I have had yearly physicals - DRE (Digital Rectal Examination) since I was 55. Three years ago (2006) my PSA rose from under 2 to 2.5. In 2007 it was 3.2 and in 2008 it was 3.6. 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. Last month (November 2009) my PSA was 5.0 and another biopsy was scheduled. This time they found cancer in two cores with < 5% in either core.
In the past month I have talked to surgeons and radiologists but haven't come up with a treatment plan I can feel comfortable with. Overall I am in good health, exercise regularly and am semi-watchful of my diet. I have no sexual/urinary/bowel issues and am hesitant to take on a treatment that may create some.
Every doctor we talked to said- based on my age (67) 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 prefer I pursue some form of treatment, she says it basically boils downs to my decision and she will support anything including active surveillance.
My next PSA and DRE is scheduled for April 2010 and based on those results I will reconsider my options.
I would like to hear from other WW'ers specifically on area of diet and supplements they feel has helped in keeping their PSA/cancer in check. [Some basics are here - Comprehensive Management Of Prostate Cancer By Charles E. Myers, M.D: a light-hearted commentary is here - Cure du Joure]
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.
Well, I just got a request to update my Yana page, has it really been a year already? Weel, it's been a year that has really flown by, indicating I must be having fun.
In re-reading my last update I said my PSA went from 5.0 to 4.2, but after reviewing my medical chart I see that might not really be the case. After my November 2009 diagnosis of GS6 my uro 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. [The point that Joe makes here is an important one. With more than 20 manufacturers making PSA test apparatus producing results that are not directly comparable it is important to ensure that all tests are from the same laboratory using the same equipment - see PSA 101.]
By that time I had spent months talking to doctors (maybe "being 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 this site and countless others, 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 "cure", 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 PSA to fall like the local housing market, but unfortunately the results showed it had risen to 5.6. I told my uro I wanted to continue on AS so he scheduled my next PSA in three months. In July he told me - although I felt good had no ED or urination problems - my PSA was now 6.5 and he wanted to do another biopsy in Oct. 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, "None 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). "What 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 in three months.
Perhaps I am one of those guys who have just had spontaneous regression. 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 uro 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 large anterior tumor that could be missed by a regular ultrasound guided biopsy. He dismissed that idea as "very 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 uro and told him but he had no explanation.
Since Jan 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 (Dr Eskew). Secondly our little local cancer center has installed an MRI with VividLook software, the first in the state of NC. The press copy 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 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 "boots 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 Rossi in particular, that I was able to attain a temporary benefit based on AO exposure. Ironically this benefit has been used more toward my wife's coronary care expenses than my prostate related expenses since I am only on AS.
I'd love to hear about more CD ultrasound and enhanced MRI experiences. [Jon Nowlin is a font of knowledge on these subjects.]
Well it's been a year since my last update and it's been an important one regarding my PCa.
I continued test my PSA every three months as part of my A.S. regimentation and each test result was greater than the last. In April 2011 it rose from rise from 8.6 to over 10 in three months. With that rise, I felt my days of A. S. were now in my rearview mirror. The lead of a local urologist with a CD ultrasound turned out to be a dead end, so I considered going out to Dr. Bahn in California when our local paper ran a story about a new MRI scan for prostate cancer called VividLook was available in our local hospital. I called the hospital and found the name of a local urologist who was using this form of MRI scan. I had the VividLook MRI done in July, and low and behold, there was a 1cc tumor in the right apex as clear as day. The radiologist's report said from its location it seemed to be confined to the prostate.
Armed with pictures from the MRI as a guide, my new urologist was able to accurately biopsy the tumor. Six cores came back showing GS6, GS7 (4+3), and GS8 (some cores up to 90%), which I had verified by Oppenheimer's lab. I had learned enough during my two years on A.S. that I knew I needed treatment. I had also decided that after talking to guys on this site and my local UsToo group that proton therapy was the best fit for me. Since UFPTI was less than 500 miles, I opted to send my files to them. After the consultation and pre-treatment preparation was completed, I started my treatment in early October.
Because most to the men treated at UFPTI has low or intermediate risk cancer and I has high risk (defined as GS8 and above), I was given the opportunity to get a treatment that was more aggressive than what is normally received at UFPTI. I would receive 45 proton treatments (compared to the normal 39 treatments) and while I was receiving the proton therapy, I would also be receiving a weekly low-dose infusion of chemotherapy. After the protons and chemo, I would then be put on six months of hormone therapy.
I completed my 45 treatments in mid December and was back home in NC by Christmas.
The low-dose chemo I received each week was much kinder to the human body than the regular full strength chemo. Each Monday I got to set in my lounge chair for three hours as the chemo slowly drips in, as I watched TV, listened to my MP3 player or chatted with other chemo patients. Also with this low dose form of chemo, I didn't get sick or but I lost about half my hair.
Nevertheless this chemo/proton therapy was not without its "challenges." For three months I had no appetite and my digestive system was very, very sensitive. While the other guys on the proton-only enjoy virtually no symptoms of any sort, I had a lot of intestinal pain and cramping. I got by on soft food, liquids, pro-biotics, anti-gas tablets, high fiber supplements and not getting more than 50 feet from a restroom for the first four hours of my day.
At the end of my chemo/proton treatments, was down to 3.1 and I began my hormone (Trelstar) injections. I opted for six one-month rather than two three-month shots or a single six-month shot. I had heard the side effects were less with the lower dose injections. I am halfway through my treatments (3 shots) and so far I am very pleased with my choice. My energy level is fine (4 days/wk at gym) and the "hot flashes" have kept me "toasty" this winter.
My appetite which was non-existent during treatment, has returned and I have regained the 4 kgs I lost during treatment. My digestive system seems to slowing getting back to normal. Occasional bouts of "rectal urgency" keep me close to the bathroom especially in the mornings.
Halfway through my hormone treatment, my PSA is now down to .5. While .5 normally would be a great non-surgical post treatment reading , I have no way of knowing how much of the decrease is due to the hormone injections rather than the chemo/proton treatment.
I'm looking forward to my six-month checkup at UFPTI. With three more months of HT ahead, I won't know my final PSA level until later this year.
Well it's been 15 months since I've finished my proton therapy at UFPTI and 9 months since I finished 6 months of subsequent hormone (Trelstar) therapy.
Over the past 15 months my the frequency and urgency of bowel movements have greatly improved. I still have 5 to 6 movements a day, but the stools are much firmer and the urgency is greatly reduced. I hope that a year from now I will back to pre-treatment frequency (once or twice daily). It has been 9 months since I finished my monthly hormone shots, and the only residual side effect I have is the 10kg I gained and can't seem to lose. I was very pleased to see that after about 5 months, my libido was completely restored to pre-treatment levels. I continue to have absolutely no incontinence issues.
I have my PSA tested every three months over the past 15 months and it has varied between .2 and .5 with the latest being .3.
Overall I have been very pleased with my choice of proton therapy and the followup I have received from the Drs and staff at my 6-month and 1-year checkup at UFPTI.
Well it's been more than two years since my montage of chemo/protons/hormones for my GS 8 PCa. My PSA, which was 8.9 at the beginning of my therapy at UFPTI, is now 0.1. I still continue to have no side effects other than a very infrequent incident of rectal urgency. I can say at this point in my life that PCa is no longer a part of my day-to-day life. I am reminded of this each time a friend or acquaintance will ask me, "Joe how are you doing?" I used to respond by saying "fine" or "Ok" but I could see from the look on their face, that answer was not sufficient. The question they really wanted to know the answer for was, "Joe, how is your cancer doing?" At that point I realize, Oh Yeah I have cancer--I forgot. Then I tell about them about my low PSA, lack of side effects, and sometimes toss in a commercial for Proton Therapy. I can see from their expression this is what they wanted to hear about. I notice that only men ask me about my "health" these days. I guess curious women must wait to get my wife alone to ask,"How's Joe doing?" Since I no longer think about my PCa, I think I must be doing well.
It's been almost four years since my GS-8 (3 cores > 80%) was treated with proton therapy by the wonderful staff at UFPTI. My treatment followed two years of active surveillance which first revealed I had small amount of GS-6 (2 cores < 10%). The "rectal urgency" that I experienced the first two years is pretty much a thing of the past.
In retrospect I often wonder if my small amount of GS-6 developed into a large amount of GS-8 during my two years of AS, or the GS-8 was there from the beginning and the two yearly biopsies simply missed it. Regardless, I am glad I was diagnosed with GS-6 because two years on AS gave me a lot of time to talk to guys and do my research and ultimately find proton therapy.
At UFPTI, because I had a GS-8 tumor, I was allowed to volunteer for a special 5-year clinical trial where low-dose chemo is given every week during the 9-week radiation sessions. I'll be interested in learning the results of that study in the future.
I'm still in pretty good health. I still visit a gym 3-4 times a week and take a supplement called Pomi-T. If you have any question feel free to contact me.
Well seems like another year has passed. I continue to be virtually symtom free (about once or twice a month I have a bout of "rectal urgency." I still think it is related to receiving chemo infusions during my 9 week RT.) My PSA continues to be low (0.1 or 0.2). While my proton docs at UFPTI are reluctant to say I'm cancer-free, the VA had declared me "cured" and terminated my agent orange benefit. Well, it was great while it lasted. I'm still waiting to learn any results from the low dose chemo clinical tral I was in back in 2011 at UFPTI. I've been told early results might be available by year's end. Regardless, I'm very pleased have chosen proton therapy at UFPTI.
The past 12 months certainly has been an interesting time-both for the country and me. After my initial treatment back in 2011, my PSA has remained in the .1-.2 range. Well it looks like those times are over. Over the past 12 months, my PSA has gone from .1 to 3.7 last week, with a current PSADT of about 4 months. I had read that radiation oncology recurrence is defined as 2+nadir. Since my nadir was .1, my biochemical failure level is defined as 2.1. I have been diagnosed as "No Longer in Remission" by medical oncologists in two of the top Cancer centers in NC.
Knowing the excellent support we Vietnam Vets get from the VA, I took my two doctors reports to the VA and they examined them and me and decided these two medical oncologists from these two Cancer Centers were mistaken and that I was still "in remission" and hence did not qualify for disability again. Oh well, could the VA be right and those dumb oncologists be wrong?
While my PSA is in single digits I feel no great need to start ADT. I was on 6 months of Trelstar following my initial proton treatment and did not like the decrease in my quality of life due to the side effects. I really don't mind delaying the start of ADT after reading that Harvard School of Pubic Health study that found that delaying ADT for up to 3 years for men in biochemical failure had no effect on mortality. I plan to wait a few more months and then see about having a Choline Pet Scan or perhaps one of those new Axumin Pet Scans, which should give me a better understanding of my cancer.
I look forward to posting my next update next May.
Joe's e-mail address is: jholtslag AT nc.rr.com (replace "AT" with "@")