Active Surveillance after positive confirmation that you have cancer????

I am not a proponent of Watchful Waiting, or Active Surveillance once you have a biopsy and it was confirmed that you have cancer.

My personal experience was that my PSA was very low at only 3.83, my biopsy only found cancer in the right mid-section. What the biopsy and/or PSA cannot tell was the full picture. Only after surgery was it found that the cancer involved the left apex of the prostate and that it involved the nerve bundle. The pathology report showed that all margins were all negative.

I have read too many entries about those men that think that will wait a year or two or even longer to make a decision to do something, then they find that the cancer has spread beyond the prostate bed. They turn out with positive margins and things go from bad to worse.

Regardless, even though I took action right away and had my surgery with a low PSA and a low level of cancer, it may not have been quick enough. Only time will tell. My surgeon informed me that the latest “theory” is that when the nerve is involved, the cancer cells can push out and follow along the nerve like a train and escape the prostate that way. After three years, my PSA started rising again. The hope was that by radiating the prostate bed that they would get all the residual cells, but it now appears that the cancer is still growing out there somewhere.

My surgeon is excellent and has been truly honest with me. He no longer believes that it is just a matter of a possible temporary bump in the PSA after radiation therapy. He does not think that it will somehow stop growing or even level off at some point. He is realistic. He knows that it will continue growing.

Now that question is, how quickly will it grow? They will be looking at the doubling factor and what other symptoms will present. That is what will determine what the next treatments will be. If it takes 15 years for the cancer to grow significantly, then not much will be done, but if it doubles every six months, then they will take more aggressive action.

tegard,

You have provided exactly the scenario that argues against AS and reductions in testing, as well as the need for better tests.

 

I agree. I think Active Surveillance should be called Active Gambling instead. Also, though with surgery as one doctor said to me, "they don't slice the prostate in to layers one cell thick. So how do you really even know what you have after surgery either?" One thing we all know for sure, is that nothing is for sure.

As it was told to me in the very beginning of my PC journey in 2008, at best, a biopsy is but an estimate. Especially with 12 core or less biopsy tests. It took 3 biopsies spread over 18 months to find the pay dirt with me, and boy, was it there. My uro feels that the first 2, which were 12 cores, simply missed the cancer. The 3rd one was targeted into some suspicous areas on the scan, and it hit 7 out of 7 for cancer, ranging from 40% to 90% pure.

I am not opposed to AS in theory, but one is gambling on the accuracy of a single biopsy sometimes. Now if a person had a 30-45 core saturation biopsy, that's another matter, and would reduce the gambling factor in my opinion.

david in sc

ted,

I understand your position, but I waited 18 months and would have gone longer if possible. I'm not saying my choice is right for everyone, but I am glad that I did it. I think there is a place for AS. Hopefully I will never regret my decision, but so far so good.

Best of luck to you.

 

Things are not black and white as many would believe. Chosing to go on AS or get treatment for a low risk PC found on a biopsy with out getting some additional information is not a wise move. For agressive cancers found on a biopsy it is a completely different story.
One can get another biopsy in 6 months.
One can get a color doppler ultrasound.
One can wait to see what a his psa does; is it steady, moving up very slowly or moving fast.
One can get a saturation biopsy.
One can get an MRIS.
One can get a PCA3 test.
Any or all of these will provide more information on which to make a decision.
Nothing is 100% even treatment, as Tedgard's post indicates, but one does not have to make a decision based on just one piece of information. The more information you have the better probability one can make the correct decision on AS.
If you do a sample of the posts on this forum you will find that 50% of the posts relate to complications after treatment. I have not yet seen a post in 3 years of someone dying or complication arising from anyone that chose AS. Most on AS monitor their PC closely and get treatment when there is a sign of progression and results are similar to getting immediate treatment. Many more are never treated and live out full lives free from ED or incontinence.
I fully perscribe to Dr Barkin's (PC coach) approach. Maximium survelience by all means and minimal invasive treatment until the agressiveness of the cancer can be determined. For many low risk patients the treatments are far more harmful than the low risk non-aggressive cancer.
JohnT

The challenge with prostate cancer is determining the correct degree of treatment for what you've got. This is made especially difficult by the inadequacy of the diagnostic methods, especially the fact, as noted by some here, that a negative or Gleason 6 biopsy may be followed by a later biopsy that shows significant cancer. No one wants to be overtreated or undertreated. An example of an overtreated patient would be almost anyone over 70 who has a prostatectomy. You need to live at least 10 to 20 years for prostate surgery to save your life, and so it shouldn't be a surprise that controlled trials of prostate surgery show no benefit on life expectancy for those over 65 years old.

I recently learned of a dramatic example of undertreatment. Bobby Fischer, the brilliant and mentally ill chess champion from the 1970s, died from kidney failure in 2008 at age 64. Apparently for several years he couldn't pee. In books about him, he was said to have benign prostatic hypertrophy, but really, he could have had prostate cancer. He didn't allow any medical diagnostic procedures other than a few blood tests, nor did he allow anything to be done to relieve the obstruction, and he declined renal dialysis. Having had urinary obstruction myself, I can't image declining treatment to relieve it. It's probably appropriate to say that he died from his paranoid psychiatric disorder.

Unfortunately, most of us fall between these extremes, and uncertainty is part of the game.

Interesting comments. Thanks for all of them.