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I first wrote here about my situation at the beginning of February this year. It was basically a 6.4 PSA, Gleason 3+3, and I decided to watch-n-wait.
Last month on my annual check, my local doc was concerned about a possible kidney problem. I went for more blood tests, and was sent back to my rather diffident urologist/surgeon who stated he didn't know what this kidney problem was, but I shouldn't 'bat it off' like the prostate. He thought I was going to ignore the problem.
I was very surprised at his aggressive terminology, as of course I had done a lot of research on the prostate and thought I had made an intelligent assessment - despite his professional insistence to operate/seed me. He obviously didn't agree with my decision. Oh well.
The blood test showed a slight increase in PSA from 6.4 to 7.1 which he noted. I replied that a small fluctuation may be also caused by the test regime, to which he grudgingly acknowledged.
I really wish there was another option here, ie, a more friendly specialist, but it doesn't look although many surgeons are predisposed to AS, so I'm alone with it.
The ultrascan didn't show any malfunctions or tumors in my kidneys, so my urologist referred me to a kidney specialist who I'm seeing at the end of the month.
I'm mindful of Terry's problem here, and I hope yours is not serious Terry, but kidneys are a different kettle of fish when it comes to prostate health issues.
I'm not worried about the upcoming appointment, but not comfortable either. At only 65 I want a lot more out of life than another decade's span, and these malfunctions are starting to annoy the heck out of me!
I'm not writing for any other purpose other than to share, and maybe query whether I'm still on the right path for AS. And some words of encouragement will also go a long way on this lonely journey. Everyone in my family has my best interest at heart, but they don't possess the information to help me continue with my rogue decision, of course. I'm still sticking with AS.
Kevin:
Best wishes on your upcoming appointment to clarify the kidney problem.
If you have not sought a second opinion on your biopsy I would encourage you to do so. In his book "You Can Beat Prostate Cancer..." Bob Marckini suggests: "Since the reading of biopsy slides is a subjective process, have your slides read by at least two different laboratories." The appendix of his book lists premier pathology labs in the U. S.
Without going into any detail let me assure you it may have saved me a great deal of grief had I followed this advice.
I totally understand your need for encouragement. It can be a lonely path indeed. Thank goodness for YANA.
Both you and Alan recommend a second opinion, and it's something I have considered. But I wonder at this stage of the prognosis how much difference I will need from them to make another decision. If the information is open to interpretation by two separate but highly skilled sources, exactly what will I achieve?
Will it confirm the existing findings, or maybe give me a 4+3 Gleason instead - which would be a big error of judgement on the part of one of the experts. I would hope the opinions don't vary too much, otherwise all those years of training are wasted. I don't know, just exploring the options.
You said that "I really wish there was another option here, ie, a more friendly specialist, but it doesn't look as though many surgeons are predisposed to AS, so I'm alone with it".
IMO, you are definitely talking to the wrong guy. A surgeon is not likely to be sympathetic to someone desiring to stay on AS. So, that being said, I suggest the following (if you live in the USA because I don't know if this would work elsewhere):
Google healthgrades.com. If you click DIRECTLY on their website, (as opposed to "Find a Physician”) and type in Urology as a specialty and your city/town and state as your location, you will find a listing of urologists in your area. Also, since an oncologist specializing in prostate cancer might be an equally good choice to help you with your AS, you can type in prostate cancer as a specialty and find oncologists for you to choose from in your area as well. Of course, these listings will not tell you which of the listed urologists and oncologists support AS. Therefore, I suggest that you call the offices of these doctors and be frank with them about the type of doctor you are looking for. I am confident that many, if not most, of the doctor’s receptionists will be able to give you insight regarding the doctor's position on AS. I say this because making these calls was part of the process of finding the right Urologist for me. Once you have narrowed down your list of potential candidates, you can check out the patient surveys listed for each doctor on the healthgrades.com website to give you some insight as to whether or not they are caring and compassionate. Ultimately, though, the best way to judge whether they are the right doctor for you is by sitting down and talking with them. Good luck in your search.
You also said "I'm not writing for any other purpose other than to share, and maybe query whether I'm still on the right path for AS. And some words of encouragement will also go a long way on this lonely journey".
Once again, IMO, you are definitely on the right path for AS. Your stats (which I reviewed by reading one of your previous posts) fit the most conservative guidelines for practicing AS. Are there risks? Sure. Just like there are risks associated with the various treatment options...such as long-term side effects and recurrence of your cancer. Just remember that AS, by definition, involves intervening with "curative intent" if your cancer progresses. How long you have before that happens is anyone's guess. However, if you go to my (rather long) story on YANA and scroll down to this passage: "For the record, one of the key factors in making my decision was a 10 year AS study, the results of which I posted on the YANA forum on January 31, 2012", you will be able to click on and read the results of the study which I think you'll find very encouraging. If you decide to read my whole story, you will also see that I "push the envelope" as far as acting on possible progression is concerned, but what it all comes down to is every man has to decide for himself what is important to him. For example, if you are the kind of man that sees yourself living a lot longer than 10 more years, then you are more apt to act conservatively and choose a treatment option when you're monitoring indicates that your cancer may be progressing. I certainly want to live a lot longer than 10 more years myself, being just 57, but I am willing to accept the greater risk that comes with my decision to hold off has long as possible. I will say that a big part of accepting that risk comes from being a Gleason 6 on all of my biopsies, including a targeted one (the latter being part of a CDU performed by Dr. Bahn). In each case, I had my slides sent out for a second opinion. So, as Don Oberlin said, get that second opinion if you have not already done so. It is not too late. Your slides are still sitting in the pathology lab of the medical center that did your procedure. Lastly, when it comes to you next biopsy, you may want to consider a "targeted" one associated with a CDU or MRI scan. (Personally though, my MRI scan did me no good in that it detected no cancer even though it is certainly there). My reasons for the targeted biopsy suggestion are highlighted in my story, which you can find under the name Alan Murphy.
Good luck in whatever path you choose, and I hope everything checks out okay as far as your kidneys are concerned.
Yes, you're quite correct when you say I've chosen the wrong specialist. But as my local doctor said when I asked her for an alternative to my grumpy yet efficient expert, all of her colleagues will give me the same response. In other words, they are a hammer looking for a nail, and not a screw.
When I asked for a sympathetic specialist, I'm probably looking for support in the wrong area. What I acknowledge is that I really want an expert with opinions that match mine. And that is idealistic, and probably in the realm of alternative healing which I'm not prepared to consider.
You are also right when you label my condition as conservative and good to continue with AS. I feel that too, but there's a large part of me weighing up the value of specialists who have made the prostate their life's work on one side, and people like me who depend on statistics to verify our position on the other.
The prostate and its dealings is an emotionally charged subject filled with indecision, opinion and a small amount of witchcraft.
I have no desire to validate my decision with x years worth of fulltime study - I prefer to hire experts in their field. They are mostly of one opinion - so it is hard to know where to turn.
Your recommendations are very useful, and I'll take some time looking them over again and plotting my course.
In your last post, you made the following two statements: "…but as my local doctor said when I asked her for an alternative to my grumpy yet efficient expert, all of her colleagues will give me the same response", and "…there's a large part of me weighing up the value of specialists who have made the prostate their life's work on one side, and people like me who depend on statistics to verify our position on the other".
In response to theses statements, I believe that you have the mistaken impression that those doctors highly trained in the field of prostate cancer do not support AS as a strategy. While it may seem like that after talking to your local doctor and surgeon, just know that there are many highly respected prostate cancer doctors out there that do not think the way that they do. For example, there is Dr. Mark Scholtz (who wrote "Invasion of the Prostate Snatchers") and Dr. Charles "Snuffy" Myers, just to name two. You can also add the many doctors associated with the NIH conference on prostate cancer, as well as the doctors who helped draw up the NCCN guidelines for prostate cancer. The results of the conference and the NCCN show a strong support for AS for those patients who meet the guidelines. I should add that there are certainly doctors at the local level that support AS as well, including my own urologist. So, if you go out and find one, you are likely to come away with a different perspective.
Lastly, IMO, differing opinions is not a reason not to get a second opinion. Quite the opposite. It is THE reason for getting one. If the results, confirm that you are a Gleason 6, then you can rest a little easier. (I say "a little easier" because, as you've probably read, one-quarter to one-third of tumors diagnosed as a Gleason 6 were found to be a higher grade after being surgically removed). On the other hand, if you are Gleason 3+4, then that still meets some of the more liberal guidelines for AS, but it does put you into the medium-risk category. If you are Gleason 4+3, then AS is simply not recommended. You say "…but I wonder at this stage of the prognosis how much difference I will need from them to make another decision". That is the question that you need ask yourself if the results come back with a different grade. In other words, you need to assess how much risk you are willing to take based upon, among other factors, the number of good years you feel you have left. Also, if the results come back different, I would (and have) sent the slides out for a third opinion. It is not something that you should hesitate to do since it is, after all, your life (and quality of that life) that we are talking about. In my case, the third opinion was pivotal in my decision to stay on AS. Keep in mind, too, that the doctors reading theses slides are only human in that they can have bad days, or worse yet, they could have finished at the bottom of their class in school.
You certainly have a lot of alternatives to select from, and perhaps I should have explained that I'm from New Zealand. The number of experts here therefore are limited, and there are no AS enthusiasts I know of so far. I could travel, but in my experience it's difficult to keep up a dialogue from halfway round the world.
