starting new life chapter

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

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

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.

C^Cedar
ICTHUS!

       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  

  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!!!

Sending warm thoughts and gentle hugs to you both.

In Friendship ~ Lee & Buddy

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

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.

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.

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!!!)

Great news keep those low or non-detectable PSA tests coming.

Norskie

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 (:

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.