Penile Cancer

Hi Williamp  it is excellent news only overshadow by a wrong diagnosis, wish everyone well for the new year on there cancer journey. Kevin.

1. Hi all . Just a quick note about my journey. We all put our trust in these specialist to find out that they do make mistakes, so just be aware on your journeys ask plenty of questions. Good luck. Kevin.

Hi 

Hope you’re both doing ok.

Not sure my own ongoing experience will help but if it does even a tiny bit it’s worth it .

I was also  diagnosed with SCPC last Feb (N3 as already in right lymph nodes ) after what was presumed a groin hernia ended up a large tumour . It had burst through my skin too by April , had spread from penis ( what I thought was a small scar!)  Anyway , they couldn’t do chemo /radio and didn’t think could operate due to size .

Thankfully they did surgery in June at the Christie , removed  tumour without doing a huge skin graft which only had 15% chance with almost guaranteed sepsis ( if they’d done graft ). They were going to do full penis head removal but did a “ partial “ one/circumcision . They also did lymph biopsy /removal on left groin but was clear . Though I didn’t need it glands reconstruction can be very good indeed giving the look of a smaller uncircumcised penis . I healed fully after about a month then chemo etc .
Lymphedema
I didn’t get it in left side and only in right as they removed loads of nodes with tumour so expected it. 50/50 probs about right but it’s likely lower end chances id say .With excercise it’s more than manageable . 
Sorry to waffle on but best of luck to hubby for his Jan surgery . 

Thank you for your response - that is very helpful. He has decided to go for the full node removal and we are just waiting for a date from the Christie.  All the best to you.

Hi, my husband is having his glansectomy on Thursday so I will let you know what happens. We do know so far that he will have the catheter in for 2 weeks, but we just have to wait and see how his recovery goes.

Hello CancerFighrer25. I am very sorry to hear your news. I was diagnosed with Penile cancer in June 2024, had full circumcision done 2 weeks later. Went in for lymph node biopsy in November but ended up doing full left side lymph node removal.

Stage 3 cancer now confirmed and I began 5 weeks of chemoRadiotherapy yesterday (13/01/25).

You and your family have a tough time ahead but with the proper treatment and the fighters mentality, that you obviously have going by the name you chose, you WILL GET THROUGH THIS.

One piece of advice I would like to give, even though I know it's difficult, but please just take one step at a time.

I cannot answer your question about recovery time for your particular operation, but any operation in that area is going to be a month or so.

Good luck and God Bless 

Hello, I hope all going well. I have just seen this site and saw your question and the reply to it. Sorry not many responces. I am 53 and two weeks ago had a a partial glansectomy and right inguinal node dissection.  I am also awaiting biopsy result on left inguinal sentinel node to see if has spread to that side. Scans suggest it hasn't spread elsewhere, so fingers crossed in a few weeks I will be cancer free! I am at St George's Hospital forball this and feel in good hands. I am taking recovery very seriously, and am eating more whole foods, fruits, veggies. I have purchased air Co.pression leg devices to help lymph drainage to prevent lymphodema and have booked a lymph massage locally for tomorrow. I really want to get tye ballance right between exercise and rest - not easy! Hopefully the drain comes out today, following catheter out last week, which was such a relief! No one told me about morning glory and the catheter! Something I wasn't prepared for. I also see if the skin graft from mouth as part of reconstructive surgery has taken today. When I write this all down it is a bloody lot that has taken place! No wonder I am up and down, emotionally in this instance!!! A sense of humour about it all is a must, as is telling people at your own speed I think, as there is so much to process. I try to be as positive and grounded as possible about it all, taken energy from small things and small wins and enjoying simple things like watching TV with the children, hearing the birds sing. I also really try and check in with my wife, who has been utterly amazing. This is and must be taking a toll on her and I try to acknowledge that often, the ripples of this thing travel far. Anyway, feels quite cathartic to get this down and hope it might be useful in some way, maybe! I might start my own journal as an outlet and a way of focusing the nebulous nature this whole period in time seems to take for me sometimes. Good luck all!

Hope your treatment’s are going well , you sound like you had a similar diagnosis and trajectory to myself , though I got diag stage 3 from the off and they did multi ops in one , tumour groin( had burst through groin) / loads of right side nodes, partial gland removal and left sentinel biopsy /removal. Had 5 months chemo after ended in early Dec but can’t have radio due to other issues . Your chemo /radio sounds intense so hopefully clears this . 

Hi, is your consultant dr Stevenson at good hope? I’m not sure how to PM on here but would be good if you could message so I could tell you our experience 

Hello, no my husband's consultant is Dr Ho. He has been amazing tbh, really tried everything to minimise invasive surgery. Recently he went in for a full glansectomy but when in surgery Dr Ho felt that a partial glansectomy may be sufficient. He was progressing well after the operation but when he restarted his blood thinner medication he ended up hemorrhaging from the graft site. We spent a day at Heartlands but it was all sorted. We are now waiting for the histology results and hoping he won't have to go through another operation.