Hello and don't want to be here

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debib
Regular Member


Date Joined Jun 2007
Total Posts : 35
   Posted 6/3/2007 10:24 AM (GMT -7)   
 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

naimnut
Regular Member


Date Joined Jan 2007
Total Posts : 93
   Posted 6/3/2007 10:49 AM (GMT -7)   

Debib,

Where do you live? It is time for a second and third opinion.  There are good doctors out there and many ways to extend life. IMHO it is way too early to throw in the towel.

Again, I really suggest you let us know what part of the country you are in, since we have folks from everywhere on this board and you may hear of another doctor that you haven't yet in your area.

God bless you--you'll be in our prayers.

 


Age, 53
PSA 3.76, Gleason 6, T1c, scans negative
psa doubling time 35 months
Da vinci robotic scheduled for Thursday, May 31


debib
Regular Member


Date Joined Jun 2007
Total Posts : 35
   Posted 6/3/2007 11:08 AM (GMT -7)   
We live in New Mexico and receive treatment in Amarillo TX. 

biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1463
   Posted 6/3/2007 11:23 AM (GMT -7)   
Hi Debbie,

Yeah, none of want to be here but we are all glad to have each other. The support, info, and help on this forum is fanstastic.

Look at the "Direct Links" thread (I will bump it to the top for you) and you will find other guys with advanced PCa that have posted their experiences here. We are all in this together so please stay with us...

Jim
Age 72. Diagnosed 11/03/06. PSA 7.05. Stage T2B Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Pathological stage: T2B. Gleason 3+4. Cancer confined to prostate.
PSA on 1/3/07 - 0.04. 
PSA on 4/4/07 - 0.00  T level - 48  Restarted T therapy.
Next PSA on 7/18/07.
 
 "I have cancer but cancer does not have me."


lawink
Veteran Member


Date Joined Oct 2006
Total Posts : 621
   Posted 6/3/2007 11:26 AM (GMT -7)   
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
Bob (61) - Laproscopic Prostate Removal Sept 27, 2006.
2 of 12 malignant biopsy samples - gleason 3 + 3 = 6.
 
Pathology - cancer completely contained, even a second more aggressive, previously undetected cancer)
PSA UNDETECTABLE Nov 2006, Feb and May,2007.

Bob also has two secondary conditions -- Polycythemia (elevated red & white cells & platelets) and . . Myelofibrosis) -- If anyone has experience with or information on these, please email us.


Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 6/3/2007 12:00 PM (GMT -7)   
From what I've read, one of the best cancer hospitals in the country is M. D. Anderson in Houston.

http://www.mdanderson.org/

Even if you can't make it to Houston, you definitely have to get 2nd, 3rd, 4th or more opinions until you get to the medical oncologist (not urologist - they're only surgeons) who gives you hope.

Good luck.

-Gordy

myman
Veteran Member


Date Joined Feb 2007
Total Posts : 1219
   Posted 6/3/2007 1:19 PM (GMT -7)   
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
Husband Diagnosed 11/17/05 Age: 63 No Symptoms
PSA: 7.96, Positive DRE
Biopsy Right: 6 of 6 Cores Positive Biopsy Left: 1 of 6 Cores Positive
Gleason: 4+3 = 7 Stage: T2B N0 MX
2/09/06: LRP Restage: T3A NX MX
3 mo. PSA Post Surgery: 11.8, 12.9, 13.9 Bone scan, CT scan, Endorectal MRI, Chest XR - neg.
9/06/06: 6 mo. PSA: 18.8 CT shows distant lymph node involvement
Restage IV Start HT Lupron 3 mo. shots
12/06/06: PSA 0.8
03/07/07 - PSA 0.3
06/06/07 - Next PSA


veteran1
Regular Member


Date Joined May 2007
Total Posts : 133
   Posted 6/3/2007 3:34 PM (GMT -7)   
Dear Debbie & Ron---

Welcome. I'm very glad you found this site. As others have mentioned, you do not give up the fight. Ron has a tough diagnosis...but the only "affairs he need get in order" is to find another doctor who
you and Ron can work closely with.

Please fight this starting now...Vet

bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 6/3/2007 3:39 PM (GMT -7)   

 Hi ~  Ron & Debbie,

 

Caring Enough to Share…..

that’s what  HealingWell   is all about

 

 

  A   “Special”  Warm Welcome  to  You!   yeah   

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 2nd 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!  tongue   

 

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*


mama bluebird - Lee & Buddy… from North Carolina

J  We invite you to visit our personal thread:  Click Here:  “Our Journey” ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy with "wide excision"

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

2nd PSA 02-06-2007 Less than 0.1 Non-Detectable :)


debib
Regular Member


Date Joined Jun 2007
Total Posts : 35
   Posted 6/3/2007 4:58 PM (GMT -7)   
Thank you all so much for the welcome...I have begged, pleaded, cried, yelled for Ron to go to MD Anderson...he really,really likes his urologist in Amarillo and he also in my opinion doesn't get the dx he was handed. He finally agreed last month to be treated by both an oncologist and his urologist and we had our first meeting last month with an oncologist that I googled and he does have some knowledge of prostate cancer...His name is Leonardo Ferero in Amarillo, he has done some studies and has a clinical trial that he wants Ron to join. Not sure how I feel about that, it does use chemo and I'm just not sure. ??

Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 6/3/2007 5:11 PM (GMT -7)   
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

mvesr
Veteran Member


Date Joined Apr 2007
Total Posts : 823
   Posted 6/3/2007 6:30 PM (GMT -7)   

Dear Ron and Debbie.   Sorry you have the misfortune to have this disease.  The people in this forum speak from experience and they have been there including myself.  Please get other opinions from other Doctors.  Go to a Hospital that uses a multi-diciplinary approach to treating prostate cancer.  Some of them have been mentioned to you already.  I had a radical surgical procedure last Wednesday and out of the hospital on Friday and home Saturday and doing very well.  You are both in this together and should decide together what to do for Ron's cancer.   Please get the other opinions.  We are here to lend our ear to you and support you.  We are all praying for you.

mvesr


kziz
Regular Member


Date Joined Feb 2007
Total Posts : 242
   Posted 6/3/2007 6:45 PM (GMT -7)   
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
Kurt & Courtney
47 year old
Great Health prior to dx
Dx on 1/29/07
PSA 4.1
Gleason 3+3=6, both lobes
Stage T2c, I believe
Tumor involves 20% of cores, both lobes
Live in OK
Da Vinci scheduled 3-14-07 in Austin
Post-Op  Gleason 6, Stage t2c nx mx  YAAAAA HOOOOOO! 
1st PSA Post OP  Undetectable!!!!!!  OFF THE CHART
2nd CT scan, to recheck enlarged lymph nodes not related to PCa NO CHANGE relook in 6 months


debib
Regular Member


Date Joined Jun 2007
Total Posts : 35
   Posted 6/3/2007 7:34 PM (GMT -7)   
One quick question...if we seek out a second opinion do they start over with biopsy and take out more lymph nodes?

sterd82
Regular Member


Date Joined Sep 2006
Total Posts : 187
   Posted 6/3/2007 7:43 PM (GMT -7)   
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!
Sterd82
Age 46
Initial PSA march of 2006: 28
PSA May of 2006: 39
8 of 12 cores malignant
Open Radical Prostatectomy 6/9/2006
Pathological Stage T3a, Positive Surgical Margin
Gleason 3+4
Post surgury PSA fluctuated between .04 and .09
PSA rose to .24 in November of 2006
6 month hormone therapy initiated December 1. 2006
36 sesions of IMRT Ended Feb 1, 2007
PSA as of May 25, 2007 undectable


sterd82
Regular Member


Date Joined Sep 2006
Total Posts : 187
   Posted 6/3/2007 7:46 PM (GMT -7)   
Debid,

My GUESS is that the diagnosis may not be in question so much as the PROGNOSIS and treatment... Nobody I ever talked to on 2nd opionios ever wanted to re-do much lab work.... but I could be wrong.
Sterd82
Age 46
Initial PSA march of 2006: 28
PSA May of 2006: 39
8 of 12 cores malignant
Open Radical Prostatectomy 6/9/2006
Pathological Stage T3a, Positive Surgical Margin
Gleason 3+4
Post surgury PSA fluctuated between .04 and .09
PSA rose to .24 in November of 2006
6 month hormone therapy initiated December 1. 2006
36 sesions of IMRT Ended Feb 1, 2007
PSA as of May 25, 2007 undectable


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 6/3/2007 7:55 PM (GMT -7)   
I second Sterd's idea. Snuffy is supposed to be an icon in the advanced PCa field.


Swim
 


Tamu
Veteran Member


Date Joined Oct 2006
Total Posts : 626
   Posted 6/4/2007 6:02 AM (GMT -7)   

Debbie,

I would recommend that you visit the web site www.yananow.net

When you enter the site go to Mentor Experiences.  Scroll down to find the stories of of men with prostate cancer and their treatments.  There are several that have advanced prostate cancer and a few that were told their prognosis was not good and they needed to get their affairs in order.  In one case this was 10 years ago and he is still going strong today.

Tamu


Diagnosed 7/6/06, 1 of 10 core samples, 40%,Stage T1c, Gleason 3+3
Da Vinci on 11/01/06, Catheter out on 11/13/06
56 Years Old
Post Op Path, Gleason 3+3, Approx. 5% of prostate involved
Prostate Confined, margins clear
Undetectable PSA on 12/18/06
No more pads as of 1/13/07
Began injections in April '07


Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 6/4/2007 3:50 PM (GMT -7)   
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

debib
Regular Member


Date Joined Jun 2007
Total Posts : 35
   Posted 6/4/2007 4:43 PM (GMT -7)   
I want to make an appointment with Dr Charles "Snuffy" Myers...I will do that and keep you posted
Thanks for all the info!!
Debbie

bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 7/18/2007 7:46 PM (GMT -7)   

  tongue Hey ~ Debbie & Ron,

 

                    Thinking of you and wanted you to know.   yeah

 

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

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