Five years ago, at the age of 45, my doctors started taking my PSA. At the time it was four but over the years started rising to 6.8, 12. and finally 15.7. In five years I've had five biopsies. Nothing was every found in the biopsies until this past Friday.
I was a news reporter for 23 years and covered plenty of cancer stories but this one, my own, is devastating. I'm stunned, in shock and left wondering which way to turn. The Proton Therapy is the most desirable to me at this point but I've only started looking. I haven't even met with my Urologist yet so this is all very fresh, very new and very scary.
Someone asked me If I'm afraid of dying. I said no, at this point I'm more afraid of losing my ability to achieve and erection and not wet myself, than anything. My doctor says we caught it early so the fear of death is not that great for me, right now.
I found your website from a friend at the gym who had Prostate Cancer. He said this site was very helpful and I already like what I see.
Thank you for all this information. I understand I am my best advocate and this gives me plenty of questions for my doctor.
I am currently looking at a new treatment option I discovered at the Oregon Health Sciences University. It's called CalypsoŽ Radiation. [Two other Yana men have had or considered Calypso - go to the Site Search Engine and enter Calypso and you'll find links to their stories] You can google it to find more information. Or Google Oregon Health Sciences University.
I'm still waiting for Loma Linda to get back to me about Proton Therapy. I feel like I've gotten lost in the shuffle. I have called a number of times. Is the process always this slow?
As I said above I worked in the Television News Industry for years and have a video company of my own so I've started blogging with video and writing about this whole experience. Click on the blog bar at the top.
This can sure be a frustrating process. Thanks to all of you who've written to offer advice.
Later: This is so difficult. Everyone wants you to do surgery. What are the true facts in terms of what is the likelihood that this cancer will return when you compare Radiation treatments with Radical Surgery? Does anyone have a place I can go look? [There is nowhere that directly compares results of treatments. There are not even any agreements on how to defined success or failure see Choices reference to Effective Health Care paper in February 2008 - Comparing the Effectiveness of Therapies for Localized Prostate Cancer. The Executive Summary (which runs to 20 pages and is in pdf format) is well worth printing and studying. Some terms may be a little technical for the newly diagnosed, but can be understood with a little work and asking questions.]
I'm happy to report I just finished with a relatively new treatment and my PSA is dropping, a lot. When I found out I had Prostate Cancer in January of 2010 my PSA was 15.7. When I started the Calpyso Treatment it was 20. After finishing June 18th my PSA is down to 10.2.
This does not mean I'm out of the woods but I'm on the right path. The Calypso Radiation was done at Oregon Health Sciences University by Dr Hung. I worked out 2 hours a day at the gym, rode an 85 mile bike ride from Newberg, Oregon to Pacific City on the coast one week after treatment began. I continued to ride 50 or 60 miles on the weekends. All of that during the treatment.
The only side effects so far are it's difficult to pee. I can pee it's just tough. It hurts a little. I felt a bit tired three days following the treatment but it wasn't bad enough to keep me from working out or living my regular life. I had three days of bowel issues but that was it. I have had no sexual side effects.
I highly recommend looking into this treatment. A funny side story to show you how this works. The machine is so sensitive one day during treatment I passed gas and the machine shut down. Yep, it's so sensitive and aimed at only radiating your prostate that if that little walnut moves just a bit, it shuts the radiation off.
I am so excited. Three months since finishing my Calypso Radiation Treatment and the results of my test are very good.
The day I started the treatment at Oregon Health Sciences University my PSA was 20. The day I finished the PSA was down to 10. Here is is three months later and Dr Hung just told me my PSA is now 2.74.
Guys, I haven't had a PSA under 4 in five years. Calypso Radiation is not for everyone and I'm a long way from being done. But please guys look into this new treatment. I have no side effects at this point and had very few during or even shortly after treatment.
Oregon Health Sciences University followed me through my treatment to show men what Calypso Radiation is all about. If you are looking at this form of treatment this series may help you. If this link doesn't get you there go to Knight Cancer Institute site and click on Prostate Cancer.
Someone wrote me about my treatment from this site the other day and I realized how long it's been since I updated my information. Three months ago I had the dreaded "Radiation Bump". My PSA went from 2.74 to 4.5. My doctor said don't panic this happens and is normal. Normal to him sure, but I want to be an over-achiever and have my numbers drop to nothing, NOW.(Smile) This week I went in for my year after treatment PSA and good news it is back down to 2.5. I'm highly relieved.
As for side effects I sometimes find urination a bit of a strain but usually only after I hold it too long. This is not painful nor even troublesome but just different than it used to be. I don't wet myself or anything like that it's just I can stand in front of that toilet and make a little noise as the flow begins.
I have no sexual side effects and the research shows that guys five to ten years out, who use Calypso, don't have sexual side effects. [Not too sure what Rick is referring to here. There is an article that refers to 'less erectile dysfunction" being associated with Calypso in a small 64 man study, but since Calypos was only licensed for use in July 2006, it is difficult to understand how ten year results can be establised.] I am doing very well and am not just saying that to make everything sound fine.
I still am a Cancer Survivor and that means every time I go in for a PSA Test my life gets a little rocky. Welcome to the world of survivorship huh?
If you have recently been diagnosed with Prostate Cancer don't let the little voices tell you your life is over and that you will never have an erection again. Instead, dig in and do the research. Don't settle for the first treatment your doctor tells you about. It's your body and you need to figure out what to do not your doctor.
Two years ago this month (June 2012) I completed my Calypso Radiation Treatment. My PSA is still hovering around 2.5 but it was up to 20 when I had my treatment. I am currently waiting to get the results of my latest PSA that was done two days ago.
I have had no impact to my erections and at age 53 that was a big concern to me. We can pretend that we don't care but I do care. Everything else seems to be fine. I will update you when I get those results of my PSA. What I suggest to any guy who has been diagnosed with Prostate Cancer is look at all your options. Surgery is one but it's not the only option.
I recently updated my story but wanted to add my latest PSA numbers. It is important to note that with radiation treatments (Calypso) your PSA drops more slowly. Mine has bounced up and down but never over 2.8.
My last PSA was 2.5 and now it is down to 1.84. I am very excited about that and two years after completing my treatment I feel as though this may be coming to a close. Will you ever feel like you beat it? I don't think so. Until we know what causes Prostate Cancer, it's difficult to know exactly how to beat it.
I have changed my diet some. I never ate a lot of crap but find I eat much more organic food these days. I don't drink soda but still have a beer and a glass of wine. I've cut out a lot of dairy products (not cheese) and I work out regularly (as I always have).
If you are a guy who has just been diagnoses with Prostate Cancer don't panic and don't react too quickly. Surgery is an option for many people but it is not the only option and I suggest you really think it through before making any decision.
I am three years out last month and my yearly PSA is down to 0.94, the lowest it's been in a decade. I finally feel like this battle is over. I can't tell you how glad I am that I went through this and the experience is truly a gift. I no longer look at life as forever but understand that my time on this earth has an expiration date and that gives me the freedom to live louder and longer.
To those men who are just entering this battle I am sorry. The choices are many and it comes down to the fact that only you can decide which treatment is best for you. Admit what your fears are and choose accordingly. I'm only 53 and the thought of losing my ability to have a firm erection scared the hell out of me. My treatment has left me with only one real side effect and that means when I feel the urge to pee I don't question my bladder I go. The erections are as they used to be, although I am 53 (smile).
Good luck to all of you and may God be with you. I hope at the end you can say, with confidence, that this is one of the best experiences of your life. This has been an adventure I would never pass up. I don't want to do it again but it has changed me for the best.
There is life after Prostate Cancer. When you first get that diagnosis it scares the Hell out of you. I am now 4 years out of treatment and things are great. My last PSA was up a fraction and at first it freaked me out a little, but my doctor assures me this is normal with Radiation Treatment.
Here is a video we produced on my journey: http://youtu.be/dEs1-4n6q0k
The only side effects from the radiation are difficulty urinating and that is not all the time and very managable. I also need to pee more often than I used to.
My Calypso Radiation Treatment ended five years ago this month and my latest PSA is still under zero so I am very pleased.
If you are one of the men who is just finding this site it probably means you were recently diagnosed with Prostate Cancer and I must say I am very sorry. This is a long and difficult journey but in my case it is the best thing that ever happened to me.
Cancer gives me the ability to take life less seriously and live it more openly and out-loud.
That first week after my diagnosis I was so scared and had no one to talk with. I didn't want to die but I equally did not want to lose my ability to achieve and keep an erection.
My treatment has allowed me to keep both and I'm very happy about that.
I recommend you do your homework before settling on any treatment. Make sure you ask your doctors "all" the questions, even the most embarrassing ones.
I called men right here on YANA and asked them difficult questions like "How hard is your erection following treatment?" and "Would you choose the same treatment if you had to do it again?"
Do not settle for easy answers, dig and dig, that's what I did and those answers helped me make my decision.
You will get through this and it doesn't mean without side effects of a changed life.
But you may also find that following this fork in the road you live a little wilder, a bit louder, somewhat harder (sorry for the pun) and a lot more at ease.
Blessings and I wish you well.
Feel free to contact me.
My last PSA was in March of 2016 and my PSA numbers dropped yet again.
I can't believe how much peace I have these days about being a cancer survivor. I think back to those days when I got the first diagnosis and I was scared to death.
The treatment I chose was Calypso Radiation and I would highly recommend it to anyone.
My biggest concern in the beginning was not so much death but losing my ability to achieve and erection. I was only 50 when cancer was diagnoses and "that" was and is still an important aspect of my life and my relationship with my wife.
I have no trouble in the erection department. The only real side effect is when I hold my urine for long periods of time I really have to go. In the big picture it's not a big deal I just pee before I leave for a long trip or have to go the bathroom a few extra times when I do long runs.
I'm still very physically active and I think that is the biggest thing going for me. I also eat well and don't each a lot of preserved foods and try to stick to fresh food when possible.
Cancer changed my life but not the way I thought it would. I'm one of the blessed ones because my treatment worked and I'm moving on with life.
For those who have just been diagnosed I'm really sorry but remember there are amazing treatments out there and chances are this isn't going to kill you.
Do your homework, find the treatment that works best for you, always question your doctors and don't take anything for granted.
Rick's e-mail address is: firstname.lastname@example.org