Should Family History influence an AS decision?

Apologize if this has been discussed elsewhere, but I would really appreciate your opinions on this matter...

So I have a family history of PC (Dad and oldest brother years ago, neither know to be high grade PC).

I got my advanced diagnosis early this year and immediately warned my other three brothers to keep an eye on their PSA's.

One of my older brothers(in his mid 60's) was already testing yearly, but this year his PSA exceeded the magic 4.0 mark (up from 3.something the previous year). He is having no symptoms, but I believe because of my condition, his doc took a more conservative stance and suggested it was time for a biopsy.

My brothers biopsy came back with 1 of 12 cores being positive with a Gleason 6 (verified by Hopkins). The Uro recommends RP only because of the Family History. The Rad Onc says seeds are not an option because of his prostate size (natural), and that his numbers might support AS.

His wife, my wife, and a number of close friends, can't understand why he would even think twice about considering AS, given my current PC condition and our family history. He is also looking at cyberknife, but is getting a lot of pressure from those that love him to “just get it out of there” (RP).

With so much discussion here about OT, I have not been pushing him in any treatment direction, and don't want him making an OT decision based upon my condition. Is AS out of the question for him simply because of my advanced PC condition?

I think we all agree that a family history justifies screening, but when something is found, do you make treatment decisions based upon your personal PC test results OR treat it differently because someone in your family history has had aggressive PC?

I've directed my brother here a number of times, but as far a I know, he is not member of this prestigious HW club.

Appreciate you and your opinions, I think this place is remarkable!
Don R

interesting question and probably best answered by a medical professional.

i'm in a similar situation with my dad except I beat him to it by 27 years.

www.ncbi.nlm.nih.gov/pubmed/23320731

I appreciate the inputs. To be clear, I don't have a lot of specifics of my bro's stats, I'm just trying to determine IF we stand alone with our PC diagnosis and treatment, or need to consider our heritage (if we have it).

I have 3 sons and I expect them to start screening at 40yrs. From what I have heard so far, and the link davidg provided (thanks), the consensus is leading towards treat your cancer symptoms, not your dad's (or brothers).

I'll again encourage him to come here with details of his condition (for opinions only). I have been feeling quite guilty about supporting even the idea of his AS, and thinking that others on the PC outside would justifiably say to him "Yeah, listen to your bro, how'd that work out for him"....

I never told him AS was OK, but I did get him to at least get the second read of his path slides.

Thanks all, open to more opinions....

davidg,

I get your constant message about young men and PC, I really do. And in your case, there is not a doubt in my mind that you needed immediate primary treatment, and hope and pray you never need a secondary treatment. But I feel you would have been in the same situation had you been 50 or 60, let alone 40. You needed treatment regardless of your age.

However, if you had come here, even at 40 with a single positive core of let's say, <5%, Gleason 6, confirmed with a second slide opinion verifying it, and assuming you had good DRE's as well, and no family history, and assuming you were Caucasian, I would have still recommended that you considered AS.

For starters, had you met that criteria, and had you chosen AS, no telling how many years you could have made it without any invasive treatment. Perhaps for the rest of your life, but lets say, you made it 5-10 years out without any substantial cancer growth, you would have earned the right of decent QOL without the risk that accompanies most primary treatments. That is the real point to me.

And had you been this "AS" patient, the chances of a "cure" or long term remission, would have been just as effective in the future as had you been treated immediately. That is what the experts claim.

Bear in mind, that is a big "IF". Again, you needed treatment, you got treatment, and you won the lottery with little to no side effects. I know you give it all to your surgeon, and I am not one to argue with good results, but....

What if you had gone to him, as great as he is, and you were sitting here at age 40, perhaps cured of your cancer, but undergoing long term or permanent ED? Or if you had long term or permanent incontinence issues? Or both? Would you still feel as determined in your choice and views?

I know this didn't happen, but let's be honest, it could have happened. Other men have gone to top 10 surgeons and ended up not only with major ED/Incontinence issues, but even instant recurrence. It simply happens, and I don't believe it was only because of your age that you lucked out. I feel that you wisely chose a good surgeon, and you happened to have great results. Just something to think about.

David

adjust,

to pick up on your subject again, with your dx and your family history, you would be wise to encourage your sons to be base line PSA tested at even age 30-35 to be safe. Even though I am the lone person in my family tree with PC (at least known), my two sons have promised to be base lined at age 35. My oldest son did so last year at 35, he's 36 now. And my youngest son, 30, has promised to do the same, and I will keep after him when he reaches that age, and will even pay for any testing if need be.

with your family history, the concern is real, but I still stick to my feelings, that once any of the men in your family are dx, treatments should be based only on the reality of their particular cases and stats.

david in sc

David, I was a G6 on my first reading with 5% in 1 core of 12. AS wasn't for me then neither . At 40 numerous established oncologists who knew they were never going to treat me advised me to seek treatment. Beyond that, I had numerous personal reasons for not wanting AS. It was a personal decision based on understanding the facts and my own personality and what I considered best suited for me. I don't think you're listening to the G6 men right here who are telling you they picked treatment for sound medical and personal reasons.

My QOL is the same if not better than it was before treatment. I didn't want to wait 10 years. Not sure why that is so hard to understand. Many will want to wait 10 years, that's fantastic for them. There isn't a right or wrong answer here.

I gave you my reasons above, I knew that at 40 my chances of overcoming the potential side effects that I never got anyway would be better than overcoming them at 50. I knew that I had no other health issues at 40 but didn't know what condition I would be in at 50. Why deal with potential multiple health issues at once? I was at the peak of my fitness with hopefully 40-50 years ahead of me, why wait?

Experts are not claiming what you claim they claim. They don't have 20+ year studies, David. Tony and Ralph were discussing that just today.

As for your question about "buyers remorse" in case something goes wrong, that ain't me. I knew what the possibilities were. Mine was a carefully decided plan made with my wife, father, mother, sister, urologist(s), surgeon and several oncologists. I don't think much about "buyers remorse". At the same time I am humbled and grateful everything has gone so well up to now.

You're wrong about my age not playing s role in my recovery. It's a known fact that the younger we are the better we do vis-a-vis potential ED and incontinence issues. There are many other factors involved but that is certainly one.

I fully respect AS as a choice where applicable and even where not advisable. We make our own decisions and live by them. What I find unfortunate is people telling others that their decisions were not valid decisions. The quote of yours I posted above indicates to me that you have not listened to dozens of your brothers who clearly explained why they sought treatment as a G6. I find that odd coming from you given how many people have questioned your medical choices in the past and present and how irritated you get by it.

Peace...

adjust said...
Apologize if this has been discussed elsewhere, but I would really appreciate your opinions on this matter...

So I have a family history of PC (Dad and oldest brother years ago, neither know to be high grade PC).

I got my advanced diagnosis early this year and immediately warned my other three brothers to keep an eye on their PSA's.

One of my older brothers(in his mid 60's) was already testing yearly, but this year his PSA exceeded the magic 4.0 mark (up from 3.something the previous year). He is having no symptoms, but I believe because of my condition, his doc took a more conservative stance and suggested it was time for a biopsy.

My brothers biopsy came back with 1 of 12 cores being positive with a Gleason 6 (verified by Hopkins). The Uro recommends RP only because of the Family History. The Rad Onc says seeds are not an option because of his prostate size (natural), and that his numbers might support AS.

His wife, my wife, and a number of close friends, can't understand why he would even think twice about considering AS, given my current PC condition and our family history. He is also looking at cyberknife, but is getting a lot of pressure from those that love him to “just get it out of there” (RP).

With so much discussion here about OT, I have not been pushing him in any treatment direction, and don't want him making an OT decision based upon my condition. Is AS out of the question for him simply because of my advanced PC condition?

I think we all agree that a family history justifies screening, but when something is found, do you make treatment decisions based upon your personal PC test results OR treat it differently because someone in your family history has had aggressive PC?

I've directed my brother here a number of times, but as far a I know, he is not member of this prestigious HW club.

Appreciate you and your opinions, I think this place is remarkable!
Don R

While I do believe that AS can be justified in some situations, I am not all that sold on the general idea. At this point in time, we do not have reliable methods of determining which cases are truly safe for AS and which cases are a dangerous roll of the dice.

It is true that the PSA can be checked every few months so that action can be taken at the first sign of PSA velocity. But a biopsy only samples 1/1,000th of the prostate and can easily miss other tumors.

If you read Dr Pat Walsh's "The Guide to Surviving Prostate Cancer, 3rd Edition," you will learn that the average prostate has around 3 individual tumors -- and as many as 6 or 7 tumors that all begin to form about the same time.

And, with the tiny overall sample taken by a biopsy, it is very easy to miss another tumor(s). My point is that, just because the biopsy found a Gleason 6 tumor does NOT mean that there is not also a Gleason 7 or 8 (or higher) tumor in there also.

And I would not trust my own life by gambling between 3 month PSA tests that a hidden, more aggressive tumor might not start to get away before any action is taken.

Anyway, that's my 2 cents, for whatever it is worth.

IMHO, AS is a roll of the dice until we have a test (could happen within a few years) that can definitively show which cases really are safe for AS.

Good luck!
Chuck

Hopeful, sounds like you're doing great, congratulations. At 66 I too would have considered AS perhaps, just not at 40. There are so many variables to consider.

Lupron Jim - I can kind of see 142's point of the family history being a "tie breaker", but I just don't see it as a "must" item to decide upon. I know this wasn't said, so just speaking freely, but if you had pc, and 3 of your 4 brothers had pc, you still wouldn't take out the prostate of the 4th brother just because all the others had pc - right? I know, kind of a screwy analogy, just trying to make a point.

In this case, if a family member has a verified low level PC diagnosis, it should still be treated on its own merits in my opinion. Anything other than that could be construed as "over treatment", and it would mostly seem like it was being done out of misplaced fear, more than the facts of the case.

But I can be happy to agree to disagree about this.

David

Purg,

From your comments:
"but if you had pc, and 3 of your 4 brothers had pc, you still wouldn't take out the prostate of the 4th brother just because all the others had pc - right? I know, kind of a screwy analogy, just trying to make a point."

I would, if there were any other indications/warning signs (psa, +biopsy).

David, it's in front of you.

You posted something at 10.30 PM last night with a question to me, I answered at 10.45 and you didn't reply. It doesn't matter of course.

davidg -

No reason to get an attitude. I just re-read your 10:45 post on this thread, I don't see any direct unanswered question, I saw where you asked what I viewed as a rhetorical question. Please point out the question, again, I will answer any question, got nothing to hide.

I am well aware of all our G6 men, and their justifications for treatment, and I have not directly questioned a single person's treatment decision. When I talk about this subject, its in general terms, never been directed to a single individual. It's like talking in theory.

Plus, do you really think anyone here would openly admit they were over treated or might have been over treated? I could be wrong, but I don't believe we had anyone clearly admitting that, and I can understand why anyone would be reluctant to do so.

Might be easier if you just ask your question again. I will answer it.

david