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Newly diagnosed - Tx for High Gleason?

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Posted 2/22/2009 10:21 PM (GMT 0)

Well I finally got the results of my biopsy (while halfway through my vacation in hawaii).  Two of 12 cores positive, one a Gleason 6 and one a 10 (20 percent of that core involved, whatever that means).  Not what I wanted to hear.  I have an appointment tomorrow at the Walter Reed Center for Prostate Disease Research, an all-day affair where my wife and I meet with surgeons, radiation docs, a psychologist, etc., to help decide on a course of treatment.  I have learned so much from all of you on this site already, and would be interested in hearing your opinions now.  Does surgery make sense for a high gleason score?  What is the main question I should be asking my urologist (or the other doctors) right now?  I always thought that if I had a positive biopsy I'd have plenty of time to make decisions but now I think I'd better move out quickly.  I'm scheduled for a bone scan and a CT scan - hoping those come out negative.  Luckily I have a very stong, supportive wife.

My dad is still hanging in there, not at all bitter or depressed, although I tell you end-stage PC is not pretty.  I haven't told him or mom of my dx - they don't even know I had the biiopsy.  One other question - is there a thread I can direct my wife to regarding stuff she should know, and if so how do I find the thread?  Thanks very much.

Steve

Posted 2/22/2009 10:55 PM (GMT 0)
I am 49 now. I was diagnosed last year. My PSA went up one year over a point. The doctor put me on antibiotics. After a month, the PSA went down. I was tested 4 months later, PSA up again. I had a biopsy and it came back Gleason 7 (3+4) (6 out of 12 samples taken were cancer). I went through the anxiety you are going through now. I ultimately decided on surgery and the post op came back gleason 8. After my bisopsy and diagnosis, I didn't tell anyone for 3 days. It was the longest 3 days of my life. for me, I needed to talk to someone. I uge you to talk to someone and continue talking. This site provides a lot of help and information. One thing I did was write down every possible questions when I met with the doctor. I wish I had taken a tape recorder with me because I was so strung out and stressed out, I forgot half the things he said to me. I went for surgery with gleason 7 and would have gone with gleason 8.
Posted 2/22/2009 11:19 PM (GMT 0)
Tony has a list of questions to ask doctors that is very good....Concerned DC....I am a wife, and there are no sites that I know of for wives..( other than this) ..I have learned so much here, and I post for my husband.....Good luck to you and come back and the guys will get you on the right track.....Diane
Posted 2/22/2009 11:32 PM (GMT 0)
ConcernedDC,
Tony's link to the questions for your doc are linked in the post below. A tape recorder with you is a good idea as suggested as a lot of things do not register...............check it's O.K. first with the doc as a matter of courtesy(I couldn't see why any would object)
www.healingwell.com/community/default.aspx?f=35&m=1355474

Bill
Posted 2/23/2009 12:33 AM (GMT 0)

Concerned,

With a gleason of 10 you should also add a prostate oncologist to the list of doctors you see.

JohnT

Posted 2/23/2009 12:40 AM (GMT 0)
Hello and welcome Steve. Sorry you need to be here, but its usually bad news like your dx. that brings people here. I feel HW is the best patient to patient prostate cancer site you will find. With your stats, and the fact that your father is in hospice with PC, you will need all the help and support you can get, we will do our part for you. As JohnT above mention, and others above his posts, you need to make your rounds with the best of the best for consultations. Glad you have a good supportive wife, that is so important in what may lie ahead for you, many of us do and it really helps. My best to your father too.

David in SC
Posted 2/23/2009 12:49 AM (GMT 0)
Steve welcome to the site. The anxiety your are feeling is very normal and let me just say there is no better place anywhere than right here at HW to share it with.
please share in the discussions and by all means ask plenty of questions. I am not the person with much knowledge but I am someone you can lean on for emotional and spiritual support.
I look forward to hearing more from you
peace and love
dale
Posted 2/23/2009 1:38 AM (GMT 0)
Steve,
Sorry to hear about your Dx. My biopsy showed very similar results to yours. I had 2 cores scored as 8 and 9. I did the CT and bone scan and they were both negative. At that point I opted for surgery (robotic) with the intention of doing radiation later if cancer has spread beyond the prostate. My pathology report was encouraging. I had so seminal vesicle invasion and had clear margins. The doctor had to go wide on the left side where the positive cores were. I'm now waiting to take my first PSA test in few weeks and hoping for a big fat zero. Your nervousness is understandable but don't lose hope. Get all the information you can and decide on how to proceed.
Posted 2/23/2009 2:06 AM (GMT 0)
Concerned,
We understand what you're feeling right now. It's a scary time. There are tons of options, so don't panic. This site is a great starting point. I also joined a live support group and I have to say it is one of the best decisions I made. Look at www.ustoo.com. It is a nationwide support system for PCa patients and their wives. Your wife will be able to connect with other wives and you will meet some great guys. The internet is great, but nothing compares with real life support. The American Cancer Society has a great support system too http://csn.cancer.org/.
I was diagnosed with PCa the day before my dad died of it, so, wow, do I relate to what you're feeling in that area. I too did not tell my mother until I had scheduled my surgery. Reach out, stay connected. As a good friend of mine who had PCa at 44 told me "you've got some rough paddling ahead of you, but you're going to be fine." I say the same to you.
Posted 2/23/2009 2:36 AM (GMT 0)
I must say it is rare to see a Gleason 6 and a Gleason 10 in the same arena of PCa diagnosis, I cannot remember seeing another patient with this much difference but this is PCa and exceptions exist.


Suggestions to you: get the actual pathology report in your hands bring the information onto this forum and others (also learn what is says)- always verify PCa things that could have you make life altering decisions on is wise. Next probably ask to have your pathology sent to one of the handful of pathologists that are considered 'The Experts" and see if that Gleason 10 is correct or even the 6, it is well worth it and do not be swayed by the docs you maybe seeing that it is not worth it or such (bull). Google search: PCa pathology and find: Bostwick, Oppenheimer, Epstein, Grignon, Lucia (insurance will cover it or pay the fee) you might also ask for the additional 'plodity testing' especially since you have a possible gleason 10. Have seen many times that reviewed pathology is not what the original findings were, usually not done by the top experts first time in many cases and need review, even so 2nd opinion on major parameters is not dumb.

Dx-2002 (Age 51)Urinary blockage-emergency room, bPsa-46.6  12/12 biopsies all 80-90% cancerous (loaded), Gleasons 7,8,9 both sides similar, ct and  bone scans (showed clear, does not guarantee anything) histology type of cancer  Acinar  (ADT3+rad+ADT3-off-on/DES-off-on again Nov. 2008) psa currently  .36

Posted 2/23/2009 2:41 AM (GMT 0)
ConcernedDC -

You may want to read my recent post titled "High Risk Info." I had surgery in DC - apparently with a Gleason 9 case - and I'm doing OK. My doc says surgery (or at least his surgery) is a viable option for high risk patients. But incontinence and ED are always post-surgery issues. All treatment paths have their pluses and minuses. Be sure you do as much research as possible and get comfortable with a treatment path.

Lots of good info and support here -

I wish you the best,
kcragman
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