I was diagnosed in August. I have had frequent urination problems for 20 years, I had become quite used to it. I was checked out in my early 40s and was negligent in not getting PSA tested again until I was 54. My PSA was 9.7 , so scheduled a biopsy. 6 of 10 cores positive, Gleason 7 one side; 8 the other. Did MRI, bone scan , Could see no metastasized cancer. Staged at T3aN0M0.
Found this site and googled a lot. Decided on checking out Proton treatment in Japan. Went to Chiba NIRS center and they have a new heavier Proton beam, with a shortened treatment program (5 weeks) but unfortunately it is not built for American width, the beam could not quite reach to the other side of my prostate. So I also checked out the Tsukuba, University Hospital proton beam treatment. I decided to go there after 6 months of ADT (Lupron and Casodex) treatment. They explained the PSA should be at its lowest after 6 months treatment and my enlarged prostate will shrink. And this is the best time to do the radiation.
Unfortunately, the Japanese National Insurance doesn't yet cover Proton treatment so it will cost me about US$30,000. But after much research and the fact that my father suffered after Radical prostatectomy and comparing the standard radiation side effects compared to Proton , I am willing to pay.
Also considered HIFU but told cause of T3 staging not a good choice.
Compared to the famous Loma Linda Proton treatment there seem to be two differences:
1. no balloon,
2. they insert three pins in the prostate two weeks prior to treatment.
Have been on the ADT for two months. I have experienced some hot flashes. Now mostly just worried about other side effects. Am jogging which I have been at for a couple of years again and have changed my diet. No meat, very little butter or other oil other than Olive, lots of Fish and Soy. Luckily from what I understand the Japanese diet is highly recommended to fight PC.
I have read many things on the web about calcium and PC. But the ADT depletes calcium and supplements are recommended, I was at one time using a lot of Tums etc, for frequent heartburn and have had a kidney stone, thus I am inclined to believe a correlation between calcium and PC growth. I do not want to avoid calcium when supplements are being recommended by some during ADT. So a little confused still about this. I also like cheese :)
Emotionally, it took a good three weeks to start getting used to the whole having cancer idea. Google helps and sometimes hurts. I read some technical studies which constantly referred to "5 yr survival rates" for T3a cases. this did not make me feel to good. This site and one mentor in particular have helped quite a bit. It was a shock, even with my symptoms, didn't see myself as this old already. I feel good now but notice every little body ache and pain and wonder if it's something serious. I am also afraid to push myself too hard physically with the ADT bone density loss; cholesterol and heart issues. So I have set up blood and bone testing for every 3 months. It is recommended I stay on ADT for at least 2 years. I am more worried about the ADT than the radiation. Guess I have to get used to that too.
Thanks again for this site, seeing the survivors 10+ years is encouraging.
I had marker pins put in for the Proton Therapy two weeks ago. This was slightly worse than the biopsy, but the pain was very brief each time one of three pins was inserted into the prostate.
My PSA in 6 months of Lupron injection and 50 mg Casodex is down to .02. Side effects are minimal, I am maybe a little more tired and a little flabbier though weight has not changed. I have not been exercising as much as planned, I intend to rectify this.
I begin Proton Therapy today in Tsukuba, Japan's University Hospital. 39 treatments scheduled 5 days a week. The prep for the radiation includes the pins, an MRI, a CT scan and a mould made to position the body. That prep was done two days ago except for the pins. All told the pins took an hour max. and other prep maybe 1.5 hrs. Only pain was getting the pins put in. The pins are markers and they do not use the infamous balloon that Loma Linda does, they claim to have better aim (hope so).
Feel fine today.
It is now about 6 months post Proton, still on Lupron/Casodex. My PSA has been no higher than .02 since before radiation began. I am therefore trying to decide when to quit the ADT. The standards here are 2 - 3 years, after radiation . My research tells me many others are opting for intermittent ADT. I am seeing one more doctor soon before deciding to stop. There is no indication the cancer ever spread.
My cholesterol is a bit high but hasn't risen much over one year on ADT. But I have cut out almost all meat and eggs from my diet, lots of fish and soy-tofu etc (easy to get here). My liver function and other blood test are in normal ranges.
My side effects continue to not be too bad. I have muscle aches, trouble sleeping, some Hot flashes. But all manageable. There is some evidence of bone density loss I tried Biophosphonates, were fine at first but then developed a lot of pain in my shoulders and neck as well as ringing in my ears so I quit those. I am able to jog - slowly and golf. And work. May be having some memory issues but really might just be normal aging.
All in all doing real good.
I have discontinued all ADT after over 12 months undetectable, under .05 PSA. I stopped ADT Mar 28, feeling more energy. Ran a 10KM race (slowly).
Maintaining diet, almost no meat , dairy. Lots of Soy, tofu and veggies. Waiting for the testosterone to come back. By the waythe doctors over here recommended 2-3 years after radiation on ADT, but my own research convinced me this could do more harm then good.
If the C stays away then my suffering from Proton and ADT has been pretty minor.
In response to a reminder, Steve said:
Thanks for all your work, I will be updating again in 2 weeks after the next PSA test.
I am now about 14 months post ADT, which I was on for 18 months Lupron/Casodex. Since quitting ADT my PSA rose steadily from .02 to .33 (3months ago) I had a PSA test yesteday and was very happy to see it drop to .22. I am hoping it levels out and this is my nadir.
I have read that post radiation having a .2 or less PSA is a very good sign for long term remission. Because I did ADT for 12 months after radiation (also 6 months prior to) I could not really see how effective the proton radiation was until now-14 mo after ADT.
I have continuing ED issues but definite improvement somewhat approaching normalcy.
I am suffering daily headaches but this has been an issue all my adult life, may have been worsened by ADT but no way to know that.
Ran a 10 km race a month ago, much faster than a year ago I attribute that to my tetstosterone returning, all my chest hair is back too.
It is now , 15 months since I stopped ADT . My psa rose from .02 to .33 ( In about 1 year), the dropped to 0.02. Only side effects now are some ED but is chemically corrected.
Now 16 mos. since stopping ADT . My psa is .31. A very good sign.
Almost back to normal in all areas . I am happy I decided to end ADT after more than 12 mos. with a psa below .05. The drs. Recommended 3 years on ADT I only did 1.5
A quick update My PSA remains low about .25 lately, rose up to .4X but has not risen above that. Now done with all tx and meds since Mar. 2011
Steve's e-mail address is: email@example.com