Our journey (warning long)

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In This Together Wife
Regular Member


Date Joined Dec 2009
Total Posts : 135
   Posted 1/4/2010 1:26 PM (GMT -6)   

As promised, here is our story.

Hubby got good insurance at work so broke his habit of not going to the doctor to see if there was any relief from many years of back pain. Doctor said a back transplant would be good but since there is no such thing he suggested a new career not so strenuous (he does maintenance). By the way your PSA was too high 4.98 so referral to urologist. 2nd PSA was 4.89 so hubby said it is getting better, "I just wanted my back fixed." I could insert that comment periodically for the duration of this journey tongue Biopsy –PCa welcome to the club-- Happy 49th birthday!

We were niave and doctor said he would be cured by either radiation or surgery-did not suggest robotic as it is taking them 11 hours here. He would do open surgery if we chose it—take our time and let us borrow his book on 101 ?s about PCa. I would have trusted him and went with it except hubby did not want anyone "ripping out something God put in there". Thank God for finding it early and for hubby’s hesitancy since it gave me time for research. Read Dr Wash’s and John Mulhall’s books and this and a couple other forums. Good radiation was not within driving distance so hubby decided on DaVinci. Got 2nd opinion 4 hours drive and scheduled surgery. I struggled with lonliness at the hosp and in not having anyone really understand why it is not "just" PC did not blame anyone as I was the same a few months ago, just wanted some sympathy. Many repetitions of "I just wanted my back fixed" tongue

Okay here goes. . . we thought surgery was scheduled for 11:15 turns out to be 1:15 actually started at 3:15 finished at 6:30 pm. Doctor came out and said –he did well, spared both nerve bundles, due to his young age, was "vascular and had a lot of weeping" (not sure what that might mean) took a little longer due to that. Had to reconstruct one side of the bladder neck. Never heard the word "but" but I felt like it was there somewhere. Anesthesiologist (sp?) came out (maybe since it was so late) said it went a little long, said "he is a good guy" hopefully it will go okay for him, seemed to pause and stand quietly for a moment, again I did not hear the word but, but felt like it was there. Said hubby was in a lot of pain so he had given him pain med and he would be groggy for a while so have a seat. about an hour goes by --
Thought it was time to go encourage and start to " be there for my man" wrong! When I saw him and heard his scratchy weak words, I almost passed out. Nurses had left to other side of room, so I grabbed a chair on wheels and sat down thought it would pass, hubby was trying to talk but words were very mumbly. My sweating and dizziness continued, said to hubby "be right back" still sitting in chair I pushed with my feet on the floor to wheel myself to where nurses were and said I feel like I’m going to pass out. So got to lay on a bed next to my hubby in recovery for 28 minutes past the 2 min limit and hold his hand and have a good laugh as the nurses and I joked about the whole thing. Didn’t know I was going to be "one of those" . never had this reaction when taking care of others.
So daughter and I are sent to his room to wait for him to be moved there after recovery. When he was wheeled in sight of him brought on my neaseau and diarrhea tried to keep it to myself but was struggling. He sat up too quickly and got pale someone was arranging his cath bag. His head fell back and eyes fixed and then he made snoring or gagging sounds I said to the girl with his bag SOMETHINGS WRONG she said SOMETHINGS WRONG and yelled for nurse, I ran for the nurse calling him too. He came in and put hubby’s head back up and called hubbys name and asked him if he is okay does he know where he is. . .snapped him out of it. Scary! Doctor said next day was probably due to having pain med and sitting up -had a little drugged up episode. Hubby was still having a lot of pain. We did not expect this as I had read experiences on other forums and in books and from the doctor this can be a relatively pain free procedure. Every moan sent me to the bathroom with D. Thank God for daughter age 11 ( almost 12 next month) she gave him his ice chips and tended to him. I was fine if I walked out of room but when in there I struggled. Tried to keep it so myself. Called some people and asked them to pray for me and ask if they knew how I could "get over this" I need to get control. Nurse felt the need to ask us why we did not choose "the good doctor" and let us know the shortcomings of the doctor we chose. smhair  Just what you need to hear hours after a surgery which may leave you with ED and incontinence!. ...We were able to spend the night with him.
Morning--Finally I received grace and was back" in control". Very humbling for me. Hubby continued to have pain even with med. Doctor said it was bladder spasms. Had his liquid diet and did his walking, could not pass gas. Bladder spasms stopped gas pain started in left shoulder. Late in afternoon was given the option to go home or stay one more day. Hubby thought he might feel better at home. Got on the road about ½ hour hubby said got to stop. Got a motel for the night. Lots of gas pain and could not find a comfortable place to sleep or sit. He felt a little short of breath (not new was like this since surgery) and had 99.6 temp. Got his thick robe off him and temp went back down. Prayed for gas to pass.
Morning still no gas passed but pain was tolerable. Put inflatable donut in car gave him pain med and drove the rest of the 3 ½ hours home, he still had shoulder pain. Got home was fine when laying down, but when got up severe (pain scale 8 he said) in shoulder. Tried to get up and do walking as much as he could but pain made him short of breath. (An old sock filled with long grain rice microwaved for 1-3 minutes makes a great heating pad. ) Called doctor in evening. Said it sounds within normal. Try to walk and pass the gas. Go to ER if you need to. Finally during the night passed gas! Cath was due to come out in 6 days, doctor changed it to 10 days.
Catheter was extremely painful the full ten days hubby had it.( read a post about one guy being allergic to latex, maybe that was the case??) Doctor said after removing it that he was swollen and our concern for the next week is not incontinence but being stopped up. Gave him Flomax to keep things flowing and something for the burning when going. Bathroom every 1/2 hour.

We got a copy of the surgery report. Nothing unusual mentioned so guess my "feelings" were just anxiety. Dr had surgery the morning of our appt.to remove cath so we spent a lot of time in the waiting room. Turned out to be a huge blessing! After that nurse at the hosp had planted a seed of doubt in my mind about our choice of doctor it was so comforting to be in a room full of patients from the same doctor at different stages of the journey comparing stories and good reports. By the time the doctor got there we already had many of our questions answered and peace of mind about our choice. "Waiting room therapy" it was great to hear the guys laughing and talking freely with others who understood.

At two weeks of recovery hubby had extreme (drop to the knees) pain at end of urinating and felt something at the tip. Call to Dr was answered with we always get these calls at 2 weeks, you are passing scabs. Advice to sit in hot bath for 45min was a Godsend. Still experiencing these symptoms but getting better. Expecting to feel fine after cath and somewhat enjoying 2 more weeks off was a disappointment. He was not able to do much due to discomfort. By 3 weeks he was wondering if he was going to be okay to go back to work at 4 weeks (due to job having heavy lifting). Doctor was willing to give him as much time off as he wanted but with no pay he needed to get back. 4th week was better and he has returned to work. At 7 weeks Hubby gets up only once at night and recovery is going well, he is sad for the way "life used to be" but enjoying the adventure of rehabilitaion! J

I know this is a men’s forum so hope you don’t mind the story about me.

BTW now his back hurts again tongue want to find new career but that will mean new insurance. Is PC considered a pre-existing condition? Anyone have problems with that?

Promise new posts will not be so long but now you know. . .


In This Together Wife
Regular Member


Date Joined Dec 2009
Total Posts : 135
   Posted 1/4/2010 1:29 PM (GMT -6)   
Tried to include stats in signature but I don't see it??

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 1/4/2010 1:54 PM (GMT -6)   
Incredible story, and full of good details. THanks for posting it. The nurse that critisized your doctor choice was very unprofessional and should have been reported. If you husband with in that much pain, and considering how far you lived from the hospital, in my opinion he should never have been let out of the hospital. For many men, there might not be that much raw pain, but for others, a lot. I was in that group too. I had open surgery and was in the hospital 4 1/2 days, and I will never regret that. If he was passing things that big without the catheter, perhaps they should have left it in even longer. My doctor had my original catheter in for 30 days after surgery, had a lot of problem with the bladder neck to urethra connection, wanted it to have a better chance to heal.

Glad you husband is through all that part, and now on the recovery side. Hopefully, he will slowly improve as the days and weeks go by.
Please keep us well posted here, and tell us how he is doing.

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


Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 1/4/2010 2:05 PM (GMT -6)   
ITTW,

Your story will help a lot of people that come here looking for answers. I agree with David in that someone should have been called to task about the insensitive remarks about your choice of doctors.

You made a comment about this being a guys's forum, nothing could be farther from the truth. Our wives and loved ones are every bit as much involved in this journey as we are and at times to a greater degree. Look no further than your own experience to see this. You were the one dealing with issues while you husband was drugged and not fully coherent.

There is not a man among us that could make this trip without the love and support or our loved ones.

BTW, maybe you could give us a first name or nick name or something. Sending everything to IITW seems a little impersonal and we are all well beyond that.

Good luck to you and your family as the journey unfolds. Blessing to you all,

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)


In This Together Wife
Regular Member


Date Joined Dec 2009
Total Posts : 135
   Posted 1/4/2010 2:18 PM (GMT -6)   
Goof idea Sonny you can call me Smiley
Here are the stats I tried to include in signature
Hubby's stats)
Age 48 healthy-had bronchitis once :)

8-4-09 Family Practioner for back pain PSA 4.9
8-20-09 Consult with urologist PSA 4.89
9-2-09 Biopsy 3 cores positive 7% 3+3 (6) gleason
9-22-09 Birthday turned 49
10-12-09 2nd opinion
11-13-09 DaVinci
11-23-09 Cath removed Path report cancer contained neg. margins
Feb 2010 wil be followup PSA
(Hubby's stats)
Age 48 healthy-had bronchitis once :)
 
8-4-09    Family Practioner for back pain  PSA 4.9
8-20-09  Consult with urologist                PSA 4.89
9-2-09    Biopsy          3 cores positive 7% 3+3 (6) gleason
9-22-09  Birthday turned 49
10-12-09 2nd opinion
11-13-09 DaVinci
11-23-09 Cath removed  Path report cancer contained neg. margins
Feb 2010 wil be followup PSA


creed_three
Veteran Member


Date Joined Jan 2007
Total Posts : 762
   Posted 1/4/2010 2:24 PM (GMT -6)   
Hi and welcome,
What an ordeal you have had! My husband is the same age as yours. He was also diagnosed by chance in a health check up for something else, AND got the diagnosis on his 49th birthday!! Please continue to share your experiences as others have mentioned. A warm welcome and thanks for sharing your story. cheers, Lana
Creed_three (Lana) - with husband "CJ" now aged 52 yrs (49 years at diagnosis).
PSA (2002) 2.1. (2006) 3.5.  1 x 5% core of 12 positive at biopsy. Open Radical Prostatectomy with nerve sparing April 2007 Sydney, Australia. Gleeson 3 + 4 = 7. 2 small multifocal lesions. Contained. Undetectable <.1 PSA since: June 2007-0.01, Oct 2007-0.02, April 2008-0.02: Oct 2008-0.03, Nov, 2008-0.02, April 2009-0.03. Next PSA April 2010.


Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 1/4/2010 2:25 PM (GMT -6)   
Smiley,

Great job. Great name too. It speaks volumes about the care and nurturing your husband receives from you.

Welcome amongst us more fully now that we have a name. Drop in anytime, pull up a chair and chat for a while. You are most assuredly always welcome.

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)


skeener
Regular Member


Date Joined Dec 2009
Total Posts : 214
   Posted 1/4/2010 2:41 PM (GMT -6)   
Smiley,
 
Well told story that will be helpful to others on the same journey.
 
What an awful comment made by the nurse at the worst possible time.  I hope someone reprimands the nurse severely.
 
Hope that your husband makes good progress.
 
Skeener
 

Age:  63 
Biopsy: May 09 showed 2 of 12 cores positive for prostate cancer -- 1 at 5% and 1 at 25%.  Cancer indicated as non aggressive.  Gleason Score: 3+3.
RRP on Oct 23/09 in London, Ontario.  Excellent surgeon. 
7 Weeks Post Op -  The fears I had about bad things about the operation and recovery did not materialise except of course ED!!.  Otherwise, everything went very smoothly.  Incontinence not a problem.  Wear a pad when out just in case. Pain was never a problem.
Pathology:  Unremarkable 
First followup PSA and Visit: Feb 07/10.      


60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2222
   Posted 1/4/2010 3:35 PM (GMT -6)   
Smiley,
Great post from a spouse. Most people do not have much pain after the DaVinci, but like your husband mine was horrible and the pain lasted for over one month. Friends quit calling me, I think because my voice was so weak from the pain, and that made them uncomfortable. As far as the comments from the Nurse goes, I will say that I have met some great practioners in this field during my journey and some real bad ones. Cant promise that I wont smack someone before it's over, but the hospital was the worse part. Glad that he is now doing better and on the road to recovery, as are you.
Michael
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
Margin slightly involved
2 pads per day, 1 depends but getting better,
8/5 1 depend at night only, now none
 started ED tx 7/17, slow go
Post op dx of neuropathy
3 months psa.01, 6 month psa.4, 6 1/2 month psa.5
Consulting with Primary Urologist for further tx.
Great family and friends
Michael


Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 1/5/2010 10:03 AM (GMT -6)   
Smiley,

Glad you liked the pic. It was definitely one of my better days. Most of my pics don't turn out that good, but the smile and the "Every Day is A Bonus" philosophy are always present. You've got to smile and laugh at this stuff once in a while otherwise it would be just too darned depressing.

Hope things are better today than yesterday and not as good as they will be tomorrow.

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)


In This Together Wife
Regular Member


Date Joined Dec 2009
Total Posts : 135
   Posted 1/5/2010 10:17 AM (GMT -6)   
Michael and Skeener thanks for your comments
 
David I know you have and continue to have a tough time of it, thankful you have this forum keep us posted
 
Sonny typo turned your suggestion into a "goof"yeah   Meant "good" idea!  Hope your RV has a laptop so you can still post--will your wife share the driving?
 
Lana good to meet a fellow "sister" yea for CJ being in the zero club!
 
Have a great day!
Smiley

(Hubby's stats)
Age 48 healthy-had bronchitis once :)
 
8-4-09    Family Practioner for back pain  PSA 4.9
8-20-09  Consult with urologist                PSA 4.89
9-2-09    Biopsy          3 cores positive 7% 3+3 (6) gleason
9-22-09  Birthday turned 49
10-12-09 2nd opinion
11-13-09 DaVinci
11-23-09 Cath removed  Path report cancer contained neg. margins
Feb 2010 wil be followup PSA


Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 1/5/2010 11:27 AM (GMT -6)   
Smiley,

Unfortunately my wife will not be doing any of the driving. I am blessed these days that my redeeming qualities are driver, cook, house cleaner, launderer, caregiver and companion. Then again maybe that's why my beauty has kept me around for 26+ years. I have been doing all of those things for the 26+ years of our marriage.

And at times I might add, I have taken a lot of grief from other husbands when their wives found out about the cooking and house work. LLOOLL

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)

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