How can people with prostate cancer be supported in their sexual identity and relationships?

Summary Lorraine Grover, a Psychosexual Nurse Specialist, joins OnFocus to discuss how a prostate cancer diagnosis and treatment impacts sexual identity and sexual relationships. For over 25 years, Lorraine has been a passionate driver in helping to improve the way sexuality and sexual function is managed within healthcare. She has expertise in managing male sexual dysfunction and has a special interest in caring for patients diagnosed with prostate cancer (and, whenever possible, their partners). Sexual difficulties can have both psychological and organic causes, and she is able to consider both aspects of management. Listen to Lorraine’s interview (15:18 listening time) or read the transcript below (estimated 4 minute read): Please find below a written transcript of the interview, and call The Focal Therapy Clinic today to discuss your prostate cancer treatment options: 020-7036-8870.

Clare Delmar:

Hello and welcome to OnFocus, brought to you by The Focal Therapy Clinic, where we connect you with issues facing men diagnosed with prostate cancer that are little known, less understood, often avoided and even ignored. Prostate cancer is now the most commonly diagnosed cancer in the UK. With this sombre fact comes a multitude of challenges and opportunities. I'm Clare Delmar. Joining me today is Lorraine Grover, a psychosexual nurse specialist who, for over twenty-five years, has been a passionate driver in helping to improve the way sexuality and sexual function is managed within health care. She has expertise in managing male sexual dysfunction and has a special interest in caring for patients diagnosed with prostate cancer and, whenever possible, their partners. Sexual difficulties can have both psychological and organic causes, and she is able to consider both aspects of management. Lorraine has a diploma in psychosexual therapy and, for several years, worked in the NHS, providing nurse-led erectile dysfunction clinics at St George's Hospital, London and Wickham Hospital, Buckinghamshire. She now provides a private consultation service to help men and women overcome difficulties with sexuality and sexual function, which she argues is too often an underestimated area of health care. If you haven't guessed, Lorraine is joining me to talk about sex. Lorraine, welcome and thank you so much for joining me today.

Lorraine Grover:

Thank you, Clare. Thank you for the introduction. And thank you for connecting with me.

Clare Delmar:

Yeah. This is, I think, a very exciting partnership because I know, and we've talked about this prior to this interview, how much our patients and their partners care about this. So, I mean, I think this is going to be kind of the tip of the iceberg, so to speak. But I'm really excited just to sort of start this conversation with a few questions that I think would get people really thinking and really interested in pursuing further. So I'm just going to pick up on what I mentioned about our patients, what they tell us, and just to make an observation that preserving sexual function is something that our patients, almost all of them, care a lot about and voice to us. In fact, I would say it's probably at the top of their concerns, second only to preserving life itself. Yet they tell us that no one asks them about it or, worse, that it's dismissed entirely. So what's your experience? What's happening here?

Having a conversation about sexual function and treatment

Lorraine Grover:

Well, sadly, I think that is often the case, actually. Still is. I feel a lot of men have said to me over the years that they would rather be sexually potent, whatever that definition is to them, and alive, being sexually active, than not being sexually active and having their cancer cured because of the effect of the treatments of managing prostate cancer. Which is so sad to hear when, actually, if the subject was raised with them, they would know that there are lots of things to be considering about sexuality and prostate cancer. And I think we've still got a long way forward. Things have improved to some degree. But what's so reassuring is the patients telling you and you reaching out to bring about change for them too. And the more we do that in health care, the better and also considering partners. So I'm not surprised to hear what you've said. I'm really pleased patients are being proactive in raising their voices because that's how, hopefully, we will bring about some change.

Clare Delmar:

Indeed, but I would say when you say they're raising their voice, which they are, absolutely they are. I would just simply qualify that by saying it's because we're asking them.

Lorraine Grover:

Yeah, yeah. And I'm always banging that drum to health care professionals when I lecture, when I talk to them that we need to bring this subject up very early on in the patient’s pathway. Right at the point, I think of diagnosis.

Clare Delmar:

I mean, do you see any variation in your experience like anything that you could even categorise like some practitioners are better than others, some locations are better than others?

Lorraine Grover:

Yeah, definitely.

Clare Delmar:

How would you describe that variation?

Lorraine Grover:

It's been very much the surgical patient, the man having the radical prostatectomy historically will have some discussion about it's going to impact on your sex life and it can be as simple as that. And that can be quite shocking for the patient to hear and nothing else is discussed. The focus can be all about the erectile function. It's not just the only part of sex having an erection. And sadly, I feel oncologists don't always address sexuality issues. And so I tend to have seen more patients over my 20 odd years from the surgical background. And sadly, within focal therapy, there are very few patients that I have seen over the years. I'm as interested to know from them when I do what their experience has been because I'm learning all the time. We're all learning, aren't we? We don't just assume it's a closed shop of the information that we're given. Understanding the methodology about the treatments for prostate cancer and the impact on sexuality, this is important for us to know in health care as a professional as well as the patient. So I would say top of the league at the moment tends to be more the surgeons, but it can be quite matter-of-fact and doesn't really look at emotion and sexual wellbeing, it will be about functional outcomes.

Clare Delmar:

Yeah. So that raises another thought. Again, looking at the NHS, where you've been a practitioner for many years, and you've spoken openly about the impact that prostate cancer has on sexual function, mental health and most importantly, sexual relationships. What's been the reaction to your approach?

Managing patients' sexual function

Lorraine Grover:

Some healthcare practitioners have welcomed my thoughts with open arms and embraced me, and others have been very against me, I feel, which I think is really sad. I think that can be a bit of a power struggle for some people, and it's almost seen as letting go of patients, of their patients, and actually, no one owns a patient. A patient is seeking help from a healthcare professional. But there's many people involved with the care. And I have to say, in the NHS, I was part of a multidisciplinary team, which I am now. But patients automatically got to see me in my clinic at St Georges when they were going to be having treatment for their prostate cancer. I usually saw them postoperatively, but all patients had access to me, and I loved it. I really did. And in fact, I even saw patients with erectile dysfunction from a GP point of view, they saw me. So, it was quite innovative at the time back in the 90s. And I naively thought that, OK, when I ended up leaving the NHS, which was actually family reasons caring for my elderly parents who were ill, and I just naively thought that in the private sector, these patients would be welcomed with open arms to have their sexuality addressed and I'd be part of a team, which is what I love doing. That hasn't really been the case. I think practitioners are very individual, and I like nothing better than being part of the team because prostate cancer management is being part of the team. The focal therapy, you know, as we've talked about the imaging, the position, all that's being done, what management plan the patient's going to have, what impact the partner has. I often say it's a jigsaw. The pieces are rather all tangled up in the box, and we need to put them all together. And I think that's how prostate cancer patients should have their care as well. There are different aspects that our professional accountability allows us to provide, and we should be sharing that and enhancing patient care moving forward.

Clare Delmar:

Indeed, I think that's absolutely right. And as I said to you before, I mean, one of the things that we've seen with focal therapy patients is the very nature of the treatment invites these conversations with patients.

Lorraine Grover:

Yes.

Clare Delmar:

So it's not a question of either or. It's a question of, you know, this is a treatment that has these benefits and these potential risks. And one of the benefits is the preservation or the reduced risk of any compromising on your sexual function or your sexual relationships. And that forces a conversation, I find. At least that's what our patients tell us. I just want to change tack a little bit. I mean, it's just so interesting what you're saying. One of the things that I'm aware of, and we've talked a little bit about, is how many of the people who approach us well, in our case, about focal therapy, but I know in your case about sexuality and sexual relationships are actually women and the partners of men with a prostate cancer diagnosis who are searching for a treatment that won't compromise their sex life. And often, it's the women who are the advocates or take the lead on this. And I often think these women are the forgotten protagonists in their partner's prostate cancer story. How have you been able to help them?

My patients' experience with my clinic

Lorraine Grover:

Well, I mean, just giving the partner now, you said women. I appreciate that in heterosexual relationships, it will be a female partner. But I think same-sex couples, the LGBTQI community, people need a safe environment to be able to talk about their sex lives and to be able to have that discussed with the health care professional. And so, as you've mentioned women, I will follow that through that women having the opportunity to talk to somebody about the impact of prostate cancer has had on the man in their life's personality, their health, their fear, that opens up all sorts. It also allows a discussion to take place. And there have been sexual issues occurring anyway. It could be, I'm seeing a patient in their 50s where their partner may be in the menopause or premenopausal or has had her own ill health, has never had an opportunity to talk about sex with anybody. And suddenly their male partner has been diagnosed with prostate cancer. And I'm part of that team, hopefully, and I address it and they go, wow, I've never had this opportunity to talk about things. So with women, I'll be talking about arousal, desire, lubrication, what helps them to reach orgasm. And sometimes the couple in front of me will have never had this sort of conversation. You know, they've just been used to having sex in a certain way. There's a diagnosis and then it upsets the apple cart. So a lot can be done for the partner.

Clare Delmar:

And do you see that, I mean, just picking up on your point that in many couples have done things in your words, you know, in a certain way for a very long time. So do you think that this actually opens up new opportunities for them as a couple?

Lorraine Grover:

Yes.

Clare Delmar:

For their own sex life?

Lorraine Grover:

100 per cent. I've had couples go since I've had my prostate cancer diagnosis, I've now got a better sex life. I've seen you, and you'd never believe that, would you really now? I've had people say I've still got an active sex life since my prostate cancer treatment diagnosis 10 years ago because we've changed things. We've introduced things. I probably would have just thought sex has gone off our radar as we got older if I hadn't had access to know about this information. So it's not doom and gloom. I always said to people, this is a recovery and discovery area for you, both of you. I need to find out what their needs are. Everyone's not same. You know, I certainly don't use an algorithm of A, B, C. What's happening for you now? What would you like to do? And sharing and being able to talk to each other. And intimacy, reclaiming intimacy was a great step in the right direction. We're not always on about things like vaginal penetration, getting a stiff erection, but rekindling intimacy for a lot of couples is something that is really liked. And it makes that journey for the individual with prostate cancer to feel the caring, the loving and open up these opportunities of discussion. So it's certainly not all bad news and the partner must be brought into the consultations if it's wanted, some don't.

Clare Delmar:

Really encouraging to hear that. I mean, I'm sure our patients will be very encouraged and inspired to hear that. So what would you like to see changed in the way men are offered treatment for prostate cancer, given what we've just been talking about? And how do you think this crucially important aspect of their lives and their identities can be better addressed?

Having better conversations about treatment side effects

Lorraine Grover:

Well, I think often sex is the third thing discussed. It's the cancer, we're curing the cancer. And it's about continence and sex. I think they're all equally there, aren't they? That cancer diagnosis occurs, and you've got to look at the continence and the sexual side of things together. And I strongly believe that going forward, that a sex therapist, whether it's from a background of nursing or it is a sex therapist, is part of a multidisciplinary team, and that enables professional accountability allows the language. I, as a clinical specialist in erectile dysfunction, years ago was running this erectile dysfunction clinic. But it became quite clear to me that the penis is attached to a man. The man may be in a relationship. The man may be in multiple relationships. We all have different sex lives. That actually, how can I empower myself to empower people to discuss this? Well, I need to get the training. So I hope that going forward, things like what we're doing today will make people think and think about their own practise and think about how they can improve care for patients. Hook up with sex therapists as part of the team approach. And don't be fearful of sharing the patient, whether it's in the NHS or in the private sector, with other members that can really improve the journey for that man with prostate cancer or that person because we've got trans people as well, obviously with prostates. And we should be looking at the whole holistic care. It's really important for patients' mental health, for their relationship for their own sexual being. You know, it's part of within us, isn't it, being a sexual person. And that's not set in stone. It's a continuum. It changes in our lives with all sorts of things that make that change.

Clare Delmar:

Lorraine, that's all we have time for right now. But I really do hope to continue this discussion. And I want to thank you so much for speaking with me today. I mean, it's been such a pleasure for me. And I know that so many of our listeners will be really, really encouraged and inspired by what you've had to say. So thank you very much.

Lorraine Grover:

You're very welcome.

Clare Delmar:

Further information on Lorraine Grover and her practice is on our website, along with the transcript of this interview and additional interviews and stories about living with prostate cancer. Please visit www.thefocaltherapyclinic.co.uk. Thanks for listening, and from me, Clare Delmar, see you next time.

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