Balancing time and decisions

Sleepy,hello and welcome here, glad you are among us. Your case proves an interesting point that some don't seem to get or even want to acknowledge. There are aggressive cases of PCa, the kind where you don't have the luxury of spending months getting opinions and options. There are cases, where time is of the escence, and you have to do what you have to do to get a handle on the cancer. In your situation, you have a much more serious situation then you originally thought. I see you had your surgery one week after mine, so I hope you have healed pretty good. Please stay with us hear, hope we can learn from each other. My best to you.

David in SC

welcome to the sight Sleepy I hope you hang around and join in the discussions. We have a wonderful loving family here with many diverse personalities. There is a wealth of knowledge that you will not find anywhere else. So ask questions and share comments.
peace and love
Dale

Sleepytime this reply is not a dig towards your journey, you did right by dumping the first uro (asap). Maybe the second uro is fine in your situation and nobody likes to second guess, that is not fun for anybody. I want to make a point not on you but on this type of situation that is commonly seen and perhaps others may ask more questions from both of these types of docs that the may meet and it may make a difference in their journey or mindset.

First uro-doc no doubt another expert, says like you said 'PCa is slow growing most of the time'... Did he have your pathology (biopsies) information reviewed, did he explain the risk of Gleason (4+3) over it being Gleason (3+4), (with 4+3 and your psa level, absolutely no slow growing) did he mention that in nomograms or Partin tables with those higher psa scores that you would have much-much less odds than 50/50 for curative surgery? (maybe as low at 15% chance.....hmmmm)

Although second uro has a point about saying, you probably should not do any waiting around with seriously aggressive cancer(that is sound advice to consider), did he even mention you could if you chose to...start a hormone therapy while you thought about it or looked into other treatments that could and should be your___ right to have full disclosure and options on for a life threating and life changing disease???? This is compassionate medical advice and totally sound practice, why tell anybody they have possible other choices or options, when you can rush them into something whereby you make plenty of money. If you did not have insurance they may not see the rush to get you anything. In my book a 'real expert' secure in his hypocratic oath and self as a servant and not playing God himself....he is to be totally fair and upfront, disclose it all good or bad, use nomograms and partin tables and show them to the patient (why are we hiding information-agendas???), tell the patient why you are good at what you are doing (they usually all do that), tell them "if" you want to think it over or get another opinion....I am here for you....asap...if need be. Funny how they usually can fit anybody 'in' when crunch time seems to lurk around.

Hey I could be totally wrong on this(but don't think so)......keep your eyes open on all PCa issues....myself I make no money off of anybody and only want to see patients get "total" fairness and disclosure and mulitple choices.....which if you notice some of those other choices seem to do alright.

Don't shoot me as the messenger....if I was the doc or had time myself I would have told you "all" possible considerations up front (and I am sure there are some I don't even know about) I'm talking about 'all' known options. That is why free discussion opens the doors for change, we can hold them accountable, we can help inform the doc....hey you do the math for me...what are nomograms and partin tables saying about my disease level, can you show me or print it out, please!!! You are the expert show me the nomograms.....and I'll show you da money. (lol)

zufus, I am gonna shoot at the messenger here. You have a constant theme of multi-consults, multi-doctors, fire em all until you find the ONE, and present a general suspicion of the medical profession. All well and good, but have you considered how someone who has already made their decisions or someone who has to make it but has neither the resources or ability to do that multi approach, either because of location or financial circumstances or other important reasons, feels when they keep reading your many posts on the subject and thinking that they have maybe/probably/are gonna make a mistake if they don't consult multi times, research and discard until finding the golden ticket that will assure the absolute best results? Best world scenerios are fine, but real world reality does take its place more times than we would like or we can imagine. Your advice is fine, but I think we all need to remember there are many different people with many different circumstances that we can't begin to understand, and we need to be more helpful than pointing out how many different ways they can/could have done it better or how many different ways they can mess it up or have messed it up. A little understanding that people are different and their approach or the path they may have had to take would be helpful to balance your message.

Ok, enough said it is hard enough being new to the jungle of PCa.

I will take a vacation at this point.

zufus, I guess its the classic is the glass half full or half empty. Your posts are almost always to to the half empty side, almost never to the half full. Hope sometimes can be a preception in one's mind and heart, its a key survival tool, I would never take that aways from someone. I don't know you personally, so not going to pretend, but I suspect that you have been damaged/hurt by the medical profession, and that underneath it all, you are scared and worried. No crime there, no foul, we all are, even when we put on our best faces in our PC paths.

Big believer in freedom of speech and I don't like censorship, but I guess you have to ask yourself, are you really trying to help those in need here, or is there some other agenda or axe to grind? If it is the later, then I don't think its helping the many people that are here with pending PC dx, pending tests and biopsies, pondering complicated and difficult treatment paths, dealing with their fears and uncertanities, and having to integrate all of this with their spouses/partners and their families members, and perhaps employers too. That's a lot on anyone's plate at one time, don't you think?

Since I had my first major medical event involving a life saving operation and 10 days in ICU unit, I can only think of one dr that has ever worked on me or with me that I "fired". He was a neurologist here in Greenville perhaps 10 years ago or more. He was an obvious egotist, and thought he was some kind of big rodeo star in his private life. He acted like a vain game show host. On the morning of a scheduled spinal tap, while on the table prepped, I had enough, and aborted the procedure and severed it with that man. My next neurologist was older, wiser, patient, and had great bed side manner, and we got along well. But that's only one bad dr for me since 1981.

With your attitude, I bet the medical people tune you out as soon as you show up. Do you even consider yourself a compliant patient? Do you follow sound medical advice, or do they write you off "as chosen not to follow medical advice?"

David in SC

Hi Sleepytime,
Welcome to HealingWell. I am sorry if anyone has made you feel that you need to be questioning what you have done so far. Personally, I believe you have made great decisions. I am a 3B brother of yours though you doubled my PSA of 20. You are also my brother in faith and you will have my prayers for you and your family. I have read some interesting studies that are showing that even with a G9 and PSA of 40, surgical removal of the disease prostate is life extending. Your undetectable PSA, which by the way is in nanograms per millileter (ng/Ml), is cooperating nicely. 5-10 years is a good starting point, and bucking the system and chatting here with me in 15 years is most welcome. May peace be with you!

And welcome to the best site on the web for compassionate care and support.

Tony

Hey zufus - all your points are well taken. But in my case, my urological oncologist did walk me through countless different scenarios. For me I felt that surgery offered me the best chance of cure (though very, very low) and allowed me greater flexibility for followup treatment later. Initially, we discussed starting hormone therapy AND radiation two months after surgery, but my oncologist has now asked me to wait on the radiation until we could discuss it further at our next appointment. He has informed me of the most recent studies and anecdotal evidence, which don't necessarily reflect standard protocols, i.e., multiple concurrent therapies versus mono therapy, changes in diet, exercise, and stress reduction. Furthermore, I know for a fact that doing the surgery did not line his pocket.

As to being informed about all the implications of prostate cancer and the associated therapies, it's impossible to communicate within a forum all the information that a doctor bestows, but I feel that my oncologist has done a very good job of informing me. I have only had two surprises since the surgery. First, I have been dealing with incontinence and adult diapers for 14 years because of my neurological issues. Imagine my surprise as my daytime incontinence has reduced to minimal stress incontinence. The doctor says it happens occasionally because the bladder is forced to retrain. This was a good surprise. Second, I did not understand that with non-nerve sparing surgery Viagra would no longer work. That was not a good surprise.

Because of all of my neurological issues I have seen countless doctors that are clueless. But I have also had the privilege of being under the care of several who were truly world class. Being under the care of some great doctors taught my wife and I how to be pro-active in our health care, which we believe has paid off in regards to my prostate cancer treatment.

TC-LasVegas - thanks for the apology, but it is unnecessary. If I was concerned with reactions I would have just kept reading and not bothered posting. Thanks for the encouragement, and yes... let's keep chatting for the next 15+ years! God bless.

Sleepytime - welcome to HW and I am thankful you have found a better doctor and more time (hopefully much more). 

Purgatory - I like the idea of a 10 or 15 year reunion.  Let's plan it.

Tim