My wife Sandy live in North Carolina, USA. I was 67 when I was diagnosed in November 2009. My initial PSA was 5.0 ng/ml, my Gleason Score was 6 and I was staged T1c. My initial choice of treatment was Active Surveillance. Here is my story.
I have had yearly physicals †“ with PSAs and DREs taken since I was 55. In 2006 my PSA rose from under 2 to 2.5. In 2007 it rose to 2.9 and in 2008 it was 3.2. Although my DREs felt normal, my family doctor referred me to a urologist who decided to do a biopsy. A 12-core biopsy showed no cancer. In 2009 my PSA had risen to 5.0 and another biopsy was scheduled. This time they found cancer GS6 in two cores out of 12 with <5% in either core.
I talked to surgeons and radiologists. All agreed I was a good candidate for whatever treatment they were personally recommending, but because there didn†™t seem to be a conscious on what would be best for me I decided to learn more about my disease and what my option were. Overall I was in good health, exercise regularly, and am semi-watchful of my diet. I have no sexual/urinary/bowel issues and was hesitant to take on a treatment that may create some.
Every doctor we talked to said-- based on my age (67 at the time) and the apparent slow growth of this early-stage cancer-- I would be a good candidate for virtually any treatment including active surveillance. While my lovely bride of 44 years would have preferred I pursue some form of treatment, she said it basically boils downs to my decision and she would support anything including active surveillance.
Well, it's been three months since my diagnosis and I've settled into Active Surveillance quite nicely I think. A big help was finding the PRIAS site and plan to follow their protocols to determine when/if I should seek treatment.
At my first 3-month checkpoint, my PSA has dropped slightly (5.0 --> 4.2). The 6-month checkpoint calls for a DRE and PSA test but the next biopsy (using the PRIAS schedule) isn't until the 12th month. My urologist wants me to get a biopsy at the 6th month checkpoint but I plan to tell him if my DRE and PSA remain about the same I want to delay until the 12th month checkpoint. I like my urologist and hope he can allow me to control the treatment of MY disease otherwise we might come to a parting of the ways.
A pleasant surprise is how well my wife seems to accept my Active Surveillance. Initially she wanted me to "do something", but after she accompanied me on consults with surgeons, radiologists, and other urologists, and talking to other wives of PCa patients she seems to understand that we can take our time to make the right choices.
All that being said, I think if I had to seek treatment today, I would seek Proton Therapy at Loma Linda, but hopefully that is a few years away.
In re-reading my last update I said my PSA went from 5.0 to 4.2, but after reviewing my medical charts I see that might not really be the case. After my November 2009 diagnosis of GS6, my urologist wanted to wait six months before another PSA. I had my yearly physical with my GP in January 2010 where they tested my PSA and it was 4.2, but it was a different lab that did the test.
By that time I had spent months talking to doctors (maybe †œbeing talked at by Drs† is more accurate, most telling me what they wanted to do rather than what I wanted to have done to me--which was NOTHING), reading others stories, talking to other survivors, listening to my friends and relatives until my life became a big blur of opinions, facts, and conjecture. What to do??
Then I remembered something that supposedly some wise man said, †A man with one watch always knows what time it is, a man with two is never sure.† I felt like I was a man with many, many watches.
While I didn†™t rush in for my †œcure†, I did do some things. I cleaned up my diet (no red meat, no dairy, nothing fried), added more veggies, took some supplements, and went to the gym more often. I was feeling great and expecting my April (2010) PSA to fall like the local housing market, but unfortunately the results showed it had risen to 5.6. I told my urologist that I wanted to continue on AS so he scheduled my next PSA in three months. Three months later, in July, he told me - although I felt good and had no ED or urination problems - my PSA was now 6.5 and he wanted to do another biopsy in October (2010). I begrudging agreed.
My urologist met with my wife and me in October to review the results of the biopsy. In his office he looked down at a report in his hand and with a serious look on his face he said, †œNone of the 12 samples showed any sign of cancer.† Odd, but at that moment I felt no joy, no relief, because I knew I still had cancer but they simply missed the tumor(s). †œWhat does that mean?† my wife asked. He said he felt I still had cancer but that it was small enough to be missed by the needle sampling. He wanted to check my PSA again in three months.
Perhaps I am one of those guys who have just had spontaneous regression, but I doubted it. I went home and started reading about negative biopsies that follow positive ones. Suddenly color Doppler ultrasounds, new enhanced contrast MRIs, and PEATS (prostate evasive anterior tumors) were on my radar screen.
In Jan 2011, my PSA had again risen to 8.6. I asked my urologist about these new types of tests and he said they could not see the small GS 6 tumors I had. (I wonder what his response might have been had he access to provide these tests.) I asked about the possibility of a anterior tumor that could be missed by a regular ultrasound guided biopsy. He dismissed that idea as †œvery unlikely.† I was not happy leaving his office, especially since the aftermath of the biopsy had not gone well. My previous two had gone very smoothly and after five or six hours the pain and discomfort was mainly gone. With this one, the pain and discomfort persisted for almost two weeks when I would sit down. I called the urologist and told him but he had no explanation.
Since January two things have happened. First instead of having to travel from NC to CA (Dr Bahn) or MI (Dr Lee) to find expertise in CD ultrasound, Chuck Maack informed me of someone only about 30 miles away in NC. Secondly our local newspaper ran an article about our local cancer center having installed an MRI machine with iCAD†™s VividLook software, the first in the state of NC. The article sounds too good to be true, but I might check it out if my PSA continues to rise. My goal is for my next biopsy to be one where the needle is guided by color image and only three or four samples will need to be taken.
However, not all this past year has been glum. Someone after reading my story on this site and noting my age wrote me and inquired if I was perhaps a Viet Nam vet (which I am) and that, if so, I might be eligible for a benefit from the VA related to AO (Agent Orange) exposure. Knowing that the VA has a long history of helping us vets, I gathered up my paperwork and headed for my local VA office. I submitted my claim and waited for my check. I received a letter saying that his benefit only applied to those who had †œboots on the ground† in Viet Nam which were mainly soldiers or Marines who were stationed there. Since I was on a Naval ship stationed in Viet Nam I could not prove that for any of the many times we were anchored a few hundred yards off shore in Da Nang, Hue, Vung Tao, or Cam Ranh Bay, that I actually left the ship and went ashore - so they denied my claim. I was only after assistance from a great organization called the BlueWaterNavy.org
, and John Rossie in particular, that I was able to attain a temporary benefit based on AO exposure.
What a difference a few months make. I found a new urologist who uses the VividLook MRI program and had the MRI done. There, clear as day, a tumor about 1cc could be seen in the right apex. Using this scan, he was able to do a targeted biopsy. These results, later reviewed by Oppenheimer labs, showed I actually had a GS8 tumor. Well I guess my two years of AS were over.
Currently I am scheduled to begin treatment in early October at UFPTI. I will be a part of a clinical trial for high risk cancer which consists of 8 to 9 weeks of a combination of low-dose chemo and proton radiation followed by 6 months of hormone therapy.
I†™ll post back on my progress.