A-Z

Penile Cancer

Telling others

Once a diagnosis has been given, some of the men we spoke to were very open and were happy to talk about their diagnosis with anyone who asked. Some men talked about telling a few people and letting the news spread.
 

Jim was becoming more concerned about the pimple on his penis so he decided to tell his sister...

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Jim was becoming more concerned about the pimple on his penis so he decided to tell his sister...

Age at interview: 60
Sex: Male
Age at diagnosis: 58
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I took my sister. My daughter came with me. But they just waited outside whilst I went in for the consultation.

Were they aware of what your symptoms were at that stage?

Yes certainly by although I hadn’t told anybody about the about the pimple earlier on I, because I was becoming more concerned about it, because it wasn’t going away, I decided then that yes I shall take you know them into my confidence and I did that. I suppose really at the beginning of January when I started going to the doctor… for them to check me out.

When you got the results of the biopsy did you tell anybody else?

Only my close family. And close friends. I felt quite open to speak with people at that stage because everybody had been so close to me since the death of my son the previous year that it seemed quite natural to actually talk about it. It wasn’t embarrassing. And I had a lot of comfort from talking with them because they felt they could talk to me about it quite openly rather than something that’s hidden. Which I felt was quite refreshing. And certainly was very, very helpful to my state of mind.

Did you tell your work colleagues?

I did. I looked at the situation as being it could have be my finger, my leg or my arm. It was a part of my body that you know… every man has one and every woman knows a man who’s got one. And I looked at it quite pragmatically….in that sense. So I had no real worry. I referred to it as being penile cancer so that’s probably a description that people haven’t heard of before then but they certainly have become aware of it since.
 

 

Frank confided in a few close friends. He thinks the worst thing that you can do, if you have...

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Frank confided in a few close friends. He thinks the worst thing that you can do, if you have...

Age at interview: 77
Sex: Male
Age at diagnosis: 72
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Once I had been diagnosed with cancer, yes I did and I know that a lot of people might not agree with my viewpoint on this but I have several friends. Three or four are very close friends and they are elderly people like me, in their seventies and they always confide in each other and I think that once you know about a person’s difficulty and you know that you can confide in each other then you understand a person better. Therefore I told err two or three very close friends err that I was in trouble and I explained to them exactly what the circumstances were and they all said, as I expected ‘thank you for letting us know. Do keep us in touch,’ as they would do for me. I think the worst possible thing in a case like this and again I might advise other people, if you’ve got something wrong don’t bottle it up. Don’t go round broadcasting it to the world err but release your tensions and when you think you can talk about it to a few other people then it’s a good idea to do so.

 

As well as his wife and step-daughter, John told other relations and his next door neighbour that...

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As well as his wife and step-daughter, John told other relations and his next door neighbour that...

Age at interview: 68
Sex: Male
Age at diagnosis: 64
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So did you tell anybody else about your diagnosis, other than your step daughter and your wife?

Yes my next door neighbour, they was curious to know what was going on. Obviously they was going to know in the future anyway so you might as well come out and tell them the truth to start with so… they knew… as well as other relations. My wife’s cousins and such like, they knew. But apart from that…well I don’t think it’s any good try to keep it a secret because it’s going to come out anyway, isn’t it? When you’ve been diagnosed. So…

So did you tell people it was penile cancer that you had?

Yes, Yes. Yeah. Yeah. But at that time we didn’t know what the operation was going to consist of or what was going to happen so that was all that I could tell them, that it was penile cancer and…we left it at that [chuckles].
 

 

Tom was attending two large parties with friends, associates and relatives and used these events...

Tom was attending two large parties with friends, associates and relatives and used these events...

Age at interview: 71
Sex: Male
Age at diagnosis: 69
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I didn’t ring round all the family and tell everybody on ‘Day One’ but as I’ve mentioned already I’d two large parties planned therefore I was, I was meeting probably nearly two hundred friends, associates, relatives within the next week or two anyway, so it didn’t take long, if you only had to tell a couple and it was round immediately to everybody there was mixed reactions from people. Some people were almost in tears and very sorry, some people always know of somebody who’s had something and been cured and somebody else knows somebody who’s actually died and therefore [chuckles], you know, there was, there was sort of mixed reactions all round. But as I said we’d plenty of deflections taking place so we didn’t worry too much about it, but yes we didn’t put it on the Internet but we didn’t keep it a secret either.

 

If anyone wants to know anything about Colin’s condition he tells them, he’s not embarrassed, but...

If anyone wants to know anything about Colin’s condition he tells them, he’s not embarrassed, but...

Age at interview: 62
Sex: Male
Age at diagnosis: 62
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At that point, after you had just been given the diagnosis, did you tell anybody else?

Yeah because …told the wife. Children, they knew. And then obviously it’s like ‘Chinese whispers’ then. Everybody starts to get to know. There was cases where I was… well it is a bad illness, when I was seriously ill and I got bladder cancer and it everything started to get out of out of all proportion then. There was people saying that I’d died with a massive heart attack, I had got bladder cancer, I was seriously ill. So really deep down it’s just what ‘Chinese whispers’ are. It gets from bad to worse and it snowballs into all out of proportion. But yeah the immediate family knew. Everybody...you know, which I think it’s only right for them to know. I don’t…I’m a person that never holds anything back. They want to know, I tell them. I don’t... I’ve got nothing to hide, you know. No that’s the situation I’m in, you know. I mean even the neighbours they say ‘well you’ve been to hospital Col’, all this ‘how are you?’ And I tell them the problem. I’m not embarrassed by it. Which I think is another thing that you shouldn’t be. More so I seem to be humorous about it. You know and they’ll say like if they ask me, I say ‘oh the pimple on my dick’s been sorted’ [laughs]. There’s no there’s no need to be remorseful and aggressed about it. And that’s the way to look at it. You’ve got to… and that sort of attitude, where you’ve got to go through life.
 

For other men the issue was just too sensitive to speak about with others. Some men were able to discuss their diagnosis with close friends or family although others kept it private.
 

Frank Z is a very private person; he told only his immediate family the full details of his diagnosis while telling friends he had 'a urinary problem'.

Frank Z is a very private person; he told only his immediate family the full details of his diagnosis while telling friends he had 'a urinary problem'.

Age at interview: 74
Sex: Male
Age at diagnosis: 73
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Did you tell anybody else apart from your family when you received the diagnosis?

No I’ve not told anybody. Only my nearest family. And the friends who I know I’ve just put it… it was …a problem to do with urinary problem, and left a window, a wide window. I haven’t gone into details with anybody other than my family.

What was your reasoning behind keeping it private?

Well initially I… I’m a person who is very… thinks very privately. I keep things and confidences are very important to me. And I… if I was told anything in confidence I would keep it in confidence. And it’s like I told my daughter and my granddaughter. They know all the details and they’ve kept it to themselves. Because it’s not something that you advertise, any medical problem, you… you don’t advertise… as such.

Can you remember how you disclosed your diagnosis to your family?

I disclosed my diagnosis originally over the phone and once I’d disclosed it naturally my daughter was very upset. And she had to ring off, ‘I’ll ring… ring you back Dad’. And she rung me back within the hour where we you know we… we’d more or less accepted it. I was upset in having to tell her and she was upset in getting the news. But then there was just like a pause for reality to kick in and then she rung me back. And we discussed things and then we met the following day. And thereafter she thinks positively, I also think positively.
 

 

Benjamin told some people that he had part of his glans 'the bell shaped end of his penis' removed but didn't tell anyone about the full removal of his penis because they might make fun of him.

Benjamin told some people that he had part of his glans 'the bell shaped end of his penis' removed but didn't tell anyone about the full removal of his penis because they might make fun of him.

Age at interview: 83
Sex: Male
Age at diagnosis: 82
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I think for the glansectomy, the first one you know, I think I mentioned that a time or two to some of my friends but other than that I’ve not – I’ve told nobody about the removal. The only folks who know about that are the practice nurses down at the surgery, doctors and whatever, I mean I haven’t told my sister and she’s diplomatic enough not to ask me. She knows I’ve been whatever, yeh, but she never asks me to go into detail so… there we go. It’s my business, I don’t think it’s anybody else’s.

Are you happy with it being like that or would you prefer to have someone who you can talk about your emotions with?

No, I think you know, it’s my business and I don’t need, I don’t want to talk to anybody, friends or relations about it... it’s just there.

Well it’s a bit private isn’t it? And it’s a bit delicate. What do I say? Well you know I can’t go out and say to the mates “hey, I’ve just had my penis taken off” because they’d just take the mickey wouldn’t they? [chuckles] It’s my thoughts and my decision, I’m telling, I’ve told nobody. As I say there are folks who know, obviously the nurses and doctors. I’ll say this about the practice nurses down there, nobody laughed [chuckles].
 

 

John regrets not telling his family sooner; he doesn't want to talk about his cancer now because...

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John regrets not telling his family sooner; he doesn't want to talk about his cancer now because...

Age at interview: 75
Sex: Male
Age at diagnosis: 74
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I’m reluctant to talk and I feel rightly reluctant to talk about it. It’s not something that that... I talk to you… because of this is why I hesitated for so long because talking about it. I don’t want to talk about it. I’ve moved on, you know. And looking for the next stage rather than stages that have been… because… I think this is the gift God’s given us that in fact you know once it’s happened you… you might have made a mistake - I made a mistake. I should have told my family earlier. They’d have known earlier. It wouldn’t… it might have made… it would have made some difference. There’d have been some changes but it’s happened. So therefore I move on. So only people in a sense who are in a supporting mechanism are the ones that know, you know. And that’s the way I want it to be, yeh.

Revealing a diagnosis of penile cancer to children and young people can be particularly tough. For some of the men we interviewed, it was important to manage the information which was given to younger relatives, either shielding them from what was going on or being more general, as opposed to giving details about their condition.
 

John told his son and daughter-in-law all the details of his diagnosis but just told his...

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John told his son and daughter-in-law all the details of his diagnosis but just told his...

Age at interview: 75
Sex: Male
Age at diagnosis: 74
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Oh I had no problem once I’d told... I just went back I went round to my son and I said ‘look’ and that was it. I said you know ‘I’ve got something to tell you’. I couldn’t hide it any longer you know I mean you know and that was it. So with my son and my daughter-in-law and I told them. And my niece... my granddaughter rather who is sort of 17. And I knew my granddaughter was in tears you know and that’s the very thing I didn’t want to happen. But it did happen so you know I had a I had a chat with my granddaughter on her own and… afterwards you know we talked to her you know. And so that was it. But it was a generalisation with her that I had cancer. You know… my son and daughter-in-law they were given the details and of course my son went down to [Name of place] with me. So he was there when I saw the specialist and he had his notebook, making notes of everything that happened. He’s done that as often as he could because of this wandering mind of mine [Laughs].

 

Les broke the diagnosis to his wife in the way that he was told it: it was not too difficult to keep his diagnosis from his children because he had appointments when they were at school.

Les broke the diagnosis to his wife in the way that he was told it: it was not too difficult to keep his diagnosis from his children because he had appointments when they were at school.

Age at interview: 55
Sex: Male
Age at diagnosis: 41
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How did you break it to your wife?

I basically just came home and told her and said, ‘He said it’s cancer.’ I suppose I broke it to her the way I was, I had the news broke to me [laughs]. It was quite upsetting and worrying at the time. But it was probably more worrying actually the second time when it came back, well it didn’t come back, when they, I went in for the second surgeries for the these biopsies. I think if you think it’s come back – you hear a lot of these stories about people that have leukaemia, they have all these treatments and they go into remission and they can live for 20 years and then it comes back again and that’s it they’ve got a fortnight and away they go. So I think it was more worrying when we thought it was coming back, and also being older it’s like you know [chuckles] that it’s the end of the line. But, touch wood [touches head]– still here! [laughs].

I think at the time because it’s like, the kids were only young at the time and it was the sort of constant worry of, you know will I survive it? How will life sort of carry on for my wife once I’ve gone? You, you think all the black stuff and those were the sort of the mental worries if you like. And they were quite strong at the start you know when you’re going through all the treatments, and the kids didn’t know anything about it either because I was going to see these doctors in the daytime when they were at school, all the treatments was set up in during the middle of the day so we could take the kids to school in the morning I’d have the treatments and we’d be there at the school gate in the afternoon to pick them up so. It was sort of shielding the kids from it and worrying about them and their future sort of thing.
 

 

Steve felt happy to tell people all about his cancer after his treatment; it was easier than...

Steve felt happy to tell people all about his cancer after his treatment; it was easier than...

Age at interview: 71
Sex: Male
Age at diagnosis: 65
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At that point did anybody else know?

No. No it’s... it was.. I kept it up away from the kids because I didn’t want the kids have to suffer with any of that, any of the anxiety. I’ve been told off since but the... no they were fine, they were quite happy with it. They know their dad tells them when he… when they need to know and no more.

So did the… did they ask you any probing questions?

No I think my oldest son turned round and said, ‘Well you’ll have to tell us more about it’ and he’s never asked again. He’s… he wanted to know in case it happened to him but he’s never asked again so I’ve never bothered to volunteer the information.

Did you tell anybody else, outside the family?

Not until after the operation, until I’d got it all under control. And that’s when I felt free that I could talk to people about it. And obviously being a bloke when you’re going to a public loo you have a problem after the operation. So anybody says anything you tell them straight what it is and... anybody wants to take the mick, they shut up straight away. Because as soon as you mention the words ‘I’ve had a cancer operation’ they stop dead. So don’t be frightened of what anybody else thinks anyways, just get on with it.

So you’re quite open with people?

Yes I found it easier. All the time you’re trying to hide something it doesn’t work…it, you feel apprehensive, trying to hide something. If you bring it straight out into the open it’s fine. All of my friends now know exactly what the operation involved, what had... what has happened. Male and female. They all know exactly what it’s all about and they’re all there for me.
 

Most people will never have heard of penile cancer although they may know of someone who has had another cancer. There will be a range of responses when people hear that someone has penile cancer; surprise, shock or confusion; sadness, worry, a loss for words, a sense of awkwardness.
 

David found that nobody had ever heard of penile cancer. When he talks about it he finds that...

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David found that nobody had ever heard of penile cancer. When he talks about it he finds that...

Age at interview: 70
Sex: Male
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I think I’ve my experience is pretty, you know, matter of fact. I think I think probably one or two are a bit baffled and never heard of it. Well nobody’s ever heard of it. I mean I don’t think I’ve ever… I’ve never spoken to anybody who, you know other than a medic or something, but err I’ve never spoken to anybody who has err has heard of it. And some people ask, you know, a bit more, you know, questions and… So but I think I was just a bit you know surprised but accept it. I think most people that I’ve, you know people I come across anyway, are more comfortable talking about cancer anyway.

If it just happens to be penile cancer but it’s does that make it more difficult to talk about? Or as we say it’s just testicular cancer or prostate cancer, which most people have heard of prostate cancer certainly, so I, you know, I’ve I did I suppose I felt at the beginning a bit ‘ooh ahh what am I going to say to people’ and then decide well I’m just going to tell them. And that seems to be the best way to do it really.

What kind of questions did people ask you?

I don’t think they’ve asked me very... what have they asked me? I don’t… when you ask me directly I don’t think that that anybody that anybody’s asked me very much really. I think the usual comment is ‘oh I’ve never heard of it’. So I say well it’s, you know, and then I’ll say ‘it’s rare’ and I’m trying to think of any one person who’s really asked me anything in detail. And I think I’ve probably been asked a couple of times about the surgery but I mean it’s usually me that tells people if I think they’re if I think if I think they are interested or want to know I think I… Actually when I think about it I suspect it’s other people are far more embarrassed about it or embarrassed about my embarrassment or something like that. I think that’s probably what gets in the way.
 

 

People were shocked when Colin told them about his diagnosis, they thought he meant that he had...

People were shocked when Colin told them about his diagnosis, they thought he meant that he had...

Age at interview: 62
Sex: Male
Age at diagnosis: 62
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How did other people react generally when you told them that you had penile cancer?

Shocked. Shocked in the sense where they thought I meant prostate cancer and everybody I spoke to and explained to what it is had never heard of it. And obviously I explained to them that it was very rare. And they were they were shocked in other words, you know. The word, the actual word ‘cancer’, shocked everybody I think in a sense. It’s the actual saying that you’ve got cancer that’s the problem.
 

 

While young men were curious, Steve found that older men were uneasy when he told them about his...

While young men were curious, Steve found that older men were uneasy when he told them about his...

Age at interview: 71
Sex: Male
Age at diagnosis: 65
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What were the general reaction when you told them what you had?

Disbelief I think off most of them. Especially the blokes who are then going they’re all a little bit ‘oh what the heck’s this? What’s going on here?’ And they’re...they’re all got a little bit un...uneasy about themselves. But I think most of them are...are quite comfortable now they...they know what it’s all about and how easy it is to overcome. And most of them are old boys now, they’re all in the ‘70s so obviously things are not working like they used to be for them as well as me.

Were you asked any awkward questions?

Not that… I can’t remember anybody ever asking me anything that I couldn’t answer.

And did you find people were very curious about it?

I found younger people curious. Anybody who… who probed when they were in their ‘20s. I think they wanted to know a lot more about than anybody else. So I just… I would just tell them what they asked and that’s the end of it. Never give them any more detail, just tell them what they asked. 
 

Telling friends and family about the diagnosis can lead to offers of sympathy and support.
 

People were shocked and saddened when Jim told them he had penile cancer but they tried to be...

People were shocked and saddened when Jim told them he had penile cancer but they tried to be...

Age at interview: 60
Sex: Male
Age at diagnosis: 58
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How did people generally react when you told them what your condition was?

Oh they were they were shocked and saddened and their general attitude was you know well you know we’re here for you if you know…helpful, understanding. There was no, there was no question of them not being otherwise.

Did they have any questions for you?


No I think generally they were quite …sort of… decent in by not being too…. they were not too keen to be too nosy about what was going on. They just understood that I had a problem that obviously I had to have an operation…. with it and they were they were just generally quite sympathetic.
 

When people ask about penile cancer, many of the men found that saying that it was a rare cancer was sufficient and awkwardness prevents any further questioning. Others did want to know details about the illness and how it is treated. Family may be interested in whether the condition is hereditary and will be passed from parent to child or whether brothers of the man are at risk and should seek medical advice.
 

Paul felt embarrassed explaining his treatment to his brothers when their wives were present.

Paul felt embarrassed explaining his treatment to his brothers when their wives were present.

Age at interview: 61
Sex: Male
Age at diagnosis: 59
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Well yeh, yeh, the one brother he you know he said, ”What kind of surgery have you had to have?” I told him then that I’ve had to have reconstruction surgery I just told him that, well even trying to tell, to explain to my brothers was difficult because, well for one thing their wives were sat next to them but I mean more or less from day one I, that might have been what stopped me from talking to people about, because I just felt it was so embarrassing that I feel ashamed about it. But I’ve been told that I shouldn’t be thinking like that.

 

Jordan's friends were sympathetic when he told them the diagnosis, but his family had serious concerns: would it kill him and was it hereditary?

Jordan's friends were sympathetic when he told them the diagnosis, but his family had serious concerns: would it kill him and was it hereditary?

Age at interview: 58
Sex: Male
Age at diagnosis: 57
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How did they react generally?

Great sympathy... friends with great sympathy and ‘can we do anything?’ You know, it doesn’t matter how things go. But with the family obviously it was much more serious, you know' ‘Will it kill you?’ my brother [clears throat], who lives many miles away, and I don’t see a lot of, but we chat on the phone occasionally – he wanted to know was it, would it be hereditary? [Laughs] So, I said, ‘No, not very likely.’ He’s four years older than me and he’s been circumcised, which was well from a very early age I suppose. So, I told him it’s not going to like be a worry for him [Coughs].
 

Being open and talking things over with family and friends can also be beneficial to others as well as men who are experiencing the illness. Some people felt that they strengthened their family by telling them and allowing them to ask questions and share their concerns.
 

Tim’s family started to get more concerned as the operation day got closer, so he tried to keep...

Tim’s family started to get more concerned as the operation day got closer, so he tried to keep...

Age at interview: 54
Sex: Male
Age at diagnosis: 53
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Then as we got closer to operation day, obviously the, my family and people started to get a bit concerned, get a bit more worried, you know, and I don’t think I necessarily appreciated it at that time how worried some of them were, especially my children. I’d – I was trying hard to sort of keep them involved and let them know factually as much as possible because I thought that if I don’t tell them things, their, their imagination will work overtime and things will seem, will sound worse than they are. So it was keeping them involved, and then it was making sort of practical arrangements as well.

 

Jordan feels his family has become closer since his illness; his two daughters were supportive...

Jordan feels his family has become closer since his illness; his two daughters were supportive...

Age at interview: 58
Sex: Male
Age at diagnosis: 57
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The support from friends and family was very nice to have. And although they pushed me to have the surgery and I felt very intimidated by that… I feel it’s brought as very closer, close together as a family which is which is nice. I have a daughter who lives in Spain and she’ll probably ring us once a month but now she sort of rings twice a week to check up how I am. And all through the time to check I was okay and how her mum is and that sort of thing so I feel that’s positive. It is interesting because my younger daughter only lives off 15 miles away. She didn’t want to come and see me because she was worried about me and she’s a bit like me head in the sand and… she said she couldn’t bear to sort of see me because she was worried that you know I was going to die or whatever. And she thought if she saw a lot of me she’d be pestering to have the surgery so that’s her way of getting over that. But now it’s back to normal.

Hospitals usually group treatments and consultations into clinics by condition. When having a consultation it is possible that other men in the waiting room have penile cancer although none of the men we interviewed discussed their condition in this environment. Treatments may be provided in either urology or cancer wards. Because of its rarity, it is very unlikely that there will be other men with penile cancer in the same ward.  There are however, likely to be patients with similar concerns, such as waiting for surgery and using catheters to urinate. Some of the men we interviewed discreetly shared their diagnosis on the ward although they didn’t feel pressured to reveal the details.
 

When talking to the man in the next bed on his ward, John Z told him he had penile cancer.

When talking to the man in the next bed on his ward, John Z told him he had penile cancer.

Age at interview: 68
Sex: Male
Age at diagnosis: 64
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As I say, there was all in the same position as you were. They… some knew… I was closer to some of the patients like the chap in the next bed asked me what I was in for and I said it was penile cancer and I’ve had it removed and…that was that was as far as it went you know. He didn’t enquire as to what the symptoms were. Nobody… nobody asked what the symptoms are or …so…therefore I suppose it it’s such a rare occurrence that nobody seems to bother really.



Last reviewed July 2017.
 
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