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Posted 8/28/2011 1:37 AM (GMT 0)

Hello.

Guess it’s time to join the club none of us want to be in. First for a little history. I went to my GP 10/10 because I was having trouble urinating. He did a DRE and said that my prostrate was enlarged and wanted to do a PSA. I got a call several days later that my PSA was 75 and he wanted to get me a consultation with a Urologist.

11/10 went to Urologist and after he did a DRE said that he felt lumps and wanted to do a biopsy. My PSA had increased to 175 by the time I saw him. Had a biopsy 12/10 and he called me and said that I had “significant amounts of cancer” in my prostrate. He said I had a Gleason score of 9 (?+? He never said and I didn’t know what Gleason score meant). I guess I should have asked but it was all a fog to me. He also had a bone scan done and the cancer has metastised (sp) to my bones. He started me on HT immediately (eligard) and I just had my second shot last month.

I didn’t know that I had Advanced prostate cancer until I found this site a couple of weeks ago. I guess it was a combination of my denial and my Urologist’s failure to explain the severity of my condition that kept me from really looking into what this all meant. I’m not going to lay any blame for this just going to move forward now.

Thanks to all of you I now feel that I can start managing my care now. I’m going to get a second opinion from an oncologist and see where I can go from there. I am 69 and am sure I will see 79.

George
Posted 8/28/2011 2:06 AM (GMT 0)
Oregon Kid,

So sorry that you have had to join us, but welcome to an amazing group of people that are so caring and generous with their experience and knowledge.

Don't look back like you said you were not going to do. Spend your energy, time and resources attacking this horrific cancer. Get in as fast as you can to an Oncologist of good reputation so he or she can put you on the correct aggressive course of treatment. Go get the book Surviving Prostate Cancer by Dr. Patrick Walsh. This was recommended to me when I first posted and found that is the Bible of prostate cancer. This website also has lots of other great books, videos that you can refer to.

I too am a Gleason 9, which I wished we weren't but we did have a choice. You have a lot of good options to attack your cancer and the sooner you start the better you will be. Get some good books on PCa and educate yourself. No one will be a better advocate of your care plan than you. Someone gave me good advice and that is to always take someone to your appointments so there is another set of ears that isn't in shock and can better listen and repeat what the doctors are telling you. Ask around about the various oncologists, who is the specialists and have a great reputation. Don't waste your time with the average urologists and oncologists.

Good luck with your game plan and treatments and making it to 79.
Posted 8/28/2011 2:12 AM (GMT 0)
Thanks so much Devistated 1. I am sure that all will go now. Gonna go forward.
George
Posted 8/28/2011 2:15 AM (GMT 0)
Devasted 1. Sorry about the name change I gave you. Guess I didn't look close enough. I'm really new at this.
Posted 8/28/2011 2:32 AM (GMT 0)
George,

You slipped by the welcome wagon - guess I don't look at the survey posts much after I "vote".

That said, Welcome to HW. I think a medical oncologist is the best way to go, and hopefully you will have one who works with PCa in reach.

I'm also a G9 - 4+5, and on a rising PSA after surgery and RT, but not to your situation yet, so I can't offer much useful comment. There are a number of members here who do have that experience, and I hope they will chime in.

Posted 8/28/2011 3:08 AM (GMT 0)
George: Welcome to HW. I agree with 142 a PC Onc is your best show, if you can find one. You will find that there are several G9s here on HW. Know that all the guys here and sisters too are here to support us and help us when we have questions. You will find that the guys are just GREAT!

I hope you will hang around. There will be times you will be laughing out loud at comments. There are so many terms that go with Pa that we never use in daily life. You will soon know them all. Ask any questions that you have. We might be able to answer them.

Sorry you have such a twisted road with the high PSA and Gleason score.

Let us know how we can help and know that we walk with you.

Cajun Jeff
Posted 8/28/2011 3:27 AM (GMT 0)
142. Thanks for the welcome. After reading a this forum I know that I can get a lot of support here.

Cajun Jeff. You have no idea how good it makes me feel that I am not alone. My wife is very supportive of me and the love of my life. I guess that hearing from men that have walked in my shoes has really been the start of my conquering this disease. I will keep you all informed of my progress now that I have direction. Again, Thanks.

George
Posted 8/28/2011 3:57 AM (GMT 0)
OregonKid,
From another G9 guy on  hormone therapy, welcome. You will find a lot of good information and support here. We will be glad to try and answer questions. Keep us up to date on your next steps!
Posted 8/28/2011 4:55 AM (GMT 0)
George,

Welcome to HW and our little corner of the world.

Your uro definitely should have done a better job of explaining the seriousness of your dx. in detail. Any Gleason 9 has serious ramifications. To be a 9, it would mean you are either a 5+4 or a 5+4.

I agree with the others, you need a good medical oncologist, with heavy experience in PC in particular, before making any primary treatment decision.

I wish you well, and we were all new here once, so there's no such thing as a dumb question, fire away, and hopefully we can help you with some of your concerns and questions.

The "brotherhood" and "sisterhood" here is genuine and sincere. We are all in this PC mess together, we fight the same enemy, but differnt battles on different days.

My best to you, and keep on posting, PC brother

David in SC
Posted 8/28/2011 7:54 AM (GMT 0)
Oregonkid,

Sounds like you have such a positive outlook which has got to help you a lot. I am sorry that you have been going thru this though.

I actually spotted your name "Oregonkid"...Thought I would say "Hello, to a fellow Oregonian." Since becoming a member here on The Healingwell Site, I have never met another Oregonian. So, its very nice to meet you. I was born in Springfield, but have been raised on the west side or Portland since I was 2 (46-now).

If you ever want to chat my email is posted on my profile. Will be thinking of you & wishing only the best for you. Best of luck to you...Smiles sent your way.

Your Healingwell Friend,
Serenitee

Loop ileostomy May 2011, Currently; Pelvic & Bladder Trauma & Dysfunction, caused by...Colon tore thru Vaginall Wall then the Colon + Bladder fell out of my body together thru the Vagina, causing much destruction in pelvic region. Vaginal Vault Lift w/mesh, 2-Bladder lifts w/mesh, 2-rectoceles. 15-surgeries over the years on different areas & 2-more this year if everything works out.
Posted 8/28/2011 12:32 PM (GMT 0)
OregonKid

Sorry you have to join our club but sounds like finding us may be your salvation as your URO certainly has kept you in the dark the last year. I agree with all the advice here, you need to seek out an PC oncologist even if you have to travel to find one. I know there are really world class ones in the San Francisco area, so hopefully there is one in the Portland area too. Get Dr Walsh's book that was recommended it has become my bible on PC during my journey.

My wife and I are both Oregon State grads but we live in Alabama. Most of our families still live in Oregon so I guess we should be considered Oregonians some. My wife grew up in KFalls.

As you see from the many GS9"s here with advanced PC, your cancer can be manged and with the right treatment you will see 79 and hopefully 89.

Good luck my new brother,

Terry the Water Guy

Posted 8/28/2011 1:01 PM (GMT 0)
Hi Kid,

Another Gleason 9 here to chime in. Sorry you have to come here, but we welcome you and will help in any way.

To learn more about your situation, you might begin at the Prostate Cancer Research Institute site. They have many free papers that discuss all aspects of prostate cancer. Check out this page: www.prostate-cancer.org/pcricms/node/16, which lists papers by stage of the prostate cancer process.

The Walsh book mentioned above is an excellent reference, but for advanced cases, the book by Dr. Snuffy Myers is excellent both for it's dose of optimism and for discussion of strategies for handling difficult cases.

Best of luck in your search for the right doctor and the right treatments.

Nellie
Posted 8/28/2011 4:30 PM (GMT 0)
OregonKid - Welcome to the club no one wants to be part of, BUT if you are part of the club - this is a wonderful place!

At age 63 - I was diagnosed on 12 July and has been a whirlwind of activity and concerns - HW has been a fantastic resource for me. If you are interested my journey is on here https://www.healingwell.com/community/default.aspx?f=35&m=2169075

You have the right attitude "I am 69 and am sure I will see 79. "

I tell my medical team - "My plan is to live one day longer than my wife."

Live Long and Prosper!

You may also want to consider Zometa - its for bone health, a transfusion which takes about 20 minutes

Bud
Posted 8/28/2011 5:35 PM (GMT 0)
Let me start by thanking all of you for your outpouring of support. Boy I feel really good right now!!!

Southern Comfort - Your support is greatly appreciated. As someone said us "9"s have to stick together.

David - I am going to call OHSU Prostate Center in Portland tomorrow for an appointment. They have a large staff of oncologists that specialize in PC. Will let you all know how that turns out.

Serenitee - Thanks for your offer to communicate with me. I will probably email you soon. I was also glad to see someone else here from Oregon.

Terry - I have ordered Dr. Walsh's book and will read it throughly. Thanks for the recommendation.

Nellie - Thank you so much for the PCRI site. I will be reading quite a bit there today. I have also ordered Dr. Snuffy Myers book and am going to watch some of the videos on his site.

Bud - I have read your experience with PC here on the HW forum. I can see how your attitude got better as this wonderful group of ladies and gentlemen reached out to you. Ain't it great? I love your statement of "My plan is to live one day longer than my wife." I hope that is exactly what happens to me although she is 8 years younger than me so I had better hang in there.

Again Thanks to All!!!

George
Posted 8/28/2011 6:08 PM (GMT 0)
George,

Having the right attitude is half the battle and you certainly have that battle won, Now to defeat the dang cancer you are taking the right steps. A consult with the OHSU Prostate Center in Portland IMO is the right choice.

Looking forward to hearing nothing but good news from you in the future.

I had conversation this morning with my bother in law in Portland. He is 64 and has a PSA over 5 and his URO told him not to worry as a high PSA doesn't mean anything at his age. smhair His 94 year old father is currently in the final stages of advanced PC  that was diagnosed and basically untreated 15 years ago. With his family history of PC, I told him to fire the foolish doctor and hire a new URO.

Terry the Water Guy

Posted 8/28/2011 6:15 PM (GMT 0)
George

I think it is a law where husbands are not allowed to ever mention the wife age.

Bud
Posted 8/28/2011 7:18 PM (GMT 0)
Welcome George and it looks like you have been well recieved by others. I am a Gleason 8 so not far behind you. Stick around and keep us updated and I wish you the very best.

Michael

Posted 8/28/2011 7:29 PM (GMT 0)
George, Welcome to HW. I don't have much to add to all the advice you have received. Educate yourself, find a good oncologist, check if there are any clinical trials dealing with your case, and stay positive. Good luck and please keep us posted.
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