What do you tell family, friends and work colleagues?

JC54 19 days ago

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Hi all,

I thought I would post here about communicating with family friends and work colleagues about your condition. I have recently been dignosed with penile cancer and have an immenant operation to hoepfully remedy the situation.

Its been about 4-6 weeks that I have known and across that time I have had very few conversations about my diagnosis, but most of the ones I have had have been with immediate family. I am struggling with what to say when going wider than family, ie friends and work coleagues?

As you would expect, I find that I am more open with my family, and this makes the conversation easier, for example, with my mother I could talk about the diagnosis, its penile cancer and there is a tumour that needs removing, it may mean a skin graft, lymph node removal if the scan outcome shows its spread, etc, other than being upset, she was ok with it, but she was more aware and understanding and I think that was partly due to having been a nurse in her early career.

My brother and sisters know the same, but have not aksed what the operation entails, so I have just said a tumour needs to be removed and its kind of been left like that. I am sure there will be more conversations as I come out the other side of the operation.

The conversation becomes more awkward when going wider than immeadiate family, ie work colleagues, I have said doctors have found a tumour and it needs removing, that seems to be sufficient for most of them, a few people ask where the tumour is and I feel there is a bit of a stigma if you say on the penis, and you can see the conversation becomes even more awkward at that point?

To explain this further, my wife has told her work collegues I have prostate cancer, it seems to be more socially acceptable, and she does not want the additional questions?

Some of my friends are totally ok with it and you can be open and frank, even to the point of making jokes about it, others I would not dream of tellling.

I suppose I am the filter, making a judgment about who I think will be more accepting and open about my diagnosis.

I have spoken to one of my kids, and no real issues, he was uderstanding, empathetic and asked questions, probably more than any of my generation have so far. I have two more children to tell, they have just finsihed their GCSE's, so thats a conversation for tomorrow when they visit for a family get together.......

How have others communicated their condition in their wider social circle? What words or terminology have you usedto describe cancer or tumour on the penis?

Regards

Dave 46 19 days ago

Hi..sorry to hear your diagnosis and I wish you well with your treatments. It's a scary place to be.

One thing I have learnt [ after 11 years ] is to be brutally honest and say it as it is. Not always easy. I was like you not sure how to say it and the terminology to use but as was pointed out to me I was protecting other people's feeling and not be true to mine.

I know some say euroligal cance or water works cancer or even man's bits but it is what is is penile cancer. The more we are clear with our terminology the more people will be aware which is a great thing. It's the stigma and lack of awareness that costs lives.

Be bold , say it as it is. If anyone finds it awkward that's their issue but at least they have been educated. The tough bit is when people avoid you or don't ask how you are just because they are not sure if it's OK to ask.

I virtually became a recluse at one point not going out so I could avoid the conversations. So i know how tough it ca be.

JC54 19 days ago in reply to Dave 46

Thanks Dave, always good to hear from someone else who has gone through the same experience.

I like the "be bold" phrase and "if they find it awkward thats their issue", I guess your right in terms of a lack of knowledge and awareness around penile cancer, its not exactly something thats talked about or your aware of until you or someone close to you is diagnosed.

Regards

Dave 46 19 days ago in reply to JC54

I have often thought it all down to the word "penis" we just don't use it. No one ever says it , almost like a word that must not be spoken. Even us blokes use slang instead so we are to blame too.. would dick prick or willy cancer be more acceptable , probably.

It is odd we struggle to say what it is.

Hope your doing OK. What hospital are you with?

JC54 19 days ago in reply to Dave 46

I was thinking the same, I have to tell my daughter tomorrow, and just not comfortable using the word penis, she is fairly young and just finished GCSE's......

I am heading into St George's in London

Dave 46 19 days ago in reply to JC54

Tricky.. maybe slang would be more comfortable.

I was at St George's with Prof Watkins and Ben Eyres.. top people. Your in the best of hands for sure.

JC54 17 days ago in reply to Dave 46

Well I thought I would feed back after speaking to my kids yesterday, it was not a conversation I was looking forwards to.

I took Dave46 advice and just said it how it is, I am not well and need an operation shortly to remove a tumour, its a cancerous tumour. They asked where the cancer was and I just said I have penile cancer, there was no issues or strange looks, just genuine concearn.

They wanted to know how long I was in hospital for, how long to recover, how they will tell if it has spread and if I was OK. Love my kids!

I think sometimes the issue is in my head!

Oh well, have a good day everyone!

Regards

Williamp 16 days ago

Totally agree with not knowing what to say in 1st place to family, friends and work colleagues, but found in my case it was just easier to tell them it was penile cancer, the other reason being most people are not even aware of penile cancer, (i was not), so does help to make more people aware and for men to keep a check on themselves. Also made it easier for me when it returned. But at the end of the day it's what you feel comfortable to tell the person.

William

Jonodp 8 days ago

Hi JC54, I went with ‘man’s cancer’ whilst curiosity occasionally prompted further enquiries, mostly the reception was that of acceptance and ending the specific enquiry there, more generalised questions followed. Of course I was more forthcoming with loved ones, my children range from 15-30, so different approaches were used accordingly.

10 months on, I’m doing well penile cancer wise. I still struggle a little with the lack of physical intimacy with my partner, as I’m sure she does. My glansectomy was fairly extensive, and whilst I’ve adjusted to sitting down to pee, the occasional discomfort and explaining to a tailor that I dress neither to the left or right, things are good. My overall sense is one of gratefulness to the RBH and University Hospital London, for no longer having cancer but part of me still grieves the loss. It’s been a journey, a learning curve and a trial but ultimately I am still here, able to enjoy the little things, the big things if not the intimate things. The intimate things matter, not being able to have penetrative intercourse is tough, in some respect more so than with ED, because with ED there is hope, when you don’t have the essential appendage then there is only a sense of loss, but experimentation is fun! Good luck on your journey.

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