Am I pretty much doomed to wearing diapers for the rest of my life?

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Hello, I’m generally a pretty healthy 63 year old. just found out that I have prostate cancer from my GP. I see the specialist next week. I’d like to be armed with information before talking to him. I moved to New Zealand from NYC 23 years ago where most use the public system, but if one has insurance or a lot of money private is available. 

 My biopsy read 2 (out of 12 cores) both with a 3+4 Gleason score.  My PSA has been at 3.9 and 3.7. I have no family history of cancer. (Indeed most live fairly long – my mom a smoker until 93 live to 94,; my Dad also a smoker, who was 68 when I was born, lived to 80, and his sister 101.)

My question is: am I pretty much doomed to wearing diapers for the rest of my life with normal treatment? A friend, who also has PC (with slightly worse Gleason readings) insists that incontinence and impotency are almost inevitable. He’s been to support group where 18 out of 20 were still incontinent…though it could be a skewed group since the ones happy with treatment probably aren’t there.  He won’t get treatment and is using Active Surveillance, a lot of exercise and a strict diet.

The publicly available treatment here in NZ are radiation and surgery. Brachytherapy may have recently been made available publicly, but I’m not sure. Nanoknife surgery is available privately.

I'm pretty active. I exercise every day and go tot the gym in early retirement. Leakage could put a big damper on my life. Any suggestions?

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  • Posted

    Hi,

    Gleeson 4+5 and a start PSA so high you'd think it a misprint, now 16 after three years of experimental oral drugs + quarterly hormone injection. No handy tips about impotence, I'm afraid but incontinence fixed by a TURP (TransUrethral Resection of Prostate) and peeing still OK now, three years later. TURP is a reaming out of the swollen prostate bits intruding on the urethra. Sounds horrendous (well, it did to me!) but in practice I opted for general anaesthetic and so so knew nothing about it. A couple of days in hospital, with catheter in place from the operation then SLUUUUURRRRRP catheter removed and went home.

    Best of luck

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  • Posted

    Hi Brad97862

    I am 75, gleeson 9. Grade Tb3.i have had ADT and 39 sessions of radio therapy. Surgery was out of the question.

    Side effects from the ADT were savage with me,but not everyone is effected by ADT. I suggest that you take advice from your oncologist, if not happy seek another medical opinion. I have settled down , no further worried about the future, whatever will be will be. Take care...

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  • Posted

    You may find that you won't need any treatment. Further scans and regular PSA monitoring may reveal that. like me. you have the less virulent form of cancer. I have Gleason 3+3, PSA hovering around 8 and have had no treatment for many years and I'm only monitored yearly now. It's perfectly possible to live with Prostate Cancer, but if it's the dangerous type you may find you have to have the life-saving surgery that has the worst side effects! Take it step by step. Our bodies and our mental attitudes vary so much, you will need to form a good partnership with your doctors to make wise decisions based on the specific information about your individual condition. The good thing is that you have early detection. Try not to over-anticipate.

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  • Posted

    Well I was treated for Prostrate cancer about 2.5 years ago and the PSA tests following treating hormone and radio therapy treatment have indicated that I am clear. The readings have been so low as to be pretty well zero with the last one less than a month ago and now on a six or twelve month test schedule.

    Dear Brad I have never been incontinent following treatment for prostrate cancer and can usually go right through the night without having to get up to use the toilet. I'm a fit 76yrs old and with one of those tablets can easily get a decent erection. Hope that helps you. Cheers Richard

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  • Posted

    Hi Brad, if my book "How I Got Well After I Quit Listening To Doctors of Western Medicine" ( by Herbal AL) could help- you can find it online. Good luck 

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  • Posted

    Hey Brad,

    Just make sure that you are dealing with a specialist in the field of prostate cancer. Not all of them have the right answers for the proper treatments. Lets see if this specialist orders either a PSMA, Axumin, or C11Choline PET scan first, then a 3T MRI. You need to sort all this out slowly. Don't jump to conclusions or a treatment plan too fast. Let us know what the doc says after your next visit.

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  • Posted

    Brad, i am 75, gleeson 9. I now live in Vietnam from Australia. Recent test results have my PSA at <.2. Good but my tostesterone has spiked from <.4 to 13.6. I send my results thru to Oz who show concern. Cancer treatment is practically non existent here so soon i will need to return to have a full checkup and obtain my last 6 monthly Diptherline injection due January 1st 2019. The spike in tostesterone level , we shall see.

    Cheers

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  • Posted

    hi there, I am not a man so don't have personal experience, but I am a radiotherapist, and I can say that the majority of my prostate cancer patients are not incontinent. a lot experience nocturia ( getting up at night to pee), but post treatment most go on to live a normal life. a lot of the long term problems depend where you are to start with, for example, if you are 87, have poor flow, the start of incontinence and get up 4-5 times a night before you start treatment, you are more likely to have long term issues than a fit, healthy 55 year old who has treatment. If you do go for radiotherapy, one thing I will say id follow the instructions given to you by your therapists! the things we tell you to do are actually to reduce your risk of side effects.

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  • Posted

    Hello, Brad. Gene here from USA....

    I’m 65 and had similar concerns as I reacted to the cancer diagnosis last year. My Gleason was 4+4.  Certainly, I wanted the cancer treated /eradicated and after much review and discussion with physicians, prostrate cancer survivors and others, I determined to have a robotic surgery to remove my prostate at the end of November 2017. I was/am concerned about incontinence and sexual function.  Eight months later, I have an occasional drip and my urologist assures me this will eventually go away, likely in the next few months.  I had nerve-sparing surgery, but have not regained sexual function yet.  Again, the urologist, who has performed nearly 1,000 surgeries, is confident i’ll Get closer to normal soon.  I don’t know, and I really haven’t pushed it much.  I’ve tried to focus on the continence recovery first.  So, I am sure others will have dramatically different stories — prompt and successful recoveries or total disasters.  As for me, I am not facing the reality of wearing a diaper until I die.  I dowear a vey thin pad in case I leak but that’s not happening with any frequency.  My PSA is being checked every 6 months and the latest report shows a PSA level of 0.00. Mission accomplished! I’m cancer free and I have learned to live comfortably without my prostate. I wish you the best.  This cancer can be beat before it wreaks havoc elsewhere in your body.  My strategy isn’t novel: prayers, family support, an excellent urologist, and an optimistic outlook.  Let’s keep in touch. Best wishes.  Gene in Des Moines, Iowa,USA.  

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    • Posted

      Thanks for all your encouraging replies! In the public system, the options are limited on procedures and choosing a doctor to perform the operation, but I'll see how limited this week when I talk to the oncologist. I gave up my insurance 13 years ago (when it doubled in price when I turned 50). The public system has been very good to me - e.g. providing very good elective sinus surgery and foot care. (About 75% use the public system exclusively here)...and at the very least I saved enough money by not having the top up insurance for 13 years (provided at a discount" by the university union) here to go private if I need to. I went private for the biopsy in order to get it a month or two sooner, but surgery will likely be pushing it. 

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  • Posted

    Hi Brad,

    may I suggest that you look up Ben Ong’s web site . It’s a source of excellent information and also points out many misconceptions and untruths. He has a very good book on the subject, and I’ve found his supplements have worked well for me. I changed my diet and lifestyle 5 years ago after a diagnosis with a 3+3 Gleason and I feel great.

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  • Posted

    I am 58 years old and had my prostate removed 2 years ago. Incontinence was not an issue at all. Sexual function was and is an issue but I have not gone without sex. Do a lot of research get all of the information you can from second and third opinions as to what option you feel is best for you. I am not unhappy with my decision and those who love me are not unhappy with the decision also. I believe the odds are greatly in your favor that you will be in control of your countenance. I don't know what that 18 out of 20 odds came from but that is greatly distorted. I wore a pad a couple of weeks after the procedure and been weaned myself off of them for good. And you know what? It wasn't the worst thing in the whole world to wear a pad I discovered it wasn't a nightmare it was not embarrassing. Even though the thought of it before I had the operation sounded nightmarish. Good luck in your Quest 4 information for your decision making process

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  • Posted

    Hi

    Gleeson 9 in Dec 2010 down graded to 8 following surgical removal and biopsy.  2011 course of 39 sessions of radiotherapy and two years of Zoladex implants.  Absolutely no incontinence at all, in fact during the radiotherapy I had to have a full bladder.  During one session  I was told that my bladder was too full, so I would have to empty it and start the one hour procedure again, all were really impressed with my surgeon when I went to the loo and stopped mid stream.  The world is full of those who love to complain, listen to your doctors and get the %'s etc from them.  Hope this helps and best wishes for the future, because you do have one.

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  • Posted

    I had almost the same numbers that you have only my PSA was 8.0.

    I had surgery. Some cancer cells were left behind so I am currently undergoing salvage radiation therapy. I feel great and have overcome all incontinence. It was a recovery process which did not effect my lifestyle and took about 6 months post op.

    Everyone has a different experience. Do your research, seek a specialist. There are many options. Remain positive

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