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Active surveillance ended today for me

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Posted 9/16/2010 8:36 PM (GMT 0)
Today I got the results of a follow up biopsy at 18 months from inital diagnoses.

Original biopsy Feb / 2009 showed 3 out of 10 cores positive (3%, 5%, 15%) all G6.

The latest biopsy showed I still have three positive cores from the exact same locations in the prostate with these reading.

20% - G6

50% - G6

70% - G7 (3+4)

I was shocked at the volume growth and the grade progression. My PSA was only 3.96 at the time of this biopsy. Surgery is in the process of being arranged.

For those continuing on A/S don't over look the value of periodic biopsies.

PSA alone does not always reveal what is going on.

 

Posted 9/16/2010 8:45 PM (GMT 0)
Sorry to see those results. But at least you were really watching. There is something about the "active" in AS that some forget.
Posted 9/16/2010 8:54 PM (GMT 0)
So by waiting a year and a half of watching, now you have much more cancer to deal with, and now a high volume core of Gleason 7. This is why there is a good argument for not doing AS. Not saying you chose wrong, you made your own decision. Also shows, that PC can intensify a whole lot quicker that some of out experts here seem to think. The gambling aspect to AS is the one part that's hard to explain away. When AS is based on a biopsy only, the ten million dollar questions becomes: did the biopsy show the full extent of the cancer, or just the tip of the ice berg.

I wish you luck in advance with your surgery, and hopefully will get all of the beast out of you on the first pass.

David in SC
Posted 9/16/2010 8:54 PM (GMT 0)
Due diligence rewarded with unwanted news, and I'm so sorry you'll be joining the prostate-less party. I know it might not be what you're feeling now, but your responsible caretaking of your body has most probably helped you dodge a bullet. Good luck and please keep all here informed...Everyone is in your corner.
Posted 9/16/2010 9:22 PM (GMT 0)
It always surprises me how aggressive this "slow moving cancer" can be. Most people I have talked with say "Oh, it's great that it's JUST PCa. It's slow moving and he won't die from this". Well, of course we hope he won't but we were also shocked with how aggressive it was, how fast it doubled, how much volume of cancer there was and how far along the stage was.

Good luck to you on your surgery. We are all hoping it goes well for you and hoping you have an easier feeling once it is out and you know exactly what you are dealing with.
Judy
Posted 9/16/2010 9:27 PM (GMT 0)
Optimist,
I wish you the very best moving forward. You certainly have an opportunity to do extremely well. Stay positive and hopeful and keep us updated.

You know this board has a lot of experience, so don't hesitate you post your thoughts and questions...

Tony
Posted 9/16/2010 9:43 PM (GMT 0)
Optimist -- I think you did the right thing going for AS initially. With your numbers I would have done the same thing.

Of course AS is a gamble. Often things go in your favor, but sometimes they go against you, as they have here. But even so, your chances of a "cure" are still very good. Good luck with the surgery.
Posted 9/16/2010 9:45 PM (GMT 0)
Everyone who reads this board knows my position on this subject..

Optimist, get that thing cut out as soon as you can, it's too late to look back now, so just look forward and know you are still in pretty good shape to achieve a surgical cure. Best of luck to you brother and thanks for posting your journey..
Posted 9/16/2010 10:07 PM (GMT 0)

Optimist - hate to hear it, friend, and i wish you the very best!

ed

Posted 9/16/2010 10:34 PM (GMT 0)
Optimist, the great thing is that you took your AS seriously and you did not avoid biopsies.

It is interesting that you say that the same spots were biopsied and you got some 3+4 this time around. There has been discussion here in the past that a 3+3 stays a 3+3 and higher grade cancer starts that way but as cancer is a progressive disease, DNA gets progressively more choatic not less so, that has never made sense to me.

I hope that your surgery goes well, I'm sure you know your next steps pretty well as you would have a good chance to consider your options including surgeons and hospitals during your AS period. Good luck with it and we are here for you if you need us.

Regards,
An
Posted 9/16/2010 10:54 PM (GMT 0)
Dear Optimist:

Sorry it worked out that way but the good news is that you took the "active" in AS seriously and were smart enough to follow up.  The chances are also very good that the outcome of your treatment now will be exactly the same as if you had done it earlier.

Good luck and please let us know how you progress.

Tudpock (Jim)

Posted 9/16/2010 11:15 PM (GMT 0)
Sorry to hear your news. I was a Gleason 8 with PSA <4 so PSA. I know you have done your homework regarding surgery, etc. Good luck to you and hope you have a speedy recovery.
Posted 9/16/2010 11:51 PM (GMT 0)
Hi Tud,

There is an element of magical thinking in your e-mail.
The worst core 1.5 years ago was 15% of a G6. This year it is 70% of a G7.

I hope with all my heart that the cancer is organ contained and that the surgery results are good.
But the current scenario is a lot riskier than what it was just over one year ago and the probabilities of a good outcome is less certain. This is an unpredictable disease with unpredictable progression and it is very good that Optimist is moving quickly to treatment.

An
Posted 9/17/2010 12:34 AM (GMT 0)

An, the only thing I can respond to you is that I think it is cruel and nasty to refer to a supportive comment as "magical thinking".  Shame on you....don't let your hatred of AS interfere with support of our fellow PCa sufferers.  By the way, irrespective of your opinion and irrespective of what you think is "magical thinking" I still believe that our friend Optimist has an excellent chance for a positive outcome and I'll bet his doctors agree.

Tudpock (Jim)

Posted 9/17/2010 12:54 AM (GMT 0)

An38 said...
Hi Tud,

There is an element of magical thinking in your e-mail.
The worst core 1.5 years ago was 15% of a G6. This year it is 70% of a G7.



An

And of course all pathologists read the slides identically every time. We know better. Personally I'd get a second opinion on them. For every guy like optomist above there will be many more to have little to no to less change in their Pca. I agree the outcome for his Pca will likely be the same as it would have been 18 months ago, but he has also lived 18 months longer of a normal life, without the radical treatments effects he may soon have to suffer with. I agree the magical thinking remark is offensive and you should apologize. You can have whatever opinion you want on AS. I realize few if any women will ever support AS. It's a quality of life issue and face it is not your bodies who will ever have to live with the possible effects of radical treatments. You'll never know what it can do to a man on all levels to lose much of his sexuality, or the lack of dignity to a male ego having to wear pads. diapers and live accordingly. The lifestyle changes the embarrassments etc. So much as I welcome those women here who support their husbands and dads I believe your opinions on such matters have to be viewed differently than by those of our gender who actually have the disease and live with it . And no you're having to share what hubby is going through is NOT the same thing. My opinions on cervical cancer treatments should be secondary to a womans too for similar reasons.
Posted 9/17/2010 12:56 AM (GMT 0)
Well said, Ziggy.
Posted 9/17/2010 1:02 AM (GMT 0)
The bulk of your biop cells show G6. It warrants optimism and big percentages are with you for cure. Many of the veteran posters have just about memorized the tables and I think will confirm this. You already know there is strong professional medical support for choosing AS. There's no way of knowing if the biopsy just skimmed by the G4 the last time around. Tiny needles, big walnut. So much unknown, except for a hopeful outcome. Again, I reiterate, everyone here is in your corner and will be a great support before AND after Oct. 1. Til then, as some of the guys say, enjoy your prostate while you have it.;-)
Posted 9/17/2010 1:07 AM (GMT 0)
If I offended anyone I apologise. My point was simply that the two situations were not the same even though we all desperately want them to be.


An
Posted 9/17/2010 1:20 AM (GMT 0)
And to Ziggy and Purga: I supported the love of my life when he changed his mind 3 times in 3 months as to preferred treatment, one of which was AS. My biggest fear was that I would in some way influence him to choose a method that would ultimately leave me in this world without him.
During our "AS phase" I would draw 15mm black dots (the size of the nodule visible on MRI) on random scraps of paper to keep him calm when he worried. Same thing, different methods for a brief consideration of radiation and the surgical considerations of DaVinci vs open.
His body, his decision and I was with him forever, no matter the whatever. I have nothing but admiration and sympathy for Optimist. No one here has a crystal ball, not the wives, not the guys or the people who treat them.
Posted 9/17/2010 1:38 AM (GMT 0)
Optimist,

Best wishes as you move into interventional treatment.  I hope your screen name indicates someone who sees the glass as half-full rather than half-empty.  Your move from AS is what is seen in many studies of men after a couple of years of actively monitoring their cancer.  Those studies also show that the postponed intervention does not adversely impact curative outcome.  Retain your optimism that it will be so for you.  You have been waiting for a change in Gleason sum, percentage of cancer within cores, or an increase in the number of positive cores to trigger this course change.  It's sad that you have reached this point and we hope that the remainder of your journey leads you to the curative intent.  Thank you for sharing with us.  Be well.

Boo  

Posted 9/17/2010 1:58 AM (GMT 0)
I don’t pretend to have the answers on this disease, all I can do is have my own opinion.
And as I have said many times no one has the answers. Optimist has made the right decisions for him.

Ziggy yes, you are right, I don’t have a prostate. But I have breasts, I have a cervix and what we have been discussing here at healing well is the logic of cutting out or radiating or not treating an organ that has cancer. Of course each cancer is different, prostate cancer is slow growing, other cancers are not. The underlying logic for treatment or against treatment remain the same although the results of that logic could be different. I would think every person has something to contribute to this question.
I wouldn’t be here if I didn’t care deeply about this issue.

But we are here for support, we are not doctors and Optimist I apologise to you specifically for bringing my doubts about AS into your thread. There is so much support for AS in the medical establishment and so many studies backing it. Boo expresses it very well.
Posted 9/17/2010 2:07 AM (GMT 0)
Now for the rest of my post.

How insensitive that some of you cannot resist the opportunity to take pot shots at active surveillance when a member of this board has moved to another level of treatment.  Would you do that to someone whose surgery "failed" and had to move on to radiation?  There are plenty of other threads where the discussion of the pros and cons of treatment options can be carried out.  Support for someone shouldn't be diminished by criticism of the choices they made which differ from yours.  Maybe a "sticky" should be posted on the main page telling those that pursue AS to enter at their own risk.  Optimist did what AS called for and was diligent.  He doesn't deserve to be asked what he gained by that 18 months.  He shouldn't care what anyones "position" on this is.  This board has a wealth of information and support. Don't dilute it. If I have to make a move to intervention in the future as Optimist did, I would hate to avoid this board because of the reactions I've seen in the past.  We're on the same team, just playing different positions.

Boo   

Posted 9/17/2010 2:09 AM (GMT 0)
We men of HW Prostate Cancer, love and welcome the women here, past and present. Many a loving wife has to be the advocate for a husband that is shy, or without computer skills, or just not involved in their own health issues. We have had many touching conversations since I have been here, and the women have been wonderful contributers and researchers. Sephie from NY was one of my earliest support women here at HW when I got started. Her love and care for her husband John is outstanding, and we have enjoyed her presence on Chat Night too.

All Ziggy meant, I believe, is that no matter how much a woman studies on men's health issues, there are certain aspects, some mental, that are particular from a man's vantage, just as it is with women and their health issues. A man can be loving and caring towards the woman in their lives, and learn all they can to help and support them, but there are still issues that only another woman would totally appreciate and understand. Ziggy, if I read you wrong, please correct me.

The original purpose here, is to offer patient to patient support with all things PC, and that certainly includes our "sisters" here. Nothing is more touching to me, then some of the posts from scared daughters that come here trying to help their daddies through this terrible curse. I have two sons, but I have my own special "daddy's girl", who happens to be 29.

I hope this clears up any misunderstanding from earlier.

David in SC
Posted 9/17/2010 2:11 AM (GMT 0)
Folks:

These threads are always immensely helpful to me.  It is comforting to know all of us are struggling so much with which decision is the best one.  I do not think this is anyones fault.  It is due to the lack of information we have to make a decision.

I made the decision to have an RP about a year after diagnosis.  It is scheduled for Monday.  The decision was torturous, humbling, exacerbating etc.  Only men who have gone through it truly understood what is was like.  I know the wives are also very very supportive and have our best interests at heart.

I just wish it would go away so I wouldnt have to do what I am doing.  However, I keep coming back to my age.  Even if my pca is relatively small right now (not a foregone conclusion), it has about 30 years to change.

Retire

 

Posted 9/17/2010 2:17 AM (GMT 0)
booman,

was just thinking about your answer, you have many fine points. this whole "issue", if it is really an issue about AS or any other treatment protocal could be easy, if and when there are additional tests or even a single test that can determine whether a newly dx. PC is indolent or aggressive, or better, to determine what of the many sub-strands of PC that zufus often refers too. I have already had a diffiuclt failed surgery, and may be on my way to a failed salvage radiation job, both the operation and the radiation side effects for me have been terrible. There is no guarantee on any treatment or pre-treatment.

optimist did the right thing with AS, when his number indicated progression of the cancer, in particular the upgrade to Gleason 7, he is now planning his treatment. i wished i had had the opportunity to delay the hell in treatment i have suffered, but i didn't have that option.

i think if anything, it shows that AS can be a responsible choice. better testing one day, could take all the guess work out of PC for all of us, and those coming down the pike.

david in sc
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