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

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!

      

       

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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

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

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

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

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

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

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,

C^Cedar
ICTHUS!

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??   Here’s a Special “HUG”….