My Story
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Last PSA from |
Personal stories |
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01.09.2009 |
2.90 |
26.08.08 |
My wife Stephanie and I are retired, living in the Indiana Dunes along the southern shore of Lake Michigan.
PRE-10/2009:
My PSA had consistently been in the high 2's, DREs were always normal, showing only †œslight enlargement.† I had experienced some minor urination problems, frequency and difficulty starting, weak flow...but resisted taking medication due to the "floppy iris" side effect they cause if you have to have cataract surgery. (In April and November 2009 I had surgery on both eyes; my urinary problems have almost all disappeared on their own since then). |
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16.10.2009 |
4.60 |
24.09.09 |
My PSA took a jump to 4.6 and I was referred to a urologist who scheduled a biopsy in October, 2009, the day before my 67th birthday.
The urologist took way more samples than seem to be the norm- 26 cores. All cores were benign except for one of two from Right Lateral Base, 5%, Gleason Score 3+3=6, Type T1c.
The urologist gave me the news, briefly discussed options, told me to look at 2 web sites and gave me a rather outdated book. He scheduled a follow-up visit asking me to bring questions. I (of course) did not stop there; Stephanie and I did a lot of online research, finding yananow.org, USToo, etc. This research brought up questions about the biopsy for which I had not been given answers. (I had made the grievous error of not demanding a copy of the Bostwick Lab report). I started to have reservations about the urologist when his response to my called-in inquiries was to provide the data, then tell me "This is way more info than you need, read the book I gave you".
I reached out to Northwest Community Hospital in Arlington Heights, IL (some distance away, but we had ties to it due to family members). They have a †œProstate Nurse Navigator† who has proven to be a tremendous help, answering all questions we have, and keeping in touch via email. Through her I set up an appointment with a radiation oncologist for a second opinion. The oncologist was very impressive, took a great deal of time to discuss my situation and options. He left decisions up to me, but was supportive of my leaning toward Active Surveillance.
The return visit to the urologist proved to be better, more reassuring. He readily gave me the lab/visit reports, answered all my questions, and to the "What would you do if it were you?" gave an unhesitating: Active Surveillance. His recommended plan is to have PSA/DRE every 6 months, and a biopsy in 2/5/7/10 years, unless conditions change enough to consider other options.
And that is my decision: Active Surveillance with my next scheduled PSA/DRE in April, 2010. I am comfortable with this decision mainly due to my relatively low PSA, Gleason only 6, and only 1 of 26 cores showing cancer of only 5%.
This was a "wake-up" call for me. I have tried to take good care of myself (thanks in good part to Stephanie's insistence). I take medication for high blood pressure, cholesterol control, and type 2 diabetes, drops for glaucoma. I also take daily vitamin/supplements: a multivitamin, C, D, E, calcium, fish oil and flaxseed oil, aspirin. We keep to a fairly low fat diet, fish a couple of times a week, very little sugar/salt. Where I has slacked off is in not exercising enough.
Interestingly, I feel the biggest help in finding the wealth of information on the web, and reading all the stories on YANA of others facing this, is that it stopped cold my initial slide toward depression (a past problem for me). Instead I feel empowered and encouraged. |
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09.04.2010 |
3.20 |
09.04.10 |
DRE still normal, PSA down to 3.2 With my commitment to Active Surveillance I also promised myself to improve my overall health. My strategy: keep my low-sodium, low-sugar diet, minimize fast food and junk-food snacks, change supplements a bit. I eliminated flaxseed oil and added Vitamin D3, Costco brand †œProstate Health Complex† (Saw Palmetto, Lycopene and Pumpkin Seed) and Agro Labs †œNaturally Pomegranate† (Pomegranate and Resveratrol extracts). AND, I greatly increased my daily exercise by strapping on a pedometer and upping my daily step count from @3,000 to @ 10,000.
I am happy with the drop in PSA (which may or may not be due to these changes) and these other health improvements: fasting blood sugar down 20 points, A1C lowest in well over a decade, HDL cholesterol up 8 points, triglycerides cut in half, resting pulse down 6 and weight down 7-8 pounds. I feel great! Should any treatment become necessary down the line, I'll be in better health to face it. |
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08.10.2010 |
4.40 |
08.10.10 |
I just celebrated my 68th birthday and 1st anniversary of being a Prostate Cancer Survivor. DRE still normal, PSA is at 4.4, up from April, but still below the 4.6 at diagnosis. With my †œvery low risk† prostate cancer parameters, I remain happily committed to Active Surveillance.
My strategy remains the same. I am keeping up the 10,000 steps (with my two dogs) daily, and continue to feel better than I did in the years BC (before cancer). I am extremely grateful to Terry Herbert for YANA, and to all who share their stories.
I am happy to see the increased awareness of, and support for, Active Surveillance: (NCCN guidelines, new book †œInvasion of the Prostate Snatchers,† etc.). I feel that AS is the right choice for ME; I am enjoying better health and a happier, more-focused life since diagnosis, thanks to the †œwake-up call† it gave me. What great side effects! |
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25.04.2011 |
4.40 |
25.04.11 |
The good news is my PSA remains the same as last test 6 months ago, 4.4. My urologist was pleased with that, and seemed totally unconcerned about my PCa, complimented me on my overall good health. But........
From urine test done this morning in his office, he reported I have "microscopic" evidence of blood in the urine. I joked that with my color deficiency, I'd never notice it - he said he couldn't see it on visual inspection either. He said probably 99% not something serious BUT to be sure I will go for CT scan to rule out kidney problems May 18, and then cystoscopy to check my bladder on June 3rd.
JUNE 2011:
After completing a CT scan and cystoscopy, I am happy to report that my microscopic hematuria (don't you just HATE having to learn all these scary terms) is †œnothing to worry about.† The CT scan indicated presence of gallstones (no symptoms=no worry) and simple kidney cysts (ditto=not to worry).
So add in very low risk PCa, I now have a trifecta of worrying things not to worry about.
JULY 2011:
Happy to be another of the YANA community to join the myProstate brotherhood. Many, Many thanks to Terry Herbert for all his work over the years on our behalf! |
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09.11.2011 |
3.80 |
09.11.11 |
A week of good news. First came the word that Terry Herbert has restarted the yananow.org experiences pages, then my latest PSA test results.
I am now two years out from my diagnosis in Oct, 2009. My urologist had scheduled a PSA test and biopsy for this month, but travel plans surfaced for the date of the biopsy. I called my urologist's office, cancelled the biopsy, and was told I could call them for the PSA results.
Biopsy? I was having second thoughts. I really did not see the need to subject my poor little prostate to another 26-core invasion. I remain asymptomatic, continue my daily exercise (still averaging just under 10,000 steps daily), only change to diet/supplements was discontinuing VitE, and remain in great health, with diabetes and BP well under control. Only if the PSA test came up with a surprise would I reconsider.
Surprise? I just got off the phone with the urologist's nurse. My PSA? After two tests (6 months and 12 months ago) that were both 4.4, my test this week: 3.8.
So, I happily continue on my Active Surveillance course, looking forward to another visit with our first grandchild, our now two-month old grandson! |
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03.10.2012 |
4.80 |
28.09.12 |
This is a partial report as I approach my 70th birthday. For my annual check-up today I had a battery of tests. General health: doing great! Not that this year was without incident...non-prostate: a nasty A-fib heart problem in January put me in the hospital briefly, but tests showed no underlying problems, and it resolved itself with no intervention other than change in meds, and there has not been any recurrence.
But on to Prostate Cancer. I will see my Urologist later this month and report on that visit, but my regular Dr. advised my PSA test was 4.8 (test on 28/9/2012). True, this is up from last year's 3.8 - but I prefer to view it as only a 0.2 increase from my PSA when diagnosed in October, 2009. When you calculate the doubling time for 4.6 to 4.8 in three years four days you get 49.08 YEARS! That's the way I see it, and I am happy to be continuing on my Active Surveillance path. |
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26.10.2012 |
4.80 |
28.09.12 |
A quick update after my Urologist visit. All good news. No blood in urine. All normal result of DRE. The Urologist agreed that I am in the †œvery low risk† category, is totally supportive of continued Active Surveillance, but he would still like to do another biopsy; I don't see the need. We reached agreement to re-address this after my next scheduled PSA/DRE in six months. I asked what percentage of his patients are following Active Surveillance. He answered that he did not know the percentage, but would guess more than any other urologist in Indiana...and most telling, †œthat includes my partner, who is much more eager to go right to surgery.†
Feeling good, very happy that I chose Active Surveillance, great that only side effect is an increased appreciation of life. |
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27.04.2013 |
4.60 |
22.04.13 |
Continued good news: My current PSA is 4.6, down from 4.8 six months ago - so it is now the same as when I was diagnosed in Oct '09. At today's visit with my urologist he said my DRE was "smooth, no lumps" and he is happy to have me continue with Active Surveillance. He still wants another biopsy done; but he realizes that I don't feel it is necessary: "Don't worry, I'm not going to chase you down!" he laughed. My next test/visit will be in October - on my 4th "anniversary" of diagnosis.
I continue with same plan: watch diet, supplements I have mentioned previously (with the recent addition of flax seed in my daily cereal), and even increased daily walking with my dogs. Probably due to the increased exercise, my family Doctor has been able to lower both my diabetic and blood pressure meds. |
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26.10.2013 |
10.50 |
21.10.13 |
It is now four years from original diagnosis. Had my 6 month checkup, PSA/DRE yesterday, but not the best news for my 71st birthday. My PSA took a big jump up to 10.5 (quick recap: 4.6 at diagnosis, all readings since lower except 4.8 one year ago, 4.6 six months ago).
DRE: no problems. Symptoms: minimal - a bit weaker flow and a slight increase in frequency of urination. My urologist wants to rule out infection as a cause of the rise, so has prescribed a round of antibiotics. We agreed on next PSA test in just 3 months, and per the Dr. see what that shows, and have the †œBiopsy? Treatment? Path forward Discussion.†
Still walking the dogs, feeling great, enjoying spectacular fall colors. Best to all! |
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31.01.2014 |
9.10 |
23.01.14 |
Still on track for continuing Active Surveillance. After the unwelcome uptick in PSA three months ago to 10.5, this week it was down to 9.1, DRE remains normal. Given my mild BPH-type urinary problems (weaker stream and difficult starting flow) my urologist Dr P prescribed Flomax. Both Dr P and I are comfortable with staying on AS. Per Dr P "Let's go back on 6 month schedule, see you in June."
Then more good news from regular meeting with family Dr the following day. All test results excellent, my diabetic A1C by far the lowest since diagnosis well over a decade ago; Dr Family complimented me (as did Dr P) on keeping up the exercise and (thanks go to Stephanie!) diet, has lowered my diabetes and cholesterol meds.
Glad to share good news at the end of this near-record cold and snowy January in the Indiana Dunes.
Best to all, Roger |
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28.07.2014 |
6.80 |
23.07.14 |
Just a quick note, written in November 2014 - I have now earned my STAR as a 5 year survivor. At my visit in July, all was well, my PSA was down, and I will continue on Active Surveillance. My next PSA test and Dr visit will be early February. |
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09.11.2015 |
7.10 |
01.11.15 |
My latest PSA is up a bit, but not alarming. DRE continues normal, an MRI done last week showed nothing significant. I am in excellent overall health, and continue Active Surveillance. |
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17.06.2016 |
5.70 |
09.06.16 |
Good news continues. My PSA is down once again. I continue Active Surveillance with Doctor's approval. Per him, "You know, you won't have anything to worry about well into your 90's."
Make that won't have to worry about PCa... my heart gave me another scare last month, but I have recovered well and send best wishes for good health to all. |
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02.07.2017 |
6.20 |
11.01.17 |
Just a quick note to say I continue to have no prostate problems. Active Surveillance is definitely the best course of "action" for me. |
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07.12.2018 |
6.00 |
07.11.18 |
My PSA remains very constant, urinalysis normal, MRI showed "nothing significant, virtually unchanged from last one several years ago." Urologist said I was doing great for a "very young 76 year old," happy to have me continue active surveillance. |
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09.12.2019 |
7.60 |
09.12.19 |
My PSA was up a bit earlier this year, then down slightly now. If you calculate the "doubling time" from when I was first diagnosed 10 years ago to now: over 14 years! I happily continue on Active Surveillance. Happy Holidays to all. |
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23.11.2020 |
9.95 |
17.11.20 |
2020: my PSA went up to 12.5 in August, then back down to 9.95 in November. I visited my urologist Nov 23: DRE normal, he supports having me continue AS, my overall health remains excellent. I wish you all the best in these troubling times. |
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24.05.2021 |
8.36 |
20.05.21 |
I continue active surveillance. My urologist and I are both happy my PSA is back to going down after a small spike last year. Best to all. |
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06.01.2023 |
6.80 |
06.01.23 |
Very happy that after a bit of slight up/down my PSA now down to lowest in @5 years. At 6.8 my PSA is not much higher than the 4.6 when diagnosed Gleason 3+3=6 in 2009. |
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