wife needing help: to prepare for husband's recovery, help with discussing

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towers
New Member


Date Joined Dec 2009
Total Posts : 13
   Posted 1/14/2010 1:01 PM (GMT -6)   
new here, husband 54yrs old just diagnosed on 12/28/09 with PC  PSA  4.3    Gleason 3+3  T1
path report 3 of 12 involvement
We are scheduled for open surgery on Feb. 11th at Stanford Hospital.  Dr. Brooks will be doing the surgery, at least 800 open under the belt, he is great!  WE feel very confident that it is confined to just the prostrate.
Husband is getting quite nervous, he has never been sick, had any surgeries.
I spend time on this site, and it has been so helpful, thank you all for sharing. I try to discuss findings with husband, he retreats. I am thinking fear. He has read Dr.Welsh's book, he is informed, but refuses to talk.
I would like to know how to prepare for the recovery, tips on how to approach husband for discussion.
He is usually so well prepared for everything and anything, self employed civil engineer and wonderful provider, husband, father to two young children ( 6 yr and 3 yr old ).....HE IS JUST A WONDERFUL MAN.   
Thank you in advance, 
 
 
wife of the tower man

GarthK
Regular Member


Date Joined Feb 2009
Total Posts : 74
   Posted 1/14/2010 1:21 PM (GMT -6)   
Greetings towers and sorry you have to join the group. I had exactly the same procedure a year ago with a uro I trusted and have never regretted it one bit. I got it over with and am glad it's gone. It sounds like your plan is good but be prepared to be inundated with responses from well-meaning members of this forum suggesting, if not demanding, that you get multiple opinions from well-known experts scattered around the USofA. They are all trying to be helpful but the shear volume of options and opinions can be overwhelming. I wanted the cancer gone and it is. If it comes back, I'll deal with it the best I can; still never regretting any previous decisions. I say, "Good Riddance!".

Best of luck,
Garth
Vitae: DOB: Q4'46, HT: 5'9", WT: 180
PSA: <2.5, DRE: Slight enlargement, one node
Biopsy: 12/08 4 of 12 cores positive, Gleason: 3+3
Surgery: RRP on 1/21/09 Catheter: 15 days
Pathology: AJCC: pT2a, clear margins, no involvement, Gleason: 3+2
First year 3-mo tests: <0.01, switched to 6-mo 12/12/09


Geebra
Regular Member


Date Joined May 2009
Total Posts : 476
   Posted 1/14/2010 1:27 PM (GMT -6)   
Towers,

Welcome to the site. As, I am sure, you know from reading posts before, this is a club that hates to get new members. So sorry you have to be here, but this is a great place to get support.

Thinking back to my journey, I was in shock for quite some time after the diagnosis. My doc is out of town, so I traveled there to get the results of biopsy and once I got the news, my first impulse was to get on the plane, go home, curl up in the bed and just get ready to die. My wife talked me into staying in Durham and getting all test and doc appointments done. It took me a while to be able to discuss it. I suspect your husband is in the same boat. He needs time to process the news. Maybe you can suggest for him to join this site?

It looks like his stats are very favorable and coupled with his otherwise good health, young age, and experienced surgeon, the prospects of complete recovery are great. Try to focus him on that. The surgery itself is not too bad, healing is fairly quick. Most men regain continence within a few months (it took me over a year, but I got there), and many regain erections within two years. There are plenty of tools to fight ED, if necessary.

I wish you both good luck! If you have any questions, fire away...

Greg B.
Father died from poorly differentiated PCa @ 78 - normal PSA and DRE
5 biopsies over 4 years negative while PSA going from 3.8 to 28
Dx Nov 2007, age 46, PSA 29, Gleason 4+4=8
Decided to participate in clinical trial at Duke - 6 rounds of chemo (Taxotere + Avastin)
PSA prior to treatment 1/8/2008 is 33.90, bounced on 1/31/2008 to 38.20, and down at the end of the treatment (4/24/2008) to 20.60
RRP at Duke (Dr. Moul) on 6/16/2008, Gleason downgraded 4+3=7, T3a N0MX, focal extraprostatic extension, two small positive margins
PSA undetectable for 8 months, then 2/6/2009 0.10, 4/26/2009 0.17, 5/22/2009 0.20, 6/11/2009 0.27
ADT (ongoing, duration TBD): Lupron started 6/22/2009
Salvage IMRT to prostate bed and pelvis - 72gy over 40 treatments finished 10/21/2009
PSA 6/25/2009 0.1, T=516, 7/23/2009 <0.05, T<10, 10/21/2009 <0.05, T<10


Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 3956
   Posted 1/14/2010 1:32 PM (GMT -6)   
First - Smack Hubby on the head real hard.
 
Second - Kiss Hubby on the cheek.
 
Third - remind him that this is a joint venture and he at least needs to talk to make You feel better.
 
Rinse and Repeat as needed till you get success.
Age 54   - 5'11"   205lbs
Overall Heath Condition - Good
PSA - July 2007 & Jan 2008 -> 1.3
Biopsy - 03/04/08 -> Gleason 6 
06/25/08 - Da Vinci robotic laparoscopy
05/14/09  - 4th Quarter PSA -> less then .01
11/20/09 - 18 Month PSA -> less then .01
Surgeon - Keith A. Waguespack, M.D.


Magaboo
Veteran Member


Date Joined Oct 2006
Total Posts : 1173
   Posted 1/14/2010 1:36 PM (GMT -6)   
Hi Towers and welcome to our site. No one wants to be here, but for us PC sufferers, it's the best site on the net.
Your husbands numbers look quite favorably for a good outcome if they hold true as post operative numbers. You seem to have made a choice as to treatment and hopefully, considered and investigated all the other options (active surveillance, seeds, external RT etc). With hubbies good numbers you have several options available to you.  
I am much older then your husband and choose the open surgery in 2006 and I'm doing well thus far. Your husband has one of the most important factors on his side already..........a family member that is helpful, understanding and supportive.
The best thing he can do before the operation is to get himself in good shape and do kegel exercises which will help in recovering from incontinence. After the operation he will need to give his body a chance to heal and recover from this major surgery. Start walking as soon as he feels up to it. He will probably feel quite well only days after he gets home, but should take it easy for a few week to let his body heat. Just follow Doctors orders. I found that a lot of walking soon after my operation helped a lot in the healing process.
Other members will soon chime in with much better advise and help.
Wishing you and your husband an easy trip thru this trying time in your lives.
All the best to you and let us know how your story unfolds.
 
Magaboo

Born Sept 1936
PSA 7.9
-ve DRE
Gleason's Score 3+4=7, 2 of 8 positive
open RP 28 Nov 06 (nerve sparing), Post op staging T3a
Gleasons still 3+4=7
Seminal vesicles and lymph nodes clear
Catheter out 15 Dec 06, Dry since 11 Feb 07
All PSA tests in 2007 (4) <.04
PSA tests in 2008: Mar.=.04; Jun.=.05; Sept.=.08; 3 days before Rad Start=0.1
Salvage RT completed (33 sessions - 66 Grays) on the 19th Dec., 08.
PSA in Jan., 09=0.05; July 09=<0.04; JAN 10=<0.04


towers
New Member


Date Joined Dec 2009
Total Posts : 13
   Posted 1/14/2010 1:42 PM (GMT -6)   
Yes, "want the cancer GONE!" is exactly what my husband states. We started with a uro from fresno, CA then found our best choice at the Stanford Cancer Clinic, Dr. Brooks. Husband is happy about doing his homework, but that is where it ends.....no other conversation about it. I want to discuss, he stops the conversation. When will he be ready to talk about it, and with who?
Planning needs to be done, will be traveling hours away with 2 small children, staying at hotel, and start of recovery.
I have past homehealth experience, believe I can give my husband good post surgery care. I was hoping to recieve info on recovery, so I can be completly ready for all coming our way.
How does a wife help reassure her husband that it will be OK, we will get through the IC and ED, but most of all, embrace the hope that the CA is gone!!

thank you again, I think being able to discuss with those who have been there, done it.....is great

wife of the tower man

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3220
   Posted 1/14/2010 2:01 PM (GMT -6)   
Hey Mrs. Towers
Is he a Rohn 45 or an aeromotor guy? I have both. 110ft and 70 ft respectively. My 27 yr old is a climber. Need him?

You have already helped your hubby's recovery by coming here. Lots of good stuff if you look around.

I was in a very similar situation except my PSA was 5x higher. I wasn't in denial, but pretty much let my wife be the reasonable, responsible one. I barely read the material from the Uro's office. We did not discuss recovery at all since I knew I would be fine. I needed to think that way. So does he. He's an engineer and knows the odds. No sense dwelling on it. He doesn't need a constant reminder.
Don't spend too much time thinking and rethinking it at this point. The die is cast.
Spend the next three weeks exercising and make sure to empty the prostate.
Before the surgery if I said "I heard that ___ is Good For Men's Prostate Health", GFMPH, she would gladly take care of it.
"I heard that a pound of chocolate is GFMPH." "OK, I'll bring home a box from the grocery store this afternoon."
"I heard that a weekend away is GFMPH." "Sure, I will schedule it today"
"I heard that having someone else take care of the lawn is GFMPH." "Sure, I'll call Speedy LawnCare."
I even got a Leupold VX-II 3-9x rifle scope because I heard somewhere that is was GFMPH!
Keep it light.
Good luck to both of you. (If he needs some Rohn 25, I have it. You have my email address)
Jeff
DX Age 56. First routine PSA test on April 8th: 17.8. Start 2 weeks of Cipro to rule out protatitis.
May PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, Gleason 6=3+3. Bone scan and C/T scan negative.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7, Tumor size: 2.5 x 1.8 cm, location: both lobes and apex.
Extraprostatic extension present; Perineural invasion: present, extensive.
No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 12/11 5 months, Still no activity, zip. Using pump daily since 11/11. No effect with 20 mg of Cialis or 100 mg of Viagra. Shots next? See Uro 1/20/10
Incontinence - 8/20 4 full pads per day
.. 9/7 3-4 full pads per day (Try cutting down on fluids. Bad idea. I know.)
11/14 4 months: Still 3 pads per day. 420ml/day, 91 um leak.
12/11 5 months: Still 3 pads per day. 400-450ml/day
1/11/10 6 months: Still 3 pads but leak is now 320 ml (5 day avg.)
Post Surgery PSA - 9/3 6 weeks - 0.05; 10/13 3 months - 0.04 undetectable.


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4450
   Posted 1/14/2010 2:18 PM (GMT -6)   
Hi, and welcome. Here's some links to some threads that contain lots of details on after-surgery care ande xpectations, along with some before prep you can do.

www.med.umich.edu/1libr/urology/postcare/rprostatectomy.htm

www.healingwell.com/community/default.aspx?f=35&m=1541459

www.healingwell.com/community/default.aspx?f=35&m=1624480

www.phoenix5.org/Basics/treatsides/RPsuggestsJoe.html
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP 110gms.- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
24 mts: PSA's: .04 each test since surgery, ED Continues-Bimix .3ml PRN or Trimix .15ml PRN


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 2583
   Posted 1/14/2010 3:08 PM (GMT -6)   

Hello Towers and welcome.  I am also sorry you have to be here and I am terribly sorry your hubby has prostate cancer.

First all of, lest I be cast as non-supportive, let me say that I wish you and your husband well whatever procedure and timeline you select.  However, if I understand the timing of your husband's disease, I gather that it has barely been two weeks since his diagnosis and that you have already made a major decision that may affect him for the rest of his life.  As one of our posters is fond of saying, "...most people spend more time deciding which car or furniture to buy...".  My point is that this is VERY quick for such a life-altering decision, especially since it seems hubby is still in shock as evidenced by his reluctance to even discuss this with you.

With his PSA and a G6 you both likely have considerably more time to make a decision.  I will be one of the ones that Garth references that recommends that you get more opinions.  Have you spoken with a radiation oncologist?  How about a prostate oncologist?  Have you read Dr. Peter Scardino's recent advice that he does not recommend surgery for early stage prostate cancer?  Does your husband really understand the possible changes in his quality of life from prostate cancer surgery? 

Hopefully this does not sound either presumptive or disrespecful...however, I do mean it to be blunt, straightforward and heartfelt.

Good luck,

Tudpock


Age 62, Gleason 4 +3 = 7, T1C, PSA 4.2, 2 of 16 cores cancerous, 27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 12/09.  6 month PSA 1.4 and now 1 year PSA at 1.0.  My docs are "delighted"!

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 3589
   Posted 1/14/2010 4:41 PM (GMT -6)   
Welcome I do think Steve N Dallas has the best advise. Stick to that. I do hope everything goes well. I had open surgery and there were no special needs. It was fairly simple. Hope this goes as well for him.

Jeff T
Cajun country
Jeff T Age 57

9/08 PSA 5.4, referred to Urologist
9/08 Biopsy: GS 3/4=7
10/08 Nerve sparing open RRP- Path Report: GS 3+3=7 Stg. pT2c, margins clear
3 mts: PSA .05 undetectable

10th month PSA <0.01
1year psa <0.01
ED- 5 mg Cialis daily, pump daily, going to try MUSE next. Next step injections.
15 months out injections Caveject (success)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 23847
   Posted 1/14/2010 4:59 PM (GMT -6)   
Hello and Welcome, Wife of Tower:

As in the custom of the good people at HW prostate cancer, you have been given a world of good advice and support. That is just how we are here, and you and your husband are most welcome.

I do have to say, that I agree with Tudpock above, on the thought of a second or third opinion about treatment choice. I respect your choice, and if that is what you stay with, no problem, I had open surgery myself, and for me, it was the right choice for my situation.

It has been less than 3 weeks since his PC dx, and with the numbers you state, your husband is fortunate to be in a position to consider more than one primary treatment. With PC, you get what shot at the primary treatment, there are no re-wind or re-do buttons, so it is a major decision for all of us to make.

On the surgery side, sounds like you got a very experienced top notch surgeon line up, that is most important if going that route. That is a good thing.

On the recovery side, we have a multitude of stories ,most without complications, some with. If you need help on the catheter side, by default being on my 10th catheter, I am the King Of Catheters, lol, not an honor I would have chosen. So if you need any help on that subject be glad.

Glad you found us, and as someone else mentioned, you have already helped your husband by coming here, and posting among us. Feel welcomed, and we will back you guys no matter what you decide or dicided to do. Good luck and keep us well posted, and keep those questions coming. No such thing as a stupid question.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 in place


soxfans4life
Regular Member


Date Joined Apr 2008
Total Posts : 63
   Posted 1/14/2010 6:20 PM (GMT -6)   
Hi wife of tower man from wife of sox fan. I really do understand..ohh. ok.. here goes. First , this is awful & its ok to feel that. Everything changes and you are both afraid. We were..so much. Next, its a dance of talk, back off, talk back off. You will both come through this I promise, be informed and bring him the information in small doses. Recovery will absolutely happen and you both will be stronger as time goes on. Hang in there, you will come out the other side. Annie
dx. 3-08  @ age 63. gleason 6 . 1 out of 12 cores positive. 4th biopsy in 8 years. previous 3 negative. followed closely due to family hx.grandfather, father and 2 uncles dx. with prostate cancer. dre negative, cat and bone scan negative. davinci scheduled for may 27, 2008. 2 daughters, retired hospital administration, air force family years ago. Davinci on May28,2008, both nerves spared. Catheter removed in 8 days, pathology report revealed precancerous lesions. Presurgical psa was 5.9, 1st  psa scheduled for August. 1st post surgery psa 0.00, august 6,2008. 2 following psa's 0.00.Yearly followup & psa sched for may 2009.


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2309
   Posted 1/14/2010 7:03 PM (GMT -6)   
Tower,
I had the robotic surgery but I think that other than one or 2 days extra and a little longer recovery, he will probably face the same issue that we all face. His numbers look good and hopefully he will have quick and full recovery. The one thing that I remember from my post surgery is some bladder spasm and constipation. Make sure that you get a prescription for the spasm and you can use over the counter med for constipation. Think about getting him something soft to sit on (donut shape). Doing Keel exercise before surgery will help with incontinence and walking after surgery will help in the recovery. He should start walking short distances on flat surfaces within a week. Good luck.
Age: 67 at Dx on 12/30/08
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed 2/9/09 Dr Fagin, Austin TX
Pathology report:
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Posterior lateral lesions measuring 1.5 x 1.4 x 1.0 cm showing focal capsular penetration over a distance of 3mm in circumference.
Prostatic adenocarciroma accounts for approx. 10-20% of the hemisphere.
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx, Negative margins
seminal vesicles clean, lymph nodes: not dissected
continent after 4 months
8 weeks PSA test 4/7/09 result <0.1
5 months PSA test 7/9/09 result <0.1
8 months PSA test 10/9/09 result <0.1


Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 305
   Posted 1/14/2010 7:16 PM (GMT -6)   

I suppose, just hang around until he is ready to talk.

Or bop him over the head and tell him that there are men out there (me, for one) who went through this alone and would have given anything to have someone to talk to.

Zen9


No family history of PC.  PSA reading in 2000 was around 3.0 .  Annual PSA readings gradually rose; no one said anything to me until my PSA reached 4.0 in September 2007, at which point my internist advised me to see a urologist.   
Urologist advised a repeat PSA reading in six months = 4.0 .  Diagnosed May 2008 at age 56 as a result of 12 core biopsy.  Biopsy report by Bostwick Laboratories = Gleason 3 + 3. 
Interviewed two urologists - the one who did the biopsy and another - the latter had the biopsy slides re-examined = Gleason 3 + 3. 
Then went to M. D. Anderson Cancer Center in Houston in July 2008 and met with a urologist and a radiologist.  Biopsy slides re-examined yet again, this time by MDA's internal pathology department = Gleason 3 + 4.   
Chose da Vinci surgery over proton beam therapy; surgery performed at M. D. Anderson Cancer Center on August 15, 2008.  Post-operative pathology report = four tumors, carcinoma contained in prostate, clean (negative) margins, lymph nodes clear, seminal vesicles clear.  Gleason = 4 + 3. 
Minor temporary incontinence; current extent of ED uncertain due to lack of sexual partner; refused treatments for ED as being pointless under the circumstances. 
PSA readings: 
November 2008 = <0.1 ["undetectable"]
June 2009 = <0.1   
December 2009 = <0.1
 


Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2087
   Posted 1/14/2010 9:36 PM (GMT -6)   
Tower,

You have received a lot of good advice and the links provided are a wealth of information about the medical and care issues.

I would like to offer some words for you and your husband from a different perspective.

My wife and I both have cancer. Each of our cancers effects the other person and therefore we are both battling our own cancer and our partners cancer as well.

My wife was diagnosed a little over 4 years ago and has gone through more trails and tribulations than I ever will in battling mine. But for that 4 years we battled it together. We talked about every thing together, made decisions together and lived through each experience together.

I can't imagine what it would have been like if she had shut me out in this process.

In my cancer things have been a little different. I was diagnosed 3 days after my wife went into the hospital in what was the beginning of a 7 week stay in ICU battling for her life.

She missed the opportunity to be with me as I did my research and made my decisions about my approach to PCa. But I talked to her about it every day while she was in that drug induced comma. Once in a while she says that a piece of something seems familiar, like she has heard me say it before. I delayed my surgery for 5 weeks, because I could not go while she was not aware of what I was doing.

At times she feels guilty about not being there for me and I do my darnedest to make her know that she was there with me. She was always a part of the decision making process and my recovery.

Prostate Cancer affects everyone in the family. Your husband really needs to come to terms that this cancer is not his alone and you can't be left out in the cold.

I don't care how strong he is, he needs you more than he knows in this process. Show him this when the time is right, try and try to make him understand how you feel being left out of the communications. My email is active, have him contact me if he wants to talk about anything. My perspective is just a little bit different on this.

Bless you and your family,

Sonny
61 years old
PSA 11/07 3.0
PSA 5/09 6.4
Diagnosis confirmed July 9, 2009
12 Needle Biopsy = 9 clear , 3 postive
<5%, 90%, 40%
Gleason Score (3+4) 7 in all positive cores
CT Organ Scan - negative
Nuclear Bone Scan - Negative
da Vinci 9/17/09
Post Surgery Pathology:
Gleason: Changed to (4+3) = 7
Stage: T3a
Tumor Volume 12.5%
NERVES SPARED-positive margin, extra-prostatic extension
30 day PSA 0.4, 50 day psa 0.53, 64 day psa 0.6
IMRT scheduled to begin Nov 30,2009 (74 days post surgery)


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2589
   Posted 1/14/2010 10:50 PM (GMT -6)   
Towesr,

As a male, I view sickness as a sign of weakness. I also view it as my responsibility to take care of it. Didn't want to do a lot of talking, didn't want to be babied, didn't want to put my wife to any extras work. Just get it done, deal with the consequences, and get back to work as soon as possible.

So I can relate to your husband. I swore my wife and kids to secrecy. Honestly, I wouldn't have taken my wife to the uro appointments exceot she wouldn't have it any other way.

Just be there. Let him deal with it his own way. I actually found a lot of comfort on this forum, by seeing that I wasn't the only guy with problems, and that PC is not a death sentence.

He will need some pads which you can get at the pharmacy, maybe some Milk of Magnesia to get him pooping again, some lighter meals of his favorite foods, (which may not be his favorite for a while), some books and mags to read, some loose fitting clothes such as exercise pants while he wears his catheter, and plenty of juices and thibgs to drink.

Baby him a little, but don't let him know you are. Might even be a good time to send the kids to grandma for a few days. Don't have company over unless he invites them.

Until he gets the catheter out, he most likely won't be a lot of fun to live with.

Eventually, he'll deal with the whole situation, and you'll have ypur man back.

Good luck. Be sure and let us know how he is doing.

Goodlife
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 3589
   Posted 1/14/2010 11:45 PM (GMT -6)   
Towesr

Just another view. I do not like to be fussed over when ill. My Wife was a doll. When I needed something she was there. Unlike Goodlife, I felt so good after surgery that I went to a football party with friends 4 days after my surgery. I had my own place to sit and people did get things for me. Some of my friends made the comment " Weren't you supposed to have surgery?" I smiled and said "I did" had the cath bag on my leg under workout pants. 3 wks after surgery my wife and I went on a 6 day vacation. This was open surgery by the way.

The phychological healing took a bit more work.

Jeff T
Jeff T Age 57

9/08 PSA 5.4, referred to Urologist
9/08 Biopsy: GS 3/4=7
10/08 Nerve sparing open RRP- Path Report: GS 3+3=7 Stg. pT2c, margins clear
3 mts: PSA .05 undetectable

10th month PSA <0.01
1year psa <0.01
ED- 5 mg Cialis daily, pump daily, going to try MUSE next. Next step injections.
15 months out injections Caveject (success)


brainsurgeon
Regular Member


Date Joined Jul 2009
Total Posts : 136
   Posted 1/15/2010 3:48 AM (GMT -6)   
Sounds like a typical "Big Boy Syndrome" to me. I ought to know because I used to be one. As he ages, it may get better. There are thousands out here like me and my PC results. Some on this forum have been through hell. I am not one of them, and I believe that I am in the majority. Time will help with your husband. Read this forum for awhile, and you can educate him with a new perspective. Good luck!
70 years old (1939) USA citizen
Prostatic carcinoma dxed June 2009 by PSA (7.0) and then Bx
PSAs yearly since 2001 ranged 1.52 to 7.0
Neg. CT and Bone Scan
4 of 8 biopsies positive (all right side) Gleason Score 3+4=7
Robotic assisted total prostatectomy and node excision July 2009 in Luzern, Switzerland by Dr. A. Mattei in the Kantonsspital
pT2c G3 pN0 (0/14)
Catheter out in 5 days (home in 3 days)
No incontinence
Positional neurpraxia resolved in 5 months.
Potency: beginning tumescence??? at 3 weeks post-op. Still happens at 3 months PO. Nearly usable one month later. At 5 mo. with 100 mg Vitamin V, pretty good.
3month PSA less than 0.01


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1779
   Posted 1/15/2010 8:35 AM (GMT -6)   
Tower, you have come to the right place - lots and lots of helpful information and people here. As another wife, I understand your desire to make your husband's recovery as comfortable as possible. While every situation is different, here is our story.

My husband, John, had robotic surgery in March 2008 (his stats are in my signature). Never having surgery, been hospitalized, or even under general anesthesia, there was definitely some apprehension. John would be the first to tell anyone that he is a big wuss when it comes to pain.

Jumping ahead a bit, the surgery took about 5 hours (which I wasn't prepared for) - I was told (by the surgeon) to expect it to last about 3 hours. It was the OR nurse who told us no way - expect 5 even 6 hours for this type of operation (lovely). Anyway, prior to wheeling John into the OR holding area, the anesthesiologist gave him a sedative which helped calm my guy down (he was very cranky because he hadn't eaten and started to complain of a headache).

Anyway, at 9:15 that night, the surgeon came out to me and my friend and told us that everything went fine and I could see John for about 10 minutes in the recovery room. Again, I wasn't prepared for how bloated John's face was - fortunately, the nurse in the recovery room prepared me before I walked in. As you may know, this type of surgery puts the patient in an inverted position - the head is lower than the legs which leads to alot of swelling. Coupled with the gas that's pumped into the abdominal area to allow the surgeon a more open view, John looked like a big fat pumpkin!

A morphine line had been put in by the anesthesiologist so that John could self-administer pain meds when needed. John had no pain and never pushed the button so the line was removed the next morning. The swelling was considerably less the following morning and the surgeon was very pleased with that since it meant the air pumped in was leaving the body (I honestly don't know which outlet it was using but he was considerably less swollen). OK, jumping ahead to home care.

John's biggest problem was the darn catheter - I think that's a universal issue. He had a leg bag (which is smaller and was used when leaving the house) plus the larger overnight bag. Switching the bags was a piece of cake - the nurse gave us complete written and verbal instructions on how to detach and reconnect the bag to the catheter. We had a prescription for pain meds which I filled but John never needed them. He had some difficulty sleeping at night because he couldn't find a comfortable position due to the catheter and urine bag. At the suggestion of his sister, I bought Tylenol PM and would give John 2 pills at night - he slept like a baby with no problems.

John was on a liquid diet until he had his first BM which occurred within 24 hours of coming home. Stool softeners are an absolute must, so plan on having them on hand. Once John had his first BM, he graduated to soft foods for a couple of days then slowly added regular foods to his diet. Once we knew his BMs were occurring on a regular basis, he was back on his full regular diet. The stress of a BM caused a discharge from the tip of the penis where the catheter exited - that is normal and we were prepared for that by the nurse. Other than that, John had no problems.

Before the surgery, I had been given a piece of advice that worked quite well for us and created a funny story in the midst of a very stressful time. John's big fear was putting any pressure on the catheter - he was really petrified that the darn thing would pop out. He didn't want to wear pants for fear of putting pressure on his new best friend. So, to help him feel comfortable around the house, I gave him one of my old flannel nightgowns! It kept him warm, and allowed total freedom of the catheter which made him happy. I also bought him a pair of nylon sports pants one size larger which were baggy enough to not tug on the catheter.

During recovery, there is no restriction with showering. The surgeon told us to remove the bandages from the sutures, and to gently wash the area with soap and water while in the shower. The only caveat was to not let the shower directly hit the suture areas so John would use a wash cloth to hold over the sutures while he rinsed in the shower. The urine bag goes in the shower and it can be put down in the tub or shower stall.

When sitting, John used an old, soft throw people I had laying around. It gave him just enough cushion to make him comfortable.

The catheter and staples were removed 9 days after surgery with no difficulty. Since this is long enough, I'm ending here but please let me know if you have any questions.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (single small EPE in posterior left). Perineural tumor infiltration present. Apex margin, bladder neck and SV negative. Final Gleason 3+4. PSA: 0.0 til July 2009. August 2009- 0.1, September 0.3, October back to 0.0, December 0.0. Thank you God!


CPA
Veteran Member


Date Joined Feb 2008
Total Posts : 655
   Posted 1/15/2010 9:26 AM (GMT -6)   

Greetings, Mrs. Towers.  My stats were very similar to your husbands.  I had just had my 55th birthday, fairly low PSA and involvement in 4 of 12 biopsies.  I had never had surgery, a broken bone, never even had a stitch!  I, too, had open surgery from a very experienced surgeon (couple of thousand open surgeries).  I understand the magic number is 300 so anything over that is great.  Sounds as if you are in good hands.  Looks like the biggest difference in our situation is the age of our children - mine were 29 and 33 at that point. 

I tend to internalize things and want to do my research (I'm an accountant) which I started doing.  My wife was with me every step of the way from the day we got the news to today.  She was with me and a vital part of everything that has happened - doesn't mean I didn't do some things on my own.  My wife and my son are both nurses so they know more than the average person.  One example - we went in to get the results of the biopsies on Christmas Eve 2007.  I heard my wife tell someone just a couple of months ago "I knew we were not going to get good news when they put us in a conference room rather than an exam room."  At that meeting the doc gave us a book to read - I started reading that day and finished on Christmas day and the next day was at Barnes and Noble buying 2 more books that were recommended in the original book. 

We met with a surgeon who was recommended by my doc and really liked him.  While the skill of your surgeon is the most important factor, it doesn't hurt if you like him as well.  He spent an hour with us going over all the details and all the possibilities.  After we made our decision to have the open surgery we had another 4 weeks until the actual surgery.  I travel quite a bit and during those 4 weeks my wife was right with me and that was very beneficial to me.  You have received good advise about things to do in preparation and I'd agree with what has been said about preparing for various things related to the surgery. 

There is one thing that hasn't been mentioned here and I know we are all different when it comes to intimacy but I thought it might be helpful to hear our experience.  My wife and I have always had a very enjoyable, regular intimate life.  We had been married 34 years at that point and know each other well.  I don't know if it is the unknown related to the many things that can happen with surgery, but we were like newleyweds that entire month.   Maybe we didn't know when the next time might be (if ever for some guys), but we certainly stored up for the future in that month! 

I am one of the fortunate ones that didn't really have big issues with incontinence and impotence.  We'll hope that your husband will continue on the same path that I was on and have the same results in those areas as well.  One thing that my doc suggested related to kegels was rather than doing the traditional kegel everytime I urinated I should stop my flow 4 or 5 times and each time I stopped the flow I should hold it for a count of 3.  I did that every time I urinated for the month prior to surgery and then when I had the catheter out I continued for the next month.  I basically had no incontinence.

One final thought that I would say because it sounds as if your husband and I are a lot alike.  My doc said in advance he would want me to take an ED drug (he prefers levitra or cialis).  I didn't have many ED issues so didn't take the pills - big mistake.  While I had good results almost immediately I never got back to 100% and in fact started to regress.  Once I started taking the levitra consistently I was quickly back to 100% of presurgery.  Tell him there is nothing wrong with taking the drug - with what he has been through the drug just helps compensate for what he no longer has inside his body to do for himself.  You will read this in the books as well, but he will need a lot more stimulation but from reading your message, I feel confident you will do what is needed in  that department. 

Probably more than you wanted, but with our stats so similar, I just thought it might be helpful to give you some very straightforward information.  Please keep us posted and if there is anything you think we might could help with feel free to email us at judatt@comcast.net.  I know my wife would be glad to talk with you if you thought that would be helpful.  We're all in this together and will be praying for you and your husband in the days to come.  David


Diagnosed Dec 2007 during annual routine physical at age 55
PSA doubled from previous year from 1.5 to 3.2
12 biopsies - 2 pos; 2 marginal
Gleason 3+3; upgraded to 4+3 post surgery
RRP 4 Feb 08; both nerves spared
Good pathology - no margins - all encapsulated
Catheter out Feb 13 - pad free Feb 16
PSA every 90 days - ZERO's everytime!
Great wife and family who take very good care of me


Mavica
Regular Member


Date Joined Jun 2008
Total Posts : 374
   Posted 1/15/2010 9:53 AM (GMT -6)   
towers said...
Husband is happy about doing his homework, but that is where it ends.....no other conversation about it. I want to discuss, he stops the conversation. When will he be ready to talk about it, and with who?
 
If your husband is as intelligent a person as your remarks indicate he is, he will know when the time is right to discuss this.  He has to come to grips with this, himself, before broadening the circle discussion.  Firstly, this is about him, not you or other members of the family.  Blunt as that remark may seem to be, it's true.  Back off, lest you push him away.  Best wishes for a successful outcome to the treatment.

Age:  60 (58 at diagnosis - June, 2008)

April '08 PSA 4.8 ("free PSA" 7.9), up from 3.5 year prior

June '08 had biopsy, 2 days later told results positive but in less than 1% of sample

Gleason's 3+3=6

Developed sepsis 2 days post-biopsy, seriously ill in hospital for 3 days

Dr. recommended robotic removal using da Vinci

Surgery 9/10/08

Northwestern Memorial Hospital, Chicago, IL

Dr. Robert Nadler, Urologist/Surgeon

Post-op Gleason's:  3+3, Tertiary 4

Margins:  Free

Bladder & Urethral:  Free

Seminal vesicles:  Not involved

Lymphatic/Vascular Invasion:  Not involved

Tumor:  T2c; Location:  Bilateral; Volume:  20%

Catheter:  Removed 12-days after surgery

Incontinent:  Yes (1/2 light pads per day)

Combination of Cialis and MUSE (alprostadil) three times weekly started 9-27-08

Returned to work 9-29-08 (18-19 days post-op)

PSA test result, post-op, 10/08: 0.0; 12/08: 0.0; 4/09: 0.0; 9/09: 0.0

 


GreenAcres
Regular Member


Date Joined Jul 2006
Total Posts : 474
   Posted 1/15/2010 2:25 PM (GMT -6)   
Hi, Towers (and all you old-timers out there).

Starting back in mid-2006, we lived here at HealingWell - our rock; our extended family.

I'm so glad I stopped in today. Because some thoughts came to mind. First off, I pulled a few old tips for things you'd need in the hotel room. While we went by vehicle, some of these were much easier. The reason, though, that I'm throwing this list in is you were wanting to know how to approach discussions. Maybe start by planning your trip list. You can discuss the whys and wheretofores and maybe it will start the ball rolling for important topics. Oh, yeah, you'll both be on an even bigger rollercoaster the next few days. But, think how fast time flies and then it will be all over and you'll be back here telling everyone what you've learned by your own experience. In turn, you'll be helping someone new.

So, here's my old list - we had robotics, but it's still surgery, so hope this helps.

-Small wastebasket to keep Foley catheter bag upright. (Looked all over for a very small one - finally found one at a "dollar" store with molded handles)
-Surgical gloves (all the catheter info said was to "wash your hands." Gloves really were easier to deal with - in addition to hand washing.)
-Antibiotic ointment - we took it, but the hospital provides a tube.
-Old sheet, washcloths, and towel - hotel sheets are white and there is some blood leakage following surgery. The folded up sheet was for underneath. Laid a washcloth over catheter entry and then a towel to prevent leakage onto top sheet. At that point, husb. did not feel like wearing pants/pajamas of any type. (Although I had slit an old pair and re-Velcroed for that purpose.)
-Gallon freezer bags - there are simply some things hotel staff do not need to see or deal with. The latex gloves, bloody tissues, and empty enema bottle (from the night before surgery) were stashed in the bags and disposed of at home.
-Generic stool softener - less expensive than prescription type and better to have everything on hand if possible.
-Small bottle of vinegar - for rinsing out leg bag and replacing with overnight bag. Used the leg bag to go from hospital to hotel.

Good luck to both of you!

Cindy
PSA had doubled in 14 mos to 4.3/Gleason 6
da Vinci 8/06 in Austin with Dr. Randy Fagin
Post surgical path shows encapsular penetration; possible bladder neck involvement. Up to 50% chance of recurrence.
PSAs remain undetectable; back in the land of "all clear."
Next PSA: April 09


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 1/15/2010 6:54 PM (GMT -6)   
tongue Welcome New Friend ~ to HealingWell…

 

This truly is the place to be!!!

 

Buddy and I invite you to visit our thread listed in our signature below… 

pull from “all of us”….  Things that will help make “YOUR JOURNEY” smoother.

Knowledge is Power ~ and you will be touched by many here willing to share their journey in hopes that it makes someone else’s a little easier.

 

Take your time and keep moving forward…. in a positive frame of mind.

Take time to read a few “Journey's”… and know you are not alone.  We all continue to walk the path with friends.  Some oldies, Newbies, and New Newbies!!

 

Here’s a gentle hug ~ to help when you think the clouds will overtake you!!! They can’t… the sun always shines so pull from all of us ~ the strength that we share will help move them away so you can see a little clearer.

 

Walk over and give that man of yours a HUG from all of us here at HealingWell.

 

WOW… it must be a time for “old-timers” for sure… good to see GreenAcres here!  Something pulled me here today also…. 

 

In Friendship ~


*bluebird  ~ Lee, Buddy, & Murphy from North Carolina

Link to our personal journey…>>>     Our Journey ~ Sharing is Caring 

Age 53 on February 2, 2006

April 3, 2006  Radical Retropubic Prostatectomy

7th PSA August 2009    less than 0.1 NON-DETECTABLE 

 


towers
New Member


Date Joined Dec 2009
Total Posts : 13
   Posted 1/19/2010 1:41 PM (GMT -6)   
Just wanted to say "thank you all" for your wonderful replies. I feel much more confident, and look forward to the recovery period. My husband has since read my post and replies, and smiled!! :) I hope he continues to get on the site and get more educated. This site is nothing short of great!
When you think you are alone in this journey, people like yourselves step up and share stories, give hope....thnks again. Pre-op tests this Thurs. Surgery on the 11th. Good thought went into this decision, might of been early to decide, but we are confident and certain that surgery is the best way to get to "cancer free". Will keep posting and I will keep reading your posts. God is great, he will see us through this.

appreciation, wife of the tower man
54 yr civil enginner  good health, very active tennis player
last PSA reading  11/09    4.3 
biopsy back   12/28 positive  3/12
Gleason score 3+3    stage T1
pathology reports and DRE supports CA contained to prostrate
Open surgery scheduled Feb. 11th, Stanford  
 


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1779
   Posted 1/19/2010 4:17 PM (GMT -6)   
Wife of Towers man: you've got the right attitude and it sounds like your husband is coming to terms with it all. I've no doubt that things will go wonderfully for both of you.

Stay with us and keep us posted on what's happening at your end. We'll have you and Tower man in our thoughts and prayers on February 11.

Sephie
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (single small EPE in posterior left). Perineural tumor infiltration present. Apex margin, bladder neck and SV negative. Final Gleason 3+4. PSA: 0.0 til July 2009. August 2009- 0.1, September 0.3, October back to 0.0, December 0.0. Thank you God!

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