Penile Cancer

What kind of aftercare did you receive from the hospital?

The aftercare consisted of an open invitation to contact them if I have any problems. The consultant wanted to see me within a few weeks I believe of the operation, followed then by a scan or the other way round [smiles]. I can’t quite remember. But the ultrasound scan obviously checks to see whether the cancer has actually spread to the lymph glands in the groin. And luckily enough there was no sign of that. I’d got some lumps in the groin but they’re deemed to be more like fatty lumps than cancer cancerous lumps. And since I’ve been seen approximately every 3 months or so... by the consultant. Generally after having an ultrasound scan so that he can discuss the results. But when I do have the ultrasound scan I’m told straight away of the results. And thankfully to date, which is 18 months, everything’s been clear.

Do you have any blood tests performed at those check-ups?

No. No. No. All that is done err the scan is purely a scan. There’s no blood tests at all and when the consultant sees me he just comes around and he feels the groin area to see if there’s anything suspect developing there.
 

Oh, excellent aftercare because they arranged for when I got home, they arranged for the district nurse here to come in who funny enough I’d met once before when I was seeing a friend who had been ill and she was in there with her, and she came in and came and changed any dressings and checked everything and suchlike and so forth. And in fact the pins I had out from the groin, instead of going back to the hospital, I had it done by own GP did it, which was you know, something for them, they looked and saw everything was going all alright. And one thing I thought was good, every time I went to the hospital either for check-ups or for the operations a letter was sent to my GP and a copy was sent to me so I had, and I’ve got the file, I’ve kept the file of all the hospital visits I’ve had, not only for the cancer because I’ve got a bad back as well. I just have everything in a file so it’s you know, it’s nice to be able to…’oh look he is going to be alright’ sort of thing, if you know what I mean, which I thought was very, very good. And they were very, very good. I mean they, whenever I go or went after all the operations I used to get a thing on my mobile phone ‘don’t forget you’ve got an appointment tomorrow at two o’clock’ or whatever it was. They’d always remind me the day before which just – not that I needed reminding – but I always got the reminders.

Have you received any other aftercare from the hospital?

The week after I came home I had to get the dressing off my skin graft on my leg and the district nurse came along just to check up on that and asked me if I wanted it rebound but I didn’t and did I need anything else. No I didn’t, so there’s been nothing since then.

How has the healing process been?

It’s good. It’s changing shape, which I didn’t expect. I just expect to stay as it was. And there’s a bit of a lump there, which wasn’t there before and about a week ago I was worried that could be the growth coming back but it seems to have just.. be the shape of the skin. So whether that is something that happens I don’t know but he will tell me… presumably whether it’s been a success or not. So there’s still that worry in my mind at the bottom as to whether that is something coming back. But it’s just changed shape and it seems to have stayed that shape. But there’s no discharge or scab or blood or anything like that. So that is still a bit up in the air. But this time next week I’ll know a bit more.
 

I have check-ups every about four, about every months I think. And that’s been, you know they’re very good like about that. If I need anything I can ring them three Macmillan, I’ve three Macmillan nurses that were like on my case, I just ring them and I have any problems. Like when I had a couple of water infections and they got that sorted out for me. Not a lot, not a lot of help from my own GP, I thought you know, but they’ve been very helpful at [city], very helpful.

Do you have any other tests done when you visit the consultant?

No. I’ve had just ‘how do you, how do you feel?’ and pressed and poked and that I’ve, I’ve had no scans or anything since.
 

And what kind of aftercare or support do you receive from the hospital in terms of check-ups and follow-ups?

Only my six monthly visits to the hospital. You just... I just get examined. Takes about five minutes. Then he says ‘see you in six months’ time, everything’s going alright’. So I think well good, I’ve got another six months [chuckles] and… Yes it’s so I take it from… every six months I feel happy ‘til I go there and you get a bit trepidation then' is it all alright and… But no there’s apart from that… no there’s...that’s the only back-up I get.

At those appointments do you have any blood tests or scans?

No, no. They’ve, I haven’t had any scans for ages. The only blood tests I get is when I have diabetes... I’m diabetic Type 2. Which every 6 months I get checked at our own surgery. The week before I have the diabetes checked out they take blood. And then I go and have a urine sample and then they come and tell you what’s happening. Touch wood [chuckles] everything’s been [chuckles] alright there.
 

Always leading up to appointments I get very sensitive. I start to feel things are going wrong. I’m very sensitive to any itch or any pain in that area. So I always get a bit more worried in the, in the fortnight before the, before those appointments. So, once they’ve gone, you sometimes actually go to the appointment and he says it’s fine and you come back and you feel a bit disappointed because – ‘I knew there was something wrong that he was going to fix’ but [chuckles]. But, no, yeh, with all, so in between it’s fine. Getting close to them you get a bit nervous. You get more sensitive and you convince yourself that there’s something going wrong.

Well, well I go, I did go back every three months but now they’ve put me to every five or six months simply because if it doesn’t come back in the first two years there’s a chance it won’t come back in up to the next three years, making it five. So I’m just keeping my fingers crossed that I get to five and without any problems but that’s all you can hope for really [chuckles].

Well... I’d have to look at my notes for you but I have had a few CT scans. I think the last one were in November, I think the last one were in November, CT scan. So like from then and I think I saw the specialist somewhere round about that time as well and so from November I don’t have to see the specialist while next month. So I’m going to see him now in err June and then well obviously I don’t know whether he’ll want to see me again or whether he’s going to be happy or. Like I don’t know how long he wants to see me down the line like. I mean he might want to see me for the rest of my life or I would imagine it’s like it was for my first one, go and see him quite regularly and then after a certain time then he’ll just say ‘well there’s no more we can like do for you but just pop in once a year,’ I mean I just don’t know so. I can’t really tell you what’s going to go on like down the line. But they always seem genuine enough and they always seem to be concerned about you and everything, you know what I mean and he seems a nice enough person you know because like when he was going to take the gland out of my groin he came and sat on my bed and he told me what he was going to do, you know do to me, not to worry and whatever.

Yes I was going back there every three months for about a year. And then it went to four months, and then it went on to six months. And that’s when they decided the lichen sclerosis was definitely back and that’s when they said to me ‘we’re going to have to keep you here at six months for an indefinite period’. Because normally they would have released me after three years. But they said that the... I wouldn’t know the difference between the cancer and the lichen sclerosis. And I think he does little tests on his… trainee doctors in there because every now and then they come in and panic and he comes back and says ‘no it’s lichen sclerosis’ [chuckles]. So I think it’s a nice little test for them all but…yeah it’s been a long time. I could do without the journey and the cost of the journey- obviously it come quite a bit of money to get out there each time. But no it’s... they’re doing their best for me and I’m happy with that.

I didn’t need any aftercare whatsoever... really... if I’d have needed any I would have, I would have sure they would have gave, given me the treatment necessary. Every time I’ve gone they’ve been inspecting me and made sure that there’s no lumps or anything else. They’ve asked me the same sort of questions every time and they always comment on what a good job it is (laughs) and once or twice I’ve had a few students being there at the same time you know... and I’ve had no problems with it at all really. As I say I think I’ve been very, very lucky.

They looked every time, they actually physically looked at everything, checked that there was no reoccurrence of the cancer and we were probably 20 minutes in there, bits and pieces and so on... and I had as well as just those things I had scans done. I went and had either, I can’t remember what scans I had, a CTI or an MRI or something like that, had scans, I had about seven of those during that period as well because they did the scans to make sure nothing would come back anywhere else sort of thing.

And did you have any blood tests?

Did I have any blood…! I’m surprised that this arm isn’t the… I’ve had more blood taken in the last five years than I’ve lost all the rest of my life. Yes, they used to do blood tests nearly every time I went for just to check. Touch wood and whistle, it was always okay.
 

I have to see this consultant urologist every three months and his oh and he said, “At the moment everything looks healthy” the surgery, he said he’s really pleased with the – the reconstruction surgery –because this is a new thing like and I have to see him like I say every three months and August 5th this year I had to go in and have cystoscopy and what that was to check whether the cancer had spread to my bladder and thank God like he said, “Your bladder’s fine” he said “the only one thing is your prostate is a little enlarged” he said “but once men get into their 60s that’s quite normal” and he said “it’s nothing to worry about at the moment” but the good news was that it hasn’t spread to my bladder and he said when I see him every three months he said each time he’s told me “everything looks fine at the moment – still looks healthy” so, but he said I’d have to see him up to about at least five years.

Did you have any checks to see if the cancer had spread to your lymph glands at all?

Oh yes this consultant surgeon that I see every three months he, that’s the first thing he does as well, he checks my lymph glands and he said, “There’s no sign of any lumps” he said “the first sign of any lumps we’d have to operate to remove them straight away” he said “because once the cancer gets into your lymph glands it is absolutely rapid through the body.” So and that’s another thing, so when he tells me that everything looks fine at the moment and he said, “There’s no sign of any lumps in your lymph glands” he said so, and he’s done that more or less every three months when I’ve seen him so….
 

Keep going for the scans and every scan you got and it was clear, it was like ‘oh, I’ve scored a goal, I’m past that part there.’

And eventually I got to18 months and my consultant said, “You’re doing very good” he says “usually if we don’t get any more reoccurrences at the 18 month period.” So the next scan after that imagine my surprise when he turned round and said, “It’s come back.” Well I was shattered. And I turned round and I telled the wife and I says “I don’t know what’s going to happen this time” I says “it’s come back and I don’t know where it’s come back.”
 

Well what happens after that of course is very much I think the standard process. I think the... immediately after I was going in about every three months for a kind of visual check. And I was having scans probably every three months for the first… the beginning. And then I think it went to six months and I think the checks were six months. And so there was no there was no there was no reoccurrences, it at that stage anyway. It it’s strange because thinking back I’d just assumed... I think I wonder if it was something to do with the surgery being so good and specific and everything appearing to be clear and was well was clear. I just I think we rather assumed it would it would never it would never recur and that was it. And the original operation would be about I think it would be July 2008 so and then things went absolutely fine until early this year, 2011.

And I just made the assumption I mean I that that it wouldn’t return and I’d never felt concerned about having the visual check and physical check nor the results of the scan. I just kind of made the assumption all would be well and that was something in the past and it was almost as though I’d never really had cancer, just had this piece of surgery which didn’t really leave any particular difficult after effects.