Barry - Interview 01

Age at interview: 66

Age at diagnosis: 51

Brief Outline: Barry found what turned out to be a malignant lump on the side of his penis. After having the lump removed Barry had a successful course of chemotherapy and radiotherapy. Unfortunately the cancer returned a number of years later, and Barry had to undergo further surgery to remove the affected area.

Background: Barry is a white male and is trained as an approved electrician. He is not currently married.

More about me...

In 1996 Barry became increasingly conscious of a lump on the side of his penis. It had been there for some time, but Barry had initially dismissed it as a cyst and therefore felt that it was not an urgent concern. The lump however began to itch and cause Barry problems.

 

It was a Friday night in December, but Barry felt that he really needed to seek help. He decided to cut out the middle man and go to straight to the hospital to get the lump checked over. Barry was booked to have the lump removed next day. During the operation the surgeon also took a small piece of tissue from Barry’s foreskin to perform further examinations on, and determine whether there was evidence of cancer, a process called taking a biopsy.

 

The following Thursday Barry was given the results of the biopsy, the Dr. stated, ‘I’m very sorry to tell you Mr. Walsh that the biopsy has come back, it’s malignant, it’s positive and your penis has got to come off’ and then left Barry on his own. The way that Barry was told upset and angered him, his initial instinct was to get away from the hospital as soon as possible, but he was stopped from doing so by the ward staff.

 

Barry was eventually allowed to go home for the weekend, on the basis that he would be readmitted on the Monday. Barry was not given any information about penile cancer and therefore over the course of the weekend Barry had formulated a number of questions in his head to ask the consultant. Barry had never heard anyone talk about penile cancer before and thought that he was unique in being diagnosed. On the Tuesday Barry had a C.T. (Computerised Tomography) scan, to see how far the Cancer had spread. The consultant suggested that Barry undergo a strong course of chemotherapy to try and save his penis from being amputated. At home Barry told his close family about his diagnosis, but felt that the illness was too sensitive and private to tell anyone else.

 

Barry began the chemotherapy in the January of 1997. The first session, which lasted five days, went well. Barry then had three weeks off, before beginning the second session. Barry found it strange showing his penis to staff and medical students; however after a while he became more comfortable with it knowing that he was helping professionals expand their knowledge of penile cancer. On the second course of chemotherapy Barry started to feel very ill, he didn’t lose his hair but he began to feel very sick and got ulcers in his mouth. Throughout this time the nurses on the ward and the Macmillan nurses helped Barry stay positive. The Macmillan nurses also helped Barry with his financial concerns. During the third course of therapy, Barry’s blood count dropped dramatically and it was recommended by the specialist that the chemotherapy be stopped in favour of a course of radiotherapy.

 

Barry’s medical team had a device made which fitted around his penis during the radiotherapy. The consultants advised Barry that he may experience problems with the skin on his penis as a result of the radiotherapy. Barry began his radiotherapy in early February, 1997. The machine used for the treatment took 45 seconds each side of the penis, and Barry underwent 20 continuous sessions over the course of four weeks. During the treatment Barry coped well and had no adverse reactions, however after the treatment stopped he began to lose the skin from his penis and it was very sore. The soreness began to subside after a while.

 

After Barry had completed his course of radiotherapy he found that he had some trouble peeing, his urethra had narrowed, meaning that the urine shot out very fast. In late 2000 Barry had a small operation performed on his penis and afterwards was asked to place a small plastic tube down the opening of his penis to help maintain the urethra. This procedure was a success and afterwards Barry was able to pee as normal as long as he continued placing the tube down his penis. Following his radiotherapy Barry was asked to attend follow up sessions, initially every month, then every three months, six months and then each year.

 

In late 2006, Barry was at home relaxing. He felt dampness on his trousers, looking down he saw that it was blood. He ran to the bathroom and standing in the bath he undressed, the blood was spurting across the bathroom. Barry was immediately rushed to accident and emergency. An examination of Barry’s penis revealed that the cancer had returned and the consultant recommended that Barry undergo an operation to partially amputate the penis.

 

Barry never thought the cancer would come back after the treatments he had previously received. However, Barry felt that if it was a choice between losing his penis or the cancer spreading to inside his body and him losing his life, he had no real choice. Also Barry felt that as he was now in his sixties the thought of him losing his penis was somewhat easier than when he initially received his diagnosis.

 

The first operation, to remove the cancer which occurred in March 2007, was not as effective as the surgeon would have liked, and therefore Barry underwent a second one in July 2007 fully removing the penis. A small slit was made just below Barry’s scrotum enabling him to pee. Barry was relieved to find out that he did not require any skin grafts to seal the wound, and with the treatments Barry received the wound healed up well.

 

After the second operation Barry developed a lump in his groin, on his lymph gland and had to have a further operation to remove this. After this operation Barry had trouble with fluid building up in his leg. A drain was placed in his leg for several weeks after the operation to help remove excess fluid.

 

Whilst Barry is concerned by not being able to have penetrative sex he states ‘I’d sooner not have sex and be alive than have been able to have sex and be dead’. Barry stays positive by making the most of things, enjoying himself and enjoying life.

  

The way that Barry was told he had cancer is ingrained in his memory: his initial reaction was to get out of the hospital.

[The specialist] came down to tell me that it was malignant, that the lump had been taken out but I had cancer on my penis and the words he used were “I’m very sorry to tell you... that the biopsy has come back, it’s malignant, it’s positive and your penis has got to come off.” And he just promptly got up and he walked away. So I just put my dinner to one side and started getting dressed to go home, because I just thought well, what more can they do to a bloke than like cut his penis off?

For him to come down and sit on the side of the bed and just tell me that it was malignant and your penis has got to come off and just promptly get up and walk away. That’s still, that’s ingrained in my memory and that will always stop there is, how I were first told about it and I wasn’t very, very happy. And like as I said, I told you my first reaction were throw my dinner to one side and start getting dressed and go home because to me, there isn’t much like then [hesitation] to be told that you’re going to spend the rest of my life – I mean I was only like about 51 – and having to spend the rest of my life without a penis, and how I was told I wasn’t very, very happy about it and all I wanted to do was just probably get out of the hospital and go and have a pint. To be quite honest with you I just didn’t want to be in the hospital. Probably if I’d have been told about it and he would have like consoled me and gone into, and told me that say like oh you’ve got cancer but we can do this, we can give you this and we can give you that or do the other. Then I probably might have thought, oh well.
 

After two courses of chemotherapy, Barry's blood count was too low to continue so he went on to have radiotherapy instead.

I was readmitted on the Monday morning and by this time I had questions to ask, and eventually I got to see a bloke, [doctor] to find out what were going on and he suggested that I go on a course of chemotherapy to try and like save my penis, which I did do, and I think it was four courses I was supposed to have of this chemotherapy and I only had two. I sailed the first, I sailed through my first session and the bags that I had on lasted for a day and I had four bags on, which just like took it into the fifth day. So after I’d had, like the first session of chemotherapy and then I had three week off and then I went back in after three week, to carry on my chemotherapy. And that’s when, on [hesitation] the second course, the second session I was really, really poorly. I got ulcers in my mouth, feeling sick so I had, I went through that and I went home but I were really poorly then. I lay down on the settee and was feeling sick and everything, I can’t remember really how long it lasted for. And then, when I went back for my third course of chemotherapy my blood count were so far down that [doctor] decided that I shouldn’t have chemotherapy – that he stopped that – and I had to go on a course of radiotherapy which was it were like the radiotherapy was– they built a device so I could put it round my penis and this machine were, it started off and it did like forty five seconds this side and then the whole machine turned over and it did 45 seconds that.

It was only after his radiotherapy was completed that Barry experienced side effects, his skin peeled off leaving his penis sore, which he eased by having a bath.

Well when he put me on the radiotherapy he told me that I’d experience the skin coming off my penis as I was going through the course but none of that transpired. I didn’t have any side effects or anything with the radiotherapy until the 20 sessions had stopped. And it wasn’t probably while about a week later, could have even been maybe two weeks later – obviously I don’t know how the radiotherapy works and that but when I started going to the toilet and having a wee and then when I took my hand from my penis all the skin was coming off and it was all going red and it was all, well the skin was all peeling off and that, and it was very, very uncomfortable. And as I say like, I used to, [hesitation] to stop it I don’t know how can I put it, I had to get in the bath to ease it. It were, I wasn’t in pain or anything but it were just, you know sometimes you just want to scratch it, and so I found, I found out that just sitting in the bath with just clear lukewarm water and letting the heat get round it, that used to ease it and that. And [hesitation] I can’t really tell you how long that went on for but like eventually it all does all subside and goes down.

Barry's urethra (the tube that carries urine through the penis) narrowed requiring surgery to widen it; afterwards he had to insert a tube to keep it open for urination.

This radiotherapy, how it was explained to me were it like decreases the cancer, it like makes the cancer grow smaller so obviously the tube inside my penis was having, was having the radiotherapy and that must have contracted as well because I found out that when I peed it just came out so fast and with it splashing back I had to have a little bit of an operation, I was only in for a couple of hours, go down to the and I don’t know how they widened it but after the operation they gave me some (I don’t know what they call them) they were just like a little plastic tube and I used to put some gel on it and I used to stick that down my penis to keep, to keep the what do you call it, urethra or, to keep that wide so I could pee normally instead of it coming out fine and splattering about all over. So once I used to stick that down and widen it up, I could pee, you know it used to come out as normal like. But if I didn’t put this tube down it and keep it open then all it would do was just go back to like it used to be before you know, it just used to come out fast and splatter all over and that like. So as long as I kept it open it was ok.

After an operation on his lymphatic system Barry has had a few CT scans. He suspects he will now have to see the consultant regularly and then once a year.

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.

Barry had lymph glands in his groin removed, this caused fluid to build up in one leg, which is uncomfortable but not painful.

So I went in and obviously had the operation done and it’s, when they take this gland out it, it affects the fluid that gland, like effects the fluid in, like in your legs and what it’s done with having that lymph gland taken out is, all it’s doing is the fluid’s nowhere to go and it’s building up inside my leg like, you know what I mean. I’m not in no pain, I’ve never been in any pain but all I do is feel uncomfortable and it’s just something that, that like well obviously won’t go away it’s going to be, so. But he did tell me... that it would only go up to a certain, my leg would only bloat out to a certain degree but what he means by that is I just don’t know. But it’s thingy like, you can see there look, at the end of the night that is really indented you know what I mean and when you put that leg at the side of this one you can see how the fluid’s building up in that leg but there again it’s going round my body and it’s really and it is affecting the other leg. But I’m in no pain whatsoever. But it’s just like something else, there was a lump inside my body and it had to come out so it’s out. I am in a bit of discomfort but at the end of the day I’m still here so, talking to you so I’m happy with that.

Barry talks about still enjoying life after surgery.

I think now, if they got it early enough you won’t have the problems like what I’ve had. But, to give them advice and that is don’t ever, ever get disheartened. Always look on the bright side because there’s always got to be something better just round the corner. And this disease, I mean it’s not, chose wherever it is wherever it is, it’s not a... laughing disease is it? People’s not happy because they’ve been told they’ve got cancers and that but the thing I want to say to them really is always look on the bright side, never ever get despondent and with it being where it is as a man in some senses... different people react in different ways… I mean I’ve lost mine but people now seem to be, it seems to coming to light now more and more than when I first contracted it.

Of course it’s a hard, to me course it’s a hard decision but at the end of the day, if life’s life isn’t it? And you need to live your life. I haven’t got a penis but I’m 66 years old now, I haven’t got a, and I’m still enjoying myself. I’m still enjoying my life and not having a penis isn’t stopping me enjoying my life. I’m not having the fulfilment of life as a bloke but I’m alive and I’m happy and I’m talking to you. And I’m trying to give advice to other people whereas if I hadn’t had it cut off, would I still be here trying to tell people or advise people not to get despondent in any way? Look forward because there’s always a light at the end of the tunnel. And that‘s my own personal advice to anybody.