Rob Cornes

And could I just ask you, Ben, that's obviously a very important point. We've had this discussion before around shared decision making. So bearing in mind that all curative treatment for penile cancer will involve surgery, how far is shared decision making involved?

And could I just ask you, Ben, that's obviously a very important point. We've had this discussion before around shared decision making. So bearing in mind that all curative treatment for penile cancer will involve surgery, how far is shared decision making involved?

And how do you speak or explain this to your patients when you have to remember that they're going to have absolutely no insight at that point in time as to what the long-term consequences are going to be? How do you approach that in clinic practice?

And how do you speak or explain this to your patients when you have to remember that they're going to have absolutely no insight at that point in time as to what the long-term consequences are going to be? How do you approach that in clinic practice?

Hi, thanks. I'm a nurse specialist based in the UK working for a small male cancer charity called Orchid. I'm also a patient advocate representative for ERNE Urogen, which is a European organisation for rare network diseases, and also a patient advocate and representative for penile cancer with the European Association of Urology Patient Advocacy Group.

Hi, thanks. I'm a nurse specialist based in the UK working for a small male cancer charity called Orchid. I'm also a patient advocate representative for ERNE Urogen, which is a European organisation for rare network diseases, and also a patient advocate and representative for penile cancer with the European Association of Urology Patient Advocacy Group.

Yes, thanks, Ben. So I think the first thing is that we need to realise that penile cancer, although exceptionally rare, will have the biggest consequences from physical and psychological wellbeing. All curative treatment is going to involve some form of surgery.

Yes, thanks, Ben. So I think the first thing is that we need to realise that penile cancer, although exceptionally rare, will have the biggest consequences from physical and psychological wellbeing. All curative treatment is going to involve some form of surgery.

So men are going to have to live not only with an altered body image and physical problems in their everyday life or readjusting to various habits that they've got used to over their lifetime, But there's also a big impact of isolation. And I think this is overlooked to some degree.

So men are going to have to live not only with an altered body image and physical problems in their everyday life or readjusting to various habits that they've got used to over their lifetime, But there's also a big impact of isolation. And I think this is overlooked to some degree.

So if I give you an example, if you're diagnosed with prostate cancer, which is the most common cancer in men, the chances are that you'll probably know somebody maybe in your neighborhood who's been affected. or a friend or a colleague who knows somebody who's been affected.

So if I give you an example, if you're diagnosed with prostate cancer, which is the most common cancer in men, the chances are that you'll probably know somebody maybe in your neighborhood who's been affected. or a friend or a colleague who knows somebody who's been affected.

If you speak to a local doctor, healthcare professional, pharmacist, they will have a great deal of knowledge about prostate cancer. They will be able to relate to what you're experiencing and may be able to help support you. But with penile cancer, we're in a completely different situation. Many people don't even know it exists.

If you speak to a local doctor, healthcare professional, pharmacist, they will have a great deal of knowledge about prostate cancer. They will be able to relate to what you're experiencing and may be able to help support you. But with penile cancer, we're in a completely different situation. Many people don't even know it exists.

And that includes healthcare professionals who will never come across it in their careers. So when it comes to men trying to find answers, to readjust, there is nobody at a local level that they can really speak to who has been through something similar. And I think we end up with this very isolated group of men which would then impact again on their psychological well-being.

And that includes healthcare professionals who will never come across it in their careers. So when it comes to men trying to find answers, to readjust, there is nobody at a local level that they can really speak to who has been through something similar. And I think we end up with this very isolated group of men which would then impact again on their psychological well-being.

And the majority of men with penile cancer will never, ever meet anybody else who's been affected, unlike prostate cancer. Thank you, Rob.

And the majority of men with penile cancer will never, ever meet anybody else who's been affected, unlike prostate cancer. Thank you, Rob.

In the real world, you're not going to have to provide everybody with everything they need, especially around penile cancer. But if you can promote that sort of online or virtual meeting or support, these groups will have people who can offer tips or advice on how they manage that situation.

In the real world, you're not going to have to provide everybody with everything they need, especially around penile cancer. But if you can promote that sort of online or virtual meeting or support, these groups will have people who can offer tips or advice on how they manage that situation.

plus the actual psychological benefit of being able to reach out and express your worries or fears amongst people who know. And on that group as well, there's a lot of partners and family members who will also post or ask questions on patients' behalf.

plus the actual psychological benefit of being able to reach out and express your worries or fears amongst people who know. And on that group as well, there's a lot of partners and family members who will also post or ask questions on patients' behalf.

what are you aware of in terms of peer support that there is out there for penile cancer and are there any benefits that some of our patients might be seeing at the moment well obviously like again prostate cancer so in the uk with prostate cancer there are around 110 regional support groups which men can tap into penile cancer because of its rarity is a completely different situation

what are you aware of in terms of peer support that there is out there for penile cancer and are there any benefits that some of our patients might be seeing at the moment well obviously like again prostate cancer so in the uk with prostate cancer there are around 110 regional support groups which men can tap into penile cancer because of its rarity is a completely different situation

So I think we have to really foster and promote peer support, whatever exists in penile cancer, because it is a way we can meet some unmet clinical needs.

So I think we have to really foster and promote peer support, whatever exists in penile cancer, because it is a way we can meet some unmet clinical needs.

So in the UK, I'm only aware of three support groups for penile cancer, as well as a big online closed Facebook group. Now, I can tell you that that group has been so incredibly helpful to a number of men who have been on there and used it simply because they can just reach out and hear from somebody else who actually knows what they've gone through.

So in the UK, I'm only aware of three support groups for penile cancer, as well as a big online closed Facebook group. Now, I can tell you that that group has been so incredibly helpful to a number of men who have been on there and used it simply because they can just reach out and hear from somebody else who actually knows what they've gone through.

There are people in good and bad situations, obviously, but the majority of men who are using peer support in that way, it's dramatically improving their outlook. And I think we're missing maybe quite a big thing here because we're all talking about unmet needs.

There are people in good and bad situations, obviously, but the majority of men who are using peer support in that way, it's dramatically improving their outlook. And I think we're missing maybe quite a big thing here because we're all talking about unmet needs.

In the real world, it's not going to be able to provide... You're not going to have to provide everybody with everything they need, especially around penile cancer. But if you can promote that sort of online or virtual meeting or support, these groups will have people who can...

In the real world, it's not going to be able to provide... You're not going to have to provide everybody with everything they need, especially around penile cancer. But if you can promote that sort of online or virtual meeting or support, these groups will have people who can...

offer tips or advice on how they manage that situation plus the actual psychological benefit of being able to reach out and express your worries or fears amongst people who know and on that group as well there's a lot of partners and family members who will also post or ask questions on patients behalf so

offer tips or advice on how they manage that situation plus the actual psychological benefit of being able to reach out and express your worries or fears amongst people who know and on that group as well there's a lot of partners and family members who will also post or ask questions on patients behalf so

I think we have to really foster and promote peer support, whatever exists in penile cancer, because it is a way we can meet some unmet need, clinical needs.

I think we have to really foster and promote peer support, whatever exists in penile cancer, because it is a way we can meet some unmet need, clinical needs.

And could I just ask you, Ben, that's obviously a very important point. We've had this discussion before around shared decision making. So bearing in mind that all curative treatment for penile cancer will involve surgery, how far is shared decision making involved?

And how do you speak or explain this to your patients when you have to remember that they're going to have absolutely no insight at that point in time as to what the long-term consequences are going to be? How do you approach that in clinic practice?

Hi, thanks. I'm a nurse specialist based in the UK working for a small male cancer charity called Orchid. I'm also a patient advocate representative for ERNE Urogen, which is a European organisation for rare network diseases, and also a patient advocate and representative for penile cancer with the European Association of Urology Patient Advocacy Group.

Yes, thanks, Ben. So I think the first thing is that we need to realise that penile cancer, although exceptionally rare, will have the biggest consequences from physical and psychological wellbeing. All curative treatment is going to involve some form of surgery.

So men are going to have to live not only with an altered body image and physical problems in their everyday life or readjusting to various habits that they've got used to over their lifetime, But there's also a big impact of isolation. And I think this is overlooked to some degree.

So if I give you an example, if you're diagnosed with prostate cancer, which is the most common cancer in men, the chances are that you'll probably know somebody maybe in your neighborhood who's been affected. or a friend or a colleague who knows somebody who's been affected.

If you speak to a local doctor, healthcare professional, pharmacist, they will have a great deal of knowledge about prostate cancer. They will be able to relate to what you're experiencing and may be able to help support you. But with penile cancer, we're in a completely different situation. Many people don't even know it exists.

And that includes healthcare professionals who will never come across it in their careers. So when it comes to men trying to find answers, to readjust, there is nobody at a local level that they can really speak to who has been through something similar. And I think we end up with this very isolated group of men which would then impact again on their psychological well-being.

And the majority of men with penile cancer will never, ever meet anybody else who's been affected, unlike prostate cancer. Thank you, Rob.

In the real world, you're not going to have to provide everybody with everything they need, especially around penile cancer. But if you can promote that sort of online or virtual meeting or support, these groups will have people who can offer tips or advice on how they manage that situation.

plus the actual psychological benefit of being able to reach out and express your worries or fears amongst people who know. And on that group as well, there's a lot of partners and family members who will also post or ask questions on patients' behalf.

what are you aware of in terms of peer support that there is out there for penile cancer and are there any benefits that some of our patients might be seeing at the moment well obviously like again prostate cancer so in the uk with prostate cancer there are around 110 regional support groups which men can tap into penile cancer because of its rarity is a completely different situation

So I think we have to really foster and promote peer support, whatever exists in penile cancer, because it is a way we can meet some unmet clinical needs.

So in the UK, I'm only aware of three support groups for penile cancer, as well as a big online closed Facebook group. Now, I can tell you that that group has been so incredibly helpful to a number of men who have been on there and used it simply because they can just reach out and hear from somebody else who actually knows what they've gone through.

There are people in good and bad situations, obviously, but the majority of men who are using peer support in that way, it's dramatically improving their outlook. And I think we're missing maybe quite a big thing here because we're all talking about unmet needs.

In the real world, it's not going to be able to provide... You're not going to have to provide everybody with everything they need, especially around penile cancer. But if you can promote that sort of online or virtual meeting or support, these groups will have people who can...

offer tips or advice on how they manage that situation plus the actual psychological benefit of being able to reach out and express your worries or fears amongst people who know and on that group as well there's a lot of partners and family members who will also post or ask questions on patients behalf so

I think we have to really foster and promote peer support, whatever exists in penile cancer, because it is a way we can meet some unmet need, clinical needs.