Anxiety overload

Hi I am Ro

Hi I am Robert I am 63 and a survivor of Penal cancer. You are right no one talks about it unless you have this cancer it is very rare only about 600 in the uk compared to breast cancer and prostate cancer at about 20000.

Also this forum is the only self help group I have found and has been a life line for many. I was diagnosed late last year had my operation in February  23 and eventually discharged in June this year and the journey is very frightening but the survival rates are very good.

I had a glansecomy with reconstruction. I am happy to answer any questions, I am from Durham and was under Sunderland urology hospital who were excellent.

Robert 

Hi Robert 

Thank you so much for replying. 

We go on 16th for a consultation with an Andrology Consultant.  I'm assuming the first steps will be a biopsy and scan? Are they likely to do this on the day? My husband has a fungating mass which covers the whole of the glans penis (their words) and he has been told that it is likely there will be some kind of removal and if so then reconstruction.  I can't imagine how he must be feeling because he doesn't really speak to anyone about it and is very calm.

I think he's more worried about the effect this will have on our sex life whereas I could care less about that. I just want him well.

I suppose I've reached out hoping to understand more about the procedures, recovery times etc. I realise that everyone's journey is different and I'm just so scared.

Yes the first thing they did was a biopsy which is only a day in hospital but it is the wait for the results which is painful.

also my tumour went through many stages from a dry mass, to weeping fluid and then after the biopsy it went into a growth stage. But as you say everyone is different.

Maybe  he will talk to me after you tell him about this forum, even if he talks to me through you, I know what he is going though no one else does unless you have had penal cancer.

He needs to understand that if it is cancer he is about to fight for his life and sex can be sorted out later. My wife played a major part in my journey and by reaching out to find more information you will be a real help to him.

Regarding procedures I can only tell you about my experience and recovery times depends on many variables, my recovery was long as I had multiple issues.

once you know what procedure he is going to have then you can research the detail, if it is the same as mine I can explain the stages.

He needs to prepare himself for the long haul if he has a glansecomy with reconstruction then it took me 4 months from operation.

Robert

I'm just so relieved to be talking to someone that has been through this. You don't know how much help this is.

The only way I got him to actually go to the GP was because his tumour began secreting around 2 months ago which produces a really awful smell which cannot be ignored and so he made the appointment.  Since then he has had an appointment with a Urologist who told him that in his opinion it is cancer. He has referred him to the Andrology Consultant for assessment.  As yet the only test he has had has been a blood test so although I cannot fault the NHS in working St speed, we just want to know what the treatment plan is going to be and how far it has progressed.  I will let you know what happens on the 16th and I will certainly try and get him on this site because he must speak to someone about this.

Another quick question.  From what he tells me the shaft of the penis is red raw and extremely sore, especially when urinating. Although he showed the Urologist and he agreed that it looked very painful, the Urologist did not recommend anything- creams, ointments etc.,, that could help with this. Have you heard of this before and do you have any recommendations? 

Unfortunately my husband wouldn't let me go in with him at that appointment so I couldn't ask. I didn't even know he was suffering this! He was too shell-shocked to ask. I will be attending the next appointment though!!

Thanks 

Lorraine 

Hi Lorraine, the shaft of my penis has not been raw but sounds like he may have an infection of which I had a few. He needs to get treatment for this so I suggest he/you phone the urology dept and tell them it’s getting no better and still in pain or go back to GP. If it is painful urinating then defiantly sounds like an infection.

Once I was diagnosed I was assigned a specialist nurse that I could phone any time, my problems were then much easier to solve and I had many issues.

Also you must go in with him don’t take no for an answer he will very quickly get over the embarrassment once he realises the surgeon and their team is going to save his life. He needs to get used to showing his penis to lots of people sometimes young female nurses they do this every day.

He will be in shock and I hope if it is cancer they catch it early. Seemingly Penis cancer is very predictable it starts in the glans, then goes into the glans tissue then into the first nodes in the groin which he has about 20 I had the first 3 nodes removed and they were clear. I had stage 2 cancer.

There is lots of information around on the internet.

Robert

Thank you Robert

I have spoken to my husband and relayed the messages and he is really receptive to coming on here once he gets his diagnosis and treatment under way.

I will call the Urologist tomorrow to let them know about his discomfort and maybe get some antibiotics. 

I'm definitely insisting on going into the appointment with my husband and he is in agreement as we will be fighting this thing together.   I will update here once we have been on the 16th. I cannot wait for the appointment.  

Lorraine 

Good luck for the 16th and don’t hesitate to ask me any questions any time.

By the way my tumor started to discharge and became smelly I was cleaning it twice a day and bits stated to fall off. I know this is very worrying but you will both get through this together.

 Robert

How did you get on with your appointment on the 16th.

Robert

Hi Robert 

Sorry its been all systems go!  It is cancer and the operation was today. I've just got back from visiting him. He was down for a glansectomy with the graft and circumcision.  I don't quite understand the circumcision part as he had that 15 years ago?

We haven't seen the consultant/surgeon yet so I don't know exactly what this entailed.  If they managed to keep the sensory glands etc. My husband was still pretty spaced out when I visited but he seems to think he won't see the consultant until tomorrow. 

As well as a general he had an epidural and I think maybe he's getting morphine when these wear off.

Unfortunately they did discover a suspicious nodule on one of the scans which needs further investigation and probably surgery.  I would have thought they would remove this during surgery?   He also has renal stones which we were unaware of and aren't causing any issues.

Until we hear from the consultant I have no idea as to watch stage he's at or what, if any, further treatment is required.  At the minute I'm just relieved this part is over. Oh and my stupid husband thinks he can go back to work with a catheter!!!  Does any of this sound familiar? 

Lorraine