Circle the Wagons ..... husband getting 2nd opinion on August 10th ....what should we ask?

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enough already....
New Member


Date Joined Aug 2007
Total Posts : 13
   Posted 8/4/2007 7:49 PM (GMT -7)   
Hello All-
 
     I just discovered your site and have been reading dozens of entries.   I truly appreciate all your candid entries and your willingness to share such personal information.
 
      My husband turned 50 in January and had his first PSA test in May, repeated in June, biopsy on July 6th.    Pathology report is 3+3's and 3+4's in all specimens except one.  We got the news on July 17th.  Subsequent CT & Bone scans negative. 
 
     We live about 2 miles from a facility that has the DaVinci robot, and surgery is scheduled for Aug 29.  We met with the surgeon on July 19th and he gave it to us straight about the incontinence and impotence, etc.   I sat quietly and tried to take notes as this stranger in scrubs told us this unexpected and shocking news.  It still doesn't feel real.   
 
     We're going to Boston's Mass General Hospital on Monday for a 2nd opinion.
 
      My husband wonders if surgery is his only choice or if he needs it at all.    After all, a surgeon would naturally recommend surgery, right?  My husband's been reading about men who've chosen to do nothing and are reportedly doing just fine.  That frightens me. 
 
      As for me, I can't decide if I'm not reading enough or if I'm reading too much.    (For example, it never occurred to me that our health insurance would not pay for this procedure.   Yikes!  And I didn't think my anxiety level could go any higher...)
 
      But most importantly, I want to be well prepared for our appointment next week, but I have no idea what I should be asking.
 
      I would very much appreciate your input.   We have a 14 year old son who has autism.  Our ability to be patient and cope with the challenges that go along with that are being put to the test right now as we struggle with this news.   I'm used to being at the end of my rope.... but Dave has always been on the other end keeping me sane and making me laugh.   We've been married for 23 years, and as I type this I realize that's one half of my life.   
 
      Please share your thoughts.  It's difficult to think straight.
 
      Thank you!
      
       

Supportive wife (age 46) of Dave (age 50)
diagnosed 7/19/07  Gleason 3+4
 


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 8/4/2007 7:56 PM (GMT -7)   

 Hi  ~ Ellen &  Dave,

 

A   “Special”  Warm Welcome  to  You!  yeah   

 

We know ~ we can “all” make “Your Journey” smoother just by being here for you! 

This is truly a great forum!!! ~ You have joined!  You are now part our forum family ~ a group of wonderful individuals who are so willing to share...  It helps “all of us” ~ to help you ~ if we know where you are on your path. So ~ Please stay with us and take our hand when you need it!  Keep posting.... OKAY!!

  

KNOWLEDGE    IS    POWER  ...  and  POWER conquers  fear

 

YOU MAKE THE DECISIONS… YOU HAVE OPTIONS…

~ and ~

Your decision will be the right decision for you!!!

 

Keeping you close in thoughts and prayers as you move forward…

 

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)

Helpful Hints ~ & ~ Direct Links to Important Topic Threads ~ Hope this helps you!! :)

 

Post edited to add Ellen’s name  : )


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

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

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

 

Post Edited (bluebird) : 8/5/2007 10:57:21 AM (GMT-6)


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 8/4/2007 8:17 PM (GMT -7)   

STOP ~ Take a nice deep breath ~ re-group and move forward.  This journey is best traveled with friends who know where you are and where you’re headed.  You are truly not alone…  We will walk with you every step of the way!

 

Thank you for reaching out!!!!  This journey is filled with steps that will take you to the ultimate goal of being Prostate Cancer Free.  We will be there to help shore up any stones that seem wobbly.  Remember… we know what you’re going through… so hold on to all of us!!! 

 

One   Stepping  -  Stone   At   A  Time

 

The Helpful Hints link will give you a “few” of many different options…. And continue reading back pages… click here...> Prostate Cancer Resources, Helpful Hints, and Topic Thread Links

 

It will overwhelm you …… and at that time…. Take a step back…and then start moving forward again.  Helping Hands are here… 

 

Keeping you extra close tonight in prayer….

In New Friendship ~ Lee & Buddy

 

PS It’s 11:10 and I’m off to the nest…. 

mama bluebird will continue to watch over you!!

http://i206.photobucket.com/albums/bb179/mamabluebird1955/mamabluebird3.jpg

 


jetguy
Veteran Member


Date Joined Sep 2006
Total Posts : 741
   Posted 8/4/2007 8:19 PM (GMT -7)   

Dear Dave's Wife,  please give us a name even if it isn't real.  Your post is very moving.  I am sorry for your husband's cancer.  It is my policy to not recommend a particular treatment since I am not a medical professional.  I am not qualified.  Having said that, I would suggest that your husband do much research before he considers watchful waiting. 

You are new to the misery of prostate cancer and so is your husband.  You are obviously an intelligent and caring person and you will learn and experience and grow.  It's important that you bring your husband along with you. 

This is an excellent place to find solace and comfort and growth.  I wish you well. 

Regards,

Bill


Gleason 3+3=6, T1c, one core in twelve, another pre-cancerous.
62 years old and good health.  Married 37 years.  To same woman!
Began IGRT January 23, 2007. 


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1463
   Posted 8/4/2007 8:33 PM (GMT -7)   
Hey Dave's Wife,

You now have a lot of people on the other end of that rope. And we will hold you close and help you get through this most trying time. Just stay with us and keep us updated on what you are doing, thinking and feeling.

You will find out about the various treatments for PCa here and in other references. This should prompt a list of questions to ask during you 2nd opinion meeting. Keep a journal where you can write down your questions as they occur to you. Then be sure to write down answers to your questions during the meeting. I know this seems pretty simplistic but the meetings are very emotional and we tend to forget things if we don't write them down.

Most of all, be assured that we are all here for you. Keeping you close...

Jim
Age 73. Diagnosed 11/03/06. PSA 7.05. Stage T2C Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Pathological stage: T2C. Gleason 3+4. Cancer confined to prostate.
PSAs from  1/3/07 - 7/18/07 0.00. 
T level on 4/2/07 - 48     On 7/16/07 - 613
Next PSA and T tests on 10/17/07
 
"I have cancer but cancer does not have me."
 


enough already....
New Member


Date Joined Aug 2007
Total Posts : 13
   Posted 8/4/2007 8:35 PM (GMT -7)   
Thank you for your kindness. (& the info)

Yes, it's late and I'll go try to sleep.

Ellen & Dave
New Hampshire
Supportive wife (age 46) of Dave (age 50)
diagnosed 7/19/07  Gleason 3+4
 


Tamu
Veteran Member


Date Joined Oct 2006
Total Posts : 626
   Posted 8/5/2007 5:49 AM (GMT -7)   
You are doing the right thing by researching. Of course each provider of a specific treatment will be biased toward that treatment. Your husband's age is a benefit and is a factor in the type of treatment you choose. I am not sure what the urologist that you consulted with said about the impotence and incontinence side effects so if you would share that then those on the forum can provide more information from actual experience. If you do choose surgery the skill level of the surgeon is important so look for one that has done hundreds of procedures. When asking questions of surgeons asked specifically for their complication rates. Good ones will be glad to share that with you.

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
Undetectable PSA on 6/25/07


mvesr
Veteran Member


Date Joined Apr 2007
Total Posts : 823
   Posted 8/5/2007 7:17 AM (GMT -7)   
Hi Dave's wife. Sorry you guys have to be here but we are glad you came. There are a lot of resources at this site and caring people. Not only victim's, but wives, mothers and entire families hoping to find out what to do about their loved one's problem. Research all you can. There are a lot of books to read and informationon the internet. By all means get a second opinion, talk to your regular DR too. He may be able to help you get current information about treatment. Go to a hospital that has a multi-diciplinary approach to treating PC not just one treatment. Get informed so you can make that all important decision about what to do. Do something, he does have cancer and some treatment needs to be done. Don't look back and have second thoughts once that decision is made. You will have all kinds of emotions going on, it is ok to cry and talk it out with your husband. Bluebird is a fantiastic moderator here and we will all be here to support you in your journey with this.

Mika mvesr

enough already....
New Member


Date Joined Aug 2007
Total Posts : 13
   Posted 8/5/2007 9:03 AM (GMT -7)   
Thank you all for your kindness and wonderful suggestions.

Can someone tell me what is DRE?

Dave's PSA was 5 each time tested. The surgeon we saw is Dr. William Selleck at Manchester (NH) Urology. He made it sound as of well, as if Dave would be like an infant from the waste down. He spoke of additional treatments after the procedure, including external beam radiaton.

I've never been afraid to speak my mind in the past. ;) But suddenly I'm afraid to say the wrong thing to Dave. The last thing I want to do is make this worse for him. Is it okay if I ask you folks, er, anything?

Ellen
Supportive wife (age 46) of Dave (age 50)
diagnosed 7/19/07  Gleason 3+4
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8122
   Posted 8/5/2007 9:26 AM (GMT -7)   
Hi Ellen,
A DRE is a Digital Rectal Exam. During a routine physical, or once a patient is tested with a high PSA, then a doctor will pull out the gel and put on a glove and put his finger where the sun don't shine. The prostate is next to the rectum. If a DRE is negative then it is likely that it feels normal and spread is less likely. If it feels bumpy, then if is highly posible there is a spread of the disease. That stated, my DRE was negative, but after surgery it was determined that I have advanced disease. Which brings me to my second point. Your husband is too young for watchful waiting. That is a determinable step to take when you are older or likely to have another disease that will be more of a problem. While you shouldn't panic, by that I mean take your time deciding what to do and where to do it, your husband is likely in need of an action plan.

And about this site. We are prostate cancer veterans here, and you will become one. I have asked and now answered every conceivable form of question. And this is a great place for those "embarassing" questions.

I recommend that you read the following thread in this forum:  THE IMPORTANCE OF BEING YOUR OWN ADVOCATE - PLEASE READ!  by myman (Susan). You need to educate yourselves and be the final decision makers. Not your doctors. You doctor is recommending surgery not because he is a surgeon, but because it is the gold standard of treating this disease. There are other options and you need to study them, but by surgery you get more information from a post operative pathology and you get the satisfaction of knowing billions of cancer cells have been removed.

Tony
Age 45 (44 when Dx)
Stage pT3b (advanced PCa with seminals involved)
Pre-op PSA was 19.8
Currently undergoing hormone treatment
Surgery completed 2/16/07
IMRT radiation completed 8/3/07
 

Post edited to activate link…. 

Post Edited By Moderator (bluebird) : 8/5/2007 11:01:57 AM (GMT-6)


enough already....
New Member


Date Joined Aug 2007
Total Posts : 13
   Posted 8/5/2007 10:56 AM (GMT -7)   
Thanks, I checked out the link and read the article. It helped me get a better understanding of the system and what to expect.

Dave said the doctor told him his prostate was "kind of firm" after the DRE.

I volunteer as a special education advocate for parents of autistic children in the state of NH.

My occupation is A/R specialist for a medical billing company. In other words, I appeal health insurance denials all day long. It's often frustrating, but NEVER boring. If not for this, many patients would get billed for claims that their insurance carrier would have otherwise paid.

Still, nothing has prepared me for this....

-Ellen
Supportive wife (age 46) of Dave (age 50)
diagnosed 7/19/07  Gleason 3+4
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8122
   Posted 8/5/2007 10:59 AM (GMT -7)   
You need a special education now too. Once you take the mystery out of this you will be able to better be by your husbands side. He too needs to know as much about this disease as possible. My words of advise are stay possitive, stay informed, and stay in charge.

Tony

Dutch
Regular Member


Date Joined Feb 2007
Total Posts : 400
   Posted 8/5/2007 11:10 AM (GMT -7)   
Ellen & Dave:
Don't like to have to make your acquaintance here, but so glad you found this forum - we hope it will be of help and support to you.
 
You state that you are going to Boston Mass for 2nd opinion - they should be able to give you info on almost all of the treatment modalities - they even have a proton center there.
You will note that most everything is discussed here, so feel free to ask - or just vent if you are having one of those days!
 
Do lots of research and find the treatment that suits YOU!
Dutch
Diagnosed Feb 2001  (Age 65)  Currently 72
PSA 4.8      Gleason 3+3=6      Stage   T2b
Completed Proton Therapy @ Loma Linda - Aug 2001
Have had no side effects.
6yr PSA - 0.19
 
Our responsibility now is to educate men about Pca, PSA and the importance of early detection. 
 
 


myman
Veteran Member


Date Joined Feb 2007
Total Posts : 1219
   Posted 8/5/2007 11:21 AM (GMT -7)   
Ellen,

So glad that you came here. As you can see already there are a number of great people here who will help out in any way possible.
I'm the wife of a man with advanced pc. With the encouragement of so many here I can say that life is very good most days...and that's not so different from the so called "norm" is it? Yes, this is hard and you are scared but things will fall into place...

At this point I find it hard to add anything to what the "team" has said. (I do look at this site that way...a part of our health care team.)

Wishing you well,
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
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 Distant lymph node involvement Start HT Lupron 3 mo. shots
12/06/06: PSA 0.8
03/07/07: PSA 0.3
06/06/07: PSA 0.1


enough already....
New Member


Date Joined Aug 2007
Total Posts : 13
   Posted 8/5/2007 1:02 PM (GMT -7)   
Hi Again,

We head to Boston tomorrow and I keep thinking how easy it would be to swing the car towards Fenway Park rather than Mass General. :)

I am very grateful to all of you for your input. You're all heroes in my book.

If anyone is interested, Manchester Urology's website is http://www.manchesterurology.com/index.shtml

I've done a little exploring. I got scared when I got answers I didn't want to see on the prostate calculator. I appreciate the math involved and statistical informationcan be useful.... but this is also a matter of the heart. http://www.prostatecalculator.org

I'm trying to keep Dave's spirits up, make him laugh, and let him know that he can count on me. All this while at the same time I try not burst into tears myself.

I think I'll take our dog for a little walk and get some fresh air.

Thanks again-
Ellen
Supportive wife (age 46) of Dave (age 50)
diagnosed 7/19/07  Gleason 3+4
 


puget
Regular Member


Date Joined Mar 2007
Total Posts : 237
   Posted 8/5/2007 1:04 PM (GMT -7)   
Ellen, sorry you have found the need to join us, but as everyone else has said, you'll get nothing but encouragement and support here. Eveyone's situation is different, of course. I came really close to choosing radiation (seeds not an option as my prostate was "naturally"very large). I finally chose surgery because of my age (just 60) and the lack of reliable survival statistics beyond 10 or so years (at least that's what dr advised). My dr advises surgery for men under 60. My brother had radiation at 64 and he's doing well. Side effects are, of course, an issue, but I don't think there's any "normal" on that score, as demonstrated by the wide range of experiences you'll see on this forum. Good luck! It does get a bit easier to deal with all of this as the initial shock wears off. (I went into denial mode for the first month and refused to talk about it, see the dr, do any research -- it just wasn't happening to me). One of the great things about the forum is you can ask ANYTHING and share your best and worst emotions. We've all been there.

Cedar Chopper
Regular Member


Date Joined Mar 2007
Total Posts : 432
   Posted 8/5/2007 7:19 PM (GMT -7)   
Ellen & Dave,

The physician's description of "like an infant from the waist down" does describe the beginning of the healing process after a robotic radical prostatectomy.  Other treatments often have similar but delayed effects.

Your husband  - in the hands of a skilled surgeon - will almost certainly regain continence.  Most patients here have abandoned their last "just a security pad for drips" by six months.  Some take longer but then some are almost immedaitely continent.
Dave will likely deal with some aspect of dripping for 4 months or so.

Erectile dysfuntion is another matter.  Most take one or two years to regain 90% of their previous erectile quality.  Again, a VERY few have almost immediate erectile response.  If you choose surgery, start rehabilitation procedures at least by week 4.  (Read Andrew's discussion of the German treatment plan - Still, very few have his fast recovery time.)

This site will give you access to some of the kindest and most intelligent women in the world that have been down this road and can help you with every imaginable relational issue.  Yes, you should feel free to ask or express anything.  Lee (Bluebird), Vicki, Susan (Myman), Creed, Swim, Courtney (IzzyBlizzy), Dutchess ... I hate listing names as I am certain I am dozens out ... These women will be here for you during your time of trial.

Men like Mike, Tony, Dutch, Bill, Jim, Tamu, Dave, Selmer, Puget, Paul, Dr. Martin - and so VERY many more have knowledge and compassion to spare & share with you and your husband.

We don't tend to second-guess your choices here.  Insurance almost ALWAYS pays for surgery or radiation (maybe not proton - most likely not HIFU) concerning treating prostrate cancer as it saves them money in the near-term.  (Everything except many won't cover Viagra, Cialis, etc. - nor the vacuum pumps - nor injections if you so choose. These are actually very important for recovering erectile function with the fewest complications and if your insurance won't pay - ask here for some ways to save money on these items.)

Ask your Boston General second-opinion physician to discuss every possible alternative.  Choosing between Boston General and New Hampshire will have to be weighed with your personal situation as you care for your son and consider the time required for follow-up procedures.  I last read that Boston General was rated #1 by U.S. news in Urology.  I wouldn't pass up that skill level without careful consideration.  Still, I personally chose a local physician team over M.D. Anderson (2nd opinion) - as I deemed the time and expense involved in travel for follow-up care unnecessary where my local surgeon team was very experienced in both da Vinci robotic and open procedures.  
A point that you might consider if you choose surgery and don't use Boston General:  If my post surgery biopsy had indicated the cancer had "escaped the capsule," I would have returned to M.D. Anderson for any radiation or hormone therapy treatments - as I deem their abilities in these matters as unsurpassed.

You have some time - but (with the one "7 gleeson" score and Dave's relatively young age) I personally wouldn't take more than 6 months to make a decision and act on it.  Dave will heal faster if he seeks treatment at a younger age than an older one.  It is likely the cancer is contained at this point.  If so, let's keep it that way!

Holding the three of you close - in warm regards,

CCedar
ICTHUS!

2 Years of PSA between 4 and 5.5  + Biopsy 23DEC06 
Only 5 percent cancer in one of 8 samples.  +  Gleeson 3+3=6
Radical Prostatectomy 16FEB07 at age 54.
1+" tumor - touching inside edge of gland.  + Confined:)
Texas Hill Country FRESH Produce Department Manager
Have you had your 5 colors today?


enough already....
New Member


Date Joined Aug 2007
Total Posts : 13
   Posted 8/6/2007 4:43 AM (GMT -7)   

Good morning,

      Thank you very much for the  information.  I've printed it all up and will have it with me when we leave for Boston in a few hours.

       Dave is grouchy (big surprise, huh?)  but we'll get through this.  

        He commutes to Boston every day for work, so he's very used to it and knows his way around.  So at least that part of this day should go smoothly.

         Again, I thank you.  I better get back to work now....

         Ellen

 

    

 

 

 

 

 


Supportive wife (age 46) of Dave (age 50)
diagnosed 7/19/07  Gleason 3+4
 


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 8/6/2007 6:31 AM (GMT -7)   

Ellen ~

Pull from “all of us”…..our strength that is surrounding you and Dave!

 

Dave ~

Keeping you “both” in our thoughts and prayers.

Hoping our hands can guide you over at least one stepping-stone on your journey.

 

As Wittler would say ~ STAY STRONG…

In Friendship,  Lee & Buddy

 

Grouchy??  tongue Here’s a Special “HUG”….  

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