It’s been a while since we asked our readers to “rate” Prostate Cancer International and our services (e.g., The “New” Prostate Cancer InfoLink and our social network) via the Great Non-Profits web site. So we thought it was about time we asked you to just click here and give us (and Great Non-Profits) some feedback on how well we are doing.
Filed under: Uncategorized | Tagged: feedback |
THE "NEW" PROSTATE CANCER INFOLINK 
I would like to see a more focused approach re “living with prostate cancer” as opposed to searching for a cure. Somewhat akin to AIDS … no cure but enough available therapies which allow one to sustain a quality of life which is acceptable. Clearly, there appears to be a shotgun approach with the hope that something sticks …
Dear David:
Strangely enough, we are currently working on the development of a 1-day conference for patients and family members in Florida, in March next year, with the precise title, “Prostate Cancer TODAY: Living Well, Choosing Wisely”.
I agree with you that a much greater degree of focus needs to be given to the whole idea of “living well” with prostate cancer while we continue to search for much better forms of treatment.
I was diagnosed with Gleason 3 + 4 and T1c 11 years ago. I decided to take whatever treatment that would be most beneficial for my situation. So far I have not found one even though I have read extensively and followed you for some years.
I am on an active surveillance program and use non-allopathic approches. I do use a variety of alternative approaches and the only symptoms that I am aware of are frequency of urination with urgency and I do not fully empty my bladder. That is probably not bad at age 79.
I have found nothing in your dissertations that would move me to treatment. Probably the most useful finding that I have come across is a Danish meta study which concluded that there are no benefits to early diagnosis and early treatment for disease in general. They damage what you have, lead to longer suffering and probably shorter life.
Thus my bottom line is that I have spent a lot of time with you reading lots of often obtuse stuff and gotten very little value beyond indirect confirmation that I am probably on the right path.
The most useful source that I have found is http://www.CancerTutor.com
I believe this site has taken a very substantial position as it relates to AS vs treatment. One of the best things about this site is a lack of bias. I don’t believe this site suggests any treatment. If you don’t want to be treated and that works for you, then there is a lot of helpful information on this site. If you are like me and have had a lot of treatment, there is good information for me as well.
Prostate cancer is a complex subject with a wide variety of subtypes and patients.
There is also an excellent section for newly diagnosed patients.
In my opinion Mike does a great job of sorting through the many many articles posted and presents a reasonable cross-section of information along with insightful discussion.
Bill Manning
As a mentor to prostate cancer patients and/or their caregivers, I see that you have done very well in finding and presenting to we readers research results that either confirm our own research or challenge us to continued research to sort the wheat from the chaff, since to be a reliable mentor, we have involved ourselves in deep study and research of the everyday changes coming to light on a daily basis. I can see where these research breakdowns are likely difficult for many readers to understand.
All in all, I am amazed, Mike, in the volumes of research you must gather then sort out that which you conclude would be best for patient/caregiver interest. Keep up the good work — even if that means adding considerations regarding those posed by others responding.
Also amazed! Keep up the great work!
I’ve been a regular reader for several years and doubt there’s a better prostate cancer site out there. Clinically, I’ve been “orphaned” by the current trend of minimal PSA testing and now find myself relegated, with a PSA of 14, to biannual testing only. I have had one round of cancer diagnosis and treatment and am now (supposedly) on active surveillance. In my view, biannual testing is hardly active, but I cannot win this argument with my urologist. There may be many others like me. If so, perhaps its a topic The “New” Prostate Cancer InfoLink will take up. We need a voice.
Dear Rob:
I would hope you are aware that the quality of active surveillance is an issue we write about on a regular basis.
You might want to show your urologist this set of guidelines from the American Society of Clinical Oncology (ASCO), which includes a specific statement about frequency of PSA testing on page that reads as follows:
“The AS protocol should include the following tests:
— A PSA test every 3 to 6 months
— DRE at least every year
— At least a 12-core confirmatory transrectal ultrasound guided biopsy (including anterior directed cores) within 6 to 12 months, and then serial biopsy every 2 to 5 years thereafter or more frequently if clinically warranted. Men with limited life expectancy may transition to watchful waiting and avoid further biopsies.”
And then of course there is always the question of whether you might want to find yourself a different urologist who is more sympathetic to your perspective.