Twenty-one months: From surgery to failure of SRT

Mike,

Let me see if I can say this correctly.

None of my concerns have anything to do with being outside some imaginary comfort zone.

I am not interested in published papers from a doctor, I am not looking for a pedigree here, I need someone that really knows what he is talking about. So I am not limiting myself to any particular group or entity here.

I need a doctor that is real in tune with the patient, not putting another gold star on his academic resume. Sometimes, that whole line of thinking reeks of elitism and snobery to me. I have seen guys here at HW, act like they are choosing a race horse, or ordering a Rolls Royce, when picking out their doctors. They only use a short list, that the rank and file of us just don't have the resources or other valid reasons to be able to use.

Again, call it left-handed stubborness, but my sense of logic tells me, that even if I did it exactly the way suggested, I would still be facing some flavor of HT, with no guarantee of it doing anything at all. And once again, the patient, me in this case, would have to make a tough call with only an educated guess to go by.

So what would be different in this supposed higher level opinion? If there is something different out there, then why isnt any one talking about it?

David

Post Edited (Purgatory) : 3/29/2011 12:35:08 PM (GMT-6)

David, I was going to ask you if you've read David Gosling's book, but did a forum search and it seems you have, because I found an earlier post where you said you could identify with him.

One of his main themes in his "The Wolf at my Door" is that his cancer repeatedly failed to follow any predictive model.  Your progression is also baffling.  I only hope for both of you guys that it also turns out to be unpredictable in that it settles into remission and gives you many, many more years.  If it can be unpredictable in its quick progression, maybe it can be equally unpredictable by retreating.  I hope so. 

David:
Just to clarify my position. I have been to a good cross-section of doctors in my life and experienced doctors via my parents and in-laws serious medical issues. Discussions about doctors, treatments and research are a daily part of my life so I am not just blowing smoke to impress anyone. I have a medical family surrounding me.

I understand the sense of elitism. Despite going to Hopkins, I had no intention of waiting for Walsh to do my RP because I wanted the "Father" of modern nerve sparing surgery to do my procedure. I went to Hopkins because it was close and because it was the best.

I sure did not pick Hopkins for price, even though when compared to the cost cited by other on HW in a discussion on PR costs, I was on the lower end. I was happy and surprised that it was not outrageously expensive. I guess Hopkins does cost averaging to determine rates for procedures.

The other option for you is to contact someone at the National Institutes for Health (NIH). They will do everything for FREE. All you have to do is have enough funds to fly to National Airport and take a Metro subway ride directly to the NIH subway stop. If you want to pursue this avenue of consultation/treatment, let me know. I will email you the details and will personally put you in touch with a doctor at NIH. I will contact the doctor in advance to let him know you wish to consult with him.

So in my evaluation of doctors over the years I found a few constants. Some doctors are leaders and some are just followers. From my prospective, I want the Dr. who is writing papers because he/she is on the cutting edge of understanding. You don't get to be at that level of medicine unless you are really smart, motivated and are very focused.

Speaking for myself, If I needed the answers that you seek on a strategy that would maximize potential success no matter how long or short lived it might be AND provide the best options for maintaining quality of life AND using any and all potential forms of current treatment protocols as well as any new treatments or combinations of treatments, I would put myself in front of the best doctor. I could find at Hopkins, or Sloan Kettering or Mayo or USFS or U of Michigan, or UCLA Med Center.

Its all about doctors who can see over the horizon and not just do the same protocols they learned in med school. It's not about gold stars or fancy advertising with the doctors I am referring to in this case. It is about people who are at the top of their game and who live and breath prostate cancer issues. They are gifted and get their kudos from healing sick people.

In pathology, why do people from all over the world send biopsy slides to Jonathan Epstein? It sure isn't because he is either good at guessing or has a great "Magic 8" ball on his desk that gives him the answers. He worked hard to achieve fantastic pathology skills and Hopkins is the environment where he can thrive with like minded researchers and practicing physicians. Centers of academic excellence are not just "happy accidents." The money and will to create top rated university/hospital centers is by purposeful design.

This does not address the issue of seeing someone who provides the warmth and personality you seek. In my experience, it is rare to find someone with outrageously great medical skills, research ability, and all those other high end attributes who also gives a lot of warm fuzzies. A few rare ones do, but to me it seems the business of high end surgery and deep warmth are more of a rarity than the norm.

I hope I have addressed the issue of what kind of doctor would be best at providing a high level opinion. I firmly believe that something is different out there. I don't get that opinion from reading posts on HW. I get it by reading the journal articles on prostate cancer and using my social science background, pay attention to the content of the articles, the depth of the research, the names of the researchers and doctors and the institutional affiliations. It starts to form a pattern. You see where the names cluster, along with the places they work. You see the depth of the investigation they conduct. It forms an inner circle of folks who are doing the heavy lifting in the prostate cancer field. Present your history to these people and let them use the depth of experience they have to give you options you might not have considered in the past.

You don't have to commit to being treated by them. I just think it is worth the effort to get a piece of the expertise they have to open the door to the world they reside and practice in on a daily basis. You don't know what they are going to say unless you make contact with them. Even if they offer nothing but the standard treatment you were expecting in the first place, that is still an answer. It confirms that the prostate Ca treatment protocols have not progressed any further than you thought. I hope that is not the case and they have some combination of old and new ideas that appear to work, but that road has not been traveled down by you or me.

I hope this helps to clarify my background and approach to this issue.
Mike

I just got back my 1st psa results since completing salvage radiation 2 weeks ago, and it went from 0.08 before to 0.05 at present. I am hoping that with time it will continue to decrease, but again, with a history of Gleason 4+5 and T3a, I am not going to be carefree about this. The reason I bring this up is in rereading Purgatory’s original post, I believe we all think about PCa a lot during the course of our days. We try to be brave, but bad news hurts and good news is, quite literally, a reprieve on life. Purgatory, you have received a lot of good advice on what to do now, and I have little more of value to add. One thing I can say is that although I have confidence that you eventually choose who to see and what to do, you bring up a valuable point. Dealing with this is the most stressful thing we do, as we can make choices, but the actions to help us are out of our hands. Even as a doctor (podiatrist), if I do surgery on someone, they have an active role in their own care (range of motion exercises, scar care, etc.) Here, for prostate surgery, the most care I had to do was clean the outside of my catheter daily, and for radiation, just show up. I think that this element of helplessness adds to the anxiety level. I believe (and I have seen some mention of this in some of the other topics here) sometimes we all need to just vent; to say we are scared. That, and having someone who has already gone down the road you are facing (possible HT) tell you that it is not that bad. It also helps to have good family support, as my wife is for me, and this forum as well. As before, best of luck to all of us.

Mel - I am hardly doing that, you seem to have a splinter up your nose on that subject, let's just say we will have to agree to disagree, and I am ok with that. I don't find that answer to be the miracle some think they will find.

Northfoot, thank you. Didn't know you were a doctor. Good luck to you too.

I did, and it was very good, thank you.