Reality sinking in

Reality sinking in

was diagnosed with prostate cancer last year at the age of 49. one week after biopsy confined malignant cancer and an aggressive strain the did a radical robotic prostatectomy. It all happened so fast. Its been almost one year to the day and now i wonder if there were other option. Still have ED, bladder control and orgasm problems. Tried to start a relationship recently but can feel partner pulling away because of my inability to perform and a scrip of viagra is 300$+. its it best to just face reality that sexual intimacy is a thing of the past that is tough considering that usually means no relationships of a romantic nature?! and is 49 young for prostate cancer?

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  • Welcome to the group. Sorry that you are here, but hopefully you can get some answers. Sorry that you are having all these issues. Please not that sometimes it can take up to three years for things to fully work down there. There are other things you can use instead of viagra, such as Trimix ( a shot), and vacuum pumps.

    I had surgery and afterwards things were slowly getting back to normal, that is until I started hormonal therapy. Now Mr. Happy is Mr. Sleepy. While I wish it was otherwise, I rather be where I am now than if I had no treatment. Yes, without treatment things down there would still work. But just for a while. Sooner or later the cancer would start taking things away, ending with life. Like you I have an agressive strand (Stage 4 T3N1, Ductal). While not as young as you (58) I felt that I was two young. Hopefully both of us can have decades and decades to enjoy.

  • thank you

  • All I can say is, you will not believe how many men are in the same boat with you. It is uncanny how many men (all ages) are found to have PC. Some thing must be going on.....

    Good luck!

  • thank you guys the biggest problem was getting depressed and feeling alone in this so right know it helps to know other guys in the same boat thank you so much for replying

  • Hi there,

    Rest assured that now you have found this group YOU ARE NOT ALONE

    There's a great bunch of guys willing to help you come to terms with things and answer each and every question you may have.

    Even with ED there lots of options other than viagra. As a gay man I've met guys that use penile injections or pump-up shaft implants.

    While I expect that neither may appeal at present and lack the spontaneity of your pre-diagnosis erections, they DO work and the guys I talked to said it was good to see "the old bugger" on his way up again :-)

    There is no reason why you shouldn't be able to have meaningful and long lasting relationships. It may just take more time and understanding from your prospective partner than you or they have been used to in the past.

    On the other hand you have been given life saving surgery and that has to be better than the alternative. Regarding incontinence, if in the final analysis the Kegel exercises prove ineffective an AUS Implant will definitely help.

    Good luck for the future Roland J UK

  • thank you

  • CajunDir,these gentlemen are here to help.This info will be priceless to you.

  • I am two and a half years out from surgery and still have some ED and incontinence issues but note a gradual continued improvement. When I first got diagnosed, my initial reaction was not "O God, I might die!" but "O God, I won't ever have sex again." That has not been true--but you are right that it's a challenge. While there is certainly the tendency on the part of many to pull back, my experience and the stories of other men tell me that there are partners who embrace a sexuality judged by more than just maximum penis mechanics. They may not always be easy to find, but I wouldn't give up hope quite yet.

    This whole thing can be a long haul--and starting at 49 doesn't make it easier, but I wish you the best and am glad you found this group.

  • Give yourself more time. Eventually things will get better. Everybody is different. Keep up with your Kegel exercises. They do help.

  • Facebook has a prostate cancer under 50 page/group

  • I was buying generic Viagra from India and having pretty good luck with it. But my last trip to the urologist, he told me that I could get sildenafil citrate, generic Viagra, if I had pulmonary hypertension, and did I feel like I maybe had pulmonary hypertension? I agreed that maybe I did, and he wrote a prescription for it. 20 mg instead of 100 mg, but I can take 5 at once. The prescription was for 90 pills and I have 6 refills, so I can be active for quite a while. The neat part is that while my drug plan wouldn't include it, because, I assume, they don't want to seem like they're encouraging folking, I went to goodRX and got the prescription filled at Kroger for 45 dollars. For 90 pills. Talk to your doctor about it. Sexual intimacy doesn't have to be a thing of the past, but you sure have to have a partner willing to go outside the missionary norms.

  • wow thx ill look into it yes the prescriptions for ED are way to expensive but Ill talk to my Gen Practitioner , kind quit seeing my urologist because my PSA is undetectable and hes a great doctor but at this point it just a "how are doing" and"oh thats normal" visits

  • Talk to your doctor. My urologist provided me with a prescription for tadalafil (Cialis) 10 mg and the name of a local compounding pharmacy. 30 tablets = $50

  • a) You really should have gotten better counselling. That's your doctor's fault, not yours.

    Yes, 49 is young, but you're not the first, and won't be the last.

    b) A booklist on sex and prostate cancer:

    "Saving Your Sex Life: A Guide for Men with Prostate Cancer" --

    . . . John P. Hulhall, MD

    "Making Love Again: Hope for Couples Facing Loss of Sexual Intimacy"

    . . . Virginia and Keith Laken

    "Androgen Deprivation Therapy: An essential guide for prostate cancer patients and their loved ones" (2014) --

    . . . by RJ Wassersug, L.M. Walker, and J.W. Robinson.

    "Prostate Cancer and the Man You Love: Supporting and Caring for Your Partner"

    . . . Anne Katz, RN, PhD

    "Intimacy with Impotence: The Couple's Guide to Better Sex After Prostate Disease"

    . . . Ralph Alterowitz & Barbara Alterowitz

    "Guide to Getting It On"

    . . . Paul Joannides

    d) I _urge_ you to get a prescription for one of the injectable drugs or mixtures -- Caverject (= prostaglandin), bi-mix (various formulations), or tri-mix (various formulations).

    Injections work for most men, and will give you a solid erection that will last for half an hour, to an hour and a half, depending on dose. There's a 5-10 minute wait between "injection" and "erection". So it's not completely "spontaneous sex". My wife says, if a woman can't wait that long, forget about her and find someone else.

    Drug-aided erections continue until the drug wears off. You won't go flabby after you have an orgasm. This makes some couples very happy.

    Finding the right drug, and the right dose, can take a while. You should start with a really low dose, and slowly increase it until you're satisfied. You'll need a doctor to prescribe them, and to train you in how to inject them. Mulhall's book (in the list, above) has more information.

    You may find that, eventually, you respond to Viagra or other oral drugs. But until then, injections can be _very_ useful.

    I've been using bi-mix for 9 years. I use a 31-gauge needle, and an auto-injector, and the "pain" is between a pinprick, and a mosquito bite.

    e) You should also look into using a VED -- "vacuum erection device" or "penis pump". IMHO, they're not as good as injections, but will do the job in a pinch. There are a bunch available, from really cheap ($20 at AdamAndEve.com ) to really expensive. I'd suggest starting cheap.

    Keep in touch. Nobody in your situation should be without some kind of counselling or support. Prostate cancer does nasty things to a man's self-esteem, and it's worse when you're young.

    . Charles

  • am looking into penis pump and when i did try Viagra (first scrip had discount coupon) i got the worst headache of my life , but this is what i needed options, support and information...thank you so much

  • I got intense head headaches from Viagra too

  • these these injections are extremely expensive the most people can't afford it

  • >>>

    these these injections are extremely expensive the most people can't afford it

    >>>

    I can buy 10 mL of bi-mix, from a compounding pharmacy, for about $100 Cdn ($75 US). That's enough for 50 injections. I use standard "diabetic syringes" (0.3 mL / 31 gauge, 8mm needles), which cost about $0.40 each.

    . . . So my cost is about $2 US per injection.

    If you buy pre-loaded syringes, you will pay much more. If you listen to the advice on bottles of Caverject:

    . . . "After filling the syringe, discard the unused mixture",

    you will be wasting 90% of the drug. Put the bottle in the fridge, it will last for a few months.

    . Charles

  • I need 30ml to inject for full function. That Translates into 3 erections per 100ml bottle. COST PROHIBITED. I have not had sex in over 5 years. As soon as a potential date learns of my penile dysfuction... the make nice starts and the the phone calls cease to be returned... Sadly so

  • 30 mL ???? That's more than 1 ounce ! I've never heard of anyone using such a large dose.

    If you mean "30 _units_", that's 0.30 mL. So you'd get 30 shots from a 10 mL bottle -- around $3 per shot.

    I sympathize with you about "when they hear that, they walk away." I'm lucky to be in a stable (and supportive) relationship. If all this had happened to me in my 40's, rather than in my 60's, I would have taken it _really_ hard.

    . Charles

  • Is all I know, is that I get 3 erections per bottle. I remember holding the syringe pushing the plunger to the 30 mark .. I had a 100ml bottle, I believe. The bottle was small enough to fit in the palm of your hand. Dr Cohen gave me a coupon to buy it at a discount off from a Pharmacy located on Pico Blvd, LA, for $150.00-175.00 a bottle. PLUS the syringe. I could use 25ml which works but not as long

  • I was 49 also when diagnosed, gleason 7. Back in 2003 did the manual RRP; had positive margins and have been looking for treatments since. [4 trials, robotic salvage surgery, positive margins again.] Look into Tri-mix. I've had good results with that, and zero response from any of the pills.

  • sounds like mine 49, qleason 7, pos margins, but ill have to google Tri-Mix, salvage surgery...but this is what i need so badly i didnt know anyone friend or family who had every had cancer , or specifically prostate to talk to with some common sense input thx again

  • Here are a few thoughts about your situation.

    Yes, 49 is young to be diagnosed with prostate cancer. If you're diagnosed at that age and with an aggressive condition, then it's likely a killer. So it's good that it was caught early. Hopefully, it's now out and gone.

    ED is a very common side effect of treatment, and not just of surgery. I was treated with radiation. Initially, I was fine after treatment, but over a period of years my potency declined to the point that conventional intercourse became impossible. I have read that 90% of all men treated for PCa have at least some potency problems afterward. It's possible that you would have done better with a different treatment or a different surgeon, but it's also possible that you wouldn't. The key question now is, did the surgery work? Let's hope that it did.

    Generic Viagra and Levitra are available from India at prices that are probably under $2 per pill. Years ago I bought generic Levitra in 20 mg pills (that's the high dose for Levitra) on sale for a dollar per pill. But, as others have said, there are other things like injections and pumps that can be tried. I would not try a penile implant at this time. I have heard that it's an irreversible procedure.

    So what should you do now about sexual intimacy? The first thing I would argue is that most women do NOT have orgasms as a result of intercourse. The easiest way for them to have orgasms is as a result of oral sex. I believe that most women will choose a guy who is expert at oral sex every time over a guy with a big hard-on and no understanding of how to take care of a woman. So - study this. Think about how to please a woman. Learn about how to do it better from every single experience. Read books written by women. I think you'll find that as you become more expert you'll not only learn to give a woman a real thrill, you'll get a real thrill from it yourself, and you'll inspire her to learn how best to please you too.

    Sexual intimacy is complex. Intercourse is one aspect of it, but only one and not necessarily, I think, the most important one. Great sex is a physical and psychological relationship between two partners who care about each other, aim to please each other, and derive satisfaction from pleasing each other.

    That's my belief and that's my experience.

    Best of luck.

    Alan

  • thanks so much this is helpful

  • That's excellent advice and as a woman I can tell you that it's true.

  • This is David's wife here with his permission....I could not help but reply to your plaintive post. David reads posts on here with me quite often. David had a similar story (age 52), aggressive cancer, robotic prostate removal. Because of previous scar tissue down there (multiple hernia surgeries) that complicated surgery, his function did not return. Please see his other posts here about that, including using the shots, pills, etc... I want to encourage you that romantic relationships are still quite possible. Tactile intimacy is so important, and if your woman can adjust to the notion of your using sexual toys, you may find that things take a nice new direction in the bedroom. If she has not used them, encourage her to explore on her own, and then introduce them between you. Clitoral stimulators do not even look like penises, so it becomes a brand new plaything - not a substitute for you. I see so many posts here about restoring penile function, but I wanted to add a woman's response, that mind-blowing orgasms DO NOT require it. And, the closing of your post said that romantic relationships are not possible... I want to let you know that yes, yes, yes! - you can have that romantic relationship with physical intimacy, and give you some hope. I do, of course, hope that you regain function, but no woman I know would reject a man for that, particularly an affectionate and inventive one :-)

  • EXCELLANT RESPONSE, DAVID'S WIFE!!!!!!!!!!!!!!

  • (to u and David) thank you so much for honest and candid advice, i was experiencing extreme pain when i did achieve orgasm they had removed the seminal vesicals so Dr. said it was scar tissue and to be honest ive always been more about pleasing the other person guess its more the mental part it just all changed so fast and it can effect your life in so many ways you didnt anticipate

  • Cajun, like you, I was relatively young when diagnosed (52) now age 76, so I have an idea of what you are going through. The #1 thing you have to do is make sure you are doing everything that YOUR doctors are recommending. I have learned from experience that trying the many "easy" options such as diet and "health" store remedies and "online crap" do nothing but waste time, money, and your life. If possible seek out a Prostate Cancer Support group in your area and get involved. It can and will help both your mental and physical health as you will find comfort, support AND valuable information that will help you as time goes on. I know it sounds trite, but there is much more to relationships than sex, and even more than one way to have sexual gratification both for you and your partner. In addition, an option for ED is a penial implant. Good luck and hang in there buddy!

  • thank you

  • Welcome fellow Rush fan!

    I was Dx at 50, seven years ago. If I had to do it all over again, I would have pushed for the RP, followed by some sort of chemo. I couldn't avoid the ED either way I believe. ADT, about does you in, especially when it goes full time. Radiation rips up your innards, with side effects years later. So, if I had to do it again, I'd go your route. IMHO

    Joe

  • thanks (yes im a Rush-a-holic seen them nine times lol) that helps alot because it happened so fast three weeks from first high psa to pos biopsy to surgery, that im now wondering if not getting a second opinion or trying chemo was a mistake thx

  • Sorry to hear of your journey. I did want to comment on on of the things you mentioned in your post, "It's been almost one year to the day and now I wonder if there were other options.". Please do not dwell on what was. In IMHO that is a road to frustration. Put your energy into trying a way to ameliorate the problem. Wishing you the best.

    Marty

  • thx sir

  • you right frustration i can see is a road i end up on every time and its no fun and it gets worse, thx

  • There are other options as Viagra did not help me. There is the Tri Mix injections, Muse, the pump and an implant. While I only used the first three, the Muse worked the best, best of luck.

  • Hey, sorry to hear it. I got diagnosed at 44, I'm 50 now. I talked with several doctors, and several men who'd had surgery, and chose RP. I had some ed issuse that got better over time, and still have problems with incontinence. I also had painful orgasms for awhile, but they went away.

    It's easy to wonder if you should have done something different, but you treated your CANCER. Give it time, do your kegels, keep reading these posts and take care of yourself.

  • i fortunately got over my incontinence in just a few weeks never did kegels was just getting really bummed out thing relationships were over, but really i just had no support or anyone to discuss these things with so your support helps alot, you take care too and thanks again

  • can prostate cancer had prostate cancer when I was 53, just a few years older than you. I have not had sex for a date in over 5 years.

  • If Viagra gives you headaches but worjs for intercourse, try the others - Cialis & Levitra. I found Viagra and Cialis gave me intolerable flushing,nasal congestion and gut discomfort but daily 5mg Cialis (20mg tablet cut in 4) is fine. Get the medicine from a Canadian online pharmacy.

    With daily Cialis you're ready for sex at any time too so you get spontaneity back.

  • Another cancer forum had one lady who lost two husbands to PC, both at the age of 40. That's why so many oncologists are furious at the government's opposition to PSA/DRE screening.

  • cajunDIR, I would not dwell on whether the procedure you used to treat your PC was the right one or not. If there were one procedure that was so much better than all the rest, you would have naturally gravitated to that one. There is no such thing as the best procedure to treat PC. They all work equally well and they all have side effects. Maybe you felt like you got the bum's rush. The real question is, are you cancer free for now? I do not like to use the term cured. Too many men have a recurrence to say you are cured this early in the game. PSA testing is a must for most of the rest of your life. If you arrive at 79 years of age and still have an undetectable PSA (30 years post surgery) I think you would consider yourself cured of PC. I know that being cured of PC is heresy to some on this forum. At least with surgery, there is no prostate for cancer to come back in. It is a question of whether it spread somewhere else. That is why we monitor PSA. So, please do not beat yourself up over whether you did the right thing. You did by getting treatment.

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