Sept 2014: After my 50th birthday and while on my annual physical, my doctor asked if I wanted to get a PSA test. I said give me everything, it is good to check things out. After a couple of days, I got an email that my PSA came back high at 3.8 and she was referring me to a urologist. A couple of weeks later, I was at the Urologist appointment. In the meantime, I had another PSA done and it came back at 4.1. The Urologist said, we need to do a biopsy. I said okay. He sent me for one more PSA just to make sure it wasn't artificially elevated. That PSA came back as 3.9. He also had a PSA free done and it came back at 13%. So all basically the same. I got the first 6 core random biopsy. It came back negative. Urologist told me to have another PSA in 6 months.
6 Months Later (March 2015): It was March 2015, and I got another PSA. It came back 6.3 with a PSA free of 5%. Uh Oh, I knew this was not good. Another trip to the Urologist. He asked me if I had rode a bike or had sex before the PSA. I told him that I had not and followed the normal rules. He said we needed to do another biopsy. This time an 18 core random biopsy. That was done within the week and it was a little more brutal. That biopsy came back negative. Again, I was told to get another PSA in 6 months. He gave me a prescription for Levofloxacin 500mg that he wanted me to take for 10 days and have the PSA on the last day.
6 Months Later (July 2015): Right after my summer vacation, I started the Levofloxacin. I got my PSA on the last day. My PSA came back at 6.7 with a PSA free of 5%. So the Levofloxacin didn't do much. He told me my prostate size was 22 cc which is fairly small. So no BPH or prostatitis was found. I said "can't we just get the MRI? He said that was the next step, just to be sure.
2 Months Later (Sept 2015): It took a while for my HMO to approve the MRI. I went to a local facility that had a 3T MRI. After several days, the MRI report came back as negative. So nothing… for the last year I have read a lot and asked many questions on different prostate cancer boards. I was really concerned about the rising PSA and the low PSA free percentage. I was advised by one of the guys to go get a targeted biopsy from a world renowned doctor who happens to be in the same city. I figured, why not. I had to pay for it out of my own pocket since he doesn't take my insurance. He uses a Color Doppler Radar with the standard Ultra sound equipment. I went in and got ready for the CDU check. Unlike other Urologist offices, he has a monitor right in front of you that you can watch what he is doing and talk to you as you go. I knew that he found something as he was marking a dark spot on my prostate. He said, you have a spot right here in the left to mid transition zone. The color Doppler was bright over the top of it on the side by side screen. He said we should biopsy it. He then saw another area and recommend we check that one too. I said let's get it done. He showed me on the monitor that my 2 other biopsies only went in about half way. The spots were clearly beyond those. His needles went in much deeper. I could see them on the monitor. It was a bit more of stinging feeling per needle on this biopsy, but at least I knew he was getting to the spots!
A few days later, my pathology report came back. He found one spot that was Gleason 8 (4+4). 19% of the core involved. Well I was kind of expecting what he would tell me, but it still stung that he gave me the number of 8. I knew that was a little more aggressive. So there it is, after suspecting something was going on, he confirmed it. The PSA numbers just didn't make sense. I have now learned something important, always get a targeted biopsy. I basically wasted my time on the other random ones. The other Urologist told me to come back in 6 more months. I was worried I would be looking as a much higher PSA by then. It pays to read a lot and ask questions from those who have been there.
For now I am waiting on the 2nd opinion for the pathology report from John Hopkins. After that, I will start the process to figure out what I want to do and where.
I just got my 2nd opinion from Dr Epstein at John Hopkins. Unfortunately I was upgraded from an 8 to 4+5=9. Time to get aggressive with this aggressive cancer. More to come.
I started ADT2 on December 10th. PSA nose dived after 2nd shot down to 0.89. I will be on ADT2 for 18 months. I start High Dose Radiation Brachy on Feb 29th at UCLA. Looking forward to getting that done. IMRT starts late March for 4 or 5 weeks. Still working on that planning.
I have completed HDR Brachytherapy and IMRT. I am currently on ADT2 (Lupron and Casodex). I had bad reaction to IMRT with diarrhea daily for almost 5 weeks. They changed my treatment plan to lessen radiation to lymph nodes. I start adjuvant chemotherapy in early July. I am trying to throw everything at this so it never comes back. My Medical Oncologist has been great. Until next update. -JR
I finished my primary treatment of HDR Brachytherap, IMRT, 18 months of Androgen Deprivation Therapy (ADT 2 of Lupron & Casodex), and lastly Chemotherapy (Taxotere). Overall the ADT was a grind as that and all other pills make you fatigued. You just hang in and do it. Exercise does help but other health issues prevented me from doing much of it. I feel as if I went to war and came back with battle scars. My radiation enteritis in my small bowels is a pain. I have to watch my eating and make sure I use Miralax twice daily and some other stool softeners to help my food pass through the damaged area. I am hoping the dysuria subsides. I take Flowmax twice a day to help that issues. It has only been one month since I finished so I will update again in six months. Good luck.
One year since my last update. My PSA went from 0.03 to 0.09 to 0.19 to 0.23 so it has been climbing but was flat on the last test. I know I still have a prostate so I will make PSA. I had some rectal bleeding so I went in for a colonoscopy and I was diagnosed with mild Radiation Proctitis. My Radiation Enteritis seems to have calmed down a little and I don't have as much constipation attacks. The Dysuria is a burning while urinating and I am still on Flowmax. At least that is manageable. My Medical Oncologist thinks I got a little fried with the external beam radiation. I feel that too. I recommend to try and go to a center of excellence or an academic medicine facility for your radiation as a local facility may just not do enough treatments. I went local for convenience. It could be that I may still have had these issues, but maybe not. So for now, cancer control is good! PS: Go to a support group, it is needed for your mental wellbeing.
For this update, I am happy to report that my PSA is steady so the cancer control seems to be good. The bad news is the radiation enteritis has given me issues and I just got out of the hospital from a small bowel obstruction (SBO). I recently remember telling a friend that it is not the cancer that sucked for me, but the treatments. Those seem to have given me a new normal that gives me good days and bad days. The SBO was a bad day... or actually bad 3 days up to the ER visit and then 48 hours with a nasal-gastric tube. The dysuria has not let up and I am on flowmax twice a day still. It has been 3 years since radiation treatments and I still have these issues. I know that chronic issues with radiation seem to happen to about 2 in 10 men. I was supposed to be on a 6 month follow up cycle with my oncologists but he kept me to every 4 months since I had some bouncing around of my PSA this year. I see him in another month so I will have an update then. Onward. -JR
Overall I could be happier... although my cancer control seems to be good, I have taken a step backwards with the side effects from radiation. Since my last update, I have had bleeding while urinating (gross hematuria). Because of that, my onc sent me to UCLA to their Hyperbaric Oxygen Therapy Chamber. It was a long 40 days of treatment (2 months M-F). I thought I had some help as my Dysuria (burning sensation while urinating), and I reduced my Flomax down to 1 a day, from 2. That lasted until March when I had a lot of bleeding daily, many times a day. I decided to go see one of the top UCLA urologist and he decided to do a cystoscopy. Yes, it hurt. Especially since I already have burning in the urethra. However we were able to visual see that I have bleeding and clotting around my bladder neck and upper urethra. My bladder was good. So he basically said he couldn't do anything about it unless it stops me from urinating or if I bleed 7 days straight! He said it will get worse over time. So now I just wait on that. The other issue is that starting 6 weeks ago, I have on-going diarrhea problems. I am under the care of a GI doc, and he states it is related to the gut dysmotility that is slowing things down which is creating constipation, and the diarrhea is from the overflow around it. All very concerning as there is another spot that will continue to get worse over time. So it is good news and bad news. I would say if you have to have radiation, go to a world class facility. Use anything that can help prevent damage (such as spaceoar). Until next time... -JR
I am 5 years out from treatment. I still have on-going side effects of radiation (from external beam radiation, not internal brachy therapy). I also still have occasional bouts of small bowl motility issues, but lukcily those are less frequent. PSA is staying low and steady so I still am lucky with the cancer control. Onward!
I am doing better overall, and I finally after 7 yars have been moved to yearly check-ups. I still have appointments with other doctors to deal with the radiation side effects. They don't seem as bad overall, however I can urinate blood randomly several times per month. Eventually I will need surgery to repair my urethra. Since my last colonoscopy a few years ago, I developed 4 more large polyps that I had to have removed. They were all in the radiation field. Now I am on a 3 year colonoscopy scedule. Thanks. Take care.
Low PSA. On an annual cycle of check-ups with Urologic Oncologist. Cystoscopy shows radiation damage to the bladder neck and upper urethra. Deterioration has continued in comparison to a cystoscopy 3 years earlier. Weekly events of gross hematuria while voiding my bladder. Researching micro-surgery specialist to see if repair is possible.
CaliJR's e-mail address is: john AT john-marcy.com (replace "AT" with "@")
