Please research and think carefully

I write as someone who regrets ever going near radiotherapy or a urologist because it has ruined my life and my sex life and left me with a pair of tit's and moles like worms coming out of funny places and it has not altered my symptoms one iota I am still numb and even in more pain than before and with a constant infection in bladder from the biopsy Oh and my bowels are ruined . In my opinion they jump too quickly without checking or listening to patient enough, in my humble opinion, my problems had nothing whatsoever to do with prostate Cancer and when you actually trust them too much and don't do research then it is recipe for disaster. But I bear much of the blame myself for trusting them too much without reading up on it enough or fully understanding the problems that I would face after.

Because you can live with a certain amount of problems without it being life threatening , because the side effects are bloody terrible for a man, if that is your only 59, to live with for the rest of your life as a fu....g Eunuch.

11 Replies

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  • By your bowels being ruined---do you mean that you were on an antibiotic which caused a lot of digestive problems? I was on an antibiotic called "Cipro" or Ciprofloxacin, which caused horrible digestive problems for me years ago. I finally bought some probiotics, and after taking them for a few months, things got straightened out.

    And I am a eunuch, by choice---the hormone therapy drugs didn't manage to lower my testosterone to the therapeutic level, so I chose to have my testicles removed, and I don't regret it for a second.

    At least I'm still alive. I do have some libido left, and some degree of erectile response, but I'm too fragile for sex, anyway, and to me, living is more important than sex.

    And if you have erectile problems, there are solutions; there are the ED drugs, then the vacuum pump, direct injection or penile suppositories, and finally the penile implant.

    You can mourn the loss of your sexual function, or you can actually actively do something about it with the above-mentioned treatments.

    Prostate cancer is life-changing, and our lives are never the same after we're diagnosed. But we must accept what we cannot change, and work to change whatever we can.

    And I get tired sometimes of fighting the prostate cancer, but somehow I find the strength within myself to keep going, to keep fighting.

    I'm sorry that you've had such problems with your doctors---I'm lucky to have wonderful doctors who are kind, gentle, considerate and professional. My doctors do everything that they can to make me as comfortable as possible.

    If you're not happy with your doctors, you can choose to see other doctors.

    In any event, I wish you the very best of luck, and hope that you can come to grips with your situation.

    CERICWIN

  • Researching an illness such as cancer of any kind by oneself can be both a positive AND a negative, especially when done on the internet. Unfortunately, especially in the case of Prostate Cancer, there are many supposedly "easy fixes" or "simple ways to cure" PC which only result in failure and or death. Prostate Cancer can be treated effectively IF caught and taken care of early. It's not gonna go away like a cold.

  • >>>

    But I bear much of the blame myself for trusting them too much without reading up on it enough or fully understanding the problems that I would face after.

    <<<

    I sympathize with your surprise.

    Lots of doctors don't like to talk about side-effects -- they'd rather treat first, and keep quiet until the patient (with ED, or incontinence, or no libido) says:

    . . . "What's wrong, Doc?"

    Without knowing your cancer history, and treatment history, it's impossible to say either:

    . . . "Yes, you could have avoided treatment if you had known more", or

    . . . "The treatment probably saved your life. Learn to live with the side-effects."

    There's no secret about sexual side-effects of prostate cancer treatment. Here's a booklist:

    inspire.com/groups/us-too-p...

    You might find it useful. ED is something we can often help.

    . Charles

  • Alex,

    Thank you for posting about your terrible treatment experience. I think people do need to be cautious and must investigate as much as they can.

    I'd like to speak to that particular issue for the benefit of others who can learn from your experience. Most of us have no scientific background and are poorly prepared to evaluate the proposals by doctors. If you are in that situation, and most of us are, here are some things you can do:

    1. Seek the best expert advice. In the U.S., the National Cancer Institute has prepared a list of "NCI Designated Cancer Centers" where they believe that outcome statistics are superior to those achieved by typical community cancer centers or private doctors. They are almost all teaching and research institutions where you'll find doctors who keep up with the science and don't just do what they were taught 20 years ago. See: cancer.gov/research/nci-rol... Britain, Canada, and I believe Australia also have "centers of excellence" for cancer treatment.

    2. Get second opinions. Cancer is serious. Every insurance policy I have heard of will pay for second opinions for life threatening diseases.

    3. Evaluate the doctor. We can't always tell how competent a doctor is but there are signs that we can recognize to help tell us how honest, caring, and committed he or she is. Does he listen when you ask questions and then answer what you asked, or does he brush off questions with glib answers? Does he spend time with you or does he rush you out the door to see the next patient? Does he make unrealistic claims like, 97% of my patients are cured, or hardly any had impotence (claims that I saw on the Prague proton beam treatment center website)? Does he pooh-pooh your concerns and tell you to trust him, everything will be okay? Does he "hard sell" his services, and rush you to make life changing decisions?

    Some doctors are in business just for the money, they go through the motions of treatment and don't really care how the treatment turns out. That's your problem not theirs. Look at the doctor the same way you'd look at an auto mechanic or a plumber. Trust your gut instincts and stay away from doctors who don't inspire confidence.

    - - -

    Finally, I'd like to address the issue of what to do if and when things go wrong. I'd like to believe that if I were tired, in pain, and confined to a wheelchair, I'd still try to reach out to life. I'd like to believe that I would still try to spend time talking to friends and family and taking an interest in their affairs. I'd like to believe that I would still try to enjoy good food, read interesting books, listen to music, and do all of the things that I like that I can still do.

    I know that's easy for me to say. I'm not in constant pain and not living in a wheelchair. I know that in reality I would have bad days when I wanted to lie down and die and bad, sleepless nights full of depression and anxiety. But if I still had some life left, I'd like to believe that I'd at least try hard to make something out of it and get something out of it and work at it every day that I could.

    I'm impotent as a result of my treatment and perhaps my age, but I try hard to maintain a loving, intimate, and physical relationship with my wife of 48 years. Intercourse is impossible for me but other forms of sex are still possible, and if I can't very often reach an orgasm, well, I can still enjoy what I can do for my wife and what she can do for me.

    We can't help feeling sorry for ourselves and we're going to be depressed at least some of the time but, if we try, I think we can still commit to life and find, to our surprise, that we can enjoy it.

    Best of luck.

    Alan

  • Than you Alan, and I'm glad you are managing, mine is a little bit more complicated because I had broke my back and ever since I had numbness in area at the back of my thigh and into area between my legs, but it never affected my sex life.

    I did tell the consultant before treatment, but because I was in a lot of pain from my spine in my neck and I've since been told that I have Cauda Aquinas syndrome, and something that I feel should have been told to me by my neurology surgical clinic after MRI.

    But here in the UK we stupidly rely on them to do the right thing, but sadly it too often got wrong, by these ever so professional Professional's.

    I now know why they would not put thing's in writing to me, after scan after scan and lie after lie, accusing me of falling so it's a bit more complicated and bloody annoying to say the least, because I know that it was so unnecessary, and if only I was more aware of their shenanigans when legal action is threatened, because only now does everything make sense in why they were denying so much for so long.

    Any way it is in the lap of the God's just what treatment you get, sadly our NHS seems to be run by them and they are having a good laugh, best wishes All

  • you are 100% right...with radiation you are trading the cancer you have now for a new one in 10 years...radiation will not cure PCa...10% of the cancer cells will survive and go on to become CRPC which is fatal....best treatment is 3 month on and off cycles of DES 1 mg...read the literature plenty of guys around after 18 years and no CRPC

  • gusgold wrote:

    > ...with radiation you are trading the cancer you have now for a new one in 10 years

    > ...radiation will not cure PCa...

    I think that sometimes radiation works and sometimes it doesn't. In my own case I'm now 13 years past radiation treatment for my Gleason 4+3 cancer and my PSA stays around 0.07. I do not have (not yet at least) any known secondary cancers.

    Personally, I think that whether it is better or worse than surgery depends a lot on the relative skill and commitment of the radiation oncologist and the surgeon. It also depends on the particular characteristics of the patient's cancer, and unfortunately, on luck.

    I always wish "best of luck" to everyone with cancer.

    Alan

  • Prostate Cancer is a journey. We all do it alone and it is different for everyone. I was 52 when I was diagnosed and it was symptoms that led me to my urologist. When after the digital exam, he told me he felt a firmness he did not like, I knew no second opinion was necessary. The biopsy only confirmed what we suspected. He then inundated me with information on all of the treatment options. I am a pilot for a major airline and as such, I am trained to deal with problems as they occur. There is no time to agonize over what to do, or ask why me. So, I humored my doctor and read all of the material. Two weeks later, I told him I wanted the surgery which is the decision I made immediately after he informed me that I had PC. If anything, my urologist was more concerned about my erectile function than I was as I was struggling to learn how to pee again. I have tried every gimmick known to man to try to resurrect my poor prick. No use beating a dead horse, I gave up after several years of trying. Nothing comes within a lightyear of feeling like a natural erection. Am I bitter? Hell no! I am just damn glad I am still alive with a PSA of not detectable. I am 5 years out from the surgery. I will not be comfortable until I get to 10 years out with a PSA still undetectable. Maybe then I will feel like I have beaten PC.

  • DHeberling wrote:

    > ... Am I bitter? Hell no! I am just damn glad I am still alive ...

    I think that's _exactly_ the attitude that all of us need to take. I think we have to make the most of the life we have, not pine for something we haven't got.

    Thanks.

    Alan

  • Well that's all well and good if the treatment you got was properly done, but there are many reasons why they jump the gun before all other reasons for possible readings were read properly and if the quality of life your left with is better than before. I have still the symptoms and pain in the same place and have done for many years and I don't believe that Cancer was my main problem for why have I same problems in the same area. Prostate Cancer does not always lead to death, this is what they want you to believe , and the word cancer frightens people into doing what they want to do, before looking at other possible reasons for readings.

  • I hear you Alex and I think I can understand.

    Many years ago I had pain in my knees from overuse injuries riding bikes. A surgeon offered to fix it with a simple operation that would almost certainly help and couldn't possibly hurt. Of course the pain was much worse after the operation and I was in pain and limped for 10 years. I hadn't been limping before the operation.

    Many of us only learn the hard way that not all doctors are competent and some just don't even seem to care. This is not just an NHS problem. It happens here in the States as well.

    Best of luck.

    Alan

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