Hi Tony

I'm sorry to hear that you've been advised you will need surgery. I've had a good look through the forum but I can't see that we've any gentlemen on the forum who have mentioned having this type of surgery.

I've had a look and I can see that Macmillan has a penile cancer group on their forum so it may be worth posting there to see if you're able to connect with others. 

I also wanted to signpost you to an organisation called Orchid who offers support and information about male cancers and also to The Bladder and Bowel Foundation. It may be that one of these organisations is able to help you connect with another man who has had this surgery. 

It might also be worth speaking to your clinical nurse specialist who may have some connections. 

If you'd like to speak to one of our team of nurses for some advice and support you're most welcome to give them a call. They're available Monday to Friday from 9 am to 5 pm on 0808 800 4040. 

I hope this helps in your search and wish you all the best for your surgery. 

Best wishes, 
Jenn
Cancer Chat moderator 

Hi Tony

I'm sorry to hear that you've been advised you will need surgery. I've had a good look through the forum but I can't see that we've any gentlemen on the forum who have mentioned having this type of surgery.

I've had a look and I can see that Macmillan has a penile cancer group on their forum so it may be worth posting there to see if you're able to connect with others. 

I also wanted to signpost you to an organisation called Orchid who offers support and information about male cancers and also to The Bladder and Bowel Foundation. It may be that one of these organisations is able to help you connect with another man who has had this surgery. 

It might also be worth speaking to your clinical nurse specialist who may have some connections. 

If you'd like to speak to one of our team of nurses for some advice and support you're most welcome to give them a call. They're available Monday to Friday from 9 am to 5 pm on 0808 800 4040. 

I hope this helps in your search and wish you all the best for your surgery. 

Best wishes, 
Jenn
Cancer Chat moderator 

Hi Tony,

I'm a penile cancer survivor - https://knob.blog if you're interested in the whole story!  I've had surgery on my pelvis to remove lymph nodes, and extensive groin surgery.  I'd also recommend the macmillan penile cancer group for connecting with others in a similar situation.  There are a surprising number of us!  I'm only 41, so penile cancer was a bit of a shock to me too!  (orchid are also brilliant)

Jon

https://knob.blog

Hi there, the primary cancer is in the lower part of the rectum and a real pain in the *** lol. The secondary cancer formed in the route of the penis for *** sake !

Thanks for the advice the operation is near the end of the month.

Hi there

I’ll  state at the start that I’m not a man-sorry- but I have had a total pelvic exenteration, so I do live with 2 stomas and have had everything in my pelvis removed. It’s not too common a surgery so it may be hard to find others who’ve had it done.  What I will say as a general thing is that this is tough surgery with a tough recovery. You will need a lot of support after the surgery and will be very weak and tired. I had my surgery last March and have never once regretted it, despite being a double bagger! Good luck with it. 

Hi there, thank you so much for the reply !! I'm due this op on the 23rd.

Well done on going through with the op. It sounds very scary .

What sort of support are you talking about ?

Do you have any tips for recovery.. some dos and don't lol.

I'm very sorry to ask these things .. it may be silly of me to ask.

Thank you

Tony

It’s very natural to be scared....it’s huge surgery. I mean help at home when I talk about support. I was in the high dependency ward for 2 nights after the op, then 12 nights in hospital. 

I was utterly exhausted all the time and getting around at first was very difficult. I was also vomiting a lot, which contributed to me being weak. Some days I simply couldn’t even get in the shower or to the bathroom to brush my teeth-my partner gave me bed baths and also brought a bowl so I could brush my teeth in bed. I lost my appetite and lost 50lbs in weight. I thought it would never get better but it did! The first 6 weeks were incredibly hard, and then I started to feel better and got stronger every day. My appetite came back and I was able to get up and shower by myself. 

Take it very easy when you get home..rest a lot and don’t try to do too much. I still get very tired sometimes. Keep yourself well hydrated..drink plenty water. Be careful what you eat at first...I’m assuming you’ll have a colostomy? Certain foods were very hard for me to deal with initially...cheese was one, bacon was another and I still avoid any kinds of nuts as they give me tremendous pain. 

Nowadays, a year on, I can eat basically anything, apart from the nuts! My life is basically as it was before, except for having the stomas to deal with but I don’t mind them because I’m still alive! I don’t have pain, and all of my cancer was removed with clear margins. 

The main thing about recovery is to rest and don’t push yourself. Stomas can be difficult to manage at first, unless you are lucky enough to find bags which are suitable right away. I didn’t, so had many leaks and wet beds. Invest in  a wateptoof mattress cover. It’s a godsend. But accept that leaks are a part of life and don’t let them get to you. I have a really good system for managing my stomas now, and leaks are a thing of the past. Keep a bucket by your bed-I know quite a few people who’ve had this op, and they all suffered with vomiting. It’s hard to move out of bed quick enough so a bucket is handy! 

Rest, rest and rest-your body will have a lot of recovering to do and a lot of internal healing. I don’t mind any questions-it’s difficult to find people who’ve had this surgery. But I’m out the other side and doing really well! 

Thanks for the response once again.. what a journey this has been.

I'm going to try and switch to a positive mindset LOL .

*** cancer , let's do this !!

I've got a couple weeks today now of shielding left until the actual op and I'm thankful to have 2 of my sons with me for the meantime.. trying to convince there mum to let them stay with me but its maybe unfair on them to miss there sports.

I have a large garden so I'll try and keep myself busy between that and the house . 

I'm single so I'm not sure if I'll need nurses to help look after me or I could ask family however I'd be embarrassed to do that.

Thanks again xxx

Hi Tony

A positive mindset definitely helps! When I came out of hospital I had regular visits from the stoma nurse, and also from the district nurses, who were keeping a check on my scar..as I had a little bit where the staples were which was weeping. They just put dressings on and kept an eye on it, but there was no infection so all was fine. 

Based on my own experience, I would not have been able to cope on my own with no help when I got out of hospital. The exhaustion was unreal, and it’s hard to move about. If you can have someone help you out, I’d really recommend it. This is such big surgery, please don’t underestimate the need for you to have some support, especially in the early stages of recovery. xx

Hi there,   

                 I hope your well. I am so happy I took your advice and I allowed my family to care for me. I was in intensive care for around 6 days and had 2 blood transfusions. On top of the extenteration and the urology work I had to get emergency chrohns surgery as well . I now have whats called a wet stoma so 1 stoma doing both jobs because my chrohns had damaged a lot.. I also had 2 muscles removed from my right leg and used to fill the void from the organs that were removed.

I really struggled in intensive care, I couldn't sleep as I was being checked and turned every hour and my heart was giving them cause for concern. I had the pipe down my nose a d throat that was driving me insane lol and worse when I was moved every hour. I'm maybe overly sensitive but all the drains and things attached and stitched to me really irritated me. Thanks to the nurses who tried to calm me I will be forever grateful . I'm sure I was on the epidural for 6 days.i vomited a lot and could only have small sips of water so I was very frail.

High dependency was a lot better as I could get up walking about. Part of me wanted to escape the first time I stood up lol .the heating was always on and cold water and anything cool was nearly non existent. The other men in my room all complained from the same thing so it wasn't just me and we were  certain prisoners get better food.we were all pretty traumatised and it's a shame and possibly due to the effects of covid.. The surgeons did a fantastic job and I'm very thankful and I'm also thankful to the  nurses that made a real effort to try and make us more comfortable.

I left hospital 2.5 weeks in and it was great to get home. My family got me a bed that raised in 3 areas and I think that really helped. My mother and sister spoiled me and I started to put weight back on.

I got to feeling I was OK and possibly overdone it just there so I'm now knackered again. Hopefully it's just a 2 day thing.

I've had a few leaks with the stoma and I haven't met a stoma nurse since I left hospital around 6 to 7 weeks ago but I'm hoping when they get round to seeing me they can help rectify this. I have had 1 night time accident which wasn't great lol.ive also had accidents where quite simply I have forgot to put the cap on or small folds have developed which when lying down seems to leak.

I'm very thankful to still be here and to see my kids grow up. I think cancer has taught me many things and in some sense it may have saved my life . Time is so precious. 

I'm sorry to have complained a lot there.  

Hi Tony

Very pleased to hear you have got through your surgery and are home but you have certainly been through the mill! The bed sounds like a wonderful idea-I found it very difficult to get in and out of mine as it is quite low. I’m very surprised you haven’t seen a stoma nurse at home. Stomas change a lot after surgery as things settle down, and it can be trial and error finding an appropriate bag which suits and doesn’t leak. What suits you at the start may need to be changed to a different type and the nurses can help with this and ordering supplies for you. Folds and creases in the skin are a prime cause of leaks, but a different type of bag should help with this. I’ve had more accidents than I care to count over the past year, and even in January of this year which was almost a year from surgery I started having terrible problems with constant leaks from my urostomy, which meant getting no sleep and constant changing of me and the bed! I phoned my nurse, she came round and I got started on a new kind of bag. This was a game changer for me and I haven’t had a leak since. They have so much experience and have such good advice to offer. I hope you manage to see one soon who can help. 

Take it easy and look after yourself-your body has a huge amount of healing to do inside and you need to try not to do too much at once.  I still get very tired if I do that!