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Devastated And Alone

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User

Posted 07 Oct 2021 at 21:33

Originally Posted by: Online Community Member

Unfortunately there doesn't seem to be any hope of normal sexual function after treatment - that's partly what I meant by a normal life. And of course there is a high likelihood of some degree of incontinence.

If you opt for surgery, then there is a chance that the surgeon may not be able to preserve the nerve bundles that control erections, this is perfectly true, but in the majority of cases, nerves on at least one side are preserved, and you will be able to have erections after surgery. Incontinence? Again a small percentage of men have long-term incontinence; the majority do not. The majority outcome is continence and sexual function.

I had radiotherapy rather than surgery. No continence or erection problems. When I ejaculate only about half a teaspoon of clear fluid comes out, but ejaculations feel just as intense (if not more so) than they did before my treatment.

Hope that's of some help to you?

All the best,

Chris

User

Posted 07 Oct 2021 at 22:53

It just seems to me there are a great many studies and personal testimony showing a high likelihood of significantly reduced quality of life after all treatments, especially surgery. For example,

https://www.bmj.com/content/371/bmj.m3503

I saw a different study showing depression is 4 times higher after prostate cancer treatment than in the general population - God know what that means for people like me who already struggle to get out of that pit.

All treatments seem to leave a majority with at least one significant problem. Some people may not care about a particular issue for some reason - age or existing impotence or incontinence and/or may be able to adopt a positive attitude towards any degradation in normal functioning. For example, they may be grateful they can achieve any sort of erection, even if those erections are half the quality they were used to before, on the basis they are glad to be alive and something is better than nothing. However such an outcome would still represent a significant degradation in the quality of life for many men.

This forum seems to contain a majority of extremely strong, mentally well-adjusted people with admirably positive attitudes, but I do wonder if that is the norm. I read a few threads on an American forum a while ago where by contrast many posters were extremely bitter, angry and desperate about the outcome of treatment - one even said the aftermath made him think about suicide every day.

I have to confess that it's very tempting to go back to getting obliterated every night, but I'm aware that could cause even more problems - bleeding ulcers and endoscopies are no fun and I also suspect I have some cognitive impairment as a consequence of my many years of stupidity with the bottle.

I have some heavy tranquilisers I generally try and avoid because of the risk of tolerance/addiction but I will probably resort to that at some point. I have some powerful ones that made me sleep for 16 hours the first and only time I tried them so it might be an idea to knock myself out for a few days prior to getting my results.

Edited by member 07 Oct 2021 at 22:57 | Reason: Not specified

User

Posted 07 Oct 2021 at 23:04

Also just to add another case for optimism, I went for radiotherapy (half dose of external beam, half dose of HDR brachytherapy) and the hormone therapy which comes with it. RT was 26 months ago and HT finished 9 months ago. Over last couple of weeks, I've been waking at night and in the morning with erections, so I'm pretty sure my testosterone is returning (I'll know for sure in a couple of weeks when my next PSA/testosterone test is due). I don't yet have libido back (although that could be because I'm very busy with other things.) I can have a successful wank, but I've been able to do that all throughout treatment, although with no libido, it's difficult to be bothered. So I'm optimistic that sex will be back to normal, probably with dry orgasms (which they are now, although the HT does that temporarily anyway). You can lose erections over time as a result of radiotherapy, but it's less likely than with a prostatectomy. I was speaking with the leading authority on RT and HT impacting erections (because I cover it in a class I often give), and if it's going to happen, you will start to see the effect within 2 years of the RT - I'm just past that so I'm keeping my fingers crossed.

Of course, many men who don't have prostate cancer and treatments lose their erections as they get older for many other reasons, and none of us is immune to that. Apparently, 50% of 50 year olds are starting to get some ED. Unexpected loss of erections should always be investigated because it can be an early warning sign of several serious diseases which are still treatable at that point. Many men in hospital with their first heart attack report that they started having erection issues up to 3 years before. It's also the route by which many diabetic men are diagnosed.

User

Posted 08 Oct 2021 at 00:07

I think the statistic for people experiencing depression after being told they have any kind of cancer (not just prostate cancer) is quite high, particularly after treatment is finished - Macmillan have an area of their website devoted to this.

At the moment you don't know that you have cancer, you certainly don't know whether you will be recommended to have treatment or what that treatment might be. Once you get to that stage, if you decide not to have surgery or brachy or whatever, that will be your right. But at the moment you are tormenting yourself with unknown horrors. You certainly have an unnecessarily negative understaning of the risks - that's the problem with forums ... people who had treatment and then had no side effects and got on with their lives tend not to need to hang around a cancer patient forum.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 08 Oct 2021 at 00:58

Thanks Lynn.

Unfortunately what has really almost extinguished the small sliver of hope for me was seeing the huge lumps on my scan. I wish the consultant hadn't shown it. I cannot see any way in which some degree of degradation in my quality of life is not inevitable.

In addition to this the hospital gave me a roughly-typed printout of the risks of the biopsy after the pre-test the day before, with numerical odds against each possible outcome. One of these outcomes was of no cancer being found, with a risk of "between 1 in 50" beside it, It seemed an odd way of putting it given that "between" suggests a value within a high and low parameter so I assumed/hoped it was some sort of error. It was still scary to see such low odds though.

Part of me strongly wants to talk to my mother, who until my aunts living abroad were so kind was the only person I thought cared if I lived or died on a daily basis, but the effect this will have on her terrifies me.

She has been through so much in her life and handled it with extraordinary fortitude - almost too much fortitude at times. Ironically it's only relatively recently that I've understood some of her behaviour that often made me angry and caused conflict between us, as an understandable consequence of the crosses she has had to bear. This situation comes just at the time when her mental strength has collapsed for the first time I've ever witnessed.

I know it's irrational, but I can't help feeling guilty for what I'm inadvertently about to confront her with. I've already dragged her down so many times before with my problems - she's even had to call the police numerous times to cart me off to the mental health unit after I called her blind drunk and suicidal in the early hours. (Amusingly on one occasion I woke up on the floor the next day with no recollection of events whatsoever and was astonished and terrified when a bunch of policeman banged on the door and shouted that if I didn't respond they would force entry - it was the time legal action for illegal downloading of music torrents was a big thing and I was convinced I'd been caught). However that was nothing compared to what's coming.

Edited by member 08 Oct 2021 at 01:03 | Reason: Not specified

User

Posted 08 Oct 2021 at 01:27

By the way Andy, thanks for your PMs - as you know I'm not allowed to reply yet and I sometimes miss emails as I get a phenomenal amount of spam, marketing & phishing emails at the moment. If I tell you that I've pruned them down to 1,700 from over 6,000 you might get an idea of the problem!

User

Posted 08 Oct 2021 at 16:14

You talk of the formidable attitude of men on this forum and it is from mutual support and becoming more aware about PCa that we gain knowledge and strength. But the majority here are either struggling with treatment or concern about what may come next. You don't read much here from the many men who have successfully had treatment, most without a support forum and have just been able to get on with their lives being cautiously optimistic that either PCa will no longer be a problem for them or if further treatment is needed they will deal with it. Statistically, far more men die of something else than their PCa. Appreciate that you have to deal with additional problems, so things are likely to be more difficult for you and as previously suggested support beyond that given for those with PCa may well help.

If there are any questions you have about PCa we will do our best to help answer these through our accumulated experience, although not being doctors individual diagnosis and treatment options are for the patient's medical consultants to advise on. Having said that, patients are often given treatment options and it is here that it can be useful to tap into the experience of members.

Barry

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