Just diagnosed...have already been to the site many times and have found it extremely valuable.
My dilemma is just to make a choice...my early detection and rather mild stats will allow me the time to decide. Cancer was found in 2 of 14 biopsy cores at only 5% with ASAP/pre-cancer in 2 others.
These days the background noise is very loud about over-treatment in young men...especially men with similar stats to mine.
It may appear that I made a quick decision, but five weeks after diagnosis I'm am in Loma Linda for my Proton Radiation consultation. Like many others however, I got a head-start on the research as I was visiting this website and many others more than a month prior to my biopsy.
Obviously everyone is different. Other factors besides your specific cancer stats can sway your treatment decision. My choice of Proton Radiation was driven my numerous personal factors...so here is my unique story (as is everyone's)...
I have read and heard stories from so many men who were shocked, stunned, angry, surprised, in denial or some combination of the above. Not me. I have been exposed to so much (and so young) cancer in my family. My father first fought cancer at 41 and died from it at 55. My wife was diagnosed with breast cancer at 44 and on the day I got my diagnosis, my 41-year-old first cousin died from cancer. I was 15 or 20 lbs. overweight and ate a pretty poor diet. I exercised some, but not enough....and I was STRESSED OUT.
My diagnosis was a huge wake up call. I have radically changed my diet. I have been strongly influenced by T. Colin Campbell's book: "The China Study." I'm not (yet) a vegetarian...but I'm getting closer...and I have eliminated so much CRAP from my diet. Here's the thing: I don't miss any of it. I thought it would be so difficult. I'm not hungry, I love shopping for, cooking and eating the new recipes that I am finding. I feel great and I have lost nearly 15 lbs. in five weeks. I have not even exercised much as the weather this spring in Montana has been crappy. I would encourage anyone with poor habits who has been putting off a diet change because they thought it would be too difficult to get busy and get healthy. Three days after my diagnosis my mother had her second heart attack...and this one nearly killed her. Despite my diagnosis, I bet I had a better chance of dying of heart disease than prostate cancer. Hopefully this new lifestyle will go a long way to improving my chances on both counts. Rant over.
A few days before my diagnosis, I lost my job. I think that will actually reduce stress, not increase it. I had been considering Proton Beam Radiation, but did not think there was any way I could afford to be away from work for so long. Now I had some time on my hands and became even more interested in Proton. Also I was able to COBRA my insurance - and it's very good insurance. Two of the negatives against Proton Radiation (cost and time) were addressed and conquered. Now I had to conquer my urologist. He had immediately recommended surgery as the ONLY option for a man my age (his words). When I told him that I was considering Proton Radiation he said, "I'll be rooting for you, but I cannot support that." I found a new urologist. No knock against the original one...I believe that he was being straight with me and had my best interests in mind. I changed because I don't want to feel uncomfortable in my own doctor's office. Well, we all have been uncomfortable at times in the urologist's office...I just didn't want my discomfort to start BEFORE the rubber glove is put on.
I did actually consider watchful waiting which I thought given my age and my stats was a viable option. However I have no idea if the insurance I obtain with my next job will be as good as the one I still have available through COBRA (I doubt it will be). I also thought of being fair to my next employer. What if I start a new job and several months later my PSA skyrockets and I need to take time off? I decided that all the external factors were lined up for me to treat my cancer now.
Some people need proof that the cancer is OUT of their body. Not me. I'm confident that for MY specific prostate cancer Proton Radiation will kill it. I asked many questions at my consultation and they were all answered to my satisfaction. My treatment choice was very specific to me and involved my confidence in the "cure", the mitigated side effects, my mental state, my insurance and my time availability. I should begin actual treatments at Loma Linda in late May.
July 2nd 2009: Well, I'm all finished at Loma Linda. I just completed the clinical trial for the Hypofractionated program (fewer treatment days, higher dose each treatment) which consists of 20 total treatments. I have been told by the doctors that (so far) patients in the clinical trial seem to be having similar or lessor side effects than with the current 45-day protocol. Those in-treatment side effects seem pretty minor. My only side effect was a difficulty starting urination. This has been somewhat managed with Advil.
As everyone has reported, the staff at Loma Linda is exceptional...this is a great place to "have to" be for a couple of months. I found housing close to the Medical Center...every day I walked to treatment and every day I walked to the Drayson Center to work out. In my spare time I went to the beach, to Joshua Tree Park, to LA and many other small, local trips. I also managed to do a lot of research and find a new job (even missed one day of treatment to fly for an interview...that day was made good at the end).
I'll check back in and report on my future PSA scores and I'll be interested to see if I get any of the delayed side effects that can happen with proton radiation. It will likely be years before we get a clear picture of just how effective this hypofractionated clinical trial was. If proton radiation can be as effective (and have minimal side effects) with just 20 treatments, it will be a huge boost for protons. By cutting down the treatment time, more men will be able to choose proton therapy (because it's easier to be away from home and work for 5 weeks than it is for 10-11 weeks)...The therapy should also be less expensive (certainly the housing costs are cheaper) and this will make Protons more attractive to more insurance companies.
If you are just diagnosed and reading this, and you do not think you can afford the time and expense of protons (but you like the success rate and minimal side effects) you should contact Loma Linda and see if the clinical trial may be right for you. Just be sure to ask a lot of questions (no matter what path you choose)...
Just received the results of my 1st PSA test since treatment. 3 months from my final treatment my PSA is 1.0. That is down from 3.01 before treatment. I had the Hypofractionated treatment at Loma Linda...that's the clinical trial where you have a higher daily dose, but fewer days of radiation.
Also had the cholesterol checked and it is down to 185 from 217...Got my act in gear after my diagnosis...changed my diet and stepped up the exercise.
Here are some further PSA updates.
Six months post-treatment it was 0.58. Nine months post-treatment was 0.381 and the one-year PSA was 0.534. Up just a bit there, obviously I'm thinking (and hoping)that is just a "bounce".
Roughly five months post treatment I began noticing some rectal bleeding. It got worse and during my 6th, 7th and 8th month post-treatment, the rectal bleeding was a daily occurrence. In April I decided to have a colonoscopy and the doctor also wanted to do argon plasma coagulation at the same time if he thought it would be beneficial after he took a look around. He decided to do the argon plasma and he informed me that about 30-40% of my rectum has radiation proctitis. Since then I have had no rectal bleeding. Still feeling great...a tiny bit concerned about that tiny spike in last week's PSA, but will check again in three months.
I have not had any erectile dysfunction, but it is a bit more difficult to obtain an erection (if that makes sense)...it just takes a little more effort. I have also noticed a lesser desire for sex. This pretty much hit me all at once approximately 5-6 months after the end of treatment.
Just a quick update with recent PSA readings. October 2010 was 0.519 and January 2011 was 0.436.
No current issues or side effects.
I have not updated in a while...
I had a couple consecutive bumps up in PSA that concerned me a bit, but my latest reading is my lowest since Proton radiation.
Just to run down the list, I had a PSA of .382 in April 2011, .457 in July, .626 in October, but just received a .366 PSA a week or so ago.
I'm now 2-1/2 years out of treatment at Loma Linda in great health and have no current side effects.
Nothing new...doing well with no symptoms or side effects. PSA December 28, 2013 0.298
Pretty much exactly 5 years to the day that I had my final treatment at Loma Linda. Just had a PSA test with a result of 0.344 (which is actually as high as my PSA has been in 2 years....it has pretty much stayed between 0.25 and 0.4 in that time)....No side effects at this time.
6 years out and PSA is hanging around 0.2. Moved to Washington state a year ago and for the past several months have noticed the relatively new Seattle proton center advertising heavily. Anyone in the Seattle-Portland area that is considering Seattle and has general proton radiation questions is welcome to contact me.
Still the same.... 0.2 PSA...no changes.
Dave's e-mail address is: firstname.lastname@example.org