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Afraid and needing advice

10 years 2 weeks ago #31850 by GKLINE
I wanted to respond to your husbands realization that he has cancer. I also had to be beaten over the head with a club before the lights went on. I know how he feels. My wife carried the "notebook" everywhere too.
I must agree with Mike about getting your husband to "talk about it." It will do him a world of good to let it all out. He can be an "agent under cover" and we will never know who he is.

Just to add a touch of humor to this:
On my very first visit to the urologist, I was directed to a room to change into a gown. I walked across the hall and the same nurse immediatly said "OK take off your gown" I asked "How come you made me put on the gown just to have me take it right off?" She said "This is your first visit and you might be a little shy about things." You will lose all of your inhibitions at the urologist and a sense of humor is ALL Important. Just as he needs to get to the right medical people... he needs to get his head in the right place.

It is OK to be depressed at the first realization that this is cancer. But then the fight begins! He needs our support and we are more than willing to stay the course with him.


Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
New Man! [/size]

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10 years 3 weeks ago #31844 by wsilberstein
Dear Cher,
Just in case your husband still has his catheter in, I have some advice as a catheter veteran. I also usually found the catheter intolerable by day 3, so when I had to have urethral surgery and had to be catheterized for 2 weeks I was horrified at the prospect. Two things made a huge difference.
1) the catheter was taped up to my abdomen, not strapped down to my leg. As a result every move didn't yank the catheter.
2) I was instructed to rub an antibiotic ointment onto the tip of my penis/urethral opening 2-3 times a day. As Mike says, it's best to keep the catheter lubricated.
Finally, I realize this advice is too late for this time, but just incase he ever needs to be catheterized again, if he's having bladder spasms from the catheter his urologist can prescribe medication to treat that.

TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant...

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10 years 3 weeks ago #31831 by mmc

Not sure about your husband's case with the catheter, but often, the irritation is caused by the regular shrinking and growing around the tube. Using lubricating gel on the catheter so it can allow movement in and out without pulling or friction can make a WORLD of difference.

That might be worth a try instead of pulling it (drain the little balloon first!!!) out. :blush: :blink:

However, today versus Monday shouldn't be a big deal.

We all handle things differently and he may be coming out the denial phase. That's a good thing usually. Maybe you guys could team up on some of the research activities. My wife is a nurse and she did research but I took ownership and was researching everything I could find (including this site). My wife and I would discuss information we found. There was some information I think we pretended we didn't find either. But it worked out for us. I didn't want her to be upset and she didn't want me to be upset but we were both pretty freaked out at first.

Being able to ask people questions who had already faced what I was about to face was so helpful to me and I can't even describe it. Nothing is too personal for us here so he could ask anything and everything. He doesn't have to use his real name and he can pick any avatar. I can't imagine that he doesn't have questions once he comes out of denial.


Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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10 years 3 weeks ago #31829 by New Diag 7
I am so sorry to hear about your breast cancer. You are like a true are making the rounds. :silly:
You are definitely a Trouper!!!!

Well, the catheter is truly getting on his nerves this morning. He is not wanting to wait until Monday to take it out. I don't blame him. Aside from the urologist going away for the weekend and I ASSUME being concerned that my husband might not be capable of urinating after the cath is out when he is out of town, I also see no purpose for it to be there for 4 days post-op. It is an incredible irritant. I am thinking I will take it out for him, and if for some reason he can't go...I'll take him to the ER for a straight cath.

Today, I think I made the mistake of leaving the "staging print out" on the printer. Mu husband apparently read it and I think the REALITY of this finally registered. Maybe a good thing at this point, maybe not. He appears to suddenly be very depressed this morning. Up until has been a bit frustrating for me, because I think his dialogue with the Doc has been more off the topic than on...simply because that is the way my husband initially deals with things. A coping mechanism...perhaps. I guess he just needed to digest all of this in increments.

I told him that the people who beat this stuff are the ones who follow the advice of those who have been through it, get in with top surgeons, and stay very pro-active with their diagnosis. We will do everything possible to beat it..because it is now a part of our lives.

In any event..Pat, I don't know how you handle it ALL, but I am surely GRATEFUL you and the others are here doing it.


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10 years 3 weeks ago #31823 by Patricia
Deputy Pat here.......yes Virginia
oh sorry thats another thread! :laugh:
Yes thats where second opinion comes in....just as all urologists are not created equal..neither are the pathologists.
At a multidisciplinary center they better have the best people in place or well you know...i will arrest them!
There are certain tumor markers that oncologists know what to look for.....bone scans, chest x-rays, and CT scans will show what is there. NOTHING sees micromets and we're not going to worry about them. I hear Broccoli will kill them anyway!!!
The single skill of the surgeon most important.
It is much easier to do the research when not emotionally involved. I remember all to well doing it by myself and wandering into sites and not knowing what the heck i was reading or if it even applied to me. I acquired an entirely new vocabulary. I don't believe there is another site anywhere that offers such great research and great information as this one. I've been to other sites that i cringe when i see its mostly a social site and though i know people mean well they are not getting the best advise. Its so easy to fall into the i'm finding out now with my breast cancer...

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10 years 3 weeks ago #31819 by Humpy
Officer Pat WILL throw the book at you...................

Age 54
T1NOMX,Grade 3 Urothelial CIS (Carcinoma in Situ)
Neobladder 5/19/2009
Prostate Capsule Sparing
U of M Hospital, Ann Arbor, Michigan

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