Barry - Interview 73

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 [name] 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.

 

 

Barry, who had penile cancer, had a lymph node removed from his groin, and now experiences swelling in his leg which can cause him some discomfort.

Yes, I got a lump in my right groin, and obviously that started off like, well small, and then I can’t remember over a period of time but eventually I had to go in and have this lump removed, it was like on your lymph gland. So I went in and obviously had the operation done and it’s, when they take this gland out it affects the fluid that gland, like affects 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 any pain, I’ve never been in any pain but all I do is feel uncomfortable and it’s just something 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.

After previous penile cancer treatment proved unsuccessful Barry had his entire penis removed so can no longer have penetrative sex, but he prefers to be alive and unable to have sex than to be dead.

Well obviously my sex life’s nothing now. I did have – it wasn’t an active sex life after I – sex, after I had the cancer I mean, obviously once I’d had my radiotherapy and everything, I mean I did have a little bit of a sex life, but not much. But, obviously I’ve lost my penis, so I mean it’s just like anything else, I don’t have a sex life as a sex life, if you understand what I mean. I can’t have a sex life, can I, because I haven’t got a penis. Does it still bother me that I can’t have sex? Obviously it does do. I’m a man. It does bother me in a sense but it’s like anything else, I’d sooner not have sex and be alive than have been able to have sex and be dead, if you understand what I mean. 

After a recurrence of his penile cancer Barry had the whole of his penis removed. Although he no longer feels like a man as a result, he is glad to be alive.

But I’d always had one thought or one hope that to stop the cancer from going inside my body I could’ve, and they cut my penis off, and if cutting my penis off could stop the cancer from going inside my body then well, it’s like there’s no comparison really, is there? If you want to live then you cut it off. And by this time I’d had, like, ten years to come to terms with it. I knew I was going to lose and, like, I was, like, in my sixties so…… but I never ever really sat down and thought, ‘Oh I’m going to lose my penis, what am I going to do?’ It never, I think I thought about that more when I was fifty-one than I did do in my sixties, but I can’t really say to you that I thought, I worked myself up into a state, ‘oh I’m going to lose my penis,’ the only saving grace for me was that I had cancer but it was outside my body. So to stop me having cancer inside my body, if they cut my penis off…….. looking at it like……. if you cut something off that’s not inside your body then it’ll never get inside your body. So, I mean, like, since I’ve lost my penis, I mean, like, about five years has gone down the line, I’m sat here talking to you, I haven’t liked what’s happened to me – nobody likes what happens to you because as a bloke your penis to me, the only reason you’re a man is because you’ve got a penis. So if you haven’t got a penis, in some senses you’re not a man. That’s how I look at it. But I’d plenty of time from me first contracting cancer on my penis to, like, when my, like, ten years had elapsed, so I’d plenty of time when it came back, as it did do, I was glad for them, in a sense, to take it off me because I knew it was going to stop the cancer from, like, getting inside my body. So if you want to live, it goes doesn’t it? I’m not happy about it but I’m still here talking to you now, and I go and see the specialist in June, next month, to see what he’s got to say, but all the signs are that everything’s hunky dunky and rosy, so I, well you can’t say no more about that, I’m alive aren’t I, so that’s it.