Walnut

Subscribe to RSS Feed for recent updates
Subscribe to RSS Feed for recent updates

YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

 

SURVIVOR STORIES  :  DISCUSSION FORUM  :  WIVES & PARTNERS  :  TELL YOUR STORY  :  UPDATE YOUR STORY  :  DONATIONS  :  TROOP-C

YANA HOME PAGE  :  DON'T PANIC  :  GOOD NEWS!  :  DIAGNOSIS  :  SURVIVING  :  TREATMENT CHOICES  :  RESOURCES  :  ABOUT US  :  MAIL US

 

  SILVER  
This member is a YANA Mentor This is his Country or State Flag Member's Photo

Roger Carnell and Stephanie live in Indiana, USA. He was 67 when he was diagnosed in October, 2009. His initial PSA was 4.60 ng/ml, his Gleason Score was 6, and he was staged T1c. His choice of treatment was Non-Invasive (Active Surveillance). Here is his story.

My PSA had been consistent for the last few years: 2006 - 2.8, 2007 - 2.8, 2008 - 2.9, then in October, 2009, took a jump to 4.6. During the last several years DREs have shown "slight enlargement" but nothing remarkable. I have experienced some urination problems, frequency and difficulty starting, weak flow...but have resisted taking medication due to the "floppy iris" side effect they cause if you have to have cataract surgery. I had been diagnosed with "developing" cataracts and my ophthalmologist warned me against these meds. Earlier in 2009 the cataracts started a dramatic growth, my vision in one eye rapidly went to less than 20/200, and in April and November I had surgery on my eyes; both are now 20/15!

Due to the jump in PSA, 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; 25 cores from 12 sites plus 1 Transition Zone. 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 (urologyhealth.org and nccn.org) and gave me the book "100 Q&A About Prostate Cancer" (2003). 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 this site, 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 in Arlington Heights, IL (some distance away, but we had ties to it due to family members). They have a "Prostate Nurse Navigator" who has proven to be a tremendous help, answering all questions we have, and keeping in touch via email. [This concept seems an excellent one and is practiced in a number of centres - Google for one near you] 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.

So that is where I am now. 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 25 cores showing cancer of only 5%.

This has been 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 have slacked off is not exercising enough. I am retired, and keep active, however had stopped working out or running regularly. Back to the YMCA!

Interestingly, I feel the biggest help in finding the wealth of information on the web, and reading all the stories 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.

UPDATED

June 2010

April 2010: DRE still normal, PSA down to 3.2 (from 4.6 at diagnosis in Oct 2009). With my commitment to Active Surveillance I also promised myself to improve my overall health.

My strategy: keep my low-sodium, low-sugar diet, cut out fast food and junk-food snacks, change supplements a bit. I eliminated flaxseed oil and added Vitamin D3, Costco brand "Prostate Health Complex" (Saw Palmetto, Lycopene and Pumpkin Seed) and Agro Labs "Naturally Pomegranate" (Pomegranate and Resveratrol extracts). AND, I greatly increased my daily exercise by strapping on a pedometer and upping my daily step count from @3000 to @ 10,000. I continue medication for diabetes, hypertension and cholesterol control.

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.

My thanks to Terry for this YANA site, and to everyone for their stories and input! Good luck to all of us on our journey aboard the Good Ship "A Strange Place".

UPDATED

October 2010

October 2010: 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 "very 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 for this site, and to all who share their stories.

With the increased awareness of, and support for, AS (NCCN guidelines, new book "Invasion of the Prostate Snatchers", etc.) [A paper published in September 2010 Active Surveillance For Prostate Cancer: Patient Selection And Management is of interest to men considering AS. There is some discussion on the paper on the Yana Forum.] I am somewhat perplexed by low percentage (under 10%) of of men on the YANA list diagnosed in 2009-10 who have chosen AS. I certainly 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 "wake-up call" it gave me. How's THAT for side effects!

UPDATED

May 2011

Just back from the visit to Dr P the urologist this Friday morning.

The good news is my PSA remains the same as last test 6 months ago, 4.4 - he 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.

Will report back in due course.

UPDATED

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 "nothing 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.

Next up: biopsy in November.

UPDATED

November 2011

A week of good news. First came the word that Terry has restarted these YANA 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 (9 Nov): 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!

UPDATED

October 2012

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 primary care Dr. advised my PSA test was 4.8 (test on 28/Sept/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.

More later after the Urologist visit. Best to all from the Indiana Dunes.

UPDATED

October 2012

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 "very 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, "that includes my partner, who is much more eager to go right to surgery."

Sending wishes from the Indiana Dunes that all could get such good news. Roger

UPDATED

April 2013

Continued good news: My current PSA is 4.6, down from 4.8 - so it is now the same as when I was diagnosed in Oct '09. I guess you could say my "doubling time" is infinity. 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 Dr has been able to lower both my diabetic and blood pressure meds.

I give thanks for my good news, and a big thank-you to this YANA site for "holding my hand" via the web. Greetings to all from the Indiana Dunes.

UPDATED

November 2013

It's now four years from original diagnosis. Had my 6 month checkup, PSA/DRE, yesterday - 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 "Biopsy? Treatment? Path Forward Discussion."

Still walking the dogs, feeling great, enjoying spectacular fall colors. Best to all!

UPDATED

January 2014

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

UPDATED

July 2014

Just a short note that all is well. I received the good news that my PSA continues its downward trend. After peaking at 10.5 nine months ago, it is now down to 6.8. Nothing else to report from today's visit to urologist; next scheduled test/visit will be in six months. My overall health continues to be very good, and I am staying on the same path with diet/exercise, continuing Active Surveillance.

Greetings to all in the YANA family, and a big shout out to Terry Herbert, sending love and best wishes to him and his family.

Roger

UPDATED

June 2015

I had my latest PSA test late April, and follow-up with urologist mid-May. (Both delayed due to scheduling conflicts).

The good news? My PSA dropped back down to 5.0, almost the same as when I was initially diagnosed five and a half years ago! DRE was normal, so am happily continuing (with Dr's approval) on my Active Surveillance course. Per Dr's recommendation, I will have a MRI test at time of next visit in November.

Only changes have been a more low-carb diet, and a bit more intense exercise. I took on the job of walking up and down the dunes keeping watch on homes whose owners are absent over winter, so my fitbit registers WAY more "floors" of altitude gain, frequently 50-80 daily.

Sending greetings and best wishes to all,

Roger

UPDATED

November 2015

At 7.1 my PSA is up a tick, but calculating doubling time from diagnosis six years ago, it works out to almost 10 years! DRE normal, MRI done last week showed nothing significant. My urologist would prefer to do a followup biopsy, but defers to my wish to not have one. As he admited, "I am sure that you will die WITH prostate cancer, not FROM it." So I continue AS, enjoying excellent health - e.g. my cardiologist said last month's EKG was "perfect!"

UPDATED

June 2016

I continue Active Surveillance, with my PSA now down to 5.7 and DRE normal. Pesky heart irregularity caused problems last month, but I recovered well, and overall my health is excellent. Continued long daily walks and very low carb diet. Best wishes to all, Roger.

Roger's e-mail address is: carnells2@hotmail.com


RETURN TO INDEX : RETURN TO HOME PAGE LINKS