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Posted 4/23/2012 12:47 AM (GMT 0)
I agree with some of what davidg says.
1. Once you find a physician extremely competent in prostate cancer, it makes more sense to trust his/her opinion
than discussions on the internet.
2. Unfortunately, most of the physicians influencing treatment choice with men that have prostate cancer, are not
unbiased, informed and highly competent patient advocates.
3. In today's healthcare, it is the patient's responsibility to better educate himself. Then he can partner with
his physician to mutually come up with a plan. No one is going to remove my prostate until I know all of the
facts. T
With 1 out of 24 positive cores, with a Gleason 6 with less than 5% cancer volume, it would be tragic to have CWren potentially go through an unnecessary treatment. He needs to get 2nd and 3rd opinions first.

Paul
Posted 4/23/2012 1:21 AM (GMT 0)
Comments embedded in green...

PDL17 said...
I agree with some of what davidg says.
1. Once you find a physician extremely competent in prostate cancer, it makes more sense to trust his/her opinion
than discussions on the internet.

PDL17, patient advocate groups encourage that patients "educate himself" for the best possible outcomes.  There are many sources from which one can gain knowledge, and the internet is one of them.  While educating one's self about PC, men gain understanding that not all physicians know everthing there is to know about PC...PC is like many different diseases...especially if the doctor is one who doesn't specialize in PC.  I think it completely goes without further embellishment that one will also not find everything one needs to know about PC on the internet, and one needs to be cautious about internet information.  Nonetheless, your point about finding a competent doctor, and giving him/her a high level of trust, is important.


2. Unfortunately, most of the physicians influencing treatment choice with men that have prostate cancer, are not
unbiased, informed and highly competent patient advocates.

Not all patients realize this at first (see my comment above).  This is an example of where the internet can be helpful.


3. In today's healthcare, it is the patient's responsibility to better educate himself. Then he can partner with
his physician to mutually come up with a plan. No one is going to remove my prostate until I know all of the
facts. T

Smart!


With 1 out of 24 positive cores, with a Gleason 6 with less than 5% cancer volume, it would be tragic to have CWren potentially go through an unnecessary treatment. He needs to get 2nd and 3rd opinions first.

Paul

 

Posted 4/23/2012 9:52 AM (GMT 0)
The Internet is a double edged sword though. There are great resources, but you may also be in a heightened period of anxiety and getting advice from someone with an agenda and/or worse someone who is terrible pessimistic or perhaps even bipolar or worse may not be the best way to head into trauma. I've had many medical professionals tell me to lay off the internet in such circumstances.

I know that the first ten links I found during my initial queries about PCa all told me I was going to die basically.

AS is far more advanced today than it was years ago. Probably why they changed the name from Watchful Waiting to Active Surveillance. But in a case like that of CWren, he stated his urologist is strongly against against it, he also suggested that it isn't for him.

Even AS professional proponents will tell you that one of the biggest obstacles for men who qualify is their psychological reaction to AS. If they are not cut out for it (and I can't blame them), then being on AS could actually be worse for their health according to Dr. Carrol of UCSF. So why propose it to someone like this?

There is also the issue of age. I agree that AS is often a no-brainer for men of a certain age, but early 40s is a different story. We know that a very large percentage of men who go on AS in their early 40s end up having treatment within 5 years anyway. We also know, as stated by Dr. Carrol and some of the resident experts here, that no matter how well planned out and how improved, their are some risks with AS. Dr. Carroll, who is a proponent of AS where candidate is qualified, mentions that low grade tumors in men in their 40s are probably going to grow and require treatment. This is not what some other experts seem to suggest and what their followers repeat here.

I didn't qualify for AS so I have no horse in this race, but I think it's always better to paint the entire picture and let the actual physicians do the advising.

As for the "entire picture", when one talks about SE he/she should really mention how there are many of us who opted for treatment with no side effects or minimal side effects, and that typically, although not always, the younger we are the better we do vis-a-vis these side effects.

I always took this advantage of youth into consideration when dealing with the darning reality that I got this disease so young. If my chances of recovery were better with youth, and if given my youth treatment would be required down the road, why wait and possibly hurt my chances of a great recovery?

http://www.ucsfhealth.org/education/active_surveillance_for_prostate_cancer/index.html

Post Edited (davidg) : 4/23/2012 3:55:08 AM (GMT-6)

Posted 4/23/2012 12:38 PM (GMT 0)
I want to thank everyone for all the support and advice you have given me. Unfortunately, I'm no closer to making a decision on how to proceed, but you've all given me a lot to think about. I meet with a radiation oncologist tomorrow, so we'll see how that goes. I guess my biggest fear with the radiation is that if I go that route, I haven't yet reconciled in my head that it could be a cure, that it won't come back in 5 years. However, I AM leaning that way. I guess that at some point, I'm just going to have to take a leap of faith and try to never look back. I do understand that, statistically, the cure rate for someone my age and tumor are virtually identical, I just need to find some way to convince my subconscience of that fact. I also have an appointment with a second urologist on May 17, so hopefully by then I'll quit this maddening see-sawing back and forth.

In the meantime, a plus to this is that it's scared the hell out of me enough to quit smoking and change my diet. I've also been taking monthly testosterone shots for a few years due to low energy, and from what I've read, it may be a good idea to stop those. I'm going to contact my family doctor today to discuss it.
Posted 4/23/2012 12:58 PM (GMT 0)
Charles, the cure rates for radiation and surgery are essentially the same for someone with your statistics.  Don't forget brachytherapy as a option. Do some research and get yourself comfortable with the FACTS so that you can make a rational decison and take some of the emotion out of the equation.

I also agree with some of the posters who have suggested you might consider AS given that you barely have cancer - in fact, I still hope you will take the time to get your slides read by an expert to see whether you have cancer at all. 

Finally, make sure you discuss those testoterone shots with your PCa doctors as well as you family doc. to make sure they have the full info.

Tudpock (Jim)

Posted 4/23/2012 1:03 PM (GMT 0)
Thanks Tudpock18, I will. I'm still kicking myself for not mentioning them to my urologist, but I didn't realize testosterone played a role until I started reading more. I'll tell him the next time I see him.

One question though...how do I go about getting my slides checked by an expert such as the guy at Johns Hopkins? Should my urologist still have those slides, and can he send them? Or do I need to request them from whatever lab they went to and send them myself? Is there a web site that gives more details on how to contact him for another reading? I've noticed several people who said that after having them double checked, their g score was higher. I realize that sticking my head in the sand is the worst thing I could do, but that prospect is a little scary.

Charles
Posted 4/23/2012 1:31 PM (GMT 0)

These are probably the world's leading experts in prostate cancer pathology who offer second opinion services:

 

In all cases it is an easy process, and they will coordinate the shipping of your slides back and forth with your local urologist.   

Hope this helps...

Posted 4/23/2012 1:46 PM (GMT 0)

cwren said...
I want to thank everyone for all the support and advice you have given me. Unfortunately, I'm no closer to making a decision on how to proceed, but you've all given me a lot to think about. I meet with a radiation oncologist tomorrow, so we'll see how that goes. I guess my biggest fear with the radiation is that if I go that route, I haven't yet reconciled in my head that it could be a cure, that it won't come back in 5 years. However, I AM leaning that way. I guess that at some point, I'm just going to have to take a leap of faith and try to never look back. I do understand that, statistically, the cure rate for someone my age and tumor are virtually identical, I just need to find some way to convince my subconscience of that fact. I also have an appointment with a second urologist on May 17, so hopefully by then I'll quit this maddening see-sawing back and forth.

In the meantime, a plus to this is that it's scared the hell out of me enough to quit smoking and change my diet. I've also been taking monthly testosterone shots for a few years due to low energy, and from what I've read, it may be a good idea to stop those. I'm going to contact my family doctor today to discuss it.

Well it's great that you quit smoking. Smoking can lead to cancer that is far more dangerous than the cancer you appear to have now.

There are no guarantees. It can come back after radiation, it can come back after surgery, and it can progress after being on AS. But as others here have told you, you have a very early form of the disease and you will do fine whatever choice you make. I imagine that more face time with different urologists and and radiologists will help clear things up for you.

Good luck.
Posted 4/23/2012 1:46 PM (GMT 0)
cwren, I noticed you posted that you have gotten "a wake-up call," and stopped smoking & made diet/lifestyle changes.  Many men to the same thing to help "stack the odds in their favor" for the best possible health outcomes...no matter what path they choose to deal with their PC.  Numerous medical studies have been completed which link lifestyle choices (especially diet and exercise, but also other environmental factors) to prostate cancer, aggressive PC and progression (or lack of progression) of PC.  Hopefully, you have already read the brief article I previously provided from Univ of Calif at San Francisco with low risk men (like you, based on what your've reported so far), and how diet & exercise impacted their PC...the average PSA of the "study group" (as a measure of PC progression) actually went down after a year-long study. Because of the strong ties between lifestyle and PC, nearly all of the leading PC patient advocate organizations publish helpful guides on diet/exercise.  Here's a good one: ·          Nutrition & Prostate Cancer – detailed publication (free, online) by a nutritionist specializing in prostate cancer from the Univ of Calif at San Francisco (one of the leading PC research institutions) addressing the scientific evidence, and resultant recommendations, that differences in diet and lifestyle may account in large part for the variability in PC Post Edited (Casey59) : 4/23/2012 9:22:34 AM (GMT-6)
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