Penile Cancer

Hi, my husband (66) was diagnosed last October. He had a full body scan and lymph node biopsy which showed it had not spread so far, and has had 4 surgeries with minimum intervention, but today had the news that he now needs a glansectomy. We are both upset about this, but obviously it is better than the alternative. I don't think that this type of cancer is talked about enough, unlike cervical or breast cancer, and therefore people feel isolated. I would love to hear about other people's experiences and to offer moral support to others. This is not a quick journey, and a very difficult one for the men and loved ones involved. I am happy to share my experiences as we progress, surgery is planned for mid January. 

Hi William, 

thank you for your kind reply.

Im so sorry to hear that you’re still going through all of that. I really hope you will win this battle very soon. 
I unfortunately couldn’t find your previous posts. 

I have a question if its ok. When it spreads to lymph nodes, what do you do, do you need to remove them or chemo may be also an answer? Or both? I know it all depends on the severity of the case etc. Our doctor said he would remove the nodes if it had spread. I know we’re not there yet and hopefully wont be at all.  But just good to know if there are other options and what other doctors say/recommend.   

Thanks. 

Hello LouAnn, 

Im so sorry to hear about your husband. I totally agree that this type of cancer is not talked about enough. And it’s true that people may feel quite lonely in this terrible journey which is yes long and very emotional, lots of unanswered questions and waiting. Not mentioning the surgeries and recovery. I would like to help people to be more aware. There should be no shame in talking about it. Cancer is cancer and it doesn’t matter where it is. It is a huge hit for mental health as well as your life turns upside down.
Our surgery is tomorrow, 4 longest hours. I will message updates. And wish everyone in this group to be strong and know they’re not alone. 

I will be thinking of you tomorrow and hopeful that the surgery goes well with no compications. If you feel able to share surgery experiences it would be gratefully received. We are currently at the 'getting our heads around the implications' stage, with the surgery planned for January 16th. You too are not alone

Hi, when had 1st operation to remove head of penis, had biopsy of left and right nodes taken, left one came back as cancerous,  so was advised to have them removed, which was done about 2 months after 1st operation, but because the cancer had spread to nodes it has higher chance of spreading, so hopefully your husbands haven't. Unfortunately and rarely my cancer came back approx 8 months later, so had total amputation of penis, the scans after that was when they discovered it had spread to my lungs, that was when I first had chemotherapy, and also on an immunotherapy trial, which has been quite successful to date. Still here over 2 years after original diagnosis. 

So to answer your question is I was advised to have the lymph nodes which had cancer removed, did see oncologist at about same time his recommend no chemotherapy at the time.

Hope that helps, and best of luck for your husband. 

All the best William. 

 Just read that your operation is for tomorrow, wish you best of luck for that and no complications, I know from mine, I had to have bed rest for 48 hours after due to skin graft to head of penis, as I was use to being active at the time it was the hardest part, but was relieved that the cancer had been removed, I had very little pain afterwards, but that varies from person to person. Will just say after the operation if there is anything you are worried about don't hesitate to contact the doctor/nurse's to discuss. 

Thank you for sharing your experiences Willamp, you are an inspiration. I have been quite overwhelmed by my husband's diagnosis and the progression to now to needing a glansectomy after 18 months of trying minimalist surgery. I'm unsure how to best support him, we are talking about it and I am reasuring him that we are in this together, but I wonder if I do more. Do you have any advice? 

Hi louann.

Sounds like you are doing the best thing you can regarding supporting your husband,  just knowing that you are there for him and in it together is one of the most comforting things. I know it was for me. I would say having loved ones being supportive and staying positive is what has got me this far.

Sounds like you have had a long journey to get this far, mine was fairly quick, from going to GP,  to seeing consultant was less than 2 weeks, and then 26 days until operation, and then 2 months until lymph nodes operation. 

Thank you for your reassuring words William, they are gratefully received. I genuinely hope your recovery continues in a positive way. 

12-13-2024 I received diagnosis of rare Squamous Cell Carcinoma of the Penis.  I will receive a Pet Scan on the 24th Christmas Eve.  I am trying to fast and change my PH of my body.  I don't see much information on diet.  Please look into diet change with me. This is a difficult journey would love to go through it with others. God be with us all.