My introduction...

Hi Chris, sorry to hear of your diagnosis. The whole thing comes as a big shock and brings so much anxiety and fear of the unknown for everyone - the men, the partners, the children, the siblings and friends. It almost feels as if the world has shifted on its axle and things will never be the same again.

we are almost 6 months into this journey and the turmoil still persists. 

re talking to others - well, that is your decision to make - just one of many big decisions in this journey.  However, if you have brothers or adult sons I would recommend you tell them because , now that you have prostate cancer, they are at higher risk of having similar genetic make up which will make them more susceptible to developing it. They will need to be monitored. Hopefully they will be ok but, if not, hopefully any cancer will be caught early enough to be curable.

you ask about the motive to tell others. Hmm ! For me, that is some sense of ‘a trouble shared is a trouble halved’.  It also explains my tears, my tiredness due to lack of sleep, my air of distraction and inability to concentrate. It means that my family are offering support. It means that they know what is going on and are not worrying about what might be going on.   It means I have an explanation for not being able to work at full pace etc.There’s a whole load of reasons in there for me.

however we are all different, have different needs and different feelings and really none of us can say what will work for somebody else. I’m sorry I can’t advise you but I hope my thoughts help you to reach a decision that is right for you.

best of luck!

Hi Chris - Welcome to our club - you have taken a big step in joining so there is a positive.

So sorry to hear of your diagnosis and it looks like you are on the right road to deal with the cancer.

I see what you say about journaling where you are - plenty of community members write a daily diary - I just stick my journey and sometimes thoughts up online (you can read mine by clicking on the image of the beach).

Should you tell others - personal choice, however you are on hormones (anti-therapy) well in my case it affected my moods and because I had told everyone - family and friends - and to treat me as normal - when I did have a down day -and they will come - I had the help and understanding I needed.

My family were all great once they had been told and so were most of my friends - life carried on as normal - people were kept in the loop about my treatment. The interesting thing to me is that four of five people have asked about symptoms - and I am now helping two of them on their own journey through this cancer - to me that's been a positive.

Chris - we are all different but I hope my Sunday morning sermon has helped - If you want to know anything else, just ask.

Brian.

This was a really important issue for me.

Actually, I didn't tell anyone until I knew my diagnosis. I didn't need the support myself (my CNS's were excellent for initial support), and although I could just about keep myself together, I didn't have the emotional reserve to support anyone else at that point. That is something you may find you need when you tell people - it's a very sudden shock for them too - they may not know how to react (and may do so inappropriately in the spur of the moment - don't hold that against them), and they may also need support from you. My diagnosis was quite a long protracted one. I know quite quickly I had prostate cancer, but it took many months of tests to get the staging, and hence to be able to consider what treatment(s) I was eligible for. I also spent that time trying to learn about the disease and treatments and side effects, in part so I was prepared and ready for the next consultation (of which I had many). It was also my way of coping with the disease, a tad unusual, but those who know me know that I actually enjoy learning about new things. This way isn't for everyone, indeed not for most people - many will want the support of a partner or friend, and it can be very good to take someone with you to consultations, so there's an extra pair of ears to pick things up, and to remind of questions to ask.

When I knew my diagnosis, and I thought I also new enough likely questions I might get, and I had the emotional reserve to support the people I was telling, I did then tell my family including my elderly parents. In some respects I would like not to have told my parents, but as their carer to some extent, I was not going to be able to hide my treatment from them. I do know some patients who decided to never tell their elderly parents, the parents eventually passing away without knowing. I also knew that I eventually wanted to be very open and admired those who turned their cancer into an awareness/education opportunity for others, but I wasn't yet ready for that.

Before my radiotherapy, I joined a couple of support groups, a large one conveniently near my parents, and the hospital one which was great for info on the local treatment protocols (which vary considerably between hospitals). I hadn't thought I'd get much from a support group, but I was very wrong, and quickly made new friends, who were a really great source of support at this time, when I hadn't yet told my existing friends. I didn't need any emotional reserve to talk with others who where in the same situation, but for the most part further along their journeys. In retrospect, I should have joined a local support group much sooner.

When I finished my radiotherapy, that was the point where I stuck a post on Facebook, restricted to just my friends, saying I'd got prostate cancer and I'd just finished treatment. I was well aware that people can find they lose friends when they tell them about cancer, on the whole because the friends don't know how to react, and the person may not realise their friends might need support as I said earlier. I didn't want this to happen, and telling people you've just finished treatment (if you're lucky enough to be in that position) is less likely to result in losing friends. The response I got was amazing. I did notice a couple of them might have struggled with what to say or how to deal with it. When a group of us met up for lunch as we did occasionally, I would take the opportunity to joke a bit about the hormone therapy or something like that, and that seemed to ease them, but don't just talk about cancer - that would make you boring and wasn't why they were your friends to start with.

Going back to what I said about wanting to be fully open, that still took me a bit longer before I was ready, although the reaction from telling friends was quite a confidence booster. I think I picked an anniversary of my original PSA test or diagnosis date, and posted a public article about it in a local Facebook group, advising men to get themselves PSA checked to make sure they pick up any disease as early as possible, and i was happy to talk with anyone who wanted to chat about it. Again, a great reaction to it.

Children are a special case. I don't have any so this was not something I had to deal with. If you do have children, they will quickly pick up that something's going on. If it's being kept from them, they may think this is something to do with them, or even something that's their fault. So you don't really have an option not to tell them. Macmillan do an excellent book on how to talk with children and teenagers when an adult has cancer, which talks about what they'll understand at different ages, and how to tell them.
Talking to children and teenagers when an adult has cancer

Hi Chris. I joined this forum soon after my MRI scan back in January and the help and support I’ve received has got me through some very dark times. My cancer was confirmed after biopsy only last Friday so it’s all a bit raw for me at the moment. 
As a husband, friend, father, son or brother I had always been in the support role, then suddenly I’m facing cancer and feeling very very vulnerable! 
You say you don’t want to burden your friends or family which is understandable. However you could look at it from a different perspective. 
If you were the good friend of the person going through turmoil, which you undoubtedly are, wouldn’t you want to help in anyway possible?

Wishing all the best Chris. Hope the treatment goes well. 
Daniel

Hi Chris. As you say , and others echo, it's all a personal choice.

Personally I wasn't shy in coming forward and telling friends and family.  Although, I did learn early on that you need to pick your moment as its as big a shock to them as the whole thing is to you.

I had a few reasons for sharing.:

1. It's not me who has cancer it's 'we'. My wife is going through this as much as me and its only right friends know so they can support her.

2. Your life has just changed  and in a massive way. The meds will throw all sorts at you. You just aren't your old self.  So you may need people to accommodate that change.

3.i never wanted pity. But I do want people to understand.  Turns out having cancer is tricky!  So understanding what you are going through is helpful.

4. I especially wanted all my male friends to know so I could encourage   / nag them to get a PSA test!  I wouldn't wish what I've been through the past 7months on anyone.  So, if you help one person get diagnosed early that's fantastic.

Just my personal thoughts and I wish you all the best.

Andy

Thank you for the response.  I find the phrase "trouble shared is trouble halved".  That one is new for me.  The only support  I need is the group interaction from others headed down this same trail.  Here's a phrase: it takes one to know one.  Forums such as this and people such as you I feel open to hearing the struggles and success of this predicament we are in. 

Brian  Thank you for your insight.  here is a similar coincidence.  The first person I shared this with was of course my wife.  But the second person was a good friend of mine. we have a once-a-month breakfast thing.  He noticed I that I brought my own green tea bags instead of the usual coffee offered by the restaurant.  He chimes in "Green tea, huh?  Anything to do with prostate concerns?"  And I just spewed my whole story pout to him.  And he shared a similar issue: he is on a careful observance - elevated PSA at this point.  We are not alone... 

Thank you Andy.  Just telling your story helps me understand that this is indeed a complicated issue for some of us.  I will look at this book suggested: though my sons are in their 30's now I can often gather some insights.

Thank you DanielH  Perhaps you have a good point: look at this from a different perspective.  I just seem stuck in a rut with this aspect of this disease.  I too am the father/support role model.  And it's my 2 kids (in their 30's) who concern me the most.  I am the single Dad that raised them through thick and thin when their mom passed away at an early age.  maybe that is the perspective?  

Thank you Andy  I like your choice of words "pity".  I too just do not want the basset hound eyes upon me.  That would make me feel like the walking dead: and I am trying to steer clear of that.  One thing that has helped to stay in the land of the living: a plan I have this summer of a 2 week excursion into the wilderness.  It is a favorite pastime of mine to hike 100 miles or more along the Pacific Crest Trail here in California.  I think of it as an acceptable escape plan to grasp a renewed perspective...