Decisions

Hello,

Yesterday I had an appointment with a medical oncologist, he told me that in his opinion any form of radiation would not be a good treatment option for me based on my age.  Stated that based on my age, surgery would statistically be my best bet.  That was not a surprised, based on all the research done so far.  However, he did surprise me when he suggested that AS would be a viable option, considering the small amount of pc found and my relatively low psa.   This oncologist seemed impressive and was referred by urology at Lahey clinic.   He was willing to take me on as a patient for AS but only if I was diligent with follow up testing and appointments.  This has made my decision a lot more difficult.  So far I had one urologist and an oncologist say AS is an option.  Another urologist who I spoke with recommended I have the prostate removed.  The urologist who recommended surgery also happen to be one of the top guys in the Boston area and likely the person I would choose if I was to go ahead with surgery, so his opinion weighs heavy in my mind.

I thought a urologist would be the best person to monitor AS, didn’t realize an oncologist would do the same.  Has anyone else used an oncologist for AS?

Another question:  Has anybody gotten sore from a DRE? Or is that telling me perhaps I have a bigger problem than the biopsy has shown.

thanks

I had been getting DRE for about 7 years, and each of them hurt me considerably afterwards, and that without anything being found through the DRE, I am sure each man would react different to them.

smc64 said...
gpg, Active surveillance

With proven cancer, in a word suicide.

 

Scott

Not meant to create an arguement, what is proven cancer??? You can have a gleason 6 (3+3) or less than 5% found in a biopsy and it is considered non-threatening-indolent PCa. Defined by John Hopkins Hosp.
Is John Hopkins-Brady Institute of Urology stupid or liars, they defined "indolent PCa"? So if they are stupid do we send patients to see them??? Why do many books mention watchful waiting/AS/monitoring? Why do some doctors even uro-docs in line with a possible waiting scenario??? I have seen people wait without it looking like a mistake and so have others. Leading organizations mention it as possible, like UsToo or Paact etc.

We can't say when they should be treated exactly or even if and when, sometimes.
A study done in Michigan I think at Wayne State University on autopsies of men in their late 20's to late 30's showed alot of men had prostate cancer already at that age.....slow growing and basically in the category of indolent PCa's(not aggressive levels), these men would probably never be detected until either later DRE's or Psa testings, usually when they are 40-50 yrs. or older. This also shows that slow growing PCa is more of the norm and takes along time (most of the time), these people would have had low gleasons, generally. The more things like this that you learn about the more PCa is the norm of "exceptions" disease. Once higher gleasons are seen and higher volume and psa's then waiting is not an realistic option or rationale. Although a patient can choose so say darn the torpedos or take drugs or other methods. Hey some Quakers won't even see doctors at all, it is their option. Not all patients deal with this the same, another parameter.

gpg,
It might be worthwhile if you read up carefully on active surveillance (AS) before dismissing it out of hand............as zufus has correctly pointed out very low volume Gleason 5 or 6 is a serious candidate for AS and thus avoiding the price of active treatment side effects for many years. Remember much of PCa is indolent cancer and just sits there.
Bill

Dear smc64, I have a couple of comments re the posts in this thread:

1.  I think Scott's comments might be a little dogmatic and maybe should be expressed as his opinion rather than fact.  For example, studies at Duke University have shown that prostate cancer in younger men is NOT more aggressive than that found in older men.  Also, according to most experts, PSA level IS relevant even after a biopsy as that is one of the criteria used by docs in determining follow up tests and treatment recommendations.  Finally, to say that AS is "suicide" is, in my opinon, an overstatement.  However, I personally do believe that the cancer is likely to progress and that you will face the need for active treatment at some stage even if you choose AS now.

2.  Before totally eliminating radiation in any form, you probably should consult with a radiation oncologist as well as the experts you have already seen.  That way you will have the benefit of a full range of disciplines and be able to make a well informed decision.

3.  The Brady Urological Institute at Johns Hopkins conducts a well respected AS program.  Here is the link to their site. http://urology.jhu.edu/prostate/advice1.php

As you will see from reading this, they would probably NOT take you into their program.  Based on your young age, they would most likely recommend active treatment.  However, it might be worth a call to Dr. Ballentine Carter at 410-955-0351 if you are seriously considering this approach as Dr. Carter probably has more extensive experience in this area than your current physicians.

Hope this helps,

Tudpock

smc64, your attitude strikes me as a bit strange. your biopsy doesn't mean that's all the cancer you have, it only means that on that sample of 12 cores, that is all it found. not saying you have any more, perhaps you are that fortunate just to only have the 1 core. mostly sounds like your mind is made up, and that's fine, because utimately, like every man here, you have to make your choice or choices, its your life, your body, and now, your cancer. getting lots of opinions is the right path to be taking, no one would disagree with that.

DJ, re the unpleasantness of the biopsy, I think that may be related to the patient's decision as to whether or not to have anesthesia (or the doctor's willingness to offer it).  I only had one biopsy, under IV anesthesia.   I would not call it a pleasant experience but it was only mildly uncomfortable as compared to what some men describe as painful or very unpleasant w/o anesthsia.

Also, smc64, even though my previous post pointed indicated that active treatment is probably the most recommended path for you, I can personally understand your thinking.  In other posts I have tried to differentiate between the psychological leanings of some men vs. others.  Many men in this forum have the urge to "get it out" at almost any cost and therefore go headlong into surgery.  Others, including ones who post frequently on this forum, don't have that urge and opt for protocols like TFT (realziggy) or AS or brachytherapy (me). The point is that each situation is different as is the psychological makeup and willingness to take risk of each patient.  Personally if I had received your diagnosis at your age, it would have been a tough call for me and I can understand your thinking of wanting to get in a few more good years before getting the treatment...but you just have to understand that entails some risk.

Tudpock

Wow,

Let me be clear my statement was nothing more than my opinion. It seems that the AS had already been discuused with this member and the only situation in which I personally would consider that approach, which ironically is my status these days is where there is no cancer.

Typical transrectal biopsies are like a needle in a haystack you can segment the haystack and get a gross understanding about what is going on. I have read that upon dissection many cancers which had been presumed to be low volume and indolent have been reclassified up a grade or more.

While I still think the PSA is not that relevant for this member right now in view of a postitive biopsy the fact of the free PSA being lower than 25% is considered by some to be an indicator of an agressive cancer. My free PSA pre biopsy was 4%.

I am not attempting to panic anyone, just giving my opinion some of which may not be completely accurate and that is the wonder of this board that the fact and opinion get sorted out pretty quick. Really not being Drs. all which is stated here is opinon and anecdote unless it is a clearly documented citation.

Having read all of the comments and placing myself in this persons position I think I would have to have a more extensive and quantifiable biopsy before I chose any treatment path.

zufus said...

There is alot of bias from the various docs, money is made on this too another variable in the mix.
NBC had a t.v. special about PCa and the over done surgeries as a "cottage industry" money maker in effect, not my words, the t.v. show unveiling the reality of the unreal world of PCa. Same goes for other treatments.
The one post whereby an older guy was supposedly not a good candidate for radiation (from a uro-doc), smells awful biased unless there were mitigation circumstances, older people are the exact usual candidates for radiations and is also in many books on PCa.

I hope more straight facts, truths, options are laid out totally before patients, whom "have to choose".



This stuff is not in books for the heck of it.

Very true words,

 

I have been seen for this now by 8 doctors, one my internist who ordered the original PSA, three urologists, two genitourinary oncologists, and two radiation oncologists and only three of them have roughly concurred concerning my persistance of PSA and how to deal with it.

The two specialists at Duke (one of whom had trained at Hopkins under Walsh and Carducci) both concurred that my cancer was incurable and they both discounted the remaining prostate as not significant.

Different Dr.s specialize in different treatments and I think it is inevetable that they view treatment through this prizm. 

Scott

I see your point, Tudpock. The hospital that I had my open RP is the only one here with the robot, and now they advertise it all the time on the local tv. So I am sure the surgeons associated with that hospital are "encouraged" to go that route. According to the paper, the robot cost the hospital over $2 million.

Hello all,
I first want to thank everybody who has responded to my post. It is impressive to see how many people care and are willing to help and offer advice. Truly appreciated!
As for me, my mind is not made up yet. My wife has been out of town this week so we haven’t had the opportunity to discuss this further. Plan to over the weekend. As my oncologist and many of you have said, I have a tough decision. My age and health (in shape, exercise regularly no family history of pc) put me at the top of the spectrum as far as recovering. Other than my age and free psa I would be a good candidate for AS. I do realize that there could be more pc than has been detecting in the biopsy but I don’t believe it’s a large amount. After my last dre the other day I was told everything was smooth and I have absolutely no symptoms. We’ll see.
I too believe some urologists are not necessarily looking out souly for your interest. Here’s a story. The Urologist that diagnosed me was very quick to try to set me up with his partner who does the Devinci surgeries. He told me his partner was having great success, “some of his patients are having erections with the catheter still in”. So I asked him how many has he done, his response was “he has already done about 40 surgeries”. Needless to say, I ran for the door there. Since then, his partner office has tried to contact me several times. They even called yesterday after I told them I wasn’t interested. I agree there is a considerable investment in Devinci equipment and perhaps some dr push you for economic reasons and not medical.
This site and the YANA site have been great! Thanks again

smc64, i think you are thinking the right approaches this. and I understand too with your wife being gone, mine is a very qualified nurse, and we shared in the research and decision for myself. the only point i think might be misunderstood (perhaps by me), is that you might be perfectly correct in thinking how low level your pc is at this point, and that's the only place i see a real gamble. your comment on your last dre, all 7 of my previous ones including right up to my dx were smooth, and syptoms, many men here, myself included, were in good general shape/health with no other sympton ahead of time, if you look at my pre surgery stats, had a pretty serious cancer going on that i would have known about other then having psa done since age 50 just because i was told that men should. some mens gleasons go down after surgery, but a larger percentage actually go up, as my dr said, until they have the entire gland to run through pathology, anything thing done ahead a time is like a "best estimate". one reason surgery was considered the"gold standard" is because it gave the best opportunity to see the best scope and range of the cancer. my interest to you, is not pushing my solution, or any other solution, but just don't want you or any other man with any pc dx to underestimate what it can do on its on.