Good evening! There has been quite a bit of news coverage surrounding prostate cancer over the last few months. As with all cancers, there are many specific issues to PCa, and it can be very daunting when a diagnosis comes your way. Also, like all cancers, besides having to deal with the emotional aspects of the diagnosis, the patient is suddenly cast into the role of having to research and educate himself about the disease, and this process can cause anxiety, frustration and can frequently be overwhelming. This is particularly true for the PCa patient and his loved ones, because the course of action is not necessarily clear, or similar, for everyone. In fact, the options presented depend a great deal on the pathology of the diagnosis, the age at diagnosis and one's own priorities and life situation. The intent of my diary tonight is to tell my own story over the last 18 months since my diagnosis as a lens through which to view and discuss some of the current issues that have been in the news, including the option not to treat and the relation of the PSA (prostate-specific antigen) test to diagnosis and monitoring.
I hope that we can have a good discussion tonight. I am not a medical professional, and of course I don't pretend to have definitive answers for anyone, but I think it will be useful to have a discussion and hope that the diary can shed light on the differing points of view. I'll be here until I need to go to sleep to participate in the discussion. Come with me below to read my story.
Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7-8 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.Conventional wisdom about prostate cancer used to be that it was "an old man's disease." We've all heard stories about the symptoms of prostate trouble, typically associated with an enlarged prostate and urination problems. You may have even seen this dubious commercial with Joe Theismann that kind of sums up the way I used to think of prostate problems. When my doctor added a PSA screening test to my bloodwork when I turned 50, I didn't think anything of it, as I had no symptoms. It was, at that time, a pretty routine blood test screening that began for most men at age 50, or earlier if there is a family history.
However, the picture became controversial in May, 2012 - coincidentally, the same month I was officially diagnosed. The US Preventative Services Task Force, who advise Congress and governmental bodies what to advise the general public regarding preventative services, came out against PSA screening for all men, regardless of age. The reasons for this recommendation are rooted in studies like this one that concludes that surgery to remove the prostate has no significant impact on survival. But I was only 50 when diagnosed, and most of these studies concerned older men - could I live for 25 years or longer without treatment? There were no answers. Because the PSA test has only been in widespread use for 20-25 years, there are literally no long-term studies on younger men with prostate cancer. I found nothing that I could relate to in terms of reliable data for men in my situation.
I was furious with this recommendation. As an intelligent person, I want knowledge about my body and my health. When my cancer was indicated by the PSA test, and then confirmed by subsequent biopsies, I was certainly shaken, but craved all the data and knowledge I could get my hands on to make an informed decision about my course of treatment. But prostate cancer can be a deceptive diagnosis - along with your diagnosis, indicating the frequency and size of the tumors observed in the biopsy, the pathology of the cancer is also staged like most cancers, but using a prostate cancer specific score called a Gleason score. Generally, on a scale of 1-10, scores of 6 or below are considered non-agressive cancers. I was scored at 6.
My urologist recommended immediate removal of my prostate. Statistics are hard to pin down, but in general, removal of the prostate leads to incontinence and impotence in a large percentage of men. What I was hearing from my doctors was hopeful...if you are healthy, your chance of avoiding incontinence and impotence is greater than if you are less healthy. But I didn't like the odds. Even if there was a 20 or 30% chance of me winding up with these conditions, this seemed too great a price for something that might not ever kill me. So i did more reading... a lot more.
What I discovered was an option that is increasingly being considered by many men, called Active Surveillance, or "watchful waiting". I prefer "active surveillance" - "watchful waiting" to me sounds like bad news is inevitable, and it is not. This approach began with older men for whom it was an easier call that the prostate cancer within them would not kill them. But for younger men, the recommendation was too risky, I was told. Specifically, my doctor told me that for men with a life expectancy of more than 10 years, radical prostatectomy was the "gold standard' of treatment. Well, I certainly expect to live to age 60, but I felt it was premature to submit to the surgery, given the odds on the side effects. My urologist was, shall we say, concerned at my attitude.
There is another option for treatment - radiation of the prostate, either externally or through implantation of radioactive implants in the prostate, called brachytherapy. Basically, radiation of the prostate winds up killing the entire prostate, and sometimes surrounding tissue. The end effect is the same in terms of long term prostate function. For some older men, this is a viable option, but for younger men this is not recommended. Particularly in my case, as I have a family history of colon cancer, radiation leaves scar tissue in the groin area that can complicate or even preclude future necessary surgeries for colon or other cancers in the region.
So where am I today? Active surveillance involves quarterly PSA testing and annual biopsies (or less frequently, depending on the PSA monitoring.) My last test in August was the lowest PSA test score of them all. The test is not very precise, and tends to bounce around, in my case. I have ranged from 3.7 at the time of my diagnosis, to 4.2 at its highest, to 3.0 in August, my lowest score. This is a bit unsettling, but even my urologist now agrees with my choice of active surveillance. I could go years without surgery, and in the mean time, I can live a life free of the debilitation of having my prostate removed. And if I do see an uptick in my score, or my biopsy indicates a spread or a higher Gleason score, I can then make that decision.
I am perfectly able to evaluate pros and cons regarding my condition, and I prefer to be in control of my own health care. That's what this diary boils down to. This recommendation by the USPSTF takes choices away from younger men who may have prostate cancer. If you are not screened, you will not know, and that can indeed save younger men from a premature removal of the prostate. But it also prevents you from knowing. When I was diagnosed, I talked to men my age that I knew through family and friends who opted for immediate removal. When I asked them "why?", they responded with incredulity. "Why would you NOT?" Well, the answer is because there is a lot to lose, and sometimes little to gain, by an emotional response to prostate cancer. Sometimes, the PSA test and the resulting biopsy saves your life. And sometimes, the PSA test will cause you to take away big parts of your life for no reason. It's a cancer fraught with uncertainty, uncommon choices and the need to be engaged. But I believe everyone has the right to knowledge and choice, and for that reason, I decry the USPSTF recommendation, because for younger men with prostate cancer, it deprives them of knowledge, and choice.
There are hopeful signs that radical prostatectomy is not the only way. Targeted focal therapy, or addressing the cancer without removing the entire prostate is a promising field that I hope one day replaces the current "gold standard" of radical prostatectomy. In the meantime, I recommend reading "Early Detection and Screening" on the Prostate Cancer Foundation's website.
I wrote this hoping there may be men in the DKos community who are struggling with this issue...either whether to be tested, or what do do after the PSA test and biopsy. The choices are not clear, and communication and community can help. I also want to hear from anyone who has had treatment - your feelings about your treatment, how you are doing and what your advice is for those wrestling with treatment options. You are our future, and your experiences and opinions will be invaluable.
I'll be here until I need to sleep, usually around midnight on the left coast. I look forward to the discussion tonight - thanks to all in advance.