my worst nightmare

larry59 said:

you need information, maybe I can help
Angelica2003, you can email me at foley2007larry@mchsi.com. Information is what all patients need and its the hardest thing to get. I am not a expert but I sure have learned a lot about prostate cancer in the 6 months since I was diagnosed as terminal. I still recommend Dr. Patrick Walsh's book "Guide to Surviving Prostate Cancer" He is the top urology guy at Johns Hopkins in Baltimore and probably the best expert in the U.S. He developed the nerve sparing surgery technique that has saved so many cancer patients so much grief.
But if you just want to ask a question, rant, rave or whatever don't hesitate to write me. I can't help myself but I am trying to help anyone else as much as possible.
Good luck to Brian and you, hope to hear from you. Larry59

Angelica2003 said:

My Worst Nightmare
You all have said great things. Some that made me cry but just for
love not fear. I see 2 sides of surgery with my message and Active
Servailiance. That will help. My husband read some of the posts last
night. I will have him read the rest.

BUT, here is an update...tada
Last night I calmed myself down by saying "Marla you do not have
nerviuos breakdowns for NO reason. I was confused and not looking at
the big picture as to why I was upset. So why am I feeling this way??"
After asking myself that and writing a letter to Brian. (we do that
cause sometimes your words are not really heard. And it is a good
comunication tool) I took a few deep breaths and REALLY started my
head going FULL speed, and open. This is what I realized:

Do I want him to have surgery?
Yes. Why for peace of mind for both of us and better odds. I don't
like to gamble and it is a gamble.
No. Why, I do not like seeing my husband in pain and I don't want to
have him inconstant or even somewhat or impotant, I like him this
way. This is also a gamble.

Do I want him to do active servaliance?
Yes. Well dauh, they would anyways. He cannot get in tomorrow and
they need to do further tests anyways. We may get better and more
clear results. He may not need the surgery.
No. I am scared and I don't like cancer. It spread. It kills. Plain
and simple. The biopsy could have just hit the tip of the cancer
cell. There could be more or bigger.

Ok. Well right back to square #1. What should we do/ choose. So what
else is wrong then with yesterday that sets me off so much?

Well The Dr. did not give ANY pros to surgery. Knocked it whenever
mentioned. (he is an urologist that can do surgery) So what is up?
He gave Brian a 40% recovery from side effect of surgery. Ok 40% that
means 60% good. You do not pass at school with those grades. So if
that is HIS patients recovery rate. THAT IS BAD.
He also said that there is NO way to do nerve sparing. That thay
always get damaged. He does not do laprosopic and won't do it on
Brian for this surgery. Says there is no difference in recovery rate,
or impotance rate or inconstance. And he says doing it laproscopic
will not save nerves. And there is NO dr that he would let do it on
Brian. WHY DID HE SAY THAT?
OK HAHAHAHA. This is a really far fetched and BAD BAD statements. I
know from research and Brian talking to a 36 year old that you can do
nerve sparing. And he has recovered just around a year. And research
any you all agree there is differences. SO why is he making these
statements and PUSHING servaliance?
Well a day after Brian found out he had the cancer he wanted to
commit suicide and took 3 of my STRONG sleeping meds. I took the
bottle and locked it up. He was in deep depression. Later to find out
why? He had not taken his depression meds for a few days. So he was
not clearly thinking. Then the next day he talked to the 36 y/o and
felt MUCH better. Plus he took his meds.
Back to the WHY? I phoned the Dr.'s office out of fear and explained
waht happened the night before and she got us in FAST. But when she
told the Dr and sexual therapist, his appointment was made BEFORE he
takes patients. First thing in the morning. So the dr knew about his
attempt.
Looking back, it clicked. The dr said all those things because he
felt Brian could not handle any change mentally. So he was NOT BIAS.
He did not really let us choose or speek. He wanted to control us and
change our minds after talking to the 36 y/o and the research. He was
going on what Brian did. Not these are your choices. What do you
think, Brian and Marla.
I also noticed during my visit before I had enough and left, he did
not reach to shake my hand or ask my name, or really include me. He
just focused on Brian. Plus he had me leave during the exam AFTER
Brian said he wanted me to be present. Those things play BIG on
trust. So right off the bat 5 mins into the meeting I was set off and
did not trust him. You need to trust the dr. whether you are the
patient or the spouce. Trust is BIG for me.
So when I sat down, calmed down, and started digging. I came up with.
We NEED a REAL opinion from a Dr that does not know about the
attempt. So I thaught, Dr. Ritchie (he did the biopsy and was the 1st
dr.) knows how our emotions are, understands why Brian and I are like
glue. Includes me in the discussion. We all 3 sit arround his desk.
Not me off to the side. And we may not like his jekel and hyde, but
we TRUST him. And he listens and is bias.
So I mentioned all this to Brian this morning. And he really
understood and saw what I saw. Even started to remember all the bad
things he said to surgery. Not giving it a plus at all. After that we
came up with:

#1.Let's etch-a-sketch yesterday right out of our heads. It did not
happen, we did not see him, he does not exsist.
#2. We have an appointment today with dr.ritchie and he knows nothing
about what happened. And he knows us and understand why I am the way
I am and same with Brian. And he will be bias.
#3. Oviuosly we would not get to surgery for months, so during that
time lets do 2 PSA per month, meet once a month, do an MRI and or CT
scan.
#4. Ask if he can refer us to an Onocology Surgion. But only to get
his point of view on the test results. Here in Manitoba, the health
care system is cheep buggers. They do not want to do surgery if it
can be avoided. So the surgion may be against or for surgery. But
even if we decide AS, lets get a surgions point of view.
#5. What about other options, why is Brian not a candidate? Dr.
ritchie said there are differnt types or radiation and surgery. So
some dr does the laproscopic.

Anyways sorry this was SOOO long but, just wanted you all that
replied see the BIG picture and let you know, we are not rushing into
this even though we (more me) are scared unless a PSA or test say
NOW. And thechnically evey man has done AS, cause you wait and have
further testing. Because there could be a change in either direction.
That is what AS is all about.

Again THANKS. You all have been a big help, bigger then you know.

shipjim said:

Robotics
My doc didn't want to do lapro either he only did the cut and stitch kind. Turns out it's all he knew. I found a robotic guy, met him and was done and home in a week.. Got the cath out in 10 days (normal) wore diapers then pads for a while now little leakage. Not much for sex after 3 yres but I'm alive and can do anything I want. I looked at seeds,hormones etc but once you do them surgery is virtually not available due to tissue damage.
It ain't the end of life but it may be a bit different. He's young lots of changes will come in the next few years so who knows what will be available in the after market for us survivors. The first thing to do is survive.

Get on with it!