Hello and don't want to be here

 I Don't want to belong to a group with cancer but if I have to belong glad you all are here.....my name is Debbie and my husband Ron was 56 when he went in last June for routine physical.  He was on his way out the door when dr said " wait this PSA must be wrong, 49!!"  put him on antibiotics for a week and then took another test...51!!  had a biopsy and came back a 9 on the Gleason scale.  In Sept. had pelvic nodes come back positive and started hormone therapy late Sept.  We were told surgery was not an option and radiation was not necessary yet. (guess waiting for pain from bone mets)  His PSA went down to 2.2 but now is 3.8, he was started on casodex May 10th...will have another PSA on the 7th.  We have both been told by urologist and oncologist that he is going to die soon and get everything in order.  ???huh!!! Believe it or not Ron feels good!!  The oncologist also told us that for some reason older men do much better with advanced prostate cancer than younger men.  Would love to hear from men that were told end was near and are still going strong.

 I have requested our medical records and hope to give more info when I get them.

Thank you for your time,

Debbie

We live in New Mexico and receive treatment in Amarillo TX. 

Debbie - you've definitely come to the right place for support and positive thoughts. I agree that a second or third opinion is in order here. You and hubby simply need to decide that "the end" is not an option for you at this time . . . . then focus on everything possible to get that cancer into remission. There are many members in here who have not had the results they'd planned on who are aggressively approaching their escaped cancer cells.

Please keep us posted. Gentle hugs to you both.

;o) Bob & Linda

Debbie, Hi and welcome - this is a good place for you to be.
My husband is on HT - 3-month Lupron shots. He had surgery but the cancer had escaped and HT was started last Sept. Don't let the doc's take away his future...because he does have one. There are other ways of treating him - chemo may be an option or perhaps some sort of clinical trial.
You'll have to be strong and get your wits about you to do some research. Keep notes and ask questions here.
I bet you've already looked up MD Anderson on line as Gordy suggested! You can call there to get an appointment or they may ask for copies of medical records. Doctors in this field (cancer) are used to patients getting other opinions because after all we're talking about lives, here!
We'll look for your posting.

All the best to you both,
Susan

 Hi ~   Ron & Debbie,   Caring Enough to Share….. that’s what   HealingWell    is all about       A    “Special”   Warm Welcome   to   You!       click here   The Power of Hope   KNOWLEDGE IS POWER... and POWER conquers fear     Keeping you close in thoughts and prayers as you move forward in your fight.   It will be a fight but with “All of Us”…. walking * hand~in~hand and *heart~to~heart" * with you….. the road will be smoother.   “Your Journey” is a path filled with stepping-stones and we are here to help shore up any wobbly ones you come across.   Obviously ~ from this post you feel like this stone is a sinker.     We are here to tell you ~ it’s NOT!!!   Yes ~ It is very slippery but once you get moving ~   gathering more information (research) and getting a 2 nd opinion…. You will start to feel “Strength” beneath you.   Hold on tight because we aren’t letting go!!!   Please ~ stay close to us through every step and you will feel “All of Our” strength surrounding you both.      This forum is a true blessing for all of us.   Debbie ~ Taking the first step reaching out ...is the greatest gift you just gave to you and Ron.   Hold on tight as we traverse this path with you.   We are here for you “both”…   Stay close ~ okay!        In Friendship ~ Lee & Buddy   “God Bless You”  It's a little prayer   ~   "God Bless You" ...but it means so much each day, It means may angels guard you and guide you on your  way     (Direct Link ~ just click on the title below and a new window will open!   Reminder … click on the REFRESH icon once you get there)   Click here:   Helpful Hints ~ & ~ Direct Links to Important Topic Threads ~ Hope this helps you!! :)   * borrowed phrases borrowed   from TimG *

This has to be a joint decision, but, to be blunt, if he doesn't explore all the possibilities and make a well-considered decision, he could have a very unpleasant end to his life and you will be alone. The possibilities for help for his situation are numerous, but you and he have to seek them out.

Twenty years ago when my mother died, I learned the hard way that no matter how kind or understanding a doctor may seem, nobody, but nobody, cares as much about your well being as you do.

And, you don't want an oncologist who has "some knowledge of prostate cancer". At any stage of the disease you want the best there is and in your husband's condition it is an absolute must.

When I was diagnosed, my PSA was 26.5 and had (and still have) no spread. I sought out the best doctors I could find - at Johns Hopkins in Baltimore, at Weill Cornell in New York City and several others. This is no time to "coast", you have to very aggressive and proactive.

I apologize if what I've said makes you uncomfortable, but that's what it was intended to do.

-Gordy

Hi debbie, I am sorry that you are here. Your story sounds a lot like my dads. He was diagnosised at 49 and told he had 6 months to live and go home and get everything in order. He lived much longer than that, but that is not why i am here. My husband also has or had PCa and that is why I am here. My dad taught me that you have to find the best doctors and from your location, MDAnderson is it. If you are interested in docs in OK, the best onocologist is Dr. Reitz. He has a dry sense of humor, but he is the best. He is out of Mercy, Cancer Care Associates.

It is not the end all when they tell you to get things in order. The biggest part of beating this cancer is BELIEF! Dr. Bernie Segal has multiple great books on beating cancer. My favorite is Peace. love and miracles.

Keep posting, and we will be here for you. Courtney

Both sorry and glad to welcome you to our group.

For what it's worth, if I were in your situation, I'd look into the work of Dr. Charles "Snuffy" Myers --- seems to do well with tough cases.   You can google him, or "to make an appointment, or request more information, contact  our offices at 434-964-0212"....

That's from a Web site www.prostateforum.com.

GOOD LUCK!

I second Sterd's idea. Snuffy is supposed to be an icon in the advanced PCa field.


Swim

Debbie- They prolly won't do another biopsy, but they might want to send the slides created from the first biopsy to another lab to be examined. As with everything else, there are labs, and there are labs.

-Gordy

  Hey ~ Debbie & Ron,                        Thinking of you and wanted you to know .      Please as your time permits….. give us an update on how things are going for you! We continue to keep you close in thoughts and prayers. In Friendship ~ Lee & Buddy