Newly diagnosed & shaking in my boots

Pls. Excuse my lack of form, due to panicy fingers.
55yrs old, in great shape, no prior health issues.
6/26/13 Psa 260. Physical exam confirms enlarged prostate & nodule
7/5/13 Biopsy, 12 out 12 samples pos. T3
urologist reccomends hormone therapy,
then surgery, then radiation, saying:
"we need throw everything we have at it"
Still in shock & terrified. Wondered if anyone
else had similar nos. who can relate or
better even, has recovered from similar situation, Sending strength to all on this
wonderful compassinate site. And thanks.

Hello Cenami,

Sorry you need to be here but glad you've found us. We'll try to help.

First, what you've told us so far doesn't seem good but we've seen a lot worse. I'm sure some of the guys who had worse diagnoses years and years ago will be along in a bit to say hi.

Did your doctor give you something called a "Gleason" score on you biopsy result? It will be shown as a number and two other numbers (usu. in parens) that add up to the number. My Gleason score looks like "Gleason 9(4+5)".

What your doctor said sounds sensible. The hormone therapy will knock back the cancer, drop your PSA, and shrink your prostate to make it easier to treat. The fact that he is recommending a combination therapy (surgery and radiation) makes it sound like he thinks you are at high risk (like me). The good news here is that it sounds like he has hopes about treating with curative intent -- that is you have a serious cancer but it is probably not too late to talk about getting it all if you throw the works at it.

The hormones are certainly a good idea. But you might also want to talk to a radiation oncologist about the possibility of replacing the surgery part with brachytherapy (radioactive seeds that treat your prostate from the inside out). That (plus the hormones plus some more radiation) is the other good treatment combo for the kind of cancer it sounds like you have.

Hang in there. This thing can be beaten. Welcome aboard!

Cenami,
Sorry that you are here and the rest of us are also! I've pulled up a thread that you should look at before going too much further--"Newly diagnosed with Prostate Cancer" by Casey who is one of our members..Also, please get the 3rd edition of Dr Patrick Walsh's book-"Surviving Prostate Cancer"; many of us consider it as our bible...
Since your Doctor recommended surgery, I assume that ct or mri and bone scans were negative and he rated you as a t3 stage; in effect, he believes that you are cureable..many urologists are surgeons so I suggest that you get a 2nd opinion from a radiologist..You have many options and it can be confusing to
select a treatment option. In my case (I'm a t3a stage), I had both a high gleason stage and high volume and my urologist "pushed" surgery and informed me that my "nerves" would be removed. Well,
I left her office and saw a RO (radiation oncologist) and the rest is history...Take your time--a few weeks--and decide what you want to do after talking to different doctors..I wish you the best.
Bill

Cenami,

Gleason 8. Yep, you are joining the high risk club. The stupid-looking hats are back-ordered and we've run out of beer but the nachos and cheese sauce aren't bad. So Welcome! Make yourself at home.

I have had all three of the treatments that your urologist recommends. Knowing what I know now I might have gone for brachytherapy instead of surgery to try for fewer side effects but saying that is kind of misleading since my cancer was misdiagnosed in my four biopsies and my true risk category only emerged from the post-surgical pathology report. So there is no way I could have known back then.

The reason I mention that I've had all the treatments is so you will know that I know whereof I speak when I tell you that you will get through them. You'll be OK.

Ps

Am so deeply moved by the knowledge kindness &
concern shared so far. What an amazing place for people
in this boat to come together. Reaources abound here since I live in LA, but I can imagine
how enormously helpful this site is for those in
tiny isolated towns to not feel alone & scared.
This feeling of shared humanity & brotherhood
has given me a hopeful boost which when I woke up
this a.m. (after biopsy results yest.) I really did not expect to
Have. For all those rocking in this boat w/ me, my heart is full.
And thankful.

Welcome, our new friend.

So very sorry you have a need to be here, but so glad you found us.

Yes, you have a pretty serious high risk diagnosis, but so do some other here, and many of them are doing quite well, even years later.

You do need to be with a great medical oncologist, very experienced with advanced prostate cancer, to help you plot out your "battle plans" to fight the beast.

We are here for you, every step of the way, and you will find men here experienced with virtually every possible treatment method that is out there.

Please feel free to vent anytime, that comes free with membership. It's good just to get it off your chest, so feel.

Good luck, and please keep us well posted of your new journey.

And never, ever, give up hope.

David in SC

I see you live in LA. I am in Orange County. What many consider a couple of the best urologists that specialize in PC are Dr. Scholtz and Dr. Lam are in Marina Del Rey. I suggest you make an appointment with them. I am a G9 and am comming up on my 5th year of battling this beast.

 

howard l said...
I see you live in LA. I am in Orange County. What many consider a couple of the best urologists that specialize in PC are Dr. Scholtz and Dr. Lam are in Marina Del Rey. I suggest you make an appointment with them. I am a G9 and am comming up on my 5th year of battling this beast.

 Two more great PC Dr.s.

 http://www.prostateoncology.com/about/medical_team/mark_scholz_md

http://www.prostateoncology.com/about/medical_team/richard_lam_md

Hope this aids.

I would add my recommendation to Scholz/Lam, especially if you live in LA.

johnT

Hi and sorry you are here, I'm in your boots as well, I do belong to the G9 club though and you aren't allowed to join that, and I hope you don't.
There seems to be alot of 50-55 year olds on here so you are not alone, little consolation I know
Stay positive and good luck

Sorry that we have to welcome you to our club, but you will find this forum to be a great resource and source for support. I can add nothing more in the way of recommendations but assure you we are here for you on this unfortunate journey.

Hey Cenami -

Welcome to the forum no one wants to join. I'm also in LA - I had the DaVinci surgery 2 weeks ago at Cedars. I was very happy with the quality of care while I was in the hospital, and I'm extremely pleased with my surgeon and his staff. You've gotten great advice so far - Dr.'s Scholtz and Lam seem to be the go-to guys in LA for high risk disease - and City of Hope may be another nearby option to explore.

The main thing is to do your research, know your options, and feel very comfortable with your team. The folks here will help you on your way - and I also found Walsh's book very useful.

Best of luck -
DougInLA

Try to gather your self away from total fear to decisions for your best course of actions and possible outcomes.  Results in high risk patients can vary and cure may possibly never be in the cards, but winning many battles within the war is most important and even encouraging. How the heck would I know???? I had similar pathology to yours and the 12/12 biopsies all loaded with PCa and Gleasons 7,8,9's found, psa was 46.6 (lower than yours). The good news is that was over 11 years ago now and with alot of considered and used protocols for control of the blanking dragon.  Now the battles are getting more omnious, but I was aware of that along time ago. I am not done with possible choices still that exist and so it continues as a warrior against the blanking dragon.

Checkout www.yananow.org and patient histories/mentors/experiences (900+ patients), see some histories and stories similar to ours for some idea of what this journey is like. Truman Seamans story is there his psa was like 2500+ or more and nasty stats from diagnosis day.....short story is he lived around 10-12 years or so with an omnious start. He had some good oncologists on his case which might have helped alot.  You can run your numbers in a nomogram to get an idea of statistical concepts of cure, might not be encouraging to know and it is not in stone as to your outcome anyway, it is an averages thing. Knowledge is useful and you have the possiblity of many choices in protocols, especially with the right kind of PCa advocate type of doc. You might want to post your story there too after a little while (when ready), alot of us have done so and you can update it often over time.  Learn all you can about the protocols and drugs used, because you will likely be choosing and using these in your arsenal.

Once you get control of this and doing alright, time passes by alot easier, even though we all sweat out the psa and other marker tests. I got monthly psa tests for about 2 years, watching this beast and it was useful as to when to switch drug protocols before psa went rogue.  Had really good control until about one year ago and now the bigger battle is on.  I am not complaining from where I started, included ER room for total urinary blockage from PCa, then diagnosis.  Hope is eternal and more protocols keep coming, finally now. So, get your mindset on how to fight this sob the best you can and be envolved in your own choices, as only you walk the walk.