questions about what to expect with RP and HT

Sophie,

This is the first time you mentioned that one of the doctors you met with at Fox Chase was a radiation oncologist. They have a well-regarded radiation department there and having him on your husband's team of doctors does go a ways towards our suggestion that your husband talk to doctors with different specialties. None of us are doctors here on the forum and, even if we were, the only things we know about your husband's cancer is what you have told us and you aren't a cancer expert either. If the Fox Chase radiation oncologist was sufficiently impressed by the urological problems represented by the location of the cancer then that might well be a deciding factor. He knows things that none of us know.

When you and your husband really have made up your minds tell us and we will stop with the suggestions for second-guessing yourselves. We do a pretty good job of supporting guys who are scheduled for surgery here. I always stress the importance of having the recliner positioned where it has a good view of the television.

Sophie,

I'm very happy to hear that a Radiation Oncologist already evaluated your husband's case.

Unlike most cancers, there are often many options in PC treatment, and a given specialist will often only put forward his specialty as the best option because that's what he's most familiar with and usually thinks it is the best (or why else we he perform it?) But this puts a burden on the patient to do an active search to get other opinions. In my low-risk case, I talked to 6 different doctors before deciding, but I had the luxury of time to do that. It sounds like Fox Chase has a multidisciplinary tumor board to help the patient with that information-gathering burden.

Meeting with doctors is always confusing, even for me, and I have been to a lot of meetings (I regularly go with men in my PC Support Groups). A few tips for future meetings:

• Bring written questions and leave space after each to write down the answers. Both you and your husband can take notes and compare them later.
• Most doctors won't mind if you ask to record the conversation on your smartphone as well. (but take notes too.)

• If I have credible research studies that seem to conflict with what the doctor said, or I'm wondering if it applies to my case, I try to email them in advance and ask the doctor if we can discuss at the next meeting. This avoids putting the doctor on the spot, and gives her a chance to give a thoughtful reply. I usually start by writing "You've probably seen this already..." A little humility avoids bruised egos. Doctors at university hospitals are usually professors too, and they love looking at credible research studies. (I stress "credible" - if it's not from a recognized peer-reviewed journal, she will just shake her head at you.)

• I write up a short meeting summary and email it to the doctor, thanking her for the meeting, and confirming what we decided.

• Ask for and keep copies of everything - blood tests, biopsy reports, MRI DVDs, path reports, surgery reports, etc.

I wish your husband much luck with his surgery. Both of you will have to take it one day at a time. Feel free to write back with questions or just to vent.

- Allen

Thank you. His surgery went well in that the surgeon was confident that she removed the whole tumor which was large. She wasn't happy that it had grown into his bladder and she had to remove an inch of bladder. But she had pathology there testing the tissue she removed, and kept taking slices until the margin was clear. Her fear was that the cancer might have grown into the rectum. She went there first because she would have aborted the operation since it wouldn't heal soon enough to start the radiation. But it hadn't fortunately.

She had to completely remove the nerve bundles. still feeling sick about that. but thats another post i guess.

DH isn't feeling too good, but he is so sweet to all the nurses and staff, with a kind word and gentle joke for all of them. When I watch him in so much discomfort (His bad back is hurting too) but thinking of others and thanking them and saying he's sorry to keep them up so late (got to his room at 10;30 pm) well, I just adore him. i go back and forth blinking back tears of overwhelming love for him,with tears of grief over loss of the dreams of the next 30 year, and the end of erections. 10 minutes ago I took a sleeping pill to sleep tonight so i have to stop writing before its dreamland jumbo.

thank you for being people i can talk to about these intimate subject. My husband is the most modest man i know. he doesn't like being naked. ironic that he has this cancer with cute young nurses checking his catheter and urine bags. And Im pretty private about sex and our intimate life. so I have no friends or family i want' to talk to . is there a wives/partners group on here? i will look for it tomorrow

Sophie,
I hope you were able to get some sleep and your husband got as much as can be expected in a hospital.
I know the relief you felt as he came out of surgery and the fear of what's to come. As difficult as this all is take a breath, a couple of deep breaths and remember to take one step at a time. Your days will be full taking care of him, crying some and trying to maintain some semblance of dealing with everything. This will get better. You are not alone - there are many here in the same situation whether men or women who support them. We want you to know everyone is pulling for you both. Let us know how things are going when you can.
As Peter suggested, the caregivers thread has a group of great women who post both on that thread and also pose questions or comments on the main board.
All the best Sophie,
Susan (my email open pls. use it if you like)

Hi Sophie

Just another wife here with a fairly recent G9 husband.

We've been down to Fox Chase too (as second opinion to our local docs), and mine is also in the control arm of a trial (different one though). He's stage IV, which has as its "good" part no surgery.

Our time since his diagnosis has been a weird combination of disbelief, unhappiness and aggravation (scheduling, interpreting many docs, insurance,....).

We've been trying to do things we enjoy (and especially that he enjoys) - have seen a lot of small concerts and so on. Plus we just got a dog, which has been really good. (Our last dog died the week my husbands bone scan turned up with mets. Now THAT was a bad week.) My best advice is, as much as you can, stick to the moment and whatever it takes.

You have a lot of company. Our situations are all different but we have a lot in common. Hope your husbands recovery from surgery goes well and that you can start thinking about the future with less dread and more hope. There will be bad stuff, but probably not the stuff you're worrying about right now, and maybe not as bad as you're imagining, so try to breathe and be nice to yourself.

Carolyn

SophieW, glad to hear he's in the recovery phase. All the best for you folks, it's going to be intense for a little while. He's lucky to have you with him. And do get in touch with those on the caregivers thread; it's a disease affecting both of you, and those caregivers greatly support each other. In case you haven't seen it yet, here's a link to it:
www.healingwell.com/community/default.aspx?f=35&m=3009873&p=5

For what it's worth, I've added you to our Gleason 9 crew roster, on a thread that is meant to be a gathering place for those facing that diagnosis. Our concerns tend to be pretty specific given the aggressiveness of this version of the disease, and the treatments involved. It's a wild ride! If you look through that thread (and the lengthy one preceding it), you'll find many G9 folks, most doing pretty well.
www.healingwell.com/community/default.aspx?f=35&m=3182035&g=3182504#m3182504

All the best for both of you! Please stay with us here; there are many experienced people that can help with advice and support for recovering from this surgery. You can do this!

Sophie,

I've not been very active on the board lately, as I have not been well (much to the dismay of those who love RT, it is RT side effects that are whipping my arse).

I would consider two things in these few weeks -
1) They are the worst. Both of you are dealing with what appears to be the end of the world. It isn't. It will get better. Attack the problem. Get out and walk. daily, multiple times a day. If he won't go, drag him out. Use the emotions and energy to do positive things. I've been in that hole. When it starts getting deep, STOP DIGGING.

2) Pain should be managed. If he is in pain, talk to the surgeon to find an answer.

I have an open email, and have been down the surgery G9 path.

Klonopin... That's what helped me cope. Actually JNF, Ms WorryWort, TednSal, TallAllen, and so many others on here had a huge part in my coping. Getting information, validation and confirmation as well as commiseration together with those who could only relate too well.....

My (very new) coworkers rallied and my boss totally stepped up to the plate and was more than generous despite me being a new employee. His reassurances were amazing otherwise I probably would have been completely paralyzed in fear with the added stress of being afraid of losing my job.

The Klonopin came after hubby's second admission and emergency surgery for the small bowel obstructions and perforation and my PCP who works in same building saw just how it was all affecting me and knows my personality that I was not sleeping and just getting wound tighter by the day with all that was going wrong along the way. I have always been anti drug but I have to say that this is one time the doc knew better than this stubborn patient.

Also learning to let things go helped. Letting myself sleep late and not worry about a schedule for a few days helped. Letting the dishes sit in the sink even though the dishwasher is right beside it...

I think the most that helped was the many on here who reached out and many are still in touch although lately time is hard to find. Late night phone calls and texts do so much good! So please know I am here for you too. I think you can click on my name and get my email- please feel free to use it generously.

Oh and give yourself permission to let the tears flow, the anger to bubble up and to have a total meltdown if that is what is coming.... Then take that and turn it into an action plan once its all out. I remember it being really hard at first because Paul and I were ALWAYS together and I knew I needed a good cry and couldn't let him see me so weak during all this. I honestly thought about getting a hotel room just to go cry and beat up pillows for an afternoon!

It sounds as though you are a master of stress in recent history.... I bet we could talk for hours.

kuku,
yes lorazipram has done wonders on the tough days. (and ambien has helped with the nights).

I know what you mean about finding a place to cry. Being unable to talk to my dearest friend and unable to turn to him to cry and be comforted was so isolating. Even before my first post here reading this forum helped me feel less isolated.

My boss also was wonderful also, covering for me all the times I was at appointments.

Thanks for reaching out to me. I'll put my email in my profile next time I'm on too.

I'm not a loquacious person either writing, or on the phone, but the last 2 days especially because I had to put my dog down yesterday. She's been sick with a heart condition and possibly cancer, and this week she deteriorated quickly. Yesterday morning she couldn't stand up and wouldn't even move to reach for a treat. She lived a good life and we said goodbye.

142, my husband tells me all the time how fortunate he feels to have me. and Ya, I also heard, and without thought believed, that "good cancer" myth before PCa entered our lives.