dogyluver asks "how do I help my husband"?- first time post, was No Subject.

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dogyluver
Regular Member


Date Joined Sep 2009
Total Posts : 35
   Posted 9/6/2009 12:41 PM (GMT -6)   
My husband is 55 with an enlarged prostate and had his 1st PSA in May of 09, 3.2 free PSA in June 09 was 5.2 biospy showed 5 out of 12 to be maligant gleason score 3+4=7 T1c stage
4 suspisious and 3 benign. On August 24 open Prostatectomy at the Cleveland Clinic, on August 26 his hemoglobin was 7 so he recieved a blood transfusion rejected first the second one was ok he recieved 2 units.He was sent home on the 27 of August. He had a low grade fever for 7 days ranging from 9.4F-100.6F. The staples and catheter were removed Sept. 3, 2009. The pathology showed that the cancer was confined to the prostate the margins are clear. lymph node negetive, seminal vesicles negetive, vas deferens negative, and bladder neck shave negetive. These reports are all great but he is still very tired and weak, and dizzy not to mention incontinent and that has him depressed. We don't eat red meat so, we were told to take an iron supplement but told how much. He also takes Norvasc for HBP should he start on that or wait to see his GP.

My question is how do I help him, I constantly remind him of the giant improvements in 1 week and results are good. Those of you who have had the open prostatectomy please advise me. Thanks


Welcome to the Forum. I took the liberty of giving your post a subject, so folks can respond to you properly.

Post Edited By Moderator (James C.) : 9/6/2009 12:53:45 PM (GMT-6)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 9/6/2009 12:55 PM (GMT -6)   
welcome to HW, dogluver,

Your husband is doing great, sounds like his post surgery pathology reports sounds great. You must remind him that he has just had a major abdominal complex surgery not even two full weeks ago. I had open surgery too. Some degree on incontinence is expected, especially this soon, his catheter has only been out for 3 days. The weakness is expected. If he isn't taking them, he should be taking stool softeners to help him get regulated again, and to ease the pressue of going to the bathroom. He should listen closely to his doctor about not lifting much weight for so many weeks, that's important, even though the staples are out, the delicate internal stiching and sucturing needs time to heal properly. He should walk as often as he is comfortable ,but not over do it. He should rest often, and if he is in any real pain, that's what his pain meds are for. His body has just been through a major invasive operation, and it does take good patience in order to heal properly. The good news, is he is on the recovery side, so barring any unseen post surgery complications, he should continue to do better each day, a little bit at a time.

My best to the both you. Please keep us posted.

David in SC

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 9/6/2009 1:03 PM (GMT -6)   
Welcome to the forum. I understand how your husband is feeling, as I struggled with the low grade fevers and all around feeling crappy for a week after my open surgery. He can look on the bright side, the surgery is over, his recovery has begun, if a little rocky to start, and his path report appears to be good with no reported problems at present. The continence may take some time, unfortunately. Sometimes up to 2 years, sometimes in rare cases, never. However, he is early in his journey and has a lot of distance to go before giving up on the hope of regaining continence. I'd tell him that the general experience here is more men have continence issues after surgery than don't, he isn't alone and he needs to read some of the stories of guys here, he needs to join us and share his feelings with guys who know what he is feeling and have felt the same themselves. ZPlease encourage him to join us. He doesn't have to the the best typer or anything, we don't judge....

One thing I do recommend is that he get out and exercise, beginning with walking often and short distances to start. He may feel awful at first, but activity and exercise will help him greatly to regain his feelings of accomplishing something and help him concentrate on something other than how miserable he feels. Keep a watch for depression, he may need some help with that, and always remember to take care of yourself. A sick caregiver or helper isn't your role right now...
smilewinkgrin
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
22 mts: ED- 50 mg Viagra 3X week, pump daily,Trimix 30/1/20-.05ml 2X week continues
PSA's: .04 each test since surgery


creed_three
Veteran Member


Date Joined Jan 2007
Total Posts : 762
   Posted 9/6/2009 3:30 PM (GMT -6)   
Hi dogyluver (wonderful name!),
Good luck with assisting and supporting your hubby. It is a long road but I recall my hubby (who had open Surgery 2 & 1/2 yrs ago) was weak and tired from the anaesthetic for several weeks. He was also discharged without pain relief and 3 weeks later went and got some tablets,  as it was explained that residual pain here and there can be eased and is part of the healing for open surgery. My hubby was definitely recovering from the acute healing phase for several weeks. We managed it by me doing things with him (walking twice a day etc) and keeping up the encouragement by focusing on the good pathology outcomes (we had similiar good outcome to you). Also encouraging him to rest when needed (and yes, he kept falling asleep) but in the end it was the rest,  that worked the best. I don't think there is just one answer to what is the best way to help your hubby. It seems to me you are doing all the right things - having a good family doc to discuss any issues with is helpful. If you are worried about blood levels, a compassionate doc might just order more regular blood tests (at your request)  if it would ease your mind and his re. your diet preferences and how much iron supplement to take.  This could be the reason for his fatigue and it may pick up with some help or assessment in combination with you working on the diet aspects. Staying close and sharing what ever he wants to share with you. Also stay strong yourself so you can best support him. If you are interested in food, then perhaps cooking his favourite dishes might help.  My husband and I started going on picnics during his post op recovery, and we found that these sort of diversions are good to focus on the positives and talk and walk etc.
All the best and warm wishes for a good recovery for your husband. Lana
Creed_three - Husband 51 yrs (49 years at diagnosis)
PSA (2002) 2.1.  PSA (2006) 3.5.  1 x 5% core of 12 positive at biopsy. Open Radical Prostatectomy with nerve sparing April 2007. Gleeson 3 + 4 = 7.   Undetectable <.1 PSA since, specifically, June 2007-0.01, Oct 2007-0.02, April 2008-0.02: Oct 2008-0.03, Nov, 2008-0.02, April 2009-0.03. 


CPA
Veteran Member


Date Joined Feb 2008
Total Posts : 655
   Posted 9/6/2009 3:59 PM (GMT -6)   
Greetings, Dogyluver.  You have received some good advice already.  Stool softeners, pain meds, walking and taking it easy.  It has only been a few days since surgery and just a couple since the cath came out.  Focus on that excellent path report and the rest will come around sooner than you can think.  Please stay with us and keep us posted.  Thanks for being a good, supportive wife and looking for ways to help.  You have found friends - just let us know anyway we can help. 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


mvesr
Veteran Member


Date Joined Apr 2007
Total Posts : 823
   Posted 9/6/2009 5:33 PM (GMT -6)   
Hi Dogyluver

You have some good advice and I would follow it as much as you can. I too had open surgery and found if I walked every day I got stronger. Now just don't don't over do it. I ran out out steam about 3:00pm every day for several weeks. That seems like a common occurance to most people. It has been over two years since surgery and I am doing fine. Take care of yourself, you are on the road to recovery.

Mika
age at dx 54 now 57
psa at dx 4.3
got the bad news 1/29/07
open surgery Duke Medical Center 5-29-07
never more than 2 pads
ED is getting better
the shots work great, still can't give them to myself
two years of zero's


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 9/6/2009 6:53 PM (GMT -6)   
I agree with what everybody said above.
As strange as it may seem the cure for fatigue is exercise -- walking. At first my wife walked with me, half a block up and half a block down so we were never too far from home. Then one full block and more with her, then walks on my own. I tried for two a day getting longer each time.

Incontinence is massively depressing but over 90% return to normal with no further treatment. If not, many good options remain. Remaining active and involved in life was very important to me because I could see that incontinence was only a small part of life even when I was changing pads every 1 1/2 hours.

Stay in touch, we are here for you and your husband.
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0 - now light pads


Old Sailor
Regular Member


Date Joined Aug 2009
Total Posts : 208
   Posted 9/7/2009 9:24 AM (GMT -6)   

I had open rp on 13 Aug and started the Kegel exercises immediately and they helped because I am now almost 100% continent.  Also, don't force defecation, I use metamucil, stool softeners,  and miralax so as not to put pressure on the lower area.  All of the above threads are correct, it does take a while and I am still SORE at the incision area coming up at a month. 

One thing I found out for sure - the RPP is not as easy as some would have you believe!! I had a lot of pain.

The Old Sailor 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 9/7/2009 9:47 AM (GMT -6)   
Sailor, me too on the pain front, guess that is where we are all different. I was on the real pain meds for a full 3 weeks after I got home. For those lucky guys that could get right up and go walking for a mile, I admire them. I was too much in the pain zone for that kind of exertion.

Hope you are doing better too.

David in SC

Siewife
New Member


Date Joined Jun 2009
Total Posts : 14
   Posted 9/7/2009 10:37 AM (GMT -6)   
My hubby is just about a month ahead of yours  and boy does that month make a difference.  Similar ages, treatment, and pathology results.  First month was really tough - he was very tired, lots of pain and general discomfort and quite incontinent.  What helped?  Walking, walking as everyone has said.  We started out together walking a couple of blocks, slowly adding more, trying to go out 2x/day - and today returned from a brisk 4 mile walk.  My hubby needed lots of rest - spent most afternoons the first couple of weeks just sleeping (and he is NOT a napper!) but clearly what his body needed.  Needed pain meds at night as well to ensure better sleep.  He ate healthily (we are not big meat eaters either) - lots of fish and lots of juice, fruit.  No alchohol or caffeine until just the past few days when he is happily allowing himself a glass of wine at dinner.
 
What I did was to gently encourage him - both to take walks and to rest and to tell him about his improvements b/c he lost them in all the losses.  The first time he could put on regular pants instead of sweats was an achievement.  The first time he went up/down stairs easily and quickly was an achievement.  These events seem trivial but they mark improvements - and that's what my hubby needed - acknowledgments of the small victories.
 
Will say the incontinence continues and is frustrating.  Now on Depends at night and 2-3 pads/day depending on his activity level.  Hugely better than it was but not gone.  He goes back on Weds to talk about ED and for his first PSA - hoping to join the zero club.
 
Try and take care of yourself as well - as others have said.  I have found this to be both frightening and depressing - and we are both thinking a great deal about lifestyle changes as we look ahead.  Please keep us posted and know you are not alone.
husband, age 56
psa 4.3
biopsy 5/20/09 - 2/14 positive, 3+3=6
consultation 6/4/09 - revised to 3+4=7
open surgery 7/31/09; discharge 8/4
catheter out 8/7
T2a, N0, Mx, Gleason 7 (3+4)


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2458
   Posted 9/7/2009 4:57 PM (GMT -6)   
Hi dogluver,
You have received very good advice from many already. We all heal and different schedule some sooner than others. Incontinence is a problem for most. Some are over it in few days o few weeks and others it may take several months. My doctor told me that the average is normally around 5-6 months. Tell your husband to be patient and not be discouraged. The most important thing is his good pathology report.
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.
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


Colin45
Regular Member


Date Joined Feb 2009
Total Posts : 216
   Posted 9/7/2009 11:02 PM (GMT -6)   
Hi Dogluver
I had open at the end of July I was one of the lucky ones as far has the operation went very little pain pad free in a week (but still a few small mishaps) but what I want to say was that I am a bit of a bleeder and had to have 2 units of blood but 1 month after I had to see the Vampire doctor again and have my blood tested and was put on 5mg of Folic acid for a month just to get me back to the correct levels so do not feel afraid to ask for his blood to be checked again
 
 
Age 64 From UK now in Thailand Baby boy born 2/14/2009
 First PSA was showing 9.73 on 1/21/09.   on 5/7/09 PSA 9.78  Free PSA 0.83   Free:Total  PSA 0.08 
1/28/09 Biopsy carried out 12 core results show no adenocarcinoma
5/15/0924 Core biopsy results Gleason'S Grade 3+2=5
Involving approx 30% of one out of 12 cores on each side no perineural or angiolymphatic invation identified
One side PIN High Grade Bone scan clear 
Open surgery 7/27/09
Prostate Gland weighting 34 grms
Gleason upgraded to 3+3 Tumour not closeto prostatic capsule Seminal Vesicles not involved by Tumour 6 Lymph Nodes negative for Malignant cells
 


Amy41
Regular Member


Date Joined Jan 2009
Total Posts : 30
   Posted 9/8/2009 12:35 PM (GMT -6)   
Best wishes for a speedy recovery - sounds like the surgery took a lot out of him and the blood transfusions - don't forget other sources of iron are greens like collard (go for Ethiopian food they have awesome collard greens) and cream of wheat.

TeddyG
Regular Member


Date Joined Apr 2009
Total Posts : 133
   Posted 9/8/2009 10:24 PM (GMT -6)   

Doggy,

Your hubby is as we say here "on the other side" and sounds like he is doing very well considering all factors. I often say here, and I have seen it repeated, "measure progress on a weekly basis" and you will see the milestones. Day to day progress is in small increments, but over a week, and then a month and then, "Oh, look how far you have come." It is a process. Just be there for him and encourage him to get up and around. My best recovery day (pre catheter removal) was when I ventured out of the house for a walk in the rain. I loved it knowing I was alive, past surgery and "on the other side."

Ted


Background:
Age 55, two teens, very fit cyclist (avg 2000+ miles per year) and weight, diet, etc. consistent with good habits. Stressful job as attorney; very supporting wife who is helping me through every stage of this war.
Stats:
2006 PSA - 1.5
2007 PSA - 2.3
2008 PSA - 5.3 (18 mos.)
2009 Jan. 20 - Biopsy 12 samples
        Feb 3 Dx 2/12 samples positive, low volume  (5% and 7-10%)
Gleason 3+4, later downgraded by second opinion at Johns-Hopkins to 3+3, but "it's still PCa" as my Doc said.
Laproscopic surgery April 9,  University of KY Medical Center, Lexington, 3 days in hospital, catheter removal April 21.
Pathology: clear margins, no cancer in prostate: told that this is very rare and Doc has only seen it in 3 out of over 1400 cases; I rearched the concept of "vanishing cancer" and found a tumor classification of tP0 and asked Doc if it applied to me. He said that it was unlikely because if a pathologist had done a much more detailed analysis of the tissue, he would likely find more foci somewhere, and biopsy found "needle in the haystack as opposed to the tip of the iceberg"; Nevertheless, it is a blessing;
Regardless of the science, my family says "miracle."
Now working w/ post-surgery issues....
 

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