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Re: Are we in a panic over nothing, or at least not as big a deal as we think?
No doctor can give a survival time. I have a friend who was diagnosed 8 years ago with very advanced PCa and given the maximum of 6 months to live. That was eight years ago, to-day he has an undetectable psa and leads a full and active life.
Why concentrate on survival time?
Can any one gaurentee that the next time you are on the road that you will not be involved in a fatal accident. There is more of a chance of you being killed in a car accident than dying of prostate cancer.
Take one day at the time and make the best of every minute. Relatively very few men die of the disease.Today there are many advances in medication. In the hands of the right medical team the chances are that you will die with the cancer and not because of it.
Very,very important to get a qualified second opinion. Go to the Mentors list and see for yourself that pca is not a death sentence. Learn about the disease. Do not put the cart infront of the horse.
Relax and enjoy life
Re: Are we in a panic over nothing, or at least not as big a deal as we think?
Dear Larry and Cathy,
I echo Lenny's thoughts here. He is so right....no doctor can give you a survival time. There are many many examples on this site of guys who were told they had only a few years to live and are still around, even 10 years later, defying the gloomy predictions.
Take a good look at the Yana Mentors list and you'll see what we mean. You can learn more about the illness and its treatment on sites like this than you can usually ever learn from your urologist or oncologist.
I know it's easy to say 'Don't panic' but please try not to.
Get that second opinion, and go on to fight and win through this battle.
Re: Are we in a panic over nothing, or at least not as big a deal as we think?
Thank you for the replies and encouragment. I have already learned so much from this site, I forget to see the hope in all the people that have 10 or 15 years or more with PCa.
What is concerning us is that we haven't come across any stories, and my wife and I have read lots but not all, where the cancer was so agressive as to go from non-existent in Jan '08 biopsy, to T1B in Jan '09 biopsy, to advanced PCa, pT3a pN1 in June '09. It escaped the prostate and entered the cavity and a lymph node in under 4 weeks, at least according to the 2 readings we had done of the bone and Cat-scans, which again we SEEM to be hearing is very rare and very quick.
My current Doctor is the second I've seen, and we have spoken with a third Doctor, albeit at the same practice, so I'm a bit hesitant to go to a forth Doctor just yet. My only problem with my current Doctor is accessibility, but he is a world class surgeon, Mayo Fellow, and teaches RP at the Medical College of Virginia, so that sort of comes with the territory. MCV is the home of the first heart transplant, and a long string of other firsts, as well as having Noble laureates doing research there, sadly not in PCa though.
I personally don't like using teaching hospitals but no one can deny MCV is one of the top ones in the world.
My surgery was done a St. Mary's in Richmond Va. and I will unreservedly state that everyone there is top drawer, most especially the nursing staff which is the best I've ever encountered. I did a lot of sports when I was younger and I've had lots of experience with nursing staff's as I've been in various hospitals for a few non-disease repairs over the years. In fact I was getting in shape to have my right knee go through Faulkerson, which takes about 18 months to rehab but was like a miracle for my left knee, when this whole PCa business came up.
I really do appreciate everything and everyone here a great deal, this place has been a life saver, as much for my wife and daughter as for me! But, I'm also an engineer, and while anedotal evidence can point the way as to how to become the exception to a rule, it cannot illustrate a statistcal universe of which I'm now a part. In my office we have an IBM PC Model B, Intel 8086 that still runs after 27 years. I keep it around to illustrate this prinicpal to the people we work with. I can, given a large enough sample, find a significant number of exceptional cases to any engineering rule, sadly that doesn't mean that they are the rule, just as my Model B certainly is not.
This is why I'm trying find trend data, regression analysis, pretty much anything that will let me conceptualize my new statistical universe. That won't stop me from "going down swinging", now that I've decided that I'll even accept ADT, there is pretty much nothing that I can imagine that would get me to give up.
Re: Are we in a panic over nothing, or at least not as big a deal as we think?
Larry:
Welcome here to the site. Your situation is not unique as you have, or will learn. It is certainly surprising and unique to you. You have been helpful in stating your engineering and IT background so I think what I offer will be appropriate and proper. Regarding survival, the greatest follow up for men with node positive (microscopic) surgery patients at ten years is from Mayo by Boorjian, et al, Journal of Urology, September 2007. There is also a Mayo follow up at 15 years in BJU International by Ward, et al, April 2005. Both these groups were predominantly margin positive post op as well, and/or T3 clinically also. These two reports follow men with ADT alone after surgery, no radiation adjuvant, as is often now recommended, and chemo in very few cases because it was not approved until a few years ago. Cause Specific survival (CSS) at 10 and 15 years was 85 and 68 percent. The famous Messing clinical trial for N+ men has had a recent update and at 12 years from surgery men treated with ADT only were still disease free, by psa level, in 60% of the cases. Most of these men were from the earliest days of the psa era, 1987-1993. This means most were treated before Casodex or Avodart arrived. Men so treated and followed today will likely outlive such numbers, perhaps to a significant amount.
This means for you and me, that we are to focus on the long view. This will perhaps become a chronic condition that will require monitoring and a sequence of treatments over a long period; long enough for new and better treatments to arrive.
Re: Are we in a panic over nothing, or at least not as big a deal as we think?
I might suggest you find the articles by Dana Jennings on the NYTimes website. He seems to have come down with a very similar prostate cancer situation. Try to read the first couple for sure, he has been writing on roughly a weekly basis for many months now.
Re: Are we in a panic over nothing, or at least not as big a deal as we think?
Cathy and I just wanted to thank everyone the contributed to this thread. We got quite a lot of material out of it, and it has helped allay some fears.
Now it's just the interminable waiting till the end of July of the next PSA. I've found myself living PSA to PSA and that's not good. So, Cathy and I are throwing a big party for the 4th.
Re: Are we in a panic over nothing, or at least not as big a deal as we think?
Larry,
Sorry to read that the post surgery pathology upped the ante. I do think you may be misinterpreting some things though and this is causing you some unfounded worry. Biopsy results and pre surgery scans should never be taken to mean the result is the absolute extent and grade of your tumour. The biopsy plugs are just samples from various regions of the prostate and can well miss higher grades of Gleason when they are taken. Higher grades of Gleason also produce less PSA per CC than lower grades so lowish PSA can mask the extent of high grade tumour. Likewise bone scans will only show up areas of possible metastases in the skeletal structure which you say were clear on your bone scan. This scan is fairly reliable. However CT and MRI are notoriously bad for picking up the extent of the tumour in soft tissue. What all this boils down to is the biopsy and scans indicated that you were T1b, 2.9PSA, Gleason 7 but post surgery pathology showed this was not the true case. Therefore, please don't jump to the conclusion that the difference between biopsy and surgery pathology means your tumour is growing wildly. If the surgical margins were positive then your are correct that ADT and perhaps radiation to the prostate bed are in your future. For the time being all you can do is wait for the 6 week PSA result and then with your doc decide on the next step if necessary. But reassure yourself and your wife you are not about to go anywhere for a while yet. To help make you feel somewhat better I would suggest you read the stories of the Gleason 9 and 10 guys. Best wishes for the upcoming PSA.
Bill
Re: Are we in a panic over nothing, or at least not as big a deal as we think?
Hello Larry,
Another engineer ! Gosh, we do seem to see a fair few.
Anyway, just to add that I agree with previous comments. In particular that mistakes do happen with diagnosis. Some of your anxiety could well be based on unreliable random results as in the biopsy needles. They are a bit hit & miss.
I have certainly seen cases of G6 or 7 turning out to be G9.
Positive side is that the primary tumour is gone. Not just treated as in many cases but removed. So mopping up can be achieved with R/T and/or ADT as mentioned.
As to prognosis figures; they are mostly unhelpful in my opinion. And best ignored.
Re: Are we in a panic over nothing, or at least not as big a deal as we think?
Larry,
The Prostate Cancer Research Institute website has a lot of informaton on advanced PC and also a section of tools used to determine a prognosis.
PAACT also has a lot of information.
There are a lot of men that have been on HT for over 10 years that are living good productive lives.
JohnT
Re: Are we in a panic over nothing, or at least not as big a deal as we think?
John Thompson
Larry,
The Prostate Cancer Research Institute website has a lot of informaton on advanced PC and also a section of tools used to determine a prognosis.
PAACT also has a lot of information.
There are a lot of men that have been on HT for over 10 years that are living good productive lives.
JohnT
I don't know how I could have not come across these sites, thank you very much for the reply. Between this and the data that Tarhoosier pointed me toward I'm finding my curiosity satisfied. Besides being a geek for a living I just love software tools. :}
I've made some, what I think, are good strides in the last month in getting a realistic handle on all of this. I've come up with a personal mantra that is working for me, which is something like, "first I have to live through this, then I'll decided if I can live with it, cause the other way around won't work.
If I had that attitude in January, when the biopsy came back, I would have had the RP done that week, and maybe I wouldn't be in this position today. BUT, as Robert Heinlein used to say, "if only" are the two worst words in any language.
While of course I'm hoping to be one of the lucky few I've also been reading, and preparing mentally as well as physically to deal with life as a chemical eunuch.
I've dropped 40 pounds, though I need to do about another 25, using Golds gym to get more solid to fight loss of muscle mass and to build up bones to fight osteoporosis, swimming to increase energy against the fatigue and malaise, as well as the cardio aspects. I'm not doing crunches yet, the surgery is still a bit raw, but I hope to start them next week. I was an athlete through college and kept in shape until 40 something, but I've let myself go and that has to stop. On the upside I know how to train so it's just work and discipline.
I've also been reading material from others on how they used mental discipline to replace the aggressiveness, maintain weight, and fight going soft. Those are the parts I can do something about, so I'm doing them. I figure I may have to become a eunuch to survive, but with some serious effort I don't have to look or act like one.
