?

This is another one of those "the longer I have been involved with the groups and PCa, I have some strong feelings" type posts.

This one is about mono treatment of any kind, surgery, radiation, seeds, HDR, Cryo, etc., etc. I do not believe there is ever a time to risk mono treatment in the fighting of this disease. Let me list the reasons why.

1. To begin with the diagnosis itself is so uncertain in terms of the cancer in the gland, the Gleason. PSA and the staging - all very inaccurate.
We get 6 or more needles put into a gland that may be anything from 20cc to 160cc in size. If we are talking about a 25cc gland then 12 needles cover it much more than 12 needles in a 100cc Gland. If 12 needles is sufficient for a 25cc gland then we should use 4 times that many needles for a 4 times larger gland to get the same coverage.
B. In addition there are areas of the Gland that a normal biopsy will not cover with even 12 or more needles.
C. Not all doctors are able to see the cancer in the gland and they put the needles in with a predetermined pattern. A skilled doctor looking at the gland will see areas that are suggestive of cancer and he will stick a needle in those areas. Then we have doctors who use a Color Doppler along with a Black and White that gives them an even better chance of seeing any cancer and sticking a needle in it. Now when we look at the totally needles and total positive the doctor who sees the cancer will have more positives and may do less other needles. Thus our guidelines may not apply to the biopsies done by that doctor.
D. Some tumors are so small that they can not be seen and a small chance of ever having a needle passing through them.
E. In any positive needle that maybe shows a Gleason grade of 3 - a fraction of an inch away may have been a 4 or even a 5.

The result of all this is uncertainty and confusion. Even with the very best doing biopsies we really do not know exactly what we have. So we begin this journey with something that may be just the tip of the iceberg.

2. There is a great deal of confusion about Stage.
What we usually want to know is what was the "clinical stage" - this is the stage when the doctor does the DRE and it is what he feels. The "pathological" stage is commonly thought to be the stage that is found when the gland is removed in surgery. About 50% of the time these will be different. Also the amount of the cancer that is found following surgery will be higher. And if you had 10 doctors doing a DRE they may feel 10 different things. So at best this is very iffy. Read about stage at Reference: 5 below.

3. And now for the Gleason score.
We know that better than 50% of the time the Gleason as given at your local clinic is wrong and it is usually lower than reported. Why is this - simply local pathologists do not have the experience in looking at prostate cancer slides and assigning a Gleason score. Then if we look at the gland following surgery we also find a large difference in what was reported from the biopsy. There is little chance that the Gleason that was assigned at the local level is, in fact, the Gleason you have. This is why we always insist the slides be sent to an acknowledged expert for review. Information at Reference 3, 4 and 5 below.

4. And then we have PSA.
PSA is caused by many things. When a biopsy decision is made base on the level of PSA it is wrong as much as 75% of the time - this means that they cannot FIND cancer in 75% of the men - does not mean it is not there just that they missed it! In prostate cancer PSA is almost a "fools paradise" because so many thing by controlling the PSA they are controlling the cancer - simply not true. We have studies that show the cancer continuing to grow as the PSA gets lower. For a better understanding of PSA and all of its ins and outs read the pages on PSA in the reference #5 below.

So we have a rather bleak and dismal look above at diagnosis and how inaccurate it can be and how unreliable the numbers you are given may be. The result of all of the above simply tells me that most are understaged and therefore should get treated as if they had a higher grade of disease.

The other thing that I so frequently see is those who have failed their initial treatment and the cancer has come back and they are in the fight for their lives - of which many will lose. As I view those who have advanced disease I note that an overwhelming majority of them has a mono treatment at the time of diagnosis. There are a few who were diagnosed with advanced disease and they go along and get treated and if it is a mono treatment - it is sure to fail.

And something else that has to be taken into consideration is the fact that the insurance companies have a set of rules that may dictate only a mono treatment because they simply will not pay for the combination. A practice that I believe is very short sighted on their part - in the long run it will cost them more. Since the doctors knows the insurance will not pay for it he/she has to convince you that the mono treatment is the best for you. They may be just signing your death warrant - especially if you might have a more advanced stage of this disease.

Therefore as I see it if you feel and your stats are such that you are convinced that you need treatment try always to get a combination for example surgery and radiation, seeds and external beam, and you can always add some kind of hormonal ablation therapy to any of them.

Now about that "do you need treatment" bit.
I believe there are times that one can get by without having any immediate treatment and perhaps some changes in the lifestyle and the addition of some supplements and meds may keep some control. This low grade cancer is sometimes referred to as "insignificant cancer". It is further defined as a low PSA, low Gleason, high %free PSA, very low stage, and someone past 65 with no family history of prostate or breast cancer.

If you have been given these numbers and you have checked and double checked them for accuracy (sent slides to an expert) and if you are willing to take a biopsy every year and be ready to move to an active treatment at any time those numbers change (and confirmed) - then you can consider Watchful Waiting.

The strange part of this is that frequently when one is diagnosed with "insignificant cancer" the doctor makes a recommendation for a mono treatment - WHY!!!! I personally believe that if your doctor recommends a mono treatment - you must check everything out carefully and see if you meet the qualifications of having no immediate treatment at all. If you do not meet these qualification then you need a combination treatment.

Even when we see men diagnosed with "insignificant cancer" we do see them start to fail and sometime, but rarely, quickly so you must be vigilant. For more information see References: 1 and 2 below.

Take Home
The take home of this long dissertation is simply that if you need treatment you should go all the way and have a combination of treatment. And if you think you qualify for a mono treatment - maybe you don't need treatment at all at this time!!!!

Now doctors are not going to like me for the above as it means loosing patients. They will simply say "what do you expect on the Internet". But remember that the survival rate for those who are diagnosed with localized cancer (including nodes and seminal vesicles) have a 100% success rate at 5 years. Other studies tell us that one can be as successful with WW out 15 years and at that time those who chose early treatment begin to be better off.

To successfully attack this disease and win the battle there are a number of steps that you need to go through and a lot of things you need to know about your history and your diagnosis. For more details go to the web site in Reference: 6 below and go through the step by step procedures. Then and only then will you have your full suit of armor on and ready to fight the battle.

And for everything prostate cancer start at: