Supporting hubby who's just been diagnosed with penile cancer

Hi Ck14 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I have an inkling how fed up your husband will be feeling as I too had just come to the end of my 5 year check-ups for melanoma when i was diagnosed with breast cancer!

I'm sure you'll find the other members of this group will try to answer any questions you have and will be happy to share their experiences with you.

It would be great if you could pop something about your husband's latest diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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Hi, my husband was diagnosed with and treated for stage 3 penile cancer in 2020.  He had 3 rounds of TIP chemotherapy followed by 5 weeks of radiotherapy and chemotherapy.  The TIP chemotherapy has left him a completely different person, it was brutal and he coped well but has left him a shell of the person he was.  He had a partial penectomy with right lymph node removal but this was found to be necrotic and had spread into his surrounding tissue.  We live from scan to scan and are currently undergoing biopsy and further scan for new nodal changes.

there doesn’t seem to be any support available for men in this position and certainly nothing for wives and partners.  I have had to effectively give up my work and life to care for hubby and feel quite isolated. He has just turned 64 and I have just turned 63.

Are there forums for spouses of this kind of cancer where we can share our thoughts and experiences.  

The only support I have come across for both hubby and yourself is to talk to McMillan direct or this forum which is limited for yourselves as trying to find someone who is going through what you both are going through will be difficult. 

I think contacting McMillan direct is your best option, my experience of McMillan is that they are very good.

Millan will help you and they can look at financial support as well as emotional support and my advice is don’t go through this on you own.

You might want to try Orchid but I have limited experience but they are a cancer charity for men.

This is a very rare cancer and what your husband is going through I don’t think many men and wives or partners will have been through.

I got a lot of support from my specialist nurse at the hospital as well as McMillan at the hospital they had an open office you could just walk into.

let me know how you get on, you might have already tried some of these but try them again.

i am here if you want to just talk, there is help out there you just have to find it.

I also hope someone on this forum contacts you with similar experience as this will be invaluable.

Robert

Hi Duf23 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

Over one year on and likewise we go from scan to scan as it's not healing.  SIL died at Christmas too as her cancer had spread to her nervous system which knocked my OH for six.  We've got some good stuff planned though over the next few months so counting ourselves lucky and our grandchildren keep us young too. Don't have any advice unfortunately, I just feel numb most of the time. Hope it all works out for you both x