Just been Diagnosed with penile cancer !!

Dear DeeGee, I am 4 weeks after surgery for penal cancer and now starting to make progress but the journey is not easy, pain management, infections, catheters will be your life for a little while but it’s all better than having a tumor. Mentally healing is just as important as the physical healing and I would suggest you see a therapist maybe as well as talking to McMillan. If you have any specific questions just text me.

Hi thankyou for replying ,don't know were to start there's so many things on my mind ,if you don't mind you don't have to tell me but what type of surgery did you have ,this seems to be one of my main questions.  How was your recovery after surgery.  I just seem to think it's only me that's going through this and that all the exits are closed . My visit to Leeds can't come quick enough I just want to get forward and get on with things . Cheers DeeGee

1. Hi DeeGee, My tumor was on my glans so II had a glansectomy with a skin graft so I had to nurse 2 wounds,  surgery went well but in my case I had catheter issues, wound infections and my bladder would not go back to normal. However most of my issues are progressing well. I had my surgery 9th March 2023 just over 4 weeks ago.

Penal cancer is rare only about 700 people a year get it compared to say prostate or breast cancer where 22,000 get it, so it’s understandable why you think it’s only you (and me) who get it.

I am fortunate I am surrounded by family who have supported me, Sunderland hospital have also been great I have a specialist nurse, catheter nurse as well as cancer coordinator who I can phone anytime. Sunderland is a specialist urology centre one of 9 in the country I guess Leeds is one of the 9 as well, you should have a specialist nurse dedicated to you.

If your surgery is similar to mine you could be back to work within 4 to 6 weeks all going well, just remember no matter what you go through it’s better than having the tumor.

If you have any further questions don’t hesitate to send them.

Regard's Turbinia.

Hi mate thankyou for replying  I think I'm down to have a penectomy which is really frighting me to death ,but your so right it's better than living with the Tumour what the out come. I just wish I'd been diagnosed back in June when I first saw the GP . I hope your well and on the right track back to the best of health . Its nice to know someone else as been through this horrible road in life . At first I felt embarrassed by what I've got but I've come to terms with it now . 

Cheers DeeGee 

Ps Thanks again for listening 

I was in a similar situation, I was first seen in June last year and given some cream which worked but it came back again and I think the GP forgot to refer me and I lost a month. Then it takes weeks to get a consultants appointment and then by the time you get a biopsy it takes several more weeks. I also wished I was diagnosed earlier and it’s easy to get angry because you are now in a difficult position.

However, you need to let this go and look forward as we have agreed if you don’t get the tumor removed then you don’t live very long.

A partial or total Penecomy will save your life and once it is done you can start living your life again, you can choose who you tell, I have only told close family and very good friends and they have been very supportive.

if sitting down to have a wee is one of the things I now have to do well I can live with that.

You are right the embarrassing stage doesn’t last long, you eventually I was happy for anyone to look at your penis as long as they are trying to fix you, you will probably never see the nurses or Doctors again anyway.

keep positive remember anything is better than being killed by the tumor.

How did you get on with your first consultation yesterday.

Hi hope your OK, yes went Tuesday met the consultant very nice bloke ,had a very positive conversation with him all about the operation and the procedure I go through . He examined me and said he thought it could be a part penoctomy but that could change when they actually get into the operation.  He also mentioned it could have spread into my Lymph Noods on the right side so I've to have another mri scan to see if that's where it's spread to. So 10 to 14 days for a scan and hopefully  4 weeks to operation.  I also met my personal nurses who seem great with lots of information and available at any time .for anything I need to know. So I need to get the op out of the way and let the next journey begin . 

I am glad you are a little more reassured and you seem to have confidence in the consultants team.

I used the specialist nurse a lot as I have had lots of issues with infections, catheter and bladder issues.

I now have a date for a Lymph node biopsy as there is a chance the cancer has spread into the Lymph nodes.

if you have any questions don’t hesitate to message me.

Cheers its good to talk and fingers crossed everything is OK, you've been through enough . Keep intouch we can do this mate ,Take care thanks for your reply 

Best Regards Dave 

Thanks Dave, my name is Robert.