I'm a relative newbie to the world of PC even though I've read a lot of books and abstracts over the last 5 years. There is a lot of conflicting data and advice out there which makes any decision on treatment options extremely difficult. In the last 4 months since being diagonised I have read most of the books, Walsh, Sardino, and others, read many technical abstracts and books on diets, plus browzed many forums and other websites. (This forum and Yano are the best and continue to provide the most useful data).
I'm an analyst and skeptic by nature and try to look at all the statistics and data in an unbiased way, but because of all the confusion and conflicting claims the end decision really has to be a gut decision because you have to live with the consequences of it.
Statistics are very important in coming to a decision on treatment options, but as my stat professor wisely said "on the average every person in the world has one tit and one ball". Statistics are useful but they have to be questioned.
I initially thought I could treat this decision as I would a complex business problem case study, making a Harvard Business School decision tree with all the probable outcomes, then arriving at the best decision and outcome. I was wrong, this is a war and PC is the enemy that is trying to kill me so I have to do everything in my power to kill it or disable it so I won't be able to kill me. I was in a real war 40 years ago and survived and intend to do the same now.
The first thing in fighting a war is to know your enemy and how he operates then know yourself and your own capabilities. Getting as much intelligence as you can and developing a strategy that insures the highest probablity of victory. If you go in blind you will surely lose. It also helps to have the best trained people on your side in the fight.
I thought i knew a lot about PC from reading books and talking to friends that had been through treatment. I had decided that I had all the info I needed and was in the processs of scheduling surgery when my wife's doctor urged me to get a 2nd opinion. Only then did I realize how much I didn't know and would have been entering a gun fight armed only with a knife. I have since devoted a large part of each day learning as much as I could, and I have only just scratched the surface. I realize many of you newbies don't have the time or resources for a long research project and want to make a quick decision.
For you newbies I'll try to condense what I've learned and for the veterans some of this may be disconserting. But it's my take on all the info I have taken in, and I understand that it may have some flaws, but it is unbiased by not having to defend a decision or treatment I have already had. I'm always open to getting new information and will readily discard anything that is substantiated by other facts that are presented. Information is not emotional, it is either useful or not useful and I would rather have all the information I can get then determine it's usefulness without any emotional attachments.
1. Most men walking around have prostate cancer. Autopsies indicate that 34% of the men in their 40's, and 80% of the men in their 80's have PC. Approximately 2% will die from this disease. So the odds are in your favor when you start the fight.
2. In low grade cancers (Gleason 6 and low PSA) the cure rates for all options, surgery, radiation, active survailance, Cryo, Heat and hormone therapy are statistically the same. Some believe that most of these cancers are indolant and will never hurt you, and that's why the cure rates are similar. The data seems to support this, but you will have to make up your own mind and live with either the risks or the side affects of your decision, but basically the decision you make will have little affect on your overall survival rate, which by the way is very good.
3. In Gleason 8 and above and or high PSA the chances of reoccurance is high regardless of the local treatment option chosen. gleason 7 is tricky, as a 3+4 acts more like a 6 and a 4+3 acts more like an 8. The nomograms and partin tables support this and some of the best surgeons, like Walsh won't take patients with high risk because of the reoccurance rates. This would indicate that these cancers are most likely systemic and not local.
4. Bone and CT scans are pretty much worthless if your PSA is below 40. CT scans can't pick up cancers lesss than 10mm and this equates to .8 billion cancer cells. There are some new promising technologies but they haven't had the time to develop meaningful long term data to support their effectiveness. Clear scans just means you don't have a large detectible mass, not that the PC hasn't spread.
5. Just because you don't have a reocurance at 5 years doesn't mean you are free. Reoccurance is common at 10 and 15 years.
6. Doctors will most likely overstate the cure rates and understate the side affects of all treatments. Be a sceptic and do your own reasearch as to the complications and side affects. Hope for the best, but if you can't accept living with the worst side affects or risks of complications then look at other options.
7. Doctors will always recommend the treatment they are involved with, Uros recommend surgery, Radio oncos recommend seeds or IMRT and oncos recommend ADT3. This is not because they are dishonest, but because they don't research fields other than their own and constantly search only for data that supports their field of practice.
8. Fellow patients will almost always recommend the treatment they have had, even though they have complictions or it may not have achieved their original expectations. In the marketing world this is know as "congnitive dissonance". It is human nature to seek information that supports a major decision you have made and try to convince others to come to the same conclusions you have.
9. If you have a reoccurance the PC is most likely systemic and not local. It is highly unlikely that another local treatment will work. A lot of people chose surgery because if it fails then radiation can be used as a back up. If you are using this logic to determine your treatment then choose ADT3, because side affects are reversible and all other treatment options are still available. I'm not advocating this option, but it makes the most sense if you want to use this logic chain to determine your treatment.
10.There is a vast difference in the skill and knowlege levels of doctors. It is often said that the skill of the doctor is more important that the treatment option. Get the best doctor you can get even if you have to wait. Get as many recommendations as you can get from reading and forums such as this. Ask other doctors who the best are, they know. Most uros don't know a lot about PC.
11. Prostate Cancer is slow growing. If you have been diagonized you have probably had it for 10 or 15 years, so a couple of more months won't make any difference. You have time to get a lot of opinions, and ask a lot of questions.
12. The most important thing is to have your cancer staged properly, This may mean taking more tests, getting 2nd opinions on path and talking to doctors in different fields. If your cancer is staged properly you can make much better decision as to the best probable outcomes. If you are going into a gunfight you want the biggest possible gun and information is that gun. Don't dismiss radiation, or hormone therapy or other options because someone said something bad about them, there are a lot of myths that can only be dispelled by talking to experts and doing your own research.
13. The is no evidence that diet or exotic supplements can cure PC.
There is compelling evidence that diet and some supplements can slow the progression of mets, slow tumor growth and increase PSA doubling time. Diet and supplements are another weapon to bring into the fight as they can surpress the enemy so you can find another way to kill him.
14. If you choose radiation, adjunctive ADT3, or hormone therapy, drastically increases the effectiveness of the radiation. You want to hit the enemy with the biggest guns you can right off the bat so he doen't have any chance to recover. Logically this should also hold true for surgery, but I've heard very little about using ADT3 along with surgery.
I'm sorry to be long winded, but these are the hopefully unbiased thoughts of a newbie arrived at by looking at a whole lot of confusing data and trying to make some logical sense out of it. PC is highly individualized and individuals react differently to different treatments. Few things are written in stone so make the best possible decision for youself but only after researching and questioning everything.
I had a psa of 4.4 in 1999 and steadily increasing psa every 3-6 months before reaching 40 in 5-08.Free psa ranged from 16 to 10%
I had biopsies every year, 13 total in all. I saw 5 different doctors, all urologists or urological oncologists at Long Beach, UCLA, UCSF and UCI and had an MRIS at UCSF in 2007. All tests were negative and I was told that because of all the biopsies I most likely didn't have PC, but to keep getting biopsies every year.
in Oct 08 my 13th biopsy of 25 cores indicated 2 positive cores, gleason 3+3 less that 5% in 2 cores. Doc recommended surgery.
2nd opinion from a prostate oncologist, referred by my wife's oncologists said cancer found wis indolant and statistacally insignificant, but PSA histor was a major concern and ordered a few more tests.
Color Doppler ultrasound with targeted biopsy found a transition zone tumor 18mmX16mm, gleason 3+4 and 4+3. CT and bone scans clear, but Doc thinks that there may be lymph node involvement (30% chance) because of my high PSA, and referred me for a Combidex MRI in Holland, currently scheduled for Feb 14.
Changed diet and takiing supplements while I wait. The location of the tumor plus the high psa make surgery an unlikely option. I'm still evaluatiing all treatment options and will make a decision once I get the results of the Combidex scan.