I have just read a report from Mike Scott of a 64-year-old Croatian man who was recently diagnosed with advanced prostate cancer. His PSA was 21,380 ng/ml! Yes, I said a PSA of 21,380. Now, hold on to your seats for even more intriguing information. According to the report this man has never experienced any physical symptoms of any type, no urine blockage, no bone pain, and no symptoms of any sort! The doctors did find that he has chronic anemia, an elevated alkaline phosphatase, a Gleason score of 9, multiple liver metastases, and many bone metastasis throughout his body, yet he has not experienced any symptoms!
Does this man offer any message for the rest of us? Probably not anything specific about our disease, but his situation does make a person stop and think about the value of PSA scores and our rush to treatment, especially early hormone therapy. Most of us are obsessed with our PSA score, I know that I am. Being on intermittent hormone therapy I do confess that my PSA is the guiding light to when I go on and off therapy. Most of us talk about trigger points, on the lower end an undetectable PSA value to stop taking the treatment, and on the higher side a number ranging from five to ten to again begin therapy.
If a man can have a PSA that exceeds 21,000 and not have any symptoms, are our traditional trigger points to severe? We know that hormone therapy causes very significant side effects and we know that it can cause early deaths from coronary problems, so do we pull the triggers too early on both the up side and the down side?
The man in question was treated with an orchiectomy and put on a regime of bicalutamide (ADT2). At his 3 months follow-up his PSA had dropped to 29 ng/ml, not an insignificant change. According to the nomogram, men initially diagnosed with metastatic disease can anticipate a survival time of only 18-36 months. We do not know what his survival time will actually be.
When should we actually start hormone therapy? There are doctors who feel that hormone therapy needs to be started as soon as a man experiences a rising PSA, post primary treatment. There are other doctors, although a small number, who feel the negative effects of hormone therapy are so significant that it should be delayed until there is direct evidence that the disease has become metastatic.
Hormone therapy (including an orchiectomy) has been the gold standard for treating a rising PSA for well over 60 years. Yet, early hormone therapy is associated with limited evidence of a real survival benefit. We do know that hormone therapy does cause significant complications, including increasing the risk of death. So why do we rush to its use? More importantly, after all this time why do we not really know whether its early use extends life or not? This is a very sad commentary on the current state of affairs.
We do know that hormone therapy has a very definite palliative effect on the symptoms of late-stage, metastatic disease. But, we do not know if it is appropriate for men in early stages of advanced prostate cancer. This is shameful to say the least.
Intermittent hormone therapy is a step in the direction of acknowledging this problem, but it too has not been proven to extend life over no therapy and it too does not release a man from the potential side effects. We still do not know if hormone therapy, either long term or intermittent, extends life, we do not know (assuming that it does) when a man on intermittent therapy should stop and start the therapy. We guess at these decisions and we allow our emotions to dictate our treatment.
Additionally, there are doctors who question if early hormone therapy actually accelerates the development of hormone-refractory disease in men with a long PSA doubling time. So are we putting men at risk without providing an upside?
Having PSA tests available has limited the number of men who are now discovered with PSA scores as high as this man. But we still struggle with knowing what treatments are best both for the early diagnosed and the men diagnosed with advanced disease. We remain in the dark ages, throwing sticks and stones at the castle wall. It’s no wonder we cannot defeat the enemy hiding within because our sticks and stone just bounce back at us causing even more, self-inflicted injuries.
Joel T Nowak, MA, MSW
Interesting timing that I read our email. I am currently facing this very decision. I had surgery 7 years ago and 3 years ago my PSA started to show an elevation. I chose not to proceed with radiation until my PSA scores reached .5. They have hovered around .2 for three years I believe because of diet, exercise and supplements of fish oil, red yeast rice, vitamin d and melantonin. In April my PSA went to .33 an MRI was done and there is a small nodule that appeared near the place of the original tumor. I had resigned myself to proceed with radiation but then was presented with the recommendation of hormone therapy in addtion to the radiation stating that the success rate for radiation + hormone was a 20% better chance of non-recurrence (56% with radiation alone; 70% with radation + hormone). This has thrown me. Reluctant to proceed with radiation, hormone therapy quite frankly freaks me out. So I am wondering in your research and support where do you send patients like me in assisting them to make this decision?
Thank you for your interest.
Roy,
As with all that is prostate cancer, actually with most cancers, there is no place to go or person to see who can really give you a correct answer. Just as when you made your first decision on what primary treatment to use we still do not know many answers.
I believe that the research does show that radiation coupled with hormone therapy does have a better non-recurrence rate, but that is for primary treatment. I do not remember any research asking the question on an initial recurrence as you are experiencing.
Your PSA numbers are not reflective of an aggressive return, but the fact that at the very low PSA number of 0.33 you have had a visible lession on a scan tells a different story. A small percent of prostate cancers do not generate much PSA and I think you maybe one of those small percent men.
Is there a baeline scan that shows that this nodule did not exist prior to the PSA return?
Just like when you made the initial choice about your primary therapy, your best next step is to see a few good medical oncologists from different medical facilities and ask their opinions. Then followup their answers with questions and more questions, why do you feel this way, what if I don’t do that etc.
Now to get off the middle ground and share what I believe I would do (but I would not do this without first getting the second and third opinions mentioned in the prior paragraph), I would be concerned about having a visible nodule with a very low PSA and operate as if the cancer was aggressive. I would probably opt for the double attack, radiation and hormone therapy. – Joel
Hello Joel,
My father age 76 got the news that his psa levels were slowly rising again. He had surgery in 2004. Psa was undetectable for 2 1/2 years then rose again to .29 then he had radiation. Another 2 1/2 years and Sept. 2010 they are at .21
My father takes fantastic care of himself, eats healthy, excercises and has so much love for life. He is very worried about when to start hormone therapy. His doctor said wait till they rise to about 5-10 but he feels there has to be something else out there that he can be doing besides waiting around for his disease to advance. Can you offer some advice, or can you tell me the average psa level a man usually waits to start hormone therapy? Any clinical trials we should be looking into?
I appreciate your time.
Jessica
Jessica,
Before I share any thoughts I would need to know more information, including his PSA history, Gleason score (post surgery). Has he had a DRE and what were the findings? Either email me with this information, or post a comment. Join the advanced prostate cancer on-line support group at: http://healthunlocked.com