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Posted 9/20/2013 11:52 PM (GMT 0)
Gleason 3+3 DRE Neg 3 out of 16 cores positive PSA 10 Age 67

Just got news from Doc and of course he wanted to do RP. I felt like he was trying to sell me a car and he kept going down the list of products. My "BS" detector went off and he and the hot nurse were shocked that I did not want to get this over with...just not ready to hang my prostate over the fireplace. I felt so violated by this doc who is nothing but a "commissioned" salesman. My wife's best friend works at the same place and knows how they get compensated.

When I explained to him that I was not ready to do ...ANYTHING...he just shrugged and told me I already have ED soe what is their to lose? He said he could spare my nerves and I asked if I could have the deed to his i.5M house if he didn't spare them.... he acted offended. I explained that I had mouth cancer surgery and am now paralyzed from my upper lip to my lower neck and the surgeon asssured me he would avoid the nerve....funny how I had to waive that the night before surgery.

What has our healthcare come to?

Gonna get some second and third opinions for another Uro I know and MD Anderson in Houston.

I live in Nashville if anyone has any ideas. Also contacting Dr. Andrew Katz in NYC.

I am 67 and have beat cancer once and have no qualms about living forever...I know I am on the "back nine".

Would appreciate your thoughts and comments.
Posted 9/20/2013 11:58 PM (GMT 0)
Welcome, Jake, to our world here at HW PC.

Sounds like your head is on straight right from the start.

You are wise to this doctor, there's many a uro/surgeon that wants to push the newly dx right into surgery before they even have a chance to grasp the fact that they have cancer. You are smart to see this in this doctor.

With a Gleason 6 dx, there's no need to rush or be rushed into any primary treatment. Consider all your options, including Seeds and other forms of radiation. It's even possible that AS is appropriate for you.

Please get a hold of Walsh's great one volume book, "Surviving Prostate Cancer", version 3. It's a good primer on all things PC> Good starting point.

Take your time, get a good second opinion on your slides, to make sure the dx is correct. And then take it from there. Next step would be to meet with a good radiation oncologist and view your options that route.

We are here for you, to answer your questions, to give you support, etc. Very experienced bunch of men and women frequent here, all ready to help you.

Good luck, and smooth sailings.

I am in your neighbor state of SC. We have another new member from TN recently too.

David in SC
Posted 9/21/2013 12:11 AM (GMT 0)
Welcome to HW. Sorry you need to be here.

I am with you - whenever someone starts selling me something that hard, there is something wrong with the deal.

Having said that, surgery might be a valid option but in your case there are likely a few other to consider. Radiation, IGRT or Brachy would likely work just as well. What you do have is time to make an educated choice. Start learning and talking to lots of doctors. You need to find one you can work with.

Ask us any questions - lots folks here have been through it and will be willing to share their experience.

Hang in there and keep us updated on your progress.
Andrew
Posted 9/21/2013 12:15 AM (GMT 0)
my thoughts are that what your doc said was out of line but that I hope this doesn't descend into a doctor bashing thread. In your shoes I'd look for an oncologist to discuss the issue with and get a second reading on the slides. Good luck.
Posted 9/21/2013 12:39 AM (GMT 0)
Take your time, talk to LOTS of people, read a lot here on HW. You are wise to be skeptical. All the best, and keep us posted.
Posted 9/21/2013 7:59 AM (GMT 0)
Jake,

I love your attitude. I can only imagine how many "used cars" that uro sells to those who don't have the presence of mind not to sign up for his next available slot on the DaVinci. In his defense, I'm sure he's convinced it's the way to go if it were him -- but it's not him, it's you, and we're all different. It's a decision that no one should be rushed into, imho.

It seems like AS may be an option for you to explore. Even if you don't feel comfortable with that, you probably have the luxury of time to explore available options.

Did you mean Dr. Alan Katz in NYC for SBRT? If so, I think the world of him, and he has done more of them than anyone else. A link to his latest report is in my signature.

I hope you find a doctor and a treatment that is right for you.
Posted 9/21/2013 10:59 AM (GMT 0)
I appreciate all of your comments. This is not my first "rodeo". I had mouth cancer and had it removed at MD Anderson (Houston). Referred to oncologist in Nashville. Wanted to do severe radiation on neck and mouth. Would need feeding bag and lose saliva glands and senses of taste possible forever. Recurrance rate 10% if I did it or not. Told them they made it easy for me. The treatment was way worse than the cancer. I passed on any treatment. The oncologist tried to make his case. Really hard.

about a month later, the same Oncologist called me to tell me that he had just returned from seminar in Denmark where the worldwide protocols had changed. Now they would not use radiation on my small cancer cell area removed from lymph node in my neck. Got a nice scar on my face from under my ear across my jaw bon down to my adams apple. When asked about it, I tell folks I fell out of bed making love and broke my jaw.

Now cancer free in mouth, head and neck. My prostate cancer has nothing to do with my previous cancer since head and neck cancer cannot mastastize beyond that region of the body.

I am skeptical of Oncologists for this reason and the fact that they killed my mother and two good friends who had Prostate surgery have had a world of trouble from the radiation/chemo. To me, consulting an Oncologist is like asking the Boston Strangler for a neck massage. No so bad to start but they get carried away.


I had a third degree heart block two years ago and flat-lined twice. I looked for Elvis and Hank Williams at the end of the light but the room just got dark and peaceful. So I am not afraid of passing.

I am kinda like Willie Nelson who said he might die in the arms of a Chino woman or by drinking too much Tequila but would never die running on asphalt in the August heat in Texas.

At this point, I am going to make some lifestyle changes, live everyday like it is my last and take my chances. I feel like I am playing on "house money" anyway.

There is a simple solution (Kanzias) out there and maybe one day there will be a great cure for this disease.

Thanks to all of you for the comments and concerns.

(please note that all misspelled words are intentional)

JM
Posted 9/21/2013 11:57 AM (GMT 0)
Jake, I also think your attitude is great and that you are doing the right thing by taking your time and looking around at alternatives. During my early days I was talking to multiples docs and specialties and ran into a surgeon that was just like your guy. He actually led me from the examining room to his scheduler to get me set for robotic surgery. Not that it would have necessarily been a bad choice - but I just was not as eager as he was to help him amortize his new toy.

Let us know how it goes and if we can help in any way.

Jim
Posted 9/21/2013 12:28 PM (GMT 0)
Welcome to HW!

I read your last post and I'm still laughing. Really liked the parts on the jaw ... and Willie.

Seems to me you've got a plan. Good luck.
Posted 9/21/2013 1:21 PM (GMT 0)
I hope no one minds but I'm pasting most of my response to MOWOG as this situation is so similar:

Most men diagnosed with prostate cancer will die of something else - usually heart disease. If the males in your family are lucky to make it to 75 and you feel quite good right now (other than the trauma of a cancer diagnosis) why take a chance on messing up your potential last 8 years of life with the complications of a surgery or radiation? If males in your family tend to live to 95, perhaps surgery or radiation may be more of an option.

One of the positive aspects that I find about Active Surveillance is that it is a heck of an incentive to ensure that I'm living the most healthy lifestyle possible - one that includes reducing meat, sugar and salt consumption; increasing consumption of fruits and vegetables and getting sufficient physical exercise. I don't think I would have as much incentive if I had surgery and I probably would even feel that I needed a few indulgences as compensation. It is not impossible that, if active surveillance motivates you to make some positive lifestyle changes, that this cancer diagnosis will result in you living much longer than you otherwise would have by avoiding a heart attack. Most of the lifestyle provisions for AS are the same as for reducing the risk of heart disease, which is a much bigger killer of men than prostate cancer.

That all being said, AS is definitely not for everyone and you always have to weigh the risk that you may have a more advanced cancer than a Gleason 6. But you owe it to yourself to find out more about it before committing to a decision.
Posted 9/21/2013 1:33 PM (GMT 0)
You have a better nose for b.s. detecting than PCa smelling dogs, I loved reading your story. Docs act like it is illegal to get second opinions or go against their knowing all wisdom, then they add the guarantees program of which you didn't fall for immediately. I got 8 opinions, really saw it all, salesmanship, lying and straight honesty too.....I saw that jungle close up, something not written about in books. Just for laughs I know a guy whom had similar stats, he said screw it to all normal protocols and did ADT3 for 13 months and then monitor on proscar thereafter....well that was 1996 and still has his prostate and recently color Doppler biopsies by Dr. Lee found no cancer (currently). He has no regrets for not rushing into a modality (this story is never told, must not be good for sales???)
Posted 9/21/2013 7:07 PM (GMT 0)
I was diagnosed in March '09. Spoke with a radiation oncologist who told me that I have 8 weeks to make a decision for treatment by him( which included IMRT and Brachy), that there was a 50 percent chance that the cancer was outside the capsule.

Fortunately for me, like you my BS indicator was working. It is now 54 months that I am doing "Active Surveillance with Delayed Treatment if Necessary"

I strongly recommend that you see a specialist in Active Surveillance, various major institutions have this available.

There are various protocols for AS...I believe that at Johns Hopkins it is PSA less than 10, 2 cores or less G6 with less than 50percent involvement in each, that is the percent of cancer in each of the cores. Prostate size versus PSA 0.15 or less.

I strongly suggest that you have a second opinion on the pathology from your biopsy by a world class pathologist that specializes in prostate cancer so that you are not under or over treated.

Posted 9/22/2013 1:55 AM (GMT 0)
JM
Jake - you are referring to radiation oncologists. I would recommend you seek out a medical oncologist since he/she is not predisposed to cutting or zapping. Hopefully a MO from a national PCA center to referee the debates between the urologists/surgeons and the radiation oncologists.

LupronJim
Posted 10/4/2013 1:09 AM (GMT 0)
I finally found a good doctor. He told me we will do AS and not do anything for 1 to 2 years.
Doc made me an appointment with Radiation Oncologist to discuss options and develop game plan.

My Doc initially likes Cyberknife for me.

Doc spent about an hour with me and drew several charts showing me my options. I am 67 and he said if I was 55 might go for different option. Does not like Divinci even though they have one.

I sure do feel better.

Thanks to all of you for the support and kind encouragement.

Jake
Posted 10/4/2013 11:12 AM (GMT 0)
I felt like he was trying to sell me a car and he kept going down the list of products.

I like your analogy, Jake...been there....didn't do that!
Posted 10/4/2013 12:05 PM (GMT 0)
Hey Jake and thanks for the update - and congrats for settling in on a decision. Please keep us up on your journey with AS because that is a great option for the newbies that will follow with the right set of PCa statistics.

Best to you!
Posted 10/4/2013 1:44 PM (GMT 0)
Hi Jake, and welcome.

The real question for men with low-risk "prostate cancer" is whether or not to aggressively treat it at all, or to "treat" it as a chronic issue needing monitoring. A lot of eager-beaver doctors may try to rush men into surgery (perhaps before the patients learn much about PC), but the doctors who are considered the world's thought leaders on PC generally tell their low-risk patients something along the lines (Dr James Eastham's, from Memorial Sloan Kettering, exact words) of, "let's wait and see what happens."

Hearing the word "cancer" freaks a lot of people out into a "get it out now" short-term mentality. I encourage men with low-risk indications (like you) to move cautiously, and educate themselves about how different PC is from all other cancers before leaping into (perhaps unnecessary) action.

We've started a thread for newcomers to the PC world to help accelerate the learning process. It's located at the top of the the list of current threads, and can be found Newly diagnosed with PC? - read this thread first

best wishes...
Posted 10/4/2013 4:35 PM (GMT 0)
Jake, sounds like a great plan to me. Please keep us up to date as time goes on.

Good luck!!!

Jim
Posted 10/4/2013 4:55 PM (GMT 0)
Jake,

I'm so glad that you've found that AS works for you. If for no other reason - and there are many - it gives you time for other treatments to evolve. Already SBRT, which was originally only done on the Accuray CyberKnife platform, is being successfully delivered on a host of other platforms. If you ever do decide that you are ready for treatment, who knows what new treatments will be ready for you?
Posted 10/5/2013 6:51 PM (GMT 0)
Allen,

I wonder, have there been studies comparing Accuray Cyberknife results with other platforms. I am most interested in knowing how Novalis compares with Cyberknife.

Thanks you,
Posted 10/6/2013 12:41 AM (GMT 0)
H&O, Let me reply in a new thread.
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