Penile Cancer

Hi edouble 

Sorry to hear diagnosis and wishing you the best for your scan.

Sorry not going to be much help on diet side, I was advised losing weight would help with my cancer, which will admit I was not very good at that time, due to being reasonably active before my operations, with my work, and not much activity afterwards so put weight on, which then meant I got diagnosed with diabetes, so then joined slimming world and have lost almost 2.5 stone, and feeling better for it.

My husband was diagnosed with rare squamous cell penile cancer in August and had the first op followed by two node removal. We have just been told that one node showed cancer and they are now recommending that all groin nodes one side are removed. He is debating whether to have the operation as he fears the likely lymphoedema. 

I wish you the best and can only hope your stress and anxiety do not affect your Christmas too much.

Hi louwales

With my original operation I had lymph nodes removed to test for cancer, as with your husband, mine came back as positive on left side, right side not, had left side nodes removed February 2023, had a vacuum bottle to remove fluids for a couple of weeks, and also had to have fluid drained a couple of times in the early stages,  but have not had any problems with fluid build up since, also due to cancer returning, with the last operation in September 2023, I had right side nodes removed, had no drainage from this side at any time and still no fluid build up. Hope this helps your husband with his decision, I know I am glad mine were removed. But we are all different and react to things differently. 

Unfortunately the lymph nodes are a way for the cancer to spread to other areas of the body. 

Thank you, that's very helpful. He's very concerned that lymphoedema will be an issue as we were told it was about a 50% probability. I will pass on your information and see if it helps him.

Hi Lou, I can't offer any advice on the node removal as my husband's were clear. But it is just so good to hear from others as this is such a rare type of cancer. My husband is due to have a glansectomy mid January and I think just knowing others are going, or have gone through the same is some comfort as we know we are not alone. His consultant, at Good Hope, is excellent and we have always just followed his advice. 

Hello. I have just had my left lymph nodes removed 3 weeks ago, had drain in for 3 weeks. Was told yesterday that 25/40 nodes were positive. Starting chemoRadiotherapy in New Year. 

Good luck with whichever way he decides to go 

All the best with your treatment too.

Hi all , update on my situation, I had a partial glansectomy and foreskin removed with penile reconstruction,on the 6/12/24. Followed by 6 days in hospital , yesterday the 31/12 received a phone call from St George’s urology to tell me that after a meeting with pathology that I haven’t got cancer and the cells found were linked to abnormal crohns cells . Which I do have Crohn’s disease, and they were well aware of. So obviously very pleased with the outcome, but now bitterly disappointed with the original diagnosis. I hope you are all well. Kevin.

Hi. Update on my situation with my cancer, I had partial glansectomy foreskin removal and penile reconstruction on the 6/12/24, 6 days in hospital . Obviously waiting for my outpatient appointment to see what was what, which will be next Tuesday 7/1/25. Yesterday received a phone call from St George’s Hospital to tell me that after a meeting with pathology that it wasn’t cancer and was abnormal cells linked to my Crohn’s disease, which they were aware  I had. Joy of not having cancer overwhelmed a bit by wrong diagnosis. All the best for the new year. Kevin .

Hi kevm59.

That is great news for you, must be such a relief and great way to start the new year, hope you have/are recovering well from the operation. All the best for the future William