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12 of 12 cores positive. Is it a death sentence? Weeks? Months? I'm scared.

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Posted 1/14/2009 2:58 AM (GMT 0)
Thanks, David. I sent for the book and will read it through as soon as it arrives. Dr. Myers is just over the mountain from me so I'll see if he will give me some personal advice. From what I've heard so far, the book will be a big help.

Thanks.

God bless you.

Mike
Posted 1/14/2009 3:06 AM (GMT 0)

Mike:  Another positive piece from your biopsy is that it looks like everything is Adencarcinoma and not some exotic type of prostate cancer which can really get hard to handle.

I just got off of the phone with Gordy(Les) at some point try and contact him again he has some great info. and ideas.

David

Posted 1/14/2009 3:08 AM (GMT 0)
I will. Thanks.
Posted 1/14/2009 4:18 AM (GMT 0)
I just got advice online from a respected doctor that I go to one of the major cancer centers in the US, such as Johns Hopkins or Duke, for a second opinion. Will my Blue Cross handle that, do you think? Would you do this rather than stay local in a very small city. Once I made the decision and made an initial recovery from first-line treatment, make the move to Israel to be close to the people I love.

Can I handle this first-line treatment living alone? How long might it take?

Thanks for your continuing advice and support.

Mike
Posted 1/14/2009 2:47 PM (GMT 0)

Mike:  In my opinion that doctor is correct, the larger centers have everything you need and all of the experience also.  I went to M.D. Anderson in Houston for a second opinion and I live in the Seattle area, I was so impressed with their facility I moved my treatment if any more is needed down there.  Hey, Its only your life you're dealing with.  I believe Gordy has done the same and he lives in the New Jersey area.

David

Posted 1/15/2009 4:05 PM (GMT 0)
Hi Mike,

Not a particularly good biopsy report.....one of the more detailed ones I have seen especially with all the differences in each part of the prostate. I am a Gleason 9 survivor although my cancer had escaped the capsule and invaded the seminal vesicle on the left side. This is definitely not a death sentence as if I'm correct your bone scan was negative which is great news. If further tests show that the pca hasn't escaped the capsule you will probably have surgery, then hormone therapy plus some type of radiation treatment. Keep your chin up, some of this stuff is scary but after the initial shock things will start coming together. Your doc will develop a treatment plan that will work for you. Plan on being around a long time, I felt the same way when I was diagnosed as I also have a 15yr old son to watch grow up.

All the best,

JW
Posted 1/15/2009 4:28 PM (GMT 0)
Mike,
Where are you? Sounds like you might not be far from me. There are some GREAT PCa support groups in the area. Mine has several guys who had PSA's in the thousands who are around and doing fine. You do not have a death sentence. pm me paulrnelson at yahoo dot com.
Paul
Posted 1/15/2009 6:01 PM (GMT 0)
You could consider starting on hormone therapy immediately while you take 1-3 months or more and decide upon what treatments you might consider, it buys you time (alot) to see docs, get opinions, compare modalities. Not just my (freakin) opinion but many onco-docs and some others, it is more common than you would know. If going this route casodex or its equal prior to Lupron (LHRH drugs) to prevent "flare", which in your case we don't want any possible flare. Your psa will drop like a rock within 1-3 months, you do get some side effects to deal with, buys time to decide...."priceless" when considering removing your original parts (OEM-factory parts are one time gig). You could still do all treatments, it may be more difficult to do surgery however because of these drugs, still possible and with all the other choices you might wish to consider other roads to travel.

It is your decision basically, docs may steer you to their modality, some are unbiased enough to say look elsewhere or go look and comback when you are ready. I prefer the unbiased types the most and for good reason, read my history gig. Some docs treat PCa with only drug therapies even some people with low stats and with decent results( Leibowitz etc.). Not saying don't consider surgery, but in your case (like mine) the nomograms are not your best friend to look at the odds for successful surgery. Maybe nothing is a total success, but what risks do you wish to take etc. It is your choice, these choices exist for good reasons, not because someone like me happens to like choices.

When interviewing your docs for opinions listen closely (tape it perhaps) as to claims and cure rates or anything related and then compare to your second opinons docs, see if they add up properly. Question everything and don't be slammed into anybodys plan, until you review it or sleep well on it. Then once you take a course of "informed action" don't second guess it that would not serve you, still further choices down line exist and alot of them.

Z-Bob (it is not my opinion only on this-it is also what most oncologists say, they know PCa from many perspectives, and patients whom fail treatments seek them out, especially PCa onco-docs)
Posted 1/15/2009 6:46 PM (GMT 0)
Mike,

Zufus is correct. You have a clinical diagnosis that dictates there is an extremely large and agressive cancer. Homone deprivation therapy is the treatment of choice in most Doc's opinions from virtually everything I've read and heard thus far. Snuffy Meyers comes to mind when I see numbers such as yours. The positive side.....A great many do quite well for a long, long time. There are men with low PSA's and high gleasons (8-10) who have had surgery and done well also. I noticed Yana had a few on their site. Good luck in whatever decision you make. Hang in there.

Swim
Posted 1/16/2009 12:01 AM (GMT 0)
Paul - Hi. I'm near Harrisonburg, VA across the mountain from Charlottesville and the University of Virginia.

Swim - Thanks for the encouragement. I'll be going to one of the cancer centers for a second opinion. Snuffy Myers is just across the mountain from me, maybe half an hour away. I already have his book and will follow his diet to strengthen my immune system as I go forward in the direction the doctors think is best to control the cancer.

Zufus - Good info. Thanks. I'll listen to my urologist and ask for a referral to Duke or Johns Hopkins. They will be unbiased and have the expertise and experience that I need. If I get a higher survival rate if my parts are removed, good-bye parts. I have to be around for a 16 year old as long as I can. I'm fighting for that.

JW - Thanks for the encouragement!

Thanks and love to everyone.

Mike
Posted 1/16/2009 12:35 AM (GMT 0)

Ok Mikey did I detect scarcasm on that, just because some center appears to be experts is no guarantee that you will absolutely get the best treatment results, you should and might get the best treatments. Not saying surgery is bad, some people are not reasonable candidates for it or might choose other treatments with either, close, better, or way better, or much lesser results too. Dr. Patrick Walsh considered the best in the world (should be too-surgeon) cherry picks his patients and rejects many others, I found one of my data things on comparitive stats, it is dated back to around 2000-2002 era and needs to be updated as those numbers could have changed some (probably not hugely). Use this for fyi and  be skeptical, don't pitch it out though, find comparitive data and see what you can find and compare, some might conflict, then keep weeding it out. Always look with open eyes, question it all is healthy, find more information or abstract....you are the patient that is getting x.y.z. treatment and whatever side effects and risks. Yes  John Hopkins has fine surgeons and also radiation onocologists (the guy I choose was trained at John Hopkins),and also their oncologists, suggest you see all three of them when you get there(do it individually not collectively)....then tell me after your consultations what you find especially after you thought them out. Or are you only getting one opinion????

Hope it is 100% correct for your sake no matter what it is and good karma to you. I would hate to see you totally pissed and disappointed with your treatment no matter what it is, I spent all this time on this thread to try and inform you and anybody looking of the value of second or mutliple opinions, perhaps I should give up for others sake. Question everything or one can easily choose not and go with the flow. Do choose the best track records or experience level you can find is wise.

Center          Cure Rate         Type of Treatment:

Bahn/Lee         55%              cryo   (see The Bahn et al Cryo Report)

Scardino          59%              surgery  (published study)

LomaLinda        61%              protonbeam  EBRT  (probably IMRT now-since '02)

Blasko/Grimm     66%             (Si/EBRT)

Catalona           68%             (surgery published study)

Walsh               72%             (surgery  published study)....probably higher since '02

Stone               73%             (si/EBRT or mono SIS- 2003 AUA...)

RCOG                83%             (Si/EBRT)   adjust to 10 yrs.

At  10 years, all adjusted to a definition of failure of any type to .20 psa at 10 yrs. post treatments. Some are saying cured after 10 yrs.

I thought Walsh would have way better than that, and he might as to this date 2009, numbers should have gotten better, will look and try to verify.

Z-Bob cool  


Posted 1/16/2009 5:03 PM (GMT 0)
Really missing on that list are Strum/Lebowitz/Myers but I would guess that their "cure" rate is low being that they are oncologists dealing mostly with advanced prostate cancers. Also I bet other factors weigh in these numbers. Catalona and Walsh are well known surgeons. Thus people will travel to see them if they feel that they will give them a better result. Thus it isbetter to look at surgery versus surgeon, or cryo therapy versus the cryodoctor, and radiation versus the radiologist.

Much can be said for any modality. Still, good post.

Tony
Posted 1/17/2009 12:22 AM (GMT 0)
WOW Mike I am seeing so much love and concern pouring out here on HW. I would agree that the biopsy is not great but it is what it is so lets dig in build some artilery and come out fighting. Hope is the one dimension in life that can only be taken away if we allow. Right now you are shocked and scared and rightly so. I would encourage you to research, read, and ask all the questions you can. The more you know the better off you will be. Mike, my approach to most things are spiritual and I know that for some here they would rather not here it but I truly believe that a healthy emotional and spiritual self will better equip you to deal and fight this monster. THere is plenty of life ahead my friend and many new chapters to write. Buckle down and fight for the hope, love, and dreams, that make up not only who we are but who we aspire to be. We are all brothers in cancer here and we all truly do love each other. Stay with us and allow us to be your strength as you embark on this journey.

peace and love
Dale
Posted 1/17/2009 12:36 AM (GMT 0)
Hi Dale,

All that concern is having a good effect on me. I'm calmer and more accepting of where I am now. I agree with you. Your connections to higher powers, whether God or nature or the Dalai Lama or the Lubavitcher Rebbe, gird you for battle. And we're all in it together. I'm beginning to really feel that as I talk to more people.

Love and Peace,

Mike
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