There has been a lot of criticism about the recent guidelines on PSA testing that has been issued by the American Cancer Society (ACS). Many of us with advanced prostate cancer are appalled with these guidelines and feel it is just another example of the ACS abandoning men with cancer over the powerful breast cancer lobby.
Some of my fellow survivors have begun to refer to the ACS as the American Breast Cancer Society. I would like to remind everyone that there is very similar clinical trials results for mammograms as we have found with PSA testing coupled with digital rectal exams (DRE). Despite these findings (which are actually contrary to the large European studies) the ACS continues to champion the continued use of mammograms while in the same breath recommend PSA guidelines that are confusing and unrealistic.
I am a firm believer in the need to continue aggressive breast cancer screening because it saves lives. I am also a firm believer in PSA testing along with DRE exams because it saves lives.
Ron Gerhard, an advanced prostate cancer survivor has written a personal commentary about the new ACS Guidelines. I think that Ron’s statement stands on its own.
Joel T Nowak, MA, MSA
As I read the American Cancer Society’s recommendations for prostate cancer testing I knew I needed to comment:
A LIFE DESTROYED – DON’T WALK IN MY SHOES!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Part 1- My rebuttal to the American Cancer society and a wake-up call to men whose windows of opportunity are still open:
So, the American Cancer Society says PSA tests may lead to over-treatment of prostate cancer and unnecessary tests and so on and so on. Well, you don’t want to walk in my shoes.
I went to my family physician and two urologists who either by stupidity or arrogance had already implemented these recommendations and refused to do a biopsy or tell me that a slowly rising PSA (mine was always within the “normal” range) could be cancer. I had been getting a PSA check annually as part of my comprehensive annual physical and was always told I was within normal range.
What was really happening was my PSA was slowly rising since I was 48 years old. I made these results available to all three of my doctors, since the PSA was part of my annual company physical, and visited them on multiple occasions – obviously concerned that something was amiss with me, especially since I had unusual bleeding from time to time starting at age 50. My comment to all three that I “don’t want to wake up in a year and find out I have cancer,” was greeted with, “No, it isn’t that,” and “Don’t worry, you don’t die from this you die with it,” and, in the case of the second urologist after an ultrasound, “you have a nodule but it is benign.”
None of these doctors recommended performing the biopsy and the second opinion urologist not only lied to me but tried to talk me out of the biopsy – which I finally insisted upon at age 52. Not one of these doctors ordered a PSA test after I met with them – rather they just reviewed my annual checkup numbers. Perhaps a different doctor would have ordered an interim PSA to see if the rise continued and ordered the biopsy earlier. My point is not that I had bad doctors or that I was not diligent enough in looking out for myself – both of which are true. Rather, my point is that unknown to me at the time I was following precisely what the American Cancer Society is now recommending.
A LIFE DESTROYED – DON’T WALK IN MY SHOES!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Part 2 – Conclusions and suggestions:
Life is a series of choices – some get made for us and some we make.
If you choose to not get tested and are unlucky enough to wind up like me, here is what you can expect. I have spent tens of thousands of dollars on surgery, salvage radiation, more surgery and now hormone drugs and other medications. I have experienced various degrees of impotence and incontinence as well as size reduction. I don’t believe any man really recovers from that surgery, and post-surgery I had negative margins and was told surgery cured me.
After recurrence I had salvage proton radiation in the hope I would be cured finally – quite an expensive trip to Loma Linda in California from Pennsylvania (albeit enjoyable with no side effects and fabulous care – often called a “radiation vacation”) and another recurrence; this time not in the prostate bed which the salvage radiation killed, but, in the lung.
Prostate cancer sure does have mind of its own, members of the American Cancer society. Realize too, that while time is passing you will have many sleepless nights wondering if you could have been cured if someone had done the tests earlier. You will have the anxiety of the next doctor visit and the next test result for as long as you live with what is now a terminal disease. When you have exhausted all treatment options for a total cure you will get hormone therapy which will work for some length of time, but nobody knows how long, since each case is different, sort of like a sick case of Russian Roulette.
So you get to go into each test wondering if this is the one where the treatment will fail. When that happens you can go into chemotherapy, clinicial trials, etc., etc, with the additional side effects. And then there also the hot flashes, no sex and “man-boobs.” Your mission is to try to hide those as best you can while you are on the hormones.
And then, you get to explain all this to your kids and wife and watch the tears roll down their faces as they watch you try to deal with all this and as they see their daddy and husband change. And you will pray and hope and if you get through a day without thinking about it you will rejoice. And if you are like me, you will wonder about future weddings and grandchildren. And you will put up the good fight and keep that positive attitude because that is what we are told to do, however, from time to time you will feel total despair inside and lose all hope. Then you will try to buck up again and have hope that you will be the miracle and press on. Then a few days will pass and the despair will come again and you will want to tell the doctors who would not perform a biopsy that “it may be better to die from it than live with it.” And die from it you will, if you live long enough. Life as you knew it previously is destroyed. From my viewpoint, more and earlier testing is the only way to go.
Testing saved my younger brother’s life, who was tested for a year or two after my diagnosis and ended up getting prostate cancer at the same age as I did – 52 years old. We had no family history, other than mine.
He caught his early, has a total cure, and thanks me for saving his life. Glad he didn’t leave this up to the American Cancer Society and its doctors/disciples.
So for you men whose window of opportunity is still open – don’t walk in my shoes. Ignore this stupid advice and ask your doctors if they are willing to do the tests at your request today. And if they hesitate, get a new doctor immediately. Get an annual DRE. And get your PSA tested every six months starting at age 45 at least, and earlier with family history. Monitor that trend, and if it starts to rise, get it tested sooner. And if the trend continues get that biopsy. The rise is more important than the number. And if you find cancer, the odds are you will catch it soon enough to cure it.
Don’t let this disease destroy your life as I did – through my own ignorance and with the help of three doctors. Instead, insist on these tests while your window of opportunity to catch this disease early is still open. Shame on these people for these recommendations. Don’t walk in my shoes.
Fighting on with my brothers,
Thank you Ron You have said what I have been thinking since acs came out with their advisory. I was diagbosed with stage 4 prostate cancer in 2006. Unlike youmy doctor did a psa test but forgot to tell me that my psa had quadroupled in a year. A year later I went to the hospital with severe pain in my back. They found prostate cancer in bones all over my body. 2 hormones and zometa have kept the cancer at bay for three and a half years. My psa is on the way up and I stres over my next psain two weeks. Again thanks for putting into words my thoughts.
What a tragedy. A life cut drastically short when your husband took every precaution and the medical system failed him. I’m going to show his story to my husband so he’s not led down the same path.
I just learned Ron has passed away on January 29 2016. I spent a lot of time working with Ron at Mack Trucks, talking at least every day, if not every hour, because we worked closely together. Ron “does” have a wonderful heart and spirit. He was a strong proponent of PSA testing and prostate exams with men at work. Ron helped me press on as does my faith, the same faith Ron has, even years after I had been able to work with him. If prostate cancer kills me or anything else, it is God’s will and I accept it thankfully and with a hope for a future with Him, who knows best. Granted, we humans are not perfect, and we will make mistakes, even ones that will kill us, but I am with Ron, we need to do whatever we can, when we know better, to educate each other to limit our own mistakes from killing us. We as God’s witnesses, can help make a difference, of showing His love, as Ron showed and shared, and passed on to those still living on earth. Ron was able to do this when he was extremely weak and this is when we are more likely to use God’s strength to show who God is. We need to carry the torch!
Because my dad had prostate cancer and my dad encouraged me to have PSA testing and Ron’s reminders and my being conscientious, I am the rare person that was diligent with my PSA testing. I had a favorable biopsy, but. I kept with the PSA testing and exams and between the rising PSA and exams, my very good urologist, recommended I have another biopsy. He, Dr Eskew, found the cancer early and my good surgeon, Dr Coughlin, removed my prostate, and I expect to be cancer free, when I get my next PSA results on April 13. If not, I can live with the peace of mind that I am conscientious and the medical trends did not discourage me or my doctors from doing testing and exams.
This is Ron’s wife, Brenda, here.
May Ron’s cautionary tales and legacy live on. I believe he has saved a few lives and spared even more anguish. That’s who he was. Thanks to all of you for your knowledge, experience and support through the years. I am certain this prolonged his life and eased his struggle.
I am here to talk to ANYONE (guys, wives, kids, friends) with questions, concerns, etc. Ron did every treatment available: Hormone shots, hormone shots with boosters, Provenge, Xtandi, Zytiga, Taxotere.
He kept the devil at the door for 12 years and enjoyed a great 12 years in spite of his diagnosis. He really only had a tough time the last 3 weeks and it took him much quicker than we could have ever imagined, but I believe he toughed it out with all his might!
A life well lived…
Brenda, Thank you for sharing Ron with us.
A Life well lived…
Thank you and bless you, Joel. Ridiculous to lose him at 63 years old. He had so much life left in him. I still can’t believe this is real…
Ron is missed. Your loss is shared by us all.