Surviving prostate cancer would be great, but surviving and living would be better.

When do you become a cancer “survivor”? That was the question posed in an online forum where the contributors were discussing “survivorship” in the context of prostate cancer. There were differing opinions based, understandably, on the personal experiences of the men affected.

Personally, I’m not sure about the survivor bit. It’s not just that I don’t yet feel like one myself but it’s also that I wonder if I’ll ever be truly free of cancer, even if one day I am told it’s gone. It could be gone physically but would it also be gone from my head? I hope so, but I can’t yet see that being the case. Maybe you need to come to terms with cancer in order to get it out of your head? I haven’t yet done that.

I was determined that cancer wouldn’t end up being the be-all and end-all, that I wouldn’t let it take over, but I feel like it has. It has become all pervading, reaching out with its tentacles to entangle every aspect of my being. I know that sounds dramatic, but I bet I’m not the only one with cancer to feel that way. On occasions I’ve found myself severely affected by fatigue, by infections, by pain. There are hospital appointments, doctor’s appointments and all the rest. I’ve worked shifts my entire life yet I’ve never had to think so seriously and deeply about such run of the mill, everyday things as diet, exercise and sleep. My daily routine is totally different from this time a year ago. Added to that is an underlying fear that the cancer has spread or will spread, that every ache or twinge is a symptom. It’s irrational in lots of ways, but the fear is there.

I don’t know how other cancers affect sex and sexuality. I don’t even know if they do, but I suspect that the other male cancers must. I have found that the many effects of prostate cancer, and its treatments, go to the very core of being a man. Basically, I can no longer “get it up”. There’s some movement, a poor excuse for a “semi”, but certainly not enough for sex. The possibility of future radiotherapy holds the threat of what little movement remains also disappearing, This is all a big change from before and it has affected me more than I realised it would, in spite of reading up on it prior to surgery. It’s depressing. Any man not affected by erectile dysfunction is unlikely to have a true understanding of what it can mean. Sure, we’re all different, but we’re all sexual beings to one extent or another. We all need that physical release, don’t we?

What man wouldn’t be depressed about post cancer impotence? I miss the full erections. I miss the sex. I miss the wanking. I miss the sensation of “cumming”. Before my surgery I was told in a well-meaning way that I’d still be able to have soft, dry orgasms. I’ve yet to experience one that is anywhere near as satisfying as before. On a scale of 1 to 10, most pre-cancer orgasms were at least an 8 or more. The few I’ve had since surgery are about a 1, and a poor 1 at that. I really wasn’t prepared for this, and, on occasions feel very down. I try to overcome the despondency by just “getting on with it”, but just “getting on with it” is not a long term solution.

As good as they are in many things I’ve found the health services very lacking in the erectile dysfunction department. I’ve felt like I’m floundering. After asking, I’ve been referred to an E.D. Clinic. I think E.D. referrals should be an automatic part of the treatment plan for every man with prostate cancer. Where I live the local NHS has decreed that the help I could get elsewhere in the UK in the way of Vacuum Pumps and Medications should be either not available at all on the NHS or only available in small amounts. I have this vision of a room full of prudish, old maids, supplemented by a few disapproving nuns from the Order of The Sisters of Little Mercy (thanks to Steve Coogan in Philomena for that line), coming to the conclusion that a desire for sex in any man is bad enough but that desire coupled with a man aged over 50 is even worse and definitely not to be encouraged. If they knew I was gay, God only knows what they’d say. No fear of that, though, as they probably haven’t even considered such a thing. They have a one-size-fits-all approach (no pun intended) that takes little account of the differing needs of individual straight men, let alone those of gay men who have (or, rather, used to have) penetrative sex. So much for the Equality Act and the NHS’s duty to treat everyone fairly. Depriving everyone equally is not the same!

If I had to put the whole lot together, all the experiences associated with this cancer, all the possibilities, its potential, what it’s already done and how my life has changed I’d say I felt totally pissed off and dejected. Not all the time, but certainly a lot of the time. It’s life changing in every way. It gets right to the core of my being, for my reason for living up to when it hit. It’s changed all my plans, (our plans), for the future. I am now trying to adapt. My choice is to make the best of things and move on, not to give in and give up, but I could sure use some help, not least on the sex front. I can appreciate why depression sets in with some guys and I don’t blame them for it. I still prefer the option of surviving over the alternative, but surviving and living would be better.

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14 thoughts on “Surviving prostate cancer would be great, but surviving and living would be better.

  1. Hi my partner was diagnosed with aggressive prostrate cancer Oct last year at age 46, he underwent a radical prostatectomy in Nov. unfortunately the cancer had spread to his pelvic lymph nodes. We are now undergoing hormone replacement therapy to help stop the spread. To say this has been an emotional roller coaster is an understatement. Reading through this blog brings comfort in knowing we are not alone in a time when ist times it certainly does feel like that. Through love, support and positive thoughts I wish you all well in your journeys. And if there is anyone in Melbourne Australia please feel free to get in contact.

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    • Hi Rod,

      My cancer has spread to my pelvic lymph nodes now, too. The standard treatment here in the UK sounds like what your partner is getting but, because of some promising results that have come out of the STAMPEDE trial, that’s changing.

      It depends on the individual because we’re all different, but I’m about to start early chemo (Docetaxel), which was only used in the later stages. Results from the STAMPEDE trial have shown that having it early can have better results. Not a cure, but more time. It’s worth reading up about and asking the doctors.

      These two links are the ones to look at:

      http://www.stampedetrial.org

      http://www.ctu.mrc.ac.uk/13706/13710/docetaxel_prostate_cancer

      I wish you and your partner all the best.

      Jim

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      • Hi Jim,
        Thanks heaps for those links I will have a look at them. I discussed thus option with our oncologist and he told us new data had come through indicating chemo does not benefit at this early stage. I would be very keen to be kept updated with your treatment, please also email me with your comments as I may not see them on this forum. I wish you all the bed with your ongoing treatment.
        Cheers
        Rod

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  2. Just concerned about your comments on the ED side of things. I have been an ED nurse specialist for a few years and have heard this before where men cannot get their treatment on the NHS. I dont know if you know about this, but when Viagra was launched in 1999 the government published Schedule 11. This states that men who have certain conditions (inc prostate cancer) can get their treatment free on the NHS. This includes PDE5i (viagra, levitra and cialis), alprostadil (muse and caverject) and vac devices. The schedule is a little ‘annoying’ in that it states a man can only have 4 tablets a month however this can be increased but is up to the prescriber and the man to ‘prove’ he needs more. I wish you luck in this.

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    • Hi Lisa,

      Thanks for your support.

      Yep, I’ve read Section 11, I’ve quoted it to my local CCG. The system is set up to prevent the patient from putting in a formal complaint unless the GP or Consultant first puts in a request for funding, stating the reasons, and is turned down.

      Both my GP and Surgeon and the ED Consultant I’ve seen since writing my blog have been down that road before and have been turned down so aren’t going to waste their time, it seems. So I’m left unable to put in a formal complaint. I don’t blame them. I blame what the politicians, the accountants and the bureaucrats have done to our NHS.

      I hope that if enough men, and our partners and families, speak up that things might change so we can get the treatment we need.

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  3. I celebrated my birthday yesterday. Reading this was the best birthday present… knowing that someone else understands.

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    • Hi Michael. Thanks for your kind comment. Through writing this blog (which I only started doing a short time ago), I’ve found there are so many of us in this position and we’re neither being considered nor heard. You are definitely not alone! The more of us who speak up the better – we can change things for the better for guys who come after us and help ourselves at the same time.

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      • Thanks. I have spoken to MacMillan nurses and specialist nurses at Prostate Cancer UK. My experience has been that neither sexual orientation nor the impact of therapy upon sexual expression have figured in their interaction with me. When confronted with my concerns, they have reacted with, at best, mild embarassment and, at worst, a dismissal of my concerns. The focus of the NHS is upon keeping the cancer patient alive AT ANY COST to life quality. If I had known what I know now, I would not have undertaken any therapeutic regime. I would have lived with the cancer until it took my life.

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      • Hi Michael,

        What part of the country are you in? I ask in case you aren’t aware of the three UK based groups that have sprung up in the last 12 months that aim to bring together and support gay and bisexual men affected by Prostate Cancer.

        This link has information about the new groups and lots of other relevant info, too: – http://prostatecanceruk.org/information/living-with-prostate-cancer/gay-and-bisexual-men

        No health professional should just dismiss your concerns. If they don’t understand them or are too embarrassed to discuss them in order to find out more so they can help you, they are not behaving professionally. I understand what you’ve been through because I, along with probably every other gay or bisexual man who’s not hidden his sexuality, has encountered the same things. It’s all very well saying their embarrassment or ignorance is their problem and not ours, but it becomes our problem if, as a result, we don’t get the best healthcare in order to give us quality of life as well as the hoped for cure.

        In my case I didn’t have an option. For that reason I don’t regret having the surgery but I do regret not being fully aware of the impact it would have. I am realising (slowly) that I have to make the best of my new situation. For me that includes writing about it and trying to change things for the better in a small way. Your replies to my piece will also be seen and they, too, will help get the message out. Thanks! I really mean that. I’m lucky because I now have incredible support from my surgeon and my specialist nurses who all know I’m gay and, far from being embarrassed, are keen to ask me about things they don’t know about. We are learning from each other. If you aren’t getting similar from your medical team complain until you do. It’s your right to be treated fairly.

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      • Thank you with all my heart. These words are so powerfully affirming. I am especially affirmed by your declaration of regret at the way in which your preparation for treatment failed to provide you with a full awareness of its consequences. When I confronted my oncologist with this fact, he observed that providing a detailed description of the consequences would frighten his patients! What hubris! ‘Power in Caring Professions’ (Richard Hugman, Macmillan, 1991) offers a very convincing analysis of the ways in which professional carers (and especially senior health professionals in the NHS) are susceptible to this very damaging phenomenon of omniscience. It may be that we no longer touch our forlocks in the presence of a doctor but many still assume that they can decide FOR US what is best. I hope you will be cheered to know that I shared your ‘rant’ with my partner and he told me that your words had provded a deeper understanding of my (and our) predicament – better than I have done so far! Thank you for the link. I have previuosly noted that there is a meeting of Out with Prostate Cancer in Greenwich, South London which would be possible for me to attend. I am in North Hampshire but used to work in Greenwich, so, I know how to get there. Thank you again and bless you mightily.

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      • Thanks. Can’t make it. We’re off to a birthday bash in Luton. Maybe next month.

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