Hi David2

Welcome to Cancer Chat.

I hope that someone in a similar position sees your post and can let you know how they are faring physically and mentally.

It's very kind of you to offer support to others who are starting their journey with penile cancer.

Best wishes to you,

Jane

Thank youJane, 

As it is so rare and quiet hard to disscuss i am not holding out much hope - but maybe just maybe one of the few hundred whom are diagnosed will read this and think yes i can concur. 

Cance diagnoses is a trerrible thing , i was told no its not cancer , no its not cance , oh yes it is and its spread to your groin and pelvic nodes - you will be operated on in a couple of weeks and we can save your penis,no we cant save anything. At the time all you are concerned about is am i going to live or die so you go with whatever you are told and question nothing. The implictaions dont start until later - propably about a year for me - once all the ops are finished and radio / chemo sessions are behind you and your body starts to recover. Then the questions - why , what and if only... the horror of what has happened , I had cancer, i had penile cancer, i had penile cancer and it had spread, i have had 2 major ops, 40 radio therapy sessions, 8 chemo sessions, - am i a real man anymore now that my thing that makes you man has gone. Should i feel like this, should i not be so uphoric that i am alive. Can i go on like this , what about the future,what about the stress it puts on my family and my relationships,  will it return, will the pain go away, will my mental well being be controlled , why do i feel fine one minute and rock bottom then next, why do i get so fatigued... why do i have trouble socially, will this improve, That said on the positive side - i had cancer , i went through all this last year and was back at work in seven months! Two scans both show no signs of return - is that amazing or what! 

Hi David ..... Just wanted to say hello and welcome you to the forum.  I am sorry to see that you had a cancer diagnosis but so very pleased that your treatment has gone well and that recent scans have showed such good results.  It must be really difficult to suffer from one of the rarer cancers because I would imagine that not only are there not many other people going through the same to talk to, but that the medical professionals also do not have all the answers.  Wouldnt it be a good idea if your team put people in touch with each other for mutual support? Maybe you could suggest it.

A cancer diagnosis is a massive shock - I always think its a bit like suffering with post-traumatic stress disorder - and yet very little emotional support is offered when we are expected to return to our 'new normal' life.  Although I dont have any answers, I can totally understand you  having worries regarding future relationships etc.

It is great that you have offered your support to others - you have been through so much and am sure will help to inspire others going through a similar journey.  Wishing you all the best and keep in touch when you have time x

Hi Max and many thanks for the welcome – I would love to keep this post going so that we have a greater chance of either help another sufferer or just even raising awareness by discussing and improving education in what is actually a very difficult condition.

There are not that many people diagnosed with this condition and you are correct the statistical data is not there so we rely on the experience of the urology oncology consultants who I have to say are amazing – I take my hat off to them – my delay was getting into the system to see the right people as cancer was not initially suspected as it is so rare. The symptoms can be very easily missed or incorrectly diagnosed. If in doubt check it out.

There currently is no buddy system in place but there are people whom can assist and arrange functions for sufferers and healthcare professionals alike - Orchid is the main charity but one ironic point is that a common problem is social interaction after penile cancer which means such events are difficult to attend! That why I think his forum could be a great way to bring issues to the fore and openly discuss -. Another challenge is that most cases are in men over retirement age, unlike myself 40’s, so they may not be so able to connect via web media forums -

Thanks for the warm welcome and I am happy to answer questions or help as and when..

Hi David,

I think you have been quite coragous by posting about this problem. I would imagine not many men would be prepared to talk so openly as you have done, so I appluad you David. I am pleased you have  had  good scans. But was sorry to read your early experiance where your were told it wasnt cancer then it was.

I was diagnosed with prostate cancer over six years ago and have made a good recovery. But I have suffered from Erectile Dysfunction as a result of the hormone therapy. As I am 73 this is not a big problem but it does make you feel less of a man and does affect how you feel about yourself.

I agree things like this need to be talked about, not swept under the carpet so any increases in awarness has to be a good thing.

Take care and I wish you good results for the future, Brian.

Hi woodworm, thanks for the kind words and I am glad things are going well for you. 

I don't feel brave but I do feel empowered by kind comments to do more to raise aweness so the road I have been on can be closed for others. Aweness is so important both for us,our partners and the people we turn too when things are not quiet right.  The symptoms can be easily overlooked or thought to be something else,so any lumps,bumps,tenderness,spotting, sores or itches, get it checked. My life has been turned on head and penile amputation,  radiotherapy, chemotherapy, cellulitis, lymphidema are not great but living and beating cancer is.it's been a  hugely difficult experience for me, my family, friends and colleagues alike. Please spread the word and happy to answer questions. 

Well David2, there is someone here who is just starting his journey and I think you would be the best person for him to get in touch with. Bramble Bloke is about to have the surgery so I am sure he would be delighted to hear from you.

You can see his message here and feel free to respond to him. I've also made him aware of your thread.

I hope all is well for you at the moment and a very happy new year!

Lucie, Cancer Chat Moderator

Hi Lucie, 

i have replied and offered any assisitance i can give.. thanks for letting me know .. 

I had clear scans in Novemeber and back again in March , so far so good. Back to work full time and enjoying a few holidays - been a year this week that i finished treatments - not an easy road but together we can be stronger! 

thansk and kind regards David 

Hi David, I see that you have not been active on the forum recently, but just thought I'd let you know that I was treated for this very rare cancer last year. I have been more fortunate than you as I only needed minor surgery and my lymph nodes are clear. Just hoping it stays that way. Best wishes, Harry.

Hi Harry - still around but little activity on here to be honest. Glad things are going well for you .. i am nearly three years  into my surveilence and its all ok. We have a thread on FB if you have access to this. We have a small comunity from around the world a more local too.. you would be welcome to join. 

let me knwo if you have a fb account. 

cheers

david