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Beth ... you're on the right track ... read everything you can, learn, listen and, as George suggested, read every word written on this site ... very valuable stuff.
From your post, the first question I have, and one that hopefully you will have answered soon, is about metastasis ... any evidence that the cancer has spread outside the prostate?
That could be the determining factor in any immediate treatment decisions.
It was for me. After five or so years of PSA values jumping from 45 to 65 (with no symptoms) it doubled to 115 early last year. Family/friends finally convinced me to undergo the biopsy and it came back positive. Many subsequent scans concluded that it remained localized (I got lucky) so I chose radiation seed implant followed by external beam radiation ... which I just completed in mid-January of this year.
At 60 years old I was convinced that that treatment plan was the best for me considering quality of life issues, especially incontenence and impotency.
I'm still recovering from severe urinary symptoms (pain/burning/frequency/urgency) as a result of the radiation treatments so I'm still not sure if I did the right thing. Keeping fingers crossed though and will have an updated PSA in the near future.
Good luck with your Dad and, as George said, there is hope.
Like the others said Beth don't panic, although most of us did when we got the news. I am 58, and was diagnosed last Oct. I was convinced that the seed implants were for me. We had consultations with two surgeons and one radiologist. Like you, all said I was a good candidate for either. What finally made our decision was the fact that there is more up front recovery going on with surgery, but when it is done you know where you stand. They can do a pathology test on the prostate. I had a pretty easy recovery. I am pretty athletically active, run 3 days a week, lift weights 2, play tournament tennis and play golf. I increased my workouts two months before my January 24th daVinci surgery which I believe helped. I spent 2 nights in the hospital, had the catheter out 10 days after surgery. No pain at all. Walking was slow for a week or so, and could not bend over to tie my shoes for about 3 weeks because of stiffness in the mid section. Urinary functions are not bad either. I am down to 2 or 3 pads per day now, and completely dry at night. The worst part is waiting for the first PSA test after surgery. I will get my results from that in 2 days. My neighbor's 71 year old father-in-law also had the same procedure that I did 4 weeks ago. He is also doing very well and is going to play golf this weekend. What ever decision you make will be right for you, so don't beat yourselves up over it like we did. I wish I would have found this site BEFORE I had the surgery.
Good luck to you all and keep us posted. Email me anytime. lpullen@cox.net
Sorry about the rush last night. I have a bit more time now (which may be night where you are!)
First let’s look at the positives:
1. Your Dad clearly has an excellent support system in you and your Mom. That makes an enormous difference, especially if part of the support system (that’s you!) are computer savvy.
2. You have a good relationship with a medical practitioner whose expertise is in this area of physiology. You need to be aware that as it is likely that he is a surgeon there will inevitably be some bias towards surgery, no matter how hard he tries.
3. The Gleason Score (GS) is not a bad one. There are two basics about GS that you should always bear in mind. The first is that reading Gleason Grades is not an exact science, but is subjective, so the actual scores can vary considerably – up and down. If you’re reading through all the stories on the site, you’ll come across that of Dave Mendez from which you will see that on the eve of his planned surgery, the surgeon’s pathologist said that he did not have prostate cancer. I’m not saying that to give you false hope, because it is not a common occurrence, but to emphasize the utmost importance of having a second opinion for any biopsy. The second is that GS have ‘migrated’ in the US over the past ten years or so. Had your Dad been diagnosed when I was diagnosed, 12 years ago, he might well have been scored as a 5 or even a 4. The reasons for the ‘migration’ are complex and so I wont overload you with all the information right now, but it is important to know if you are making any comparisons or looking at data that relates to an earlier period.
4. Your dad’s PSA is not very high and some of it is almost certainly due to the infection your report late last year. If you don’t know it already, you need to know now that PSA is NOT prostate cancer specific. A high PSA level is associated with infection of the bladder or prostate almost twice as many times as it is with prostate cancer. You may say at this stage, but he has prostate cancer! And that is so, but not all the PSA will be related to the PCa. One of the easy tests that might point to how much is from what is to look at the size of the gland and the so-called free PSA – both pointers although neither is definitive. To give you some idea of how high PSA levels can go, one of our members is Trueman Seamans whose PSA Was 4,212 when he was diagnosed almost 10 years ago – and thankfully he is still with us. The highest I have ever seen reported was over 12,000 and that man was still working as a cargo pilot in the US 12 years later.
5. Your Dad is in good health and has longevity genes.
The negatives are
A. That his brother died young from prostate cancer, although from what you have said, his treatment might not have been as good as your father could expect to have today. My personal view (not one shared by everyone at all) is that there are some dangers in overly aggressive treatment in that the immune system can be damaged which can lead to a more speedy advance of the disease – or indeed some other disease developing. Again there are some studies that might demonstrate this but I don’t want to overload you.
B. The fact that four needles of the biopsy are positive. Although some of the positive needles have very small positive specimens, it would be better to have fewer positive needles.
As far as I am concerned, the positives outweigh the negatives by a considerable margin, making it most likely that your Dad would be in the low risk category of diagnoses and only just outside the insignificant tumour category. The latter being a diagnosis where the best option is most likely to undertake what is termed Active Surveillance, which may also be your Dad’s best option once you have all the data you need to make a good decision.
You say “We would REASONABLY like to find the best 17-20 year treatment for my father and WITH quality of life (that gets him to 88-91 and a reasonable age given his history).”but regrettably that would be like finding the pot of gold at the end of the rainbow. The state of the Prostate Cancer Industry as far as good data is concerned is an absolute disgrace: there is nowhere that it is possible to find good, solid reliable information that will help you in your quest. A recently published document Comparative Effectiveness will give you the best overview.
Us old timers have come to the conclusion that, all things being equal, it doesn’t make any difference in the long run which of the many treatment options a man in your Dad’s position chooses as long as he picks the very best person or team available to carry out the procedure. In making this choice, it is important to evaluate the people concerned on their own results and experience, not on some published study.
I hope this helps some. Take your time, you have plenty – studies have been done that show a man with your Dad’s diagnosis has months, if not years to make the decision that suits him best. And keep asking questions – here, to me, or wherever you think you can find the information you need.
I have to second(and third)the advice Do Not Panic. Your father and family should take all the time needed to study all options. With a Gleason of 6 you do not have to rush. I know its hard hearing the "C" word. Fisrt impulse is AHHH get rid of it now. Do not give in to first impulses. I have only been diagnosed for three months so I am still searching and learning. The first thing I have learned is that for most men there is time to carefully consider options, research the docs giving the treatment, and then choose what feels right. It seems there is no definitive "right treatment option" out there. Every one has its own benefits and risks and when you boil it all down, all have seem to have similar results.
Thank you so much to everyone who has responded (and emailed). We go to meet with the radiologist tomorrow morning re: seed and IMRT.
Is there any place I can find the scientific studies of the recurrance rate over 5,10, or 15 years for someone similar to my dad (aka, 71, 4 of 6 biopsys, 3+3 Gleason) based on each treatment option?
I think he's leaning towards surgery with the belief that it will give him the best chance at a cure and save the radiation treatment options for later (since I hear you can only get radiation one time).
Also, would you recommend having his biopsy slides sent to like John Hopkins for a second opinion?
The "amount" of tumor is what concerns me a little (4 of 6 positive and tumor on left and right - T2c). Our urologist said there was an almost 0% chance that it had metastisized and he wouldn't recommend him having any additional tests at this time to see if it's spread (aka, the bone scan or die tests). Does that seem normal? Are the tests extremely accurate? Knowing for sure might help our decision.
Beth:
I agree with those who have posted that time is, indeed on the side of your father. I think that many urologists who see a man with clinical factors such as your father would not refer to CT scan or Bone scan because the chance of gross metastasis is so small. To address your question directly, for those men who are curable, radiation OR surgery, performed by the very best practitioner (KEY ITEM) can be equally successful. If there were a clear and obvious advantage to one, then that is what everyone would choose. Surgery has risks that radiation does not have, and these risks accumulate with age at treatment. Continence and potency are both affected by each treatment. With the G score and doctor opinions you mention then it is certainly likely that your father will not die of prostate cancer. Repeat: statistics show that men in the position of your father are most likely to die of other causes.
My situation was fairly different from your fathers on several counts - my age (40) being the biggest variable - so I can't point to any specific advice on best treatment plan but I have a couple of thoughts based on my own experiences.
First, yes, get the sample reviewed by another pathologist - Dr Epstein at Hopkins is probably the name most often mentioned - I sent my sample to him but it was also reviewed by the two top surgeons (or their own pathologists) who I met with.
Second, like everyone says, don't panic. I took my time (4 months) making a decision (having a Gleason 3+3 and 6% positive in one core I felt comfortable with that). It's important to remember that every specialist has his own preference - surgeons will want to perform surgery, radiation oncologists will want to perform radiation, etc. To compound it further, open RP surgeons will play down robotic data and robotic surgeons will advance their own claims of recovery rate and side effects. Probably the most important thing is to find the best team of doctors for treatment and feel confident in their ability to effect a cure.
