Active surveillance ended today for me

Optimist, I wish you continued success as you proceed into the next phase of your AS/deferred treatment strategy.

Going back to the original post--this really helps us to understand what AS is all about. Sometimes, looking at statistics doesn't give you the same insight as hearing one person's story. There are so many levels to discuss this:

On the personal level, Optimist followed up responsibly with the AS, and still has a great chance of doing very, very well. It's always possible to second guess, and think "what if I had surgery after the first biopsy", but if he had, he would still be wondering whether he had unnecessary surgery. I think we all can greatly respect his choice. I had almost the same stats as Optimist, and I think I had my biopsy the same months as his. Higher PSA (7.7), 2 years older. I just had the thing out last summer. I still don't know if I made the right choice, but I did extremely well with the surgery. Just lucky. I think Optimist may be smarter than me.

On the level of understanding AS, this shows that life is uncertain. No one can assume that a low volume Gleason 6 can never progress into something worse. Also it illustrates that it is wrong to say that when you delay treatment that the chance of cure is never reduced. Optimist still has a great chance of doing very well, but good thing that he didn't wait another 6 to 12 months for the biopsy.

This also shows us what we don't understand about AS. How many men end up progressing like Optimist? How many don't? We really need better tests to predict who's going to progress.

It also shows us the importance of age. Image that Optimist was 20 years older, and that he stopped doing anything after his first biopsy. It's likely that he would spend the rest of his life in blissful ignorance, as the tumor gradual grew. Because he was 55 at the first biopsy, he didn't do that. His careful followup may well have saved his life, or at least will save him from a future of symptomatic prostate cancer, and HT or other treatments.

On the level of understanding PCa, how can a low grade cancer get so much larger so quickly? Maybe pathology isn't the whole story. From everything I've read, PCa is a multicentric disease. Cells become cancerous in different parts of the prostate, independently, it doesn't all come from one place. Even though the first biopsy only detected a small volume of PCa, there must have already been a small number of cells scattered in different regions of the gland, starting to undergo malignant transformation. So the biopsy may detect one or two lumps of cancer, but may miss that the prostate is seeded more widely with a small number of malignant cells that are going to make trouble soon.

What a complicated disease! No one should think they've got all the answers. I think every post here should start with the words, "I don't really know, but here's my opinion..."

Tony, I believe support for Optimist was EXACTLY what folks were trying to do before An's insenstive remark.  At any rate, hopefully the blowback about that remark from many posters will let Optimist know that many of us do support his original decision, do believe that his curative chances remain excellent and do wish him the best as he moves forward in the next stage of his fight.

Incidentally, I believe the question of gender that ziggy raised was not meant to leverage a discussion advantage and is a valid discussion point...so maybe it will come up in a separate thread.

Tudpock (Jim)

First of all best wishes and good luck to Optimist in his continued battle against PCa.  You've been through a lot, hang in there.

Second I find it interesting that "some" of the same people who defended  the use of the term "butcher" in posts a few weeks ago would find An's use of the term "magical thinking" as insensitive.

The only difference that I see is that An was sensitive enough to apologize to anyone she may have offended.

An, I guess we just have a difference of opinion and I'll leave it at that.  I think your aplogies were sincere and I'm not trying to pile on...I'm sorry if I gave that impression.

RCS, the term "butchery" was not used by me.  I did defend the poster's right to that description albeit in a general thread about treatment options.  As I recall, it was not used to describe a particular patient's treatment.  If it was I would be as critical as that term relating to a specific patient as I was to "magical thinking" when it came to a specific patient.  I think the big difference is that we should feel free to be passionate and descriptive when talking in more general terms but need to activate our sensitiviy chips when taking about specific people.  I'm sure I'm not always the best at this either and I hope my friends here will "hit me up side the head" if I fail, just as many of us did to someone else on this thread.

Tudpock (Jim)

 

Post Edited (Tudpock18) : 9/17/2010 9:15:11 AM (GMT-6)

Personally I like magic thinking, cause , well its magic!!!. Dont know what happened to my stats, notice others lost theres too. Thats what happens when you over treat a forum , I guess

We are where we are, and we cannot know all the answers to all the questions. Hindsight really can't help, but it's there and I hope this is a case where in a few months time AS will have been seen to have worked.

The real problem lies with the efficacy of biopsies. So well done for having repeat biopsies.

My biopsy Gleason was 3+3 and my post op pathology four months later was Gleason 3+4, so do I think the biopsy missed the 4 grade cells or do I think some 3 cells were aggressive and changed to 4s within a few months? Well I can't be sure can I but I'm guessing the biopsy missed the grade 4 cells. There are scores of others here with upgrades post op too and AS should take that factor into consideration too. A biopsy will either get the call right or under-estimate the problem.

Given the massive improvements in surgical and RT techniques and procedures in recent years and even decades I still think it is a shame(!) that biopsies still seem to be being done the same old way in nearly all cases.

I don't think we'd be having this discussion if there was a way of examining the prostate that told the patient and the doctors something nearer to 100% of what was going on inside it.

And this isn't a gender issue, it simply needs to be seen from the angle that it just happens that the prostate is a lot harder to examine and test that breasts and cervixes and that only 50% of the population have prostates.

Get it out time has arrived, so I hope it does the job.

Alf

What's catches your eye is not the change in grade, it's the change in volume:

(3%, 5%, 15%) all G6.

to

20% - G6 50% - G6 70% - G7 (3+4)

It's totally believable that the first biopsy missed a few G4 cells; much harder to believe it missed such a large piece of PCa. More believable (although more disturbing) that it progressed.

It's unlikely that fancy scans can remove the element of uncertainty from AS. If you follow AS, do as Optimist did, and get your biopsies.

Well , this bone has been chewed enough. So, here's the choice. We can continue on with this thread and let this point here be where the off-the-side discussion stops and the support for Optimist continues, with the mods deleting anything off the mark or we can lock the thread and I can open up one for Optimist and we can all start over. I think most everyone with an opinion has spoken at least twice, so everyone should have had an opportunity to be heard.

I prefer the deleting any off course posts, myself..

Casey59 said...
Optimist, I wish you continued success as you proceed into the next phase of your AS/deferred treatment strategy.

Optimist, I just wanted to add that you are in excellent company. 

A UC-Davis study published yesterday compared pathological outcomes of men undergoing RP after a period of AS (median period of 18 months, just like you!) with those of a similar risk group undergoing immediate surgery, and concluded with these important points:

• rates of Gleason upgrading to >/=7 did not statistically significantly differ
• rates of pathological category pT3 did not statistically significantly differ
• rates of positive surgical margins did not statistically significantly differ
• rates of non-organ confined disease did not statistically significantly differ

Again, continued success with the next phase of your journey.

-Casey

Study name:  "Surgical management after active surveillance for low-risk prostate cancer: Pathological outcomes compared with men undergoing immediate treatment"

Study link:  http://www.urotoday.com/index.php?option=com_content&task=view_ua&id=2231732