Going through tough times

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55
New Member


Date Joined May 2010
Total Posts : 5
   Posted 6/23/2010 8:20 AM (GMT -6)   
It's going to be a tough summer. Husband has mets in his right femor and is now experiencing pain. He was told they could do radiation and we have an appointment in July to see chemo doctor. It's really hard, as a wife, to stand by and not push. My husband does not want to see a doctor until the pain is bad enough to require some help. He isn't one to take medication and he feels he doesn't want to get dependent on pain killers and he just doesn't want to go and see a doctor right now. We have had a tough go of it with doctors as our family doctor isn't the most shall we say sympathetic guy and our oncologist is off on medical leave. We don't have a lot of choices for doctors where we live and it really isn't an option to get a second opinion when there isn't really anyone to get a second opinion from and also money is a consideration. I am trying to be strong and let him make his own decisions, but sometimes it's really tough. How do you other wives out there cope. I know it shouldn't be about me, but could use a little help. sad

Husband is 55, Diagnosed 2007 Gleason 8, PSA started at 107 went down, but is slowly climbing again. Had radiation treatment and is on HRT lupron +casodex.

English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2215
   Posted 6/23/2010 8:44 AM (GMT -6)   
55
Sorry about the mets the pain and the problems about what to decide, when to decide and how to decide.
I'm not really sure what to suggest as a solution to tjhis very personal side of PCa.

Yes it is about his body and his decisions, but I know, without being in the position that you two are in that PCa stresses you out so that you sometimes feel like you don't actually want to make any decisions or do anything, in part because the action that results from those decisons is yet one more step down the PCa road.

I think that once PCa reaches this stage (when it's about containment not cure) guys need to accept that it has become much more of a team game and the opinions and needs of partners need to be taken ionto account. They don't get out vote, but there can often be a degree of denial where the partners kind but firm guidance steers things quietly down the required route.

From what I've been told RT to tackle bone mets is not like first time RT, it is just a few sessions to zap the area of femur or whatever to slow things down. Yes pain meds is something that seems like a bad way to go, as you may be worried that you will get hooked, but the correct thing is to manage the pain, and that means that if necessary you do it with drugs.

I'm guessing he's scared as well, and that you are too, but I think at this time you have to be honest with each other. Not tough love exactly, but grasp the nettle or whatever metaphor you choose and tackle it together.

My very best wishes to you
Alfred
Age at Dx 48 No Family history of Prostate Cancer
Married 25 years, and I cannot thank my wife enough for her support.
April 2009: PSA 8.6 DRE: negative. Tumour in 2 out of 12 cores. Gleason 3+3.
RALP (nerve-sparing) at AVL-NKI Hospital Amsterdam on 29th July 2009. Stay 1 night.
Partial erections on while catheter still in. Catheter out on 6th Aug 2009.
Dry at night after catheter came out
Post-op Gleason 3+4. Tumour mainly in left near neck of bladder.
Left Seminal Vesicle invaded, (=T3b!)
no perineraul invasion, no vascular invasion. clear margins,
Erection 100% on 15th Aug 2009, but lots of leaking of urine
Stopped wearing pads on 21st Sept 2009
Pre-op style intercourse on 24th Oct 2009 !! No use of tablets, jabs, VED etc. but...
Nov 17th 2009 PSA = 0.1
Can still get erections okay, and almost no leaking of urine, but since December 2009 I don't have orgasms, instead I just have intense pain in place where prostate used to be.
Mar 17th 2010 PSA = 0.4!!! referred to radiation therapist
April 13th 2010 CT scan.
April 28th 2010 Started Radiation Therapy (66Gy - 33 sessions)
June 11th 2010 finished RT - main side effect tiredness, but also the occasional small leak


60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2222
   Posted 6/23/2010 9:31 AM (GMT -6)   
55,
Sorry to hear about your and your husbands situation. I too put off taking pain meds and would lay in bed thinking tonight is the night I go to the ER. Had pain pills left over from surgery and saved those so I wouldnt go to our local ER. Had to take 1/2 Lorab for a month after I finally could take no more. But my pain was not from mets. Hopefully in time your husband will chose a different route for his PCa. Take care and hope you find some support for you.
Michael
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed, 61 yo 2010
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
2 pads per day, 1 depends but getting better,
 started ED tx 7/17, slow go
Post op dx of neuropathy
T2C left lateral and left posterior margins involved
3 months psa.01, 6 month psa.4, 6 1/2 month psa.5 on 11/28/10
Starting IMRT on 1/18/10, Completed 39 tx at 70 gys on 3/12/10
6 week Post IMRT PSA .44 a drop from .5 but maybe more
Great family and friends
Michael


Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4829
   Posted 6/23/2010 9:40 AM (GMT -6)   
Ask him to take the pain meds for You since he won't take em for himself.  If that doesn't work - smack him with a skillet shocked
 
I watched my boss die a slow death from her breast cancer. It was a big concern for her about what her hubby and three kids were going through. As hard as it was - no one could convince her to not worry about them.
Age 55   - 5'11"   215lbs
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
05/18/10 - 24 Month PSA -> less then .01
Surgeon - Keith A. Waguespack, M.D.


Herophilus
Veteran Member


Date Joined Sep 2009
Total Posts : 663
   Posted 6/23/2010 10:01 AM (GMT -6)   

55

May you and your husband find some peace!

Hero


55
New Member


Date Joined May 2010
Total Posts : 5
   Posted 6/23/2010 10:05 AM (GMT -6)   
Thank you for your reply's. I don't want anyone to get the wrong impression. My husband is a wonderful man and he hides his pain because he doesn't want me to worry and get upset. Yesterday we had a good discussion and he said he would seak help if the pain gets worse. It seems that if he uses his legs a lot and also when it rains (which we have had an abundance of ) that his leg aches more. At first we thought it was arthritis , but it's too coincidental that it's in the leg that has the met. It's just tough for me to stand by and know there is not a lot I can't do. I guess all our lives together I have taken on the mother role with our kids and with him as I try to fix things and sometimes I guess they're not fixable. It's just really hard for me right now as , like anyone in this situation, I just want him to get better and I know that isn't going to happen.

This is just a good place to vent where there are people who understand what is going on. Until you have cancer you can't realize what it's like , you can sympathies, but you just can't understand. I guess this is one of the tough things is life. I just can't think of not having him in my life. I was 19 when we married and I just don't want to loose him. shakehead So it helps to post on here. Thank you again for letting me express myself it helps me accept what I can't change. I just want to spend our last days, with each other, the best we can and the most optimistic I can be.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 6/23/2010 11:56 AM (GMT -6)   
You and your husband need to sit down with one of your doctors, or even a good doctor's nurse, and let him/her explain to your husband, in front of you, the value and wisdom of proper pain management. It is a science in itself. Your husband is only harming himself, delaying healing times, and making himself miserable doing it "his" way, good guy or not. I have been on prescription pain pills daily since October 1 in particular. My doctor monitors me closely, and he knows that I do not take them in the day when not needed, I never drive on them, and he keeps a close count of how much he is prescribing them to me. I never abuse them, or take more than I should. But I can tell you, with constant pain from endless bladder spasms, I would not make it through the next night if I refused to take the meds. If you wait till you are hurting real, real bad, then the effectivness of taking the meds diminishes, so there is no gain or incentive not to be compliant to the med schedues. I speak of this first hand, and my wife is a nurse that deals with a lot of terminal patients, and she would back this up. Your husband just needs to know, that he is only prolonging his suffering by doing it his way, definitely not in his best health interest in my opinion.

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, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
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 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, 5/24 put in Cath #17


deer hunter
Regular Member


Date Joined Jan 2010
Total Posts : 246
   Posted 6/23/2010 6:05 PM (GMT -6)   
I agree with what Dave said and i like the part where Steve said hit him with skillet .
Keep on Keeping on
DEERHUNTER
dx age 57 01/06 open RP 4/06 psa in 01/06 8.1  surgery path report Gleason 3+4=7 poorly differentiated  tumor was 90%involved in both lobes surgical margins postive. in the right apex and right radial margins tumor grade G3  perineural invasion present high grade of PIN found  T2c NX MX PSA 0706  .01 10/06 .02 01/07 .03 04/07 .04  06/07 .05  07/07 .08 07/07 bone scans pelvic ct neg. 08/07 proscintic scan neg.9/07 psa.10 net with rad onc. wanted to do SRT but i did not do it 10/07  saw a new dr at Emory University [my old dr urg. suggested second opinion ]  bone scans negs ct scans pelvics neg. biopies of the bladder and adrinal glands neg.another proscintic scan neg.12/07 Psa .11 clinial trial Emory injected with protons to try and find the cancer cells no luck 3/08 psa .17 06/08 psa .23 psa 09/08 psa .32 12/08 psa .39 3/09 psa .39 6/09 psa .43  meet with medical onc. he said  i might have waited to long to start SRT 7/09 psa .50  another bone scan ct scan all neg.MRI neg. meet rad. psa the last of 7/09was .55 onc. 7/09 started casdex 50mg 1 day for 30 days 2 shots of lupron started rad treament 10/09 40 treatments 75 gm 12 shots each time all aroud pelvic finished 12/09  psa .07 and psa 01/10.05 next dr visit 03/10 wait and see 3/10 psa.05 5/14/10  family doc done blood work at my request her lab psa .01  
6/17/10 saw rad.onc. having problems with hips and muscles {bone density test sch, 6/25/10 wait and see


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2458
   Posted 6/23/2010 6:33 PM (GMT -6)   
55,
First of all, sorry about your husbands mets and pain. I can't imagine what the two of you are going through. I suggest that you tell your husband that your love for him makes his pain become yours. To live with pain when there is something he can do about is not the right thing to do. I wish you both peace.
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
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 5 months
2 months 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
11 months PSA test 1/21/10 result 0.004
14 months PSA test 4/19/10 result 0.005


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 6/23/2010 6:38 PM (GMT -6)   
This is sad situation and I am so glad you are reaching out to the friends here at HW. There have already been great responses so the only thing I would like to ad is to try as hard as you can to remain positive. Please keep us posted on your journey because we all care more than you could imagine.

peace and love
dale
My PSA at diagnosis was 16.3
age 47 (current)

http://www.caringbridge.org/visit/dalechildress

My gleason score from prostate was 4+5=9 and from the lymph nodes (3 positive) was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11

PSA July 24th, 2008 is 0.04
PSA Dec 16th, 2008 is .016
PSA Mar 30th, 2009 is .02
PSA July 28th 2009 is .01
PSA OCt 15th 2009 is .11
PSA Jan 15th 2010 is .13
PSA April 16th of 2010 is .16
Testosterone keeps rising, the current number is 156, up from 57 in May

T level dropped to 37 Mar 30th, 2009
cancer in 4 of 6 cores
92%
80%
37%
28%


Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 6/23/2010 9:02 PM (GMT -6)   
55, I'm sorry to read of your situation. I ehco the things that have been said above.

As I understand it, if you have pain, and appropriate medication, you will NOT become addicted to the pain killers.

Also, I understand you need far less IF you take a pain killer early, before the pain really runs away, and IF you keep on top of the pain.

While Steve's skillet has its attractions, may I suggest that before such drastic action that you confront him with his being a testostrone cowboy rejecting pain meds may serve some macho need, his pain is also your pain, and his hurting hurts you in two ways. One, it is painful knowing he is in pain, and two, and a biggie, every minute he is in pain he doesn't need to be is a minute your relationship with him is being needlessly short circuited --- no walks, no talks, no hugs, no normal life, whatever that might be at that moment. His price, is your price as well.

Then, if this line of compassionate reasoning doesn't work you can think about making Steve's skillet plan B.

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
From "knock out" to wake up in recovery less than two hours.  Actual surgery 70 minutes
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
 
Oct 1st 09 -- dry at night, during day some stress issues.
Oct 31st padless 24/7 
 
First post op PSA Sept 09  less than 0.02
PSA on Oct 23 test again less than 0.02
PSA on Jan 8 less than 0.02
PSA on April 9 less than 0.02 
 
  


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 6/24/2010 6:28 AM (GMT -6)   
55, I too am the wife of a PCa guy but we have been blessed with NED (no evidence of disease) since his surgery in March 2008 so I cannot comment on the medical side of your husband's situation.

This is what I would suggest in terms of getting other opinions: I understand that access to 'experts' is difficult for you due to physical (location) and financial limitations. If you can't get to an expert, perhaps you can get an expert to come to you ... via telephone. Is it possible to gather your husband's information (test results, etc.) and contact the closest cancer center of excellence to see if they would review the information and have a phone consult with you? I live in the New York City metro area and have known of several people who spoke with or met a specialist from Memorial Sloan Kettering. Treatment can likely be administered close to home with the specialist overseeing and guiding the local facility. Just a thought - don't know if this is possible for you.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (solitary focus of extraprostatic extension). Perineural tumor infiltration present. Apex margin, bladder neck and SVs 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, March 2010 0.0. Next PSA in 6 months. Thank you God!


DanielleS
Regular Member


Date Joined Jul 2007
Total Posts : 57
   Posted 6/27/2010 7:38 PM (GMT -6)   
A great site for support for us wives/partners - we would love to have you join us:  http://www.ladies-prostate-forum.org/ladies/index.php?sid=76dce5b891b75d5a1e74310e33a8ffee
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