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Posted 2/6/2012 5:36 PM (GMT 0)
Would it be unsupportive of me to request a conversation with my husband's urologist without him?  There are a multitude of questions he won't ask because he doesn't want to know the answers.  This causes great anxiety for me.  I don't necessarily want timelines, but probably and best case scenarios would help ease my mind.  After robotic surgery (12/5/11) to remove prostate, seminal vesicles, and lymph nodes, it was determined that PCa had metastized and Gleason was 9.  It had also spread to the bladder wall.  PSA before surgery was 66.3, 4 weeks post surgery was <.1.  He is on Firmagon injections and has all of the common side effects.  He's finally feeling better just in time for his next monthly injection.  Doctor told him he'd be on Firmagon "for the rest of his life".  What does that mean?  He also has liver disease, which is a bad thing when you are on firmagon.  Apparently liver disease is a nonissue when dealing with aggressive PCa.  I guess I just have a lot of questions that my husband doesn't want to discuss with the doctor, but I really need to. 

How do you guys feels about that?

Posted 2/6/2012 6:08 PM (GMT 0)
Do it!!

You will probably need written permission from your husband for your doctor to discuss matters with you.

More information is better than less information!

Mel

Posted 2/6/2012 6:20 PM (GMT 0)
hope4thebest

To start, I'm not even sure if your husband's urologist would consent to such a meeting. But lets just assume he will.

Trying to put myself in your hubby's position I could see my first reactions being either angry or gratitude that you asked questions I could/would not.

Do you plan to tell him that you are seeing the Doctor? Or is your plan to go see his Doctor without telling him?

Overall - I think for your own needs (and by extension your husbands), you should talk with the Doctor. I also think its best your husband knows you are going to do it.

If you are overwhelmed by the lack of knowledge, you probably can't support your hubby.

Hope this helps

Bud
Posted 2/6/2012 6:21 PM (GMT 0)
I've actively encouraged my wife to ask questions from the doctor. So far she hasn't mentioned wanting to talk to the doc without me there but if she did I'd be all for it.

My health plan has a way for me to get emails from my doctors as well as getting test results on-line (and ordering meds). It also has a way for me to set things up so my wife has permissions to all my records and can act for me if needed. I felt part of what I needed to do to support her was to make sure she had access to my records and doctors.

I can understand your husband not wanting to talk about some things. The PC thing is hard to deal with and sometimes I can only deal with it in very small bites.
Andrew
Posted 2/6/2012 6:27 PM (GMT 0)
I think the best philosophy is complete trust and honesty between the couple. THis disease already puts couples to the test. I wouldn't do it without discussing with him first.
Posted 2/6/2012 6:35 PM (GMT 0)
Hope, assuming you are in the USA, as Mel said your husband would have to provide written permission for you to do what you want.  The HIPPA laws are very specific about this and it is likely that he has already signed a form wherein he designated to whom the doctor could speak about the health condition.  If your husband has already agreed to this, then you could probably proceed as you want...the doctor's office would certainly know what the form says.

I would think your best bet is to ask to accompany your husband to the next visit and ask your questions while the three of you are together.

Tudpock (Jim)

 

Posted 2/6/2012 6:54 PM (GMT 0)
Without his expressed permission, I wouldn't do it. Even though you are his wife, and deeply concerned, it's still a matter of personal privacy. He would either have to sign, or have already signed, a permission slip of sort before the doctor would be allowed to speak to you in any event. It would be in clear violation of HIPPA laws to do otherwise.

Talk to your husband, see if he agrees, and if so, by all means get the answers to the things you need to know about his situation.

david in sc
Posted 2/6/2012 7:17 PM (GMT 0)
It's such a difficult time, but you have to sort something out so that you do it together. I reckon that the last thing either of you need would be any kind of row right now. Both of you will be worried, frightened etc about the future. Brave people are not people whio aren't frightened but ones that have worked out how to deal with the fears.

Alf
Posted 2/6/2012 7:22 PM (GMT 0)
I have gone to all his dr appts with him and he has already signed all the releases giving me access to his information.  I have all the same technical information he has, I guess I want a discussion of what it all means.  He is not able to get past the technical right now.  I understand where he is coming from, but since I have now taken on the caretaker roll as well, I would like a better understanding of the situation.  Sadly, the caretaker role has superceded the role of wife and partner.  I do hope that changes with time.

Posted 2/6/2012 7:30 PM (GMT 0)
How do you guys feels about that?

if i were in  your position i would do it.  the disease doesn't just affect your husband and you have a right to know what the future holds for you as well.  i wish you and your husband the very best!

ed

 

Posted 2/6/2012 8:11 PM (GMT 0)
I am a wife. For me, I would need to get buy in from my husband. I know his Uro would not have a conversation like that with me unless my husband made it clear (signing consent) that I could speak on his behalf. Fortunately for us, I have been able to go to his appointments with him, and ask what I felt I needed to know. It sounds like your husband may not want to know the full extent of what is going on, and although VERY frustrating for you, it is his right based on where he is at in this whole PC journey. As a wife, I completely understand your need to know, because this is very scary stuff. You should continue to have dialogue with your husband about how you feel, and then ask him how he feels about you asking the "tough" questions with his doctor the next time the 3 of you meet. I doubt I would ever feel comfortable having a meeting with hubby's uro without him knowing,  it wouldn't feel right. Good luck to you, and I hope you two can work it out amongst yourselves first.  I know this is very tough.
Posted 2/6/2012 9:06 PM (GMT 0)
hope4thebest,

I do understand where you are coming from in wanting to meet with the doctor one on one.

I, too, attend all appointments with my husband and I ask many of the questions. However, there are questions I would ask if my husband was not there.

I have full access to his medical records via a medical POA, but I would not arrange a one on one meeting without my husband's approval. Granted, no doubt he would approve and he would probably truly welcome the idea... but I'm not stepping over that line and taking it for granted.

This beast is hard enough to deal with and the last thing I would ever do is breech any trust issues.

If your husband is like mine, he may only want (can deal with) the positive stuff at this moment, as the negative which is obviously already present, is overwhelming enough. Positive attitudes can help overcome many obstacles. So I want him to stay positive.

Like you, I want to know what the future holds... we all do, it's human nature. But, while I want to know those things, my husband's single request is to live.

Yes, knowing that my husband may or may not be around as long as I want him to be or in the condition I want him to be in is extremely hard, but it can't be anywhere near as hard as knowing you have a beast of a cancer in you that is trying to suck the very life you cling onto, out of you.

If you want someone to talk to, I am more than willing. Our husband's have very similar symptoms. Actually, I could use that as well.

Hugs....
Posted 2/6/2012 10:57 PM (GMT 0)
As usual, people here have given you some good opinions.  I reread your post to try to understand "What questions are not getting asked or answered".

If you can comfortably share the specific questions it might help.  If it is about ED recovery and continence your doctor can  give you best or worst case possibilities.  If it is about mortality, even the doctor will be guessing. I hope that you are able to get the answers here or from your husbands doctor.  My wife attended every doctors appointment and test with me.  She and I both asked questions and got answers.  The problem is, that you may never get the kind of answer that you are looking for.

Posted 2/6/2012 11:05 PM (GMT 0)
true, you often don't get the answers you're looking for in this thing.
Posted 2/6/2012 11:24 PM (GMT 0)
My wife attended all of my visits with the uro along with me.

She and I were just discussing this thread, and she said she can't imagine any questions she would have hesitated to ask simply because I also happened to be in the room.

In fact, she asked many of the questions, probably partly due to the fact that she's a registered nurse and was more tuned in to things more than I was at that point.

But, regardless of that, whether it concerned life expectancy, mortality risk, sexual side effects, catheter care.....I just can't think of anything that she would have hesitated to ask about, or that I would have cared if she had asked about, or that the doctor would have hesitated to answer, whether it was her asking the question or me asking it.

I know every marriage has different dynamics, but clearly there are things the husband and wife BOTH need to know, and somebody needs to ask the appropriate questions if the information isn't forthcoming.

That being said, I don't think it would be appropriate to schedule a meeting without your husband.  I would think that arrangement would make any urologist extremely uncomfortable.

Right now, I think you should be feeling very good about his PSA of <.1, and I would interpret the doctor's statement that he would be on Firmagon "for the rest of his life" as meaning, hopefully, for many, many years.

Have you told your husband the level of anxiety these "unknowns" are causing you?  He may not be aware of that.  Don't fall into the Donald Rumsfeld trap.  Maybe you remember the famous quote by the former Secretary of Defense:  "There are known knowns; there are things we know we know.  We also know there are known unknowns; that is to say we know there are some things we do not know.  But there are also unknown unknowns---there are things we do not know we don't know."

Try not to worry about those "unknown unknowns."

Posted 2/8/2012 1:31 AM (GMT 0)
Thank you for all the replies.  I think it was more a rhetorical question because I was trying to convince myself it was ok.  The questions I want to ask have to do with health scenarios.  Best case?  Most probable?  I realize they can't predict the future and there are always exceptions, but given my husband's history, I would like to have some idea of what to expect.  As for sexual dysfunction, it is basically moot at this point.  Because the cancer had spread so much, the dr was unable to spare those nerves.  Regardless, he is so uncomfortable from the Firmagon that I doubt it would be relative anytime soon.  I have moved from wife to caretaker and sometimes even feel more like hospice.  In addition to the PCa, he is dealing with frontal lobe epilepsy, diagnosed only 2 years ago.  Last summer he had to have his gall bladder removed.  It had gotten so bad he even gave himself ecoli.   There is a lot on his plate and the only way I know how to help is get all the facts.  He finds this all too depressing.  Agreed, but I find not knowing debilitating as you can not take action.  He told one of our friends that he can do anything he wants now because he is dying.  He hasn't said this to me.  Yes he is on an anti depressant and he is seeing a therapist.  I find it very overwhelming and don't know where to turn.  We went to a man to man meeting.  THe people there were very kind and supportive, but he felt like he didn't have anything in common with them because only one other person had an advanced stage of aggressive PCa.  One person kept insisting that all PCa was slow growing, but his is not.  One person on this forum recommended the yana website to find more survivors of Stage 4 cancer to chat with.  There were a bunch there, but the majority of the names with stage 4 stated that they had passed on.  I didn't stay there too long.

I'm rambling now, so it's time to go.  Thank you all for the input.  We go to the Dr Friday and I plan on asking a few questions.

Posted 2/8/2012 1:47 AM (GMT 0)
HOPE, So sorry to hear of all of your husbands health issues. Sometime being the caretaker is much more difficult than being the patient. Know that you must take care of yourself as well. Cut a small notch in each day for you to decompress. Know that all of us on HW are thinking of you and know that by the stroke of luck we are not in your husbands same shoes at this time.

Let us know if we can help in any way.. even if it just happens to be a place for you to chat and unload.

Cajun Jeff
Posted 2/8/2012 3:59 AM (GMT 0)
Hope,

I second what Cajun Jeff just said and offered here. We are all here for you and your husband, anytime.

david
Posted 2/8/2012 4:12 AM (GMT 0)
Hope (what a beautiful name!): You and your husband will be in our prayers. You certainly have more challenges than anyone deserves. Please keep posting here. Your husband is a lucky man to have a helpmate such as you.
Posted 2/8/2012 5:50 AM (GMT 0)
Hope, I am so sorry your husband has so many medical concerns.  It is indeed overwhelming.  I hope you will take the advice of having some time for you - time to unwind.  I would write the questions I have on a piece of paper.  This is what I would take with me to the doctor's office.  Not knowing the answers causes so much stress.  You and DH are in my thoughts and prayers.

Peace,

Aimzee

Posted 2/8/2012 5:59 AM (GMT 0)
We go to the Dr Friday and I plan on asking a few questions.

Hope -- good for you.  my wife goes with me to all my visits.  she held my hand when i had my prostate biopsy.  she asks lots of questions and i want and expect her to. you'll just have to be more aggressive but like i said earlier you have a right to know.  please let us know how it goes.

ed

 

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