Hello Desmut

I'm sorry to hear about your husband's diagnosis. It's understandable that you're both feeling so anxious about this news and I hope that the Consultant is able to offer some reassurance when you speak to them. 

Penile cancer is a rare cancer but we do have a few members here on the forum who have had this diagnosis. I'm tagging in [@Harry2]‍ to my reply here as I know that he had penile cancer a few years ago which was successfully treated and I'm sure that he will pop by to say Hello! and share his story with you soon.

We do have some information on our website here which may be of help but you're most welcome to give our team of nurses a call. I'm sure they will be able to offer some advice and support whilst you're waiting on the next steps with the Consultant. If you'd like to speak to them they're available Monday to Friday 9am to 5pm on 0808 800 4040. 

I hope this helps. Do let us know how he gets on. 

Best wishes, 
Jenn
Cancer Chat moderator 

Hi Jon, thankyou for your reply. It's so very helpful to speak to someone else who has gone through it and has come through the other side. We are awaiting to see a specialist in Birmingham for next steps. They havent given us a staging yet. A ct scan has shown groin lymph nodes are slightly up so is awaiting further biopsies. This could be as he has had recent operation of removal of the wart and curcumsicion in that area that they are slightly up but of course we dont know until the biopsies are done and a bone scan has also bee scheduled. My husband is also called Jon and I have given him the link to your blog. He is currently reading it.

We are just waiting now but of course worried it has spread. We have been told that although aggressive it is a slow growing cancer. 

I really thankyou for getting in touch as its been so difficult to speak to anyone who has been there. 

Demelza 

Hi,

Don't despair, we have loads of brilliant surgeons in the UK and when it's caught early there's a really high chance of cure.  We have a couple of world leading networks for penile cancer too.

It sounds to me like it's local to just that area and they're talking about using a chemotherapy cream to kill those bad cells off.

I was diagnosed with penile cancer in 2019 aged 40 and had 5 ops to remove a couple of tumours and complete the staging.  I write all about my journey and everything I found out at https://knob.blog

Jon

I hope he enjoys reading it!

This all sounds pretty positive to me, and that you've caught it early.  There are loads of reasons for lymph nodes to be enlarged, especially in the groin.  The inguinal nodes do loads of work, and even an ingrown toenail will light them up.

He'll probably have an ultrasound led biopsy, where they put a long needle in and scrape a bit of tissue away before sending it off to the lab.  If he's really unlucky, they'll send him for some nuclear medicine.  He'll read about that on the blog with his legs crossed.

If there's any sign of disease in the nodes, they might whip them all out.  Or, if there's only a little bit of disease, it might be treated with chemo and radiotherapy.  Every time they find disease, they work up the body until they stop finding anymore.  That completes the staging.

I know it's hard, but try and stay positive - it really does sound like you've caught it early.  We're pretty brilliant at cancer care in the UK.

J

Jon

https://knob.blog

Hi Jon,

I'm really glad you enjoyed reading it, and most importantly that it helped you!  When I was first diagnosed, i could only really find dry boring medical stuff.  So, I thought I'd write something that I'd have wanted to read when I found out I had penile cancer.

It means so much to me that it's been valuable to you, so thank you.  Feel free to share the blog on your socials if you think anyone might enjoy reading it.

I'd agree the bone scanning thing does seem a bit odd, especially if your disease hasn't even spread to the inguinal nodes.  Typically they just work up the body until they stop finding disease.  But, I guess all doctors have their reasons...

Let us know how you get on!

Jon

https://knob.blog