Oct 16, 2010 - 10:55 pm
(My case info is: Age 56. 7/22/10 biopsy results confirmed on 8/17/10 showing 1 of 12 positive, with 5-10% of core tissue involved. Gleason of 3+3=6, PSA before biopsy 2.3. Nothing on DRE. Family history (father) with PC. Stage: T1c. General health good.)
I've had around 60 days of deliberations and research since being diagnosed, and have worked daily on trying to make a prudent decision as to what to do. I've talked to my local uro and GP, I've been to two university medical centers and gone through a multi-disciplinary PC evaluation at both (involving medical oncologists, radiation oncologists, surgeons, etc), met with members of a local PC support group, read as much literature and research as I could find applicable to cases like mine, spent many many hours on the internet discussion boards, etc, etc, etc.
This week I've determined that my treatment decision will be active surveillance. I will have a regimen of scheduled PSA tests and DREs and biopsies, and if there is reliable evidence that my PC is progressing, I will likely seek treatment without delay.
This has been a difficult process to go through and a difficult decision to make. I have become weary of being labeled a "good candidate" for virtually every PC treatment anyone has ever thought of. I have been surprised, and disappointed, that while the medical community provided plenty of general info about treatment procedures, they were very little help in deciding which of the options was best for me in my specific situation. Some specialists were admittedly biased in favor of their specialty. Some that weren't biased simply said all the treatments I was considering were valid options.
So, the patient who knew virtually nothing about PC a couple of months ago is in a sense left on his own to make a BIG decision that he will live with every day of the rest of his life. Someone with no medical training, and no knowledge of cancer treatment or medical procedures, someone who is obviously dealing with an abnormal amount of stress or duress due to the diagnosis - they make the decision and then let the drs know?? Is that really the best way to do this??
Anyway, this aggravated me more and more as time passed. But, if the drs were not going to be more helpful, then I accepted the responsibility to do the best I could to determine the "facts", evaluate my own priorities, and make a decision. My dilemma was an early stage, "low risk" diagnosis, but the treatment options would likely substantially and negatively affect my lifestyle and quality of life. Finding reliable data to determine how various treatment options were likely to affect me, and how the effects of one option compared with the next - I found to be remarkably difficult. And then all the personal judgment calls: should you act immediately for the best chance of "cure" and resign yourself to a real likelihood of living with unwanted side effects forever? What is best for you? What is best for your family?
Then, earlier this week, something completely unexpected happened. I ran into a dr. that was quite remarkable. He is a surgeon with 600 robotic RPs under his belt who methodically articulated a compelling case for AS given the specifics of my case. He spoke with great experience and expertise, and with a refreshing clarity and directness to the specific questions that concerned me. (In addition, the multi-disciplined group that he participates in later gave AS as their preferred treatment choice.)
I think the reality is that I would not have had the guts to choose AS at this point unless a credible expert had recommended it, and I had run across very few AS advocates in my travels. AS made logical sense to me for a number of reasons. There is some evidence that delay in treatment at this stage usually does not affect treatment outcomes. A delay in treatment allows additional data to be collected on "new" procedures that are without that data today. A delay in treatment prolongs the time one lives without side effects.
I think the reality also is that this dr's credibility is so high that I would have been persuaded by almost any other treatment recommendation he had made too. If he had said I needed surgery next week, I think I'd be there. So it is hard understate the importance of finding some medical expert in this process that really speaks to you. For me though, it was purely trial and error.
The AS theory that I'l be working on is termed "expectant management with curative intent." The theory is to make sure you need treatment before you have it, and therefore enjoy the current quality of life as long as possible, while monitoring the status of the PC to a degree that the possibility of a cure is not lost. I'll be working on the details of this for a while with my drs. It certainly helps to work with someone you really trust!
(I'd love to hear from those of you who have suggestions as to activity and diet ideas that would make sense while on AS.)
I'm very pleased to have reached this point in my journey, and I'm prepared to take whatever comes next. Many thanks to all the posters here on CSN who contribute their thoughts and experiences!