Diganosed Gleason 9 Today

I would have to echo what Tony said above, second opinions, as you can see below I was told by 2 leading surgeons 1 in Atlanta and 1 at Dana Farber in Boston that they would not do surgery because of the nodule felt and that I would have positive margins, had medical oncologist and radiation oncologist af Farber tell me that they felt during dre that Seminal V. were also involved.

I had surgery at Emory, path showed negative margins, and no Seminal V. involved.  I have found that most Dr.s look at the overall stats and not individual cases.  At Farber, one of the oncologist got out his hand held and told me I had about 5 years.  In Dec, it will be 2 years and i'm still at .04 due to my surgery and prayers that were lifted up.  I'm just a lowly lay person, but this is how I felt about that cancer in me, if I have a snake in the house I want it out.  And if you have surgery with your path, don't concern yourself with ED, as I told someone, I would rather be a live steer than a dead bull.

I'm glad to see you are taking charge, that is the right thing to do along with research.

Thanks for the positive and supportive comments.

I totally agree that in many cases doctors and their staffs become so detached and see these circumstances so often that they forget the anxiety and fear the patient is experiencing. In my case the main fault (in my opinion) is the doctor’s office manager. Like many in her position they take a very controlling and protective role and run the show. My antenna was raised on the first visit to the doctor’s office where I observed her acting very superior to other staff and condescending to patients who approached the registration desk.

As a Former VP of Human Resources with a long history of evaluating and assessing people I knew eventually there would be a problem with her. Probably the doctor never even saw the biopsy report she probably just filed it in my file and could have cared less that it was serious diagnosis.

That mistake on my part will never happen again! I will be sure to have a discussion with my new doctor and every other doctor I deal with that I will not be undermined my some staff member when my life hangs in the balance. If the doctor has a problem with that he/she will be gone too! One thing I have learned is when it comes to my survival I will take no bull s _ _ _ from anyone.

You may be able to tell my frustration is gone and I've kicked into my assertive mode...ha!

Jack

Just a quick update.

Tomorrow Tuesday 8/26 I have an appointment with my new doctor to review the CT Scan & Bone Scan results along with the original Pathology Report.

I picked up a copy of the report and CD's of the scans today from the hospital and will bring them with me tomorrow. The report and CD's are sitting on my desk as I write but I am not going to open them....partly because I'm scared what they may say and partly because I may not fully understand what they say and get concerned for nothing. I'll leave the report reading to the doctor!!

I'll keep you all posted. Once the results are in then therapy can be decided.

Again thanks for all your great suggestions and your support!

Jack

I second that. Good luck tomorrow! And you have my prayers, too.

I visited my new doctor today and he reviewed the results of my CT & Bone Scan.

The CT scan shows that the lymph nodes are involved and the bone scan shows cancer in my right hip.

He referred me to an oncologist who I am seeing today. The plan is Hormone Therapy and perhaps chemotherapy as part of a new targeted chemo that is in clinical trial and is being conducted at Hackensack University Medical/Cancer Center.

I would love to hear from those of you who are on hormone therapy only and haow that has worked and the side effects.

Thanks

Jack

I had no PC in my family so this whole thing caught me by surprise. However, I had a doctor friend tell me they now know that breast cancer in women is the same gene as PC in men. When he told me that he did not know that boty my mom and sister have had breast cancer. Well, of course I don't know if any of this is true, but it is obvious from all the guys on this sight who have PC in their family and they have PC that it does run in the genes. I also have always been very healthy, and also eat well. I really doubt that has much to do with it. I would have to think it is in the genes. RB

Age 61
Original data - pre-operation
PSA: 5.1
T1C clinical diagnosis, Needle biopsy - 10 cores, Gleason 7 = 3+4 in 1 core (40%), 7 cores Gleason 6 = 3+3 ranging from 5% to 12%
All scans negative
Lupron administered 4/9/2008 for 4 months (with idea I would undergo external beam radiation followed by seed implants - then I changed my mind).
Robotic DiVinci surgery - Dr. Fagin (Austin) May 19th
Post operative - pathology
pT2c NX MX
Gleason 3+4
Margins - negative
Extraprostatic extension - negative
seminal vesicle invasion - uninvolved
1st Post PSA .04

Good Luck Jack - stay tough!

Dennis,
Hello and welcome to the forum, a place with mountain of information and helpful fellow travelers who have faced or are facing this disease. You will find many who had trod the same path before you and their personal stories of success's and trials. I am sorry to hear that your surgery was traumatic and did not achieve the result hoped for and you also face the additional burden of radiation and ADT. I sincerely hope that these additional treatments bring you the success we all seek. But, it is not appropriate (in my and others opinion) to use a cancer forum to promulgate and preach belief in various deities. It really is no different to the various reprehensible snake oil peddlers who repeatedly crop up here pushing their quack cures. I have no wish to offend anyone but I do wish the religious among our members would try and realize that many of us non-believers find the view that cancer patients may well be a particularly receptive group for declarations of religiosity and proselytizing. It always causes a schism when such religious declarations and "gods" raise their head here. There is no need for it. Religious convictions are each member's personal business and fellow cancer sufferers should not be viewed as easy "marks."
Bill

Jack,  We are all friends here and try to help each other.  Sorry about your DX.  Get informed and then make you decisions.  Best advise that I can give is find a PC oncologist.  Do keep us informed.  We are all in you corner with you my friend.

Jeff T

Cajun Country

Well, here we are again, at the start of a little religion dustup. This subject is very sensitive to both sides and the discussion and arguments have no place here on this forum. It's all been said before in countless posts -the discussion of usefulness of religion in sickness and cancer, and in particular PCa, stops here. There's no place in the forum for this and doesn't contribute to its purpose of information and support of this forum for flaming and atttacks, no matter how heartfelt and sincere or offended each side may be. Don't continue the argument, please. Any further discussion of the appropriateness of religion for the purposes of this forum will be edited or deleted. Sorry to be the bad guy, but history proves this is an unwinable and divisive issue here. There's nothing new anyone can add that hasn't been said before here, so don't continue commenting with any 'new' statements, ok? Whether you agree or not doesn't matter, as the owner of the site has rules in place and there is a reason for them. I'm gonna leave the original posts from each side here, any others will be edited or deleted. Let's respect each others differences and continue on.

Rule 4. No posts that attack, insult, "flame", defame, or abuse members or non-members. Respect other members of the community and don’t belittle, make fun off, or insult another member or non-member. Decisions about health and well-being are highly personal, individual choices. "Flaming" and insults, however, will not be tolerated. Agree to disagree. This applies to both the forums and chat.

Rule 11. No posts of an overtly political or religious nature OR posts promoting advocacy of particular personal, medical, legal, religious, political, or non-profit causes. The forums are intended for offering mutual personal support. Debating controversial subjects should be taken elsewhere. Limited religious references are allowed (ie. "my prayers are with you" or a brief quote as part of a larger post), but the forums should not be used to convert others.

thank you ive found some good info

Jack,
I found this site as I was looking for info on hormone therapy - Saw your post today and wanted to respond, so joined. My first reaction to your post was: Get a second opinion. As at least one other person said, I do not understand why your Dr rules out surgery?? MY "story" ....

APRIL/MAY 2005
Diagnosed with PC (at age 56), Gleason score 8. Had RPP (surgery!) within 3 weeks of diagnosis. Post Op diagnosis = Gleason score 9. Urologist said "We saw a couple of dots off the prostate, so we will have to monitor".

2006
PSA climbing again, so those dots were growing! Underwent radiation in March/April. Lucky to have no negative reaction or side effects to radiation treatment. Oncologist wanted to do hormone therapy at same time, but I insisted we wait to see results.

2006 - 2010
PSA readings all "Under 0.01" which Dr interprets as "No discernible cancer".

2011 - Last week.
Annual PSA result is NOT < 0.01. Score is 0.13, and Dr suggests hormone therapy if it gets to 0.20. Am awaiting results of 2nd test.

Please get 2nd opinion asap, then push for whatever treatment YOU feel is best based on all factors and information. One more thing: While waiting for surgery I was in a bookstore, saw a book with nothing but lists of "Top 10's" and fatefully opened it to a middle pages that listed the top 10 cancer cure rates! (This is a true story, form someone who is cynical about the role of fate in our lives). The cancer at the very top? PC, with an overall cure rate of 98%.

Best wishes
KB

I would get a second opinion on the viability of surgery. I have read several articles and studies that support surgery as a way to lessen the tumor load so that radiation and hormone therapy have a better chance of keeping it under control longer - especially at your age - I would insist on surgery. As a fellow gleason 9, hang in there - you have a good chance of controling this for a long time.