Newly Diagnosed

My husband just diagnosed Friday from bx: Gleason 3/3 1 out of 12 cores pos. with less than 5%. PSA 8. Urologist very kind, mentioned AS, since he feels PC dx at earliest level. He did make us an appt with a DaVinci surgeon here in Austin, and would also help with setting up something with a radiologist. Our heads are spinning, and my husband doesn't want anyone to know. I've ordered Dr. Murphy's book, and been on the pertinent websites.
Concerns: Do we have to do something now, do we have months or years? Even doctors don't seem to know!
I'm very close to both sides of family, and not being able to reach out is hurting me. Thanks for this anonymous forum. I don't feel like I'm betraying his trust. He is my whole world, and I want the very best for him!

Forgot to add he's only 55 and in very good health!

Take heart NavyWife, there is much hope for you and your hubby.

Last September (on my 52 birthday), I was given the identical diagnosis as you got. I had surgery (robotic) 11 days ago and aside from my scars, nothing hurts. I have experienced virtually no incontinence, and the "little general" is starting to reawaken. I am the posterboy for early detection, taking time to consider options and then plunging ahead.

This cancer does not require expedited medical intervention. You want to consider the wide variety of options open to you, and to find a doctor with the experience, caring and technology to cure your husband.

Take a breath, you will both be OK.

Dave

NavyWife:

Sorry you have to be here and we all understand your angst.  You should feel free to ask ANYTHING and you will get answers.

Other than a welcome I would just to like reempasize the advice you just received from JohnT.  This is very sound in my opinion.  Also, if for some reason, AS is not something you are comfortable with I hope you will take the time to review all of the options available to your husband as not all treatments are created equal...especially in terms of side effects.

All the best and please keep us posted.

Tudpock (Jim)

Dr. Murphy? You might want to read "Guide to Surviving Prostate Cancer" by Dr, Patrick Walsh and /or Gerald Chodaks book, "Winning the Battle against Prostate Cancer"..

I am not a big A.S. fan,, just my opinion of course.. You just never know for SURE just how dangerous the cancer is... It is quite likely that SOMETIME during the next 20 years, your husband will require treatment. With cancer, any cancer, the sooner you treat it the better. A PSA test every six months and a biopsy every year gets old after a while..You become a slave to that next PSA test, spend a lot of time worrying about it, trying to decide what you are going to do if the cancer proves more aggressive than you thought..Hubby's PSA at the moment is fairly high at 8. It can't go up much more before some sort of treatment will be needed...

But time IS on your side, research all your options carefully, the potential side effects, traveling for treatment, costs, you have to look at the entire picture..Read the books, learn the nature of the monster you are facing and how to defeat it...

Navywife,
First of all welcome but sorry you are here. I can only give this advice,tell his and your family what is going on. He has Cancer not cooties( I saw that on a shirt) so it's nothing to be ashamed of. Your immediate family should know and they will be a big support.
Good Luck and keep us informed.

Hi Navy Wife,

I can't add any other advice-just wanted to welcome you. My husband was diagnosed one year ago March 17, had robotic surgery Aug. 8th and is doing great. I know how over-whelming it can seem at first, but you have plenty of time to research you husband's choices and there are so many wonderful people here that can help you thru it.

Kind regards,
Renee

Navy Wife,

My stats were very similar to your husbands. I opted for surgery. Take a look at my very first post at the link below:

www.healingwell.com/community/?f=35&m=1684312&g=1684312#m1684312


You and your husband have time to make a decision. In my case I chose to remove the tumor early before it could spread and risk a worse outcome years down the road. I think my first post lays it out pretty clearly from one man's point of view. The doctors at Sloan Kettering told me that when they see a more severe case they really feel badly that the patient didn't take a more aggressive approach earlier. Granted they are a major cancer center and tend to see the worst of the worst, but for me I could support their line of thinking.

FYI I'm a little under 1.5 years post op and I'm zero PSA and doing great. I don't regret my decision. The problem is there is not always a single clear right answer and everyone is different.

I'm happy to talk to you or your husband if you like. Best of luck and welcome.

Mike

NavyWife,
I'm 54 and chose robotic surgery and now am undergoing followup radiation. My diagnosis was aggressive (a gleason 8...and then a gleason 9 after they removed and dissected it). Sounds like your husband found this early and thus has alot of options and time to figure out his best course. I also chose not to keep it confidential because I figured the rumors would be worse and I wanted to increase awareness of this curable cancer. I have received nothing but support and more new friends. regards, <bobr>
--------------------------------------
Age: 54
Routine Physical on 10-20-2010 DRE Normal
PSA 4.3, up from 0.6 5 years prior
PSA 0.6 on 10-25-2005
PSA 0.4 on 7-30-2004
PSA 0.5 on 5-9-2002
Followup with Urologist on 11/10/2010 after elevated PSA; DRE noted slight bump
November 30th, 2010 had prostate biopsy.
December 9th, 2010, Biopsy results 3 of 12 cores positive.
LLB: Gleason's 4+3=7, 11 MM Tumor Length/15MM Core Length (73%)
LLM: Gleason's 4+4=8, 12 MM Tumor Length/15MM Core Length (75%)
LM: 0.1 MM Tumor Length (1%)0.1 MM Tumor Length
RALP Surgery 12/27/2010 Released: 12/30/2010
Thunderbird Banner Hospital, Glendale, AZ
Post-Surgery Pathology: GS 4+5=9
Pathologic Staging: pT3a, N0, MX; location: Left Side; Volume: 10%
Margins: Left posterior inked margin focally involved
Extraprostatic Extension: Observed
Seminal vesicles: Not observed
Lymphatic/Vascular Invasion: Not observed
Catheter: Removed 15-days after surgery

Post-OP Followup on 1/11/2011; Catheter/Staples removed
Adjuvant IMRT 8 Weeks Post-OP.
No exercise for 4 Weeks Post-OP.

Radiation Oncologist Initial Consultation on 1/18/2011

Calypso Procedure on 2/17/2011; PSA <0.1; Bone Scan Clear
341 Testosterone

CT Simulation on 2/24/2011.
Calypso IMRT started on 3/8/2011 - 40 Treatments.

Hi Navywife,

My husband had a lower PSA (3.5) at diagnosis but a similiar pattern with initially a Gleeson 7 (4 + 3), then Gleeson (3 + 4 = 7 after surgery. He too had all options and made the decision on the basis of the agressiveness of the gleeson score. If he had been Gleeson 6, he may well have chosen another path including watchful waiting. However the Gleeson 7, like the Gleeson 8 is different and less predictable so we had to think it  through.  In answer to your question do you have months or years or have to act now with the 5% so far - we asked the same question... At the time on this board, we were among those who waited a more lengthy period of time (4 months) - did not have additional PSA testing during this time so I don't really know, but it allowed us to see 3 specialists, research all options in depth, make a careful decision, and consider conflicting opinions in the process. In the end, taking some time to decide did not make a difference for us but it was one question we asked every doctor we spoke with. All encouraged us to take our time which for us was 4 months, then surgery. My husband has made a full recovery physically - emotionally we will never get over it, but we have learnt to live with it, and see the positives. Give your husband time and he'll come around slowly - meanwhile gather all the info for him for when he is ready to discuss it, and write all your questions down, asking the same sorts of questions to each person you consult for consistency.  It is a shock but it gets better - try not to rush your husband or allow others to rush him. Even if you act early on this, there is no reason not to add another few weeks just to make sure, and allow him to get his head around it, so check out the first opinion you get with at least one other specialist or doc or professional. Soon the world will stop spinning for you both and it will settle as you gain more information about your unique situation. Hope this helps. The people here will support you both with any information you need. Take care & Kind regards, Lana

I am also a nurse and my husband was diagnosed with PC gleason 6 with 9 of 12 cores positive last Oct. It definitely was a shock. At first my husband was just like yours. He didn't want me to tell anyone about it. I think this is the first stage DENIAL. If he doesn't talk about it he doesn't have to deal with it. My husband was 59 and we decided to go with the DiVinci robot. He had it done in Jan 2011. The first week was rough but he is doing great now. He does have some incontinence which seems to be getting better with time. His doctor said he was cured with negative margins. He gets his first PSA in June. If it was my husband I would probably go for treatment because I would not want to think about cancer everyday for any period of time. I could not stand it.

NavyWife, whatever course you decide to take, I would encourage you to review two recent threads by Diamonds3 as you make your decision.  Not every case of Gleason 6 is the same.  Theirs was a case of Gleason 6, reviewed by Epstein and confirmed as Gleason 6; but after they went ahead with surgery, it was found to be Gleason 7, 3+4, with margin involvement at the apex, which is now causing them some concern.  When dealing with cancer, caution can't be overemphasized, IMHO.  Good luck to you. 

I worked for the Navy for 30 years as a civilian public information officer.  Is your husband a Navy retiree?  In any case, be sure to thank him for his service (and thanks for yours, too!)

Once again, I can't thank all of you enough for your generous sharing of your own journeys, and helping me in the process.
We are still waiting for the second opinion on the biopsy. I think my husband is really leaning towards AS. I have done quite a bit of reading on the subject, and it's definitely a possibility at this stage. His urologist says that he would check his PSA every 3 months, and he'd have another biopsy in a year. I do believe my husband is quite bowled over at the thought of being incontinent or impotent. Every one of these treatments has that as a possibility, ie.." Do you want it now(surgery) or later( everything else)?
I know about complication rates and how to interview for a great surgeon, and I want to be sure he's alive in 30 years, but I do understand there are some devastating complications here. According to his doc, we have time. I'm going to let him read Walsh, and the other mountains of info I have bookmarked.
Yesterday I drove our 2 daughters downtown to get wristbands for SXSW. That's a big film and music fest they have here in Austin. I had time to read the Blum book because they waited in a 2 1/2 hr. line!! He had some interesting points. I am trying to be very clinical in looking at people's opinions. He was fortunate to have access to care that most men wouldn't. His roller coaster PSA's would've disturbed me. Reading Ornish's book now. We don't eat red meat, but now we're revamping our diet for sure. We've eaten very well, but I think we'll go even more vegetarian now.
There's a good series on MD Anderson's Prostate Cancer Website with John Davis,MD. Even though he's a DaVinci guy, he talks a lot about AS. Yes, we are in Austin, We are in the Urology practice that Fagin is leaving. More than likely, if my husband needs or chooses treatment, I'd tell him to go to MD Anderson.
Just going to let him soak all this in for now. I'm not sleeping...he sleeps like a baby!
Much Gratitude...Kathy