elephant in the room--how are wives taking it?

I don't want to join the club that's taking all you good men. I am going back to doc to find out where the last PSA level is next week. previous one jumped 3.4 to 7.6 . I am so pissed off at the doc due to me telling him I'm bouncing off the walls. Totally not me. First thought currently is to fire him. Just for total disregard of what I say. My wife is not handling this well at all. Is this normal? No support. Was told to give her time but I've just about lost it.

Hi QE. We're all different, and so are our wives. Mine thought I was being too negative and that I was almost "wishing" I had cancer because the thought was bringing me so down. Not a chance, but I had a great feeling of dread and eventuality that I couldn't shake. We both got a big relief after my 1st biopsy was negative, and I cheered up a bit, but the subsequent PSA was still too high for my age, so I knew deep inside that something was wrong. Once I switched to Johns Hopkins she was all over me. She remained positive, and frankly, was getting to be a PITA! She knows I'm a bit of a procrastinator and she was having none of it. While I appreciated that she cared, I was getting hit with appointments left and right! After getting a relatively good post-surgery path she began bawling her eyes out. I didn't like seeing her upset, but I was glad that she cared so much.

So far, you only have an elevated PSA, right? No biopsies or DREs? Your profile indicates you're in Newark? If you want a second set of eyes to look into your situation, I'm sure Philly has some top facilities, and Johns Hopkins isn't that far away either.

Not sure what I can say to really help you, but maybe it's your wife's way of coping? She's likely stressed too. Hope it all works out.

MD

My girlfriend(been together 16 years) is like the one Halbert mentioned; did the research, asked the questions, and generally took charge. So much so that at times I've had to rein her in a bit because she can have a tendency to take over completely if allowed. While what she's done is wonderful I've had to give her ground rules at times esp. when meeting with Drs; 'I'm the patient, I ask questions first then you can ask away after'. Early on I felt like she was the patient and I was an outsider listening in, not a good way to go.

But through all this I really have learned that her experience and fears are different then mine (for ex. she fears she may lose someone she loves), so she is definitely going to cope differently. I can't expect that our emotions are going to match, sometimes I'm overwhelmed when she might be coping and other times it's the other way around. I've learned what she can handle, I don't always share my fears. I can now tell when it is best to be open and when I have to deal in other ways. She can't be all things to me and that's probably why I post here. Just another way of getting stuff out and finding support that others can't always give. Also most of my friends handle it differently, it does not make them less of a friend. They are just bring different emotions, experience, and knowledge (or lack of) to the table. I have some friends I can share a lot and (many) others I've had to pull back and share very little if at all.

I am not sure of your situation but I would say give her time, you are obviously overwhelmed and it is tough for any spouse/friend to fully comprehend the extent of those emotions swirling around. Heck, you probably don't fully grasp them yet either. I know it took me time to sort my emotions out. Good luck..Jim

There's no way to answer the question. My wife has been very supportive through the whole process. I couldn't have had better.

However, we've heard of situations that are the exact opposite.

The we have a number of ladies here posting for themselves and/or their loved ones.

Each situation is so different that "normal" is beyond easy description.

Andrew

I have been very lucky. My wife though scared has been extremely supportive throughout the process. Asking questions, long discussion on right course of action and most of the time just a great shoulder to cry on.

In my case I am 57 and the doctor had to take all nerves so you know what that means. No ED issues that I have to worry about. It will never work again. My wife has been awesome about this in usual way in that she uses humor to override bad news. After the doctor visited us in the recovery room the day after surgery my wife looked over at me and said. "Honey you know my favorite number used to be 69. Not anymore. It is now 34.5.

Hey JDill,

My husband had both nerves taken along with part of his bladder. but after lots of rehab and sex, he has begun to have reliable erections with the help of a pill, and rehab pumping. I know its not common after losing the nerves, but it does happen. the erections arent great, nothing like pre RP, but the intimacy is wonderful. Unfortunately he also has peyronies now.

but for anyone willing to put the work into rehab, there is chance still.

and to comment on the OP as a wife, I supported my husband with lots of love and patience and did everything I could to make everything he's gone thru easier. Except in the area of rehab.

He refused to consider any treatment other than what his surgeon recommended. That could well have been the best choice, but since she told him upfront that his cancer was out of the capsule and he would have both nerves removed I wanted him to at least get another opinion on other treatment.

He also refused any kind of penile rehab. I didn't support him on that. I very gently but persistently pushed the case (I admit there were tears a couple times) . He finally agreed to do pumping, but never use it for sex. Then eventually I persuaded him to do the shots, which worked well, but he hated them and stopped. but then he started to get some stirrings on his own. When he developed peyronies it took a couple months of arguing to get him to a doctor.

I think he would say I was very supportive and he would never have made it without me. But I did do some arguing!

Wife weighing in here. Give your wife some time. We all cope with this nastiness in our own way. I don't know your wife, but I know when my husband was diagnosed, I went in to full "fix it" mode, which was beginning to drive my husband crazy. He didn't want to talk about it or research it, which drove me crazy. I had to settle down. He had enough to think about without worrying about me.

We were both worried about different things. He was worried about side-effects. I was worried about losing my husband.

If you two communicate well, maybe you could tell her how she can help you (?) Sometimes you just have to spell it out.

First year and a half was not much direct talkee , many I love yous.

The last year, still not much direct talkee although she does research on her own and is aware, many many many more I love yous. And she is so much more thinking of our future.

It does take time. Things change, sometimes for the better, sometimes for the worse.

We are humans, and the human dynamic cannot be accurately measured.

Question Everything said...
Yes, I post in the Crohns forum, am 57 and with the other clubs I've been drafted into, I am overwhelmed. My father had PCa. He did not like to talk about it. So I Question Everything. I am a technical person so I have a modicum of intelligence and don't enjoy the way doctors talk down. Active surveillance and no information is not for me. I'm relatively new to PCa.

QE, I'm sorry you have to be here on this forum, especially since you are already grappling with other significant health issues. I totally understand being overwhelmed as a result. Since your father had PCa, I'm not surprised you are here. My father also had PCa, as did his older brother, and family history is important.

Have you had any tests other than PSA done yet? Any details on your PCa history would be very helpful and would allow us all to provide you with more support, encouragement and guidance on how to proceed.

EDIT: If you haven't already read the "first diagnosed" sticky URL at the top of the PCa section, that's a great place to start. Lots of good info in that sticky thread and lots of lists of questions to guide you on how to interact with your doctors and what questions need to be answered.