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jmae_ca
New Member
Joined : Feb 2008
Posts : 10
Posted 2/28/2008 2:25 PM (GMT -8)

Hello all

I've also been reading the posts looking for something similiar to what my husband & I are going through.  (it's like it's happening to me too)

My 62 years young husband fainted at work & was sent to the hospital as a precaution; a visit to the family doctor was suggested.  The family doctor prescribed water pills, baby aspirin & a complete physical.   My husband had no symptoms & felt great after his 2nd hip replacement of Jun 07.  He is a pipefiter by trade.  

My husband went for the physical late Nov 07, PSA came back 54, gleason score 8. 

   

He went for an ultrasound, endoscopy, biopsy, colonoscopy, catscan, & a nuclear bone scan.   The results of these scans were compromised by his 2 artificial hips.

  

He had a radical prostatectomy & pelvic lymphadectomy surgery on Feb 11 08.

He has been resting at home since Feb 15, staples & drainage tube are out, but has one more week with the catheter.  The surgeon said his cancer was ready to EXPLODE & is pretty sure he got it all.  Gleason score should have been 9.  Doctor appointments will be weekly for a couple of months.  Then radiation/hormone treatments. 

He is still in a lot of pain, says he feels like he has been kicked by a horse.  We asked the doctor about sex & were told he's trying to save his life & that if in 1 -2 years he can get an erection - "good for you". 

I am hoping & praying I will get my husband back, healthy & continent.  The doctor is so postive about everything & it cheers him up for a couple of days, but I cannot find anything positive at all about prostate cancer treatment on the internet or anywhere.

It seems as if every doctor has his own ideas on the treatment of prostate cancer.  Is this disease as individual as the people it infects or just too many treatment options?  Is there not a "tried & true" treatment for recovery?  Our doctor said a lot of doctors wouldn't even operate on a PSA 54 Gleason 8 person.

This is an awful way to enter retirement age.  This is a wonderful place to vent.  And to know there are so many others sharing the same experience.

j mae in Toronto 

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biker90
Veteran Member
Joined : Nov 2006
Posts : 1465
Posted 2/28/2008 3:03 PM (GMT -8)
Hey J Mae,

Sorry you have to be here but please stay with us for information and support. We can get well together.

I take issue with your doctor's statement about if he can get an erection in 1 - 2 years - "good for you". It need not be that way at all. There are many things that we do to improve that situation. Even old guys like me still have an active sex life after prostate cancer treatment. Remember that doctors rarely have endured their treatments themselves and only can recommend what they know about. You can find as many opinions on ED treatement as there are doctors.

You are right about there being many different treatment options and no, there is not a single tried and true method that fits us all. We are all different. Cancer affects us differently and we endure treatment in different ways. That is why this forum is so valuable. You get to see what we chose to do about cancer and how we are recovering from it. There are several guys here that have nearly the same prognosis as you husband.

Please stay with us...

Jim
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Tony Crispino
Veteran Member
Joined : Dec 2006
Posts : 8160
Posted 2/28/2008 3:34 PM (GMT -8)
Hi ~  j mae_ca  & Loved Ones…   W elcome     to…    ~ HealingWell ~   and   A    “ Special ”    Warm Welcome   to   You !   Knowledge gives us POWER….   POWER takes away the fear.   ~      ~      ~      ~      ~      ~      ~      ~      ~      ~      ~      ~      ~   Click on the link just below for important information that will help you ~ help us!!   Welcome New Members ~ to HealingWell   The information (link) listed above is to help you get started on your journey. It is a journey best traveled with friends. Welcome ~ New Friend from all the members here... on HealingWell.com   v       bluebird ~   Moderator for Prostate Cancer Forum http://i206.photobucket.com/albums/bb179/mamabluebird1955/mamabluebirdWelcome.jpg   v       IdahoSurvivor ~   Moderator for Prostate Cancer Forum http://farm2.static.flickr.com/1160/1313099593_9f819e3ff8.jpg   v       TC-LasVegas ~   Moderator for Prostate Cancer Forum Post Edited (TC-LasVegas) : 2/28/2008 6:28:56 PM (GMT-7)
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Doting Daughter
Veteran Member
Joined : Aug 2007
Posts : 1064
Posted 2/28/2008 5:13 PM (GMT -8)
HI J Mae! Sorry that you have to be here, but it is so nice that you are able to come here to vent and share your concerns. We all have them. The most frustrating thing for me is that there is no if A then B with cancer. You will discover the more you read, the more confused you may get. However, you and your husband will have to read everything you can and take all the medical advice and move forward with whatever decision you guys decide to make.
I have also read that a lot of doctors would not perform surgery on someone with a high PSA, however, with that being said, I have also read arguments that they should. Personally, I think it is great that your doctor was willing to perform surgery. Hopefully he got the majority of the cancer out and the rest can be eliminated with radiation. That is my prayer for you. I think often times the doctors can forget how important a sex life is to a man, especially one who doesn't have symptoms..thinks life is great and feels healthy and then all of a sudden finds out he has cancer and may never have sex again. It has been devastating for my father. We all worried about the side effects in the beginning and have since began to concentrate on the disease. I should clarify...my mother, brother and I are more worried about the disease. My father still worries about the side effects. I guess it is to be expected considering he is the one that has to live with them.
The good news is that there are many treatment options. You might not find that on the internet, but you will find that people do well with treatment and often times live long lives. I wish you a wonderful retirement for you and your husband and many, many happy days together.

C
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Tony Crispino
Veteran Member
Joined : Dec 2006
Posts : 8160
Posted 2/29/2008 6:01 AM (GMT -8)
J Mae,
We welcome you here to Healingwell. Our site has many participants, some very close to your husbands numbers. Stay close and stay tuned. We hope now that your husbands PSA drops out completely. He may and probably is looking at hormone therapy next. I have lived that experience and can say I am doing well. Should you husband need any additional therapies there are many here with tips and experience that will be glad to lend that experience. Stay positive. And again Welcome!

Tony
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Cedar Chopper
Regular Member
Joined : Mar 2007
Posts : 432
Posted 2/29/2008 1:41 PM (GMT -8)
J Mae,

You can find a lot about overcoming erectile dysfunction in the index found in the Helpful Links thread at the top of the page.  Scroll down several posts for the complete index. 
On E.D., I recommend the threads started by Tamu and Swimom.

Personalizing your signature (while logged on click on "Control Panel" in top left of page and then click on "Edit Profile" and scroll down, enter your information and "submit.") will help others help you.
Any post-surgery biopsy information you can share in this signature will help us give you more relevant information.  As Jim, Tony, and D. Daughter said, there are many here (Some in Canada) that can give you so many helpful perspectives from personal experience and extensive research. 

Most radical prostatectomy patients overcome incontinence in 12 to 16 weeks (a very few sooner and a very few never).  At this point in your fight, I personally would walk a little more every day (yes, start now - with catheter) and drink a lot of water while the catheter is in to flush the system of anesthesia.  This RP surgery really saps the strength for several months - I think even more than hip replacement (but not as painful....).  Keep walking more and more and don't lift anything too heavy!

Yes, do vent here.  Ask anything. 
The women here are going to be especially helpful to you.
This is an informed and caring group.  You have found friends.


CCedar
ICTHUS!

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Mike A
Regular Member
Joined : Feb 2007
Posts : 213
Posted 3/1/2008 9:16 AM (GMT -8)
J Mae,
Sorry to have to welcome you here, but welcome you are. This forum is a wonderful site for information and support. You will find so many, at all stages of this insidious disease who are willing to help. Please do not hesitate to ask any questions at all. Believe me, we have seen it all. I can tell you that the support you are giving your husband means so much!
Best,
Mike
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bluebird
Veteran Member
Joined : May 2006
Posts : 2543
Posted 3/2/2008 6:06 PM (GMT -8)
       Hey ~ JMAE   & Loved Ones,   We’re glad you found all of us!!!      I know we can “all” make “ Your Journey” smoother ~ just by being here for you!    Thank you for reaching out!!!     You’ve just made your own journey a lot smoother.   There are a lot of Helping Hands here… and just by reaching out like you did ~ you will have a much easier time.   We’ve been where you are now…. Knowing you aren’t alone… makes a big difference in psyche and spirit.   We will always be here for you… This is truly a great forum!!! ~ You have joined! You are now part our forum family ~ a group of wonderful individuals who are so willing to share their journey with you!   Please take time to follow the link in your Welcome Message above… it will help to ease some of the unknowns…   It helps “all of us” ~ to help you ~ if we know where you are on your path. So ~ Please stay with us and take our hand when you need it!   Keep posting.... OKAY!!         KNOWLEDGE IS POWER... and POWER conquers fear     Buddy & I invite you to visit our personal thread “Our Journey”… listed in our signature below. Hoping our experience can help you over at least one stepping-stone on your journey.   http://i206.photobucket.com/albums/bb179/mamabluebird1955/Stepping-StonestoHealingWell.jpg   Our thoughts and prayers will be with you as you continue to move forward. Stay Close! In Friendship ~ Lee & Buddy  
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jmae_ca
New Member
Joined : Feb 2008
Posts : 10
Posted 3/5/2008 2:35 PM (GMT -8)
We've had another big dump of snow & had a disappointing day at the doctor's office. Catheter remains in for yet another WEEK (makes it 4) & back on the antibiotics. There was a couple of incidents of blood in the catheter bag a few days ago & the doctor knew. These trips to the hospital with all the waiting etc. seems to make poor hubby even more sore & tired. Until next Wednesday then.
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bluebird
Veteran Member
Joined : May 2006
Posts : 2543
Posted 3/5/2008 6:20 PM (GMT -8)
  tongue Hey ~ J Mae & Hubby,

Hang in there with the catheter (aka Mr. Hang).... he's allowing the area to heal and another week may be the best thing!  We had ours for 17 days and we feel strongly that this helped in our recovery to continence.  Thank you for adding a signature!!! It helps us and new readers to understand the path you are on.

Don't forget to take a donut pillow for those rides to and from in the car and great for sitting while waiting for the doctor.

Remember.... we are here for you so plan to stay close!!! yeah

Sending warm thoughts and gentle hugs to you both.

In Friendship ~ Lee & Buddy

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jmae_ca
New Member
Joined : Feb 2008
Posts : 10
Posted 4/11/2008 9:12 AM (GMT -8)
After a month of the catheter. We had no doctor's appointments for THREE WHOLE WEEKS!!!. Hubby began to feel wonderful, doing more & more by himself everyday. Very good bladder control (I only pee when I laugh). Well, we just got back from the doctor's office to learn his PSA is over 100 (doctor isn't concerned though, says he expected it). Maybe the pain in his buttocks is the cancer. Hormone therapy consists 2 pills everyday (estrogen & anti-estrogen) very expensive, but manageable. In 3 weeks he gets his first of 3 hormone injections, something called Lupron. An injection every 4 months. We almost had a cardiac when the pharmacist told us the price of this stuff!!! This Lupron is over $1500. a shot!!! And the doctor gave him the okay to go back to work next week. So many decisions to make as he is so close to retirement. How much does one change on this hormone therapy?
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myman
Veteran Member
Joined : Feb 2007
Posts : 1219
Posted 4/11/2008 3:53 PM (GMT -8)
Hi jmae,

My husband has been on Lupron since Sept. 06 - he gets a shot every 3 months. Although his PSA was not as high as your husbands, the cancer had metastasized to lymph nodes outside of the prostate bed prior to surgery, unknown to his surgeon. As a result his first post surgery PSA was 11.8. By the time he was put on Hormone Therapy his PSA had risen to 18.8. Side effects: fatigue, joint pain, hot flashes and headaches. That being said, he's determined to be as active as possible and manages quite well.
So, how much has he changed? I do see a change but not so much that he's a different person - thank goodness!
And yes, the shots are incredibly expensive - his (for whatever reason) are much higher than the figure you quoted! Maybe it's the facility or what Medicare & Insurance companies will bear.

I wish you both well and please continue to post here. We care.
Susan
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livinadream
Veteran Member
Joined : Apr 2008
Posts : 1382
Posted 4/11/2008 5:07 PM (GMT -8)
Prostate cancer or I should say any cancer is a family affair. Yes your husband is the one with the disease but you have been given the task of caregiver, which happens to be as important a role as the doctor. Learn all you can about the treatments and side effects, so you can be armed and not alarmed when something happens. I cannot speak about sex life as I am on Lupron which has rendered me impotent with no libido, however if possible try not to put much emphasis on sexual intercourse this early on. PC has a way of making a man question his manhood anyway, try hard to be a positive influence, smile often, laugh when you can, take walks, listen without judgement. A new chapter is being written in your lives and who knows it may be the best one yet.
welcome to HW
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jmae_ca
New Member
Joined : Feb 2008
Posts : 10
Posted 5/29/2008 3:45 AM (GMT -8)
Checking in - had a Happy Day yesterday. Husband's PSA is now "2". Doctor was very pleased. Looks like the hormone therapy is working. No more doctor's until Aug 22. Seriously considering going back to work.
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lawink
Veteran Member
Joined : Oct 2006
Posts : 621
Posted 5/29/2008 5:58 AM (GMT -8)
Hi jmae - thank you for sharing your and your hubby's story. Our men are close in age, height and weight . . . your PCa story is a bit more traumatic than ours, but it hitting right at retirement is also similar. . . Bob was diagnosed 2 years to the day that he had retired. . . . the blood conditions referred to in his signature were found the first year into retirement . . he really did feel like someone was out to get him, but attitude is everything and right now life is good.

Good luck in your journey . . .I had missed the first part of your story back in Feb . . .(perhaps because we were "snowbirding" in Arizona) . . . please keep us posted on your hubby's good progress. . . .our thoughts and prayers for a successful journey go with you.

;o) Linda & Bob
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anglophile
Regular Member
Joined : Apr 2008
Posts : 82
Posted 5/29/2008 6:08 AM (GMT -8)
jmae,

Sending wishes for a satisfying outcome in your situation.

Regarding ED and getting back to sex, I guess I am one of the lone wolves here, as I don't give it the priority that others do. The reason is, my wife and I have learned prior to this that we can have a very satisfying and strong relationship without it. She is disabled and we hadn't had sex in four years prior to my surgery (we just celebrated our 19th wedding anniversary). My priority is working on my continence and that's it.

You can take this with a grain of salt, but a strong marriage doesn't need sex to sustain itself. Since a 15-year-old might be reading this, I can't go into detail but there are other ways to "cuddle" and be close physically without actual intercourse.
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Doting Daughter
Veteran Member
Joined : Aug 2007
Posts : 1064
Posted 5/29/2008 7:29 AM (GMT -8)
Hi Jmae! Great news regarding your husbands PSA! I wanted to share that I saw my father this weekend for the first time since he completed his radiation a few weeks ago. He looked AMAZING!! He has been on Lupron for 5 months (I think) and you would NEVER know by looking at him or being around him. I awoke to falling branches outside my window one morning and looked out and he was on the roof trimming branches from a tree. (He scared me to death, but made me smile, because he is definitely back to himself). We also had a very intense game of softball in the front yard and he was making diving catches and knocking the ball out of the yard. He is every bit himself, minus the cancer I hope :-)
His libido is gone, and he has occasional hot flashes, but he has been tolerating the Lupron well and hopefully his PSA in a couple of months will be undetectable. Just wanted to share the good news, because I know how worrisome the HT can be and there is hope! Keep us posted and best wishes!

Doting
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jmae_ca
New Member
Joined : Feb 2008
Posts : 10
Posted 8/25/2008 6:28 AM (GMT -8)
Checking in - Happy Times. Husband's PSA is now "0.02". Doctor was very pleased. Looks like the hormone therapy is working. No more doctor's until Dec 22. Told to lose weight (ugh!!!)
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Doting Daughter
Veteran Member
Joined : Aug 2007
Posts : 1064
Posted 8/25/2008 7:02 AM (GMT -8)
Great news!!! Congrats!!!! Thanks for checking back in and sharing the good news!!
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norskie
Regular Member
Joined : Jan 2007
Posts : 376
Posted 8/25/2008 9:58 AM (GMT -8)
Great news keep those low or non-detectable PSA tests coming.

Norskie
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jmae_ca
New Member
Joined : Feb 2008
Posts : 10
Posted 1/5/2009 5:41 AM (GMT -8)
Kinda wondering what's next? Doctor is very concerned about husband's weight, took him off of the pills to see if they are causing weight gain, got last of 4 Lupron injections.
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zufus
Veteran Member
Joined : Dec 2008
Posts : 3149
Posted 1/5/2009 12:03 PM (GMT -8)
Hey this lousy disease will bring you two closer together (a plus in the negatives of this), probably bring you closer to God if you will stop and smell the roses, and you might meet some nice people who had to join this club along lifes journey, we didn't want to be here and didn't like the choices, and saw the chaos of the PCa and by reading everyones journey you will see it is crazier than watching an edition of the Twilight Zone.

BUT: DO YOU HAVE HOPE....YES! Support is a beautiful way to start on this, not only herein but local PCa support groups (fabulous way to meet others, see issues, get answers and an education) try www.UStoo.org for a local group or maybe some others. Get a newsletter like www.paactusa.org or by Meyers or others.

Get the book A Primer on Prostate Cancer-Dr. Strum (onco-doc who deserves A+ for his book), hey I got maybe 10 books at home, this one blew those away as to total information from every angle. Hey I got 8 opinions and it was necessary cause of my riduculous stats and some docs were saying the total opposite of others, so who is correct, I am glad I put my self through that, learned a ton, and knew what I was fighting to more reasonable level. I am here and doing pretty darn well for a guy who had these stats:

Dx-2002 Age 52 -bpsa 46.7 (close to your number) , 12 of 12 biospies all positive 75=95% cancerous (Clue-the gland is loaded with cancer, no negative cores seen); Gleason scores found 7,8,9's about equally on both sides of gland (tumored to the max is my guess) I had totally urinary blockage and never had a psa and didn't know squat about PCa in 2002. Got Dr. Strums book, tapes, internet, other books, forums, support groups and protocols to consider......been kickin back and hopefully taken names against PCa...and sayin.....the F-word towards it ever since(per se-not literally-hey notice I have humor alot), hey I can lose this battle easily....but I ain't done with it yet either. Been 7 yrs. almost now, yeah not looking cured, looking decent considering where I started.

Todays update might show you some hope, I went off all drugs in the last couple years because psa stabilized for long time 1-2 yrs., and I wanted to know how siginificant is the PCa I continue to fight after my modalities/protocols that I did choose, psa went up from April till November, I resumed my drug of choice (no comment on what it is-people herein know). Psa in April .47 by Nov 1st 1.46 (that is bad for doubling times), mid Nov. resumed my drug got tested in Nov. 26th couple weeks of drug use= new psa .65
Got tested today for psa and will reveal those numbers after I get them. I have results prior on the same drug working well for me, I could care less what other docs think of it.

Neutrondbob-also aka-zufus (Like Forest Gump-yeah I'm dumb like him but he did well at everything he tried...that is a good enough role model for me)
PCa- warrior 7yrs. so far HEY I'A FEELING MAVERICKY TODAY (:

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Todd1963
Veteran Member
Joined : Oct 2008
Posts : 3563
Posted 1/6/2009 9:19 AM (GMT -8)
Hey jmae_ca and husband
Zufus is insane-lol- I really like the guy. Talk about a funny guy. I think humor and his positive attitude are the two main weapons in his arsenal that keep him doing so well. I gained a few lbs. on the lupron myself. My wieght leveled off. Lupron also executed my libido. I use viagra successfully. Its not always easy and I have to use a lot of mind over matter but my wife and I are able to share moments once a week. I have a clip on fan that I place on the headboard or the night stand that blows lightly in my face. It helps me deal with the hotflashes. I am a pipefitter by trade and continue to work. My wife and I will not let this pain in the butt slow us down. We do a lot of recreation. Snowboarding and snowmobiling are at the top of the list at this time of year. I talk about my cancer a lot. I tell everyone about it because I am not the stereotypical Pca case. I tell guys 35 yrs old to get a psa test done if for no other reason to have a baseline. "Live long and prosper" Todd
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jmae_ca
New Member
Joined : Feb 2008
Posts : 10
Posted 3/7/2009 5:54 AM (GMT -8)
Husband's PSA rose alarmingly to 7.? & doctor wants another test done right away. Told to start taking Bicalutamide tablets & apo-tamox citra tablets again. Rec'd another prescription for Lupron to start Apr 3/09. We booked a 2 week vacation for March & the doctor said we should consider canceling. NFW!!! missed the trip last year because of the surgery, have to go this year (little granddaughter's 2nd birthday!!!). Lost about 10 lbs., but hubby doesn't feel well at all. (perhaps even maybe a little bit depressed). Sure hope the spring weather cheers him up. Hot flashes are sometimes severe, especially thru the night.
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Purgatory
Elite Member
Joined : Oct 2008
Posts : 25448
Posted 3/7/2009 6:06 AM (GMT -8)
Sorry your husband (and you) are still having a hard go at it. I am not suggesting that you aren't compliant to your drs, but I would say, go on the trip, you both deserve and need it. I am certain your husband would be depressed after all this has gone on, and may be clinically depressed. A lot of drs and patients don't compensate for the mental health side of their Prostate cancer. No shame in talking to your GP or other dr. about something mild for the depression. Reading some of your earliest posts, yes, its true, some dr. would not have suggested a operation for PSA and Gleason that high? After his surgery, what was his tumor graded as? I wish only the best for your husband, and for you.

David in SC
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