All the big questions…

So many questions.

I know you have questions, it’s only natural!  So, I’ve put together a list of all the things I’d ask if I thought I might have penile cancer. Or maybe, if I’d just had a diagnosis and was worried about what might come next. Maybe you’re just interested, and that’s fine too.

It’s normal to be worried.  We don’t talk nearly enough about men’s mental health. Men too often suffer alone, as prisoners of our own thoughts and fears.  You could have taken a big step today just coming to read my story, so don’t be afraid to go out there and talk to people. Ask questions! 

There are so many people that can help.  When you have cancer, everyone you know suffers in some way with it. So please try and talk about it and don’t try and deal with this on your own.

I know for so many people, that anything involving your penis can embarrassing. You would be straight on the phone to your doctor if you broke your leg. So you need to get over it, you have to take your trousers off for that too!

Remember, I’m not a doctor. Where I think there’s a real technical question to answer, I’ve put together a page with all the resources I go to.

What does penile cancer look like?  Where can I see photos of penile cancer? What are the signs of penile cancer? Cancer Traits.

This is different in everyone. Whether you are circumcised or not, or if you have phimosis.  The first lump, or primary tumour grow differently too, so they are not all the same shape.  I never actually saw my primary tumour, it was encapsulated inside my foreskin.  The lump on the head of my penis felt like a thick worm. By the time I had surgery it had made the whole shape of my penis different. 

I had a secondary tumour where the cancer had spread (metastasised) to the right side of my groin. This grew incredibly quickly, into a hard ball of knotty flesh.  By the time it was removed, it was around 80mm or 3.5 inches.  It stretches your skin, aches and makes everything feel tight.  It’s not painful, it’s just a dull ache.  The best way I can describe the secondary tumour is having a big lump of chewing gum properly stuck in your hair.

A google search will throw up thousands of penile cancer pictures. But exercise some caution unless you want to be shocked! You might never see yours, and it might not be at all helpful to look and worry yourself to death.

How common is penile cancer from hpv?  What HPV types cause penile cancer?

This is a question that I asked my doctors when I first got this thing. There’s a lot of research in this area, and all the researchers seem to agree that HPV is a huge risk factor for penile cancer. A large proportion of people with penile cancer also have HPV. 

Around 80% of people in the UK get HPV at some point, and it’s usually harmless and just goes away.

Most people in the UK are routinely vaccinated for HPV when they’re 12 or 13 now, and it’s given up to the age of 25 on the NHS.  The vaccine is not just to guard against penile cancer though, as HPV has also been linked to head and neck cancers, as well as anal and other genital cancers. 

Unfortunately, the vaccination programme only started in 2008, so many of us missed out.

If you are here because you are worried about potential side effects of vaccines like Gardasil or Cervarix, speak to your doctor.  I really can’t help you. What I would say though, is there’s lots of disinformation flying around about vaccines in general. Ultimately, we have to trust our civil servants and regulators to keep us safe.  In the UK and Europe, we have really high-quality regulation around medicines, and that’s no different in Canada, NZ, Australia or the United States.

The key types of HPV found in men with penile cancer are HPV 16 and HPV 18

To find out more, especially with regards to the medical facts and research, the NHS and Cancer Research websites are fantastic on the technical stuff.

How do you know if you have penile cancer?  How to detect penile cancer? How to know if you have penile cancer?  What does penile cancer feel like?

The simple answer to this is to ask a doctor. If they do not know (as I discovered) get a referral to a specialist doctor called a urologist.

There are some key things to look out for though.  I had an itchy (really itchy) lump on the head of my penis. It could be really painful if it was caught on something or squeezed, and clear or rusty brown fluid would ooze out of the head of my penis.  In the month before diagnosis, I would regularly need to change pads that were soaked from the fluid that leaked out every day.  It’s not a nice thing to live with.

The primary tumours aren’t just found on the head of your penis, they can often be found on the shaft or “cylinder”.

If disease spreads to your groin, you will probably start to feel a dull ache in the area even if you can’t feel the tumour.  As it grows it will really stretch your skin. I thought mine was going to break out like a scene from Alien.

You might have a lump, growth or sore on the penis. It’s likely there will be some smelly fluid leaking from the area, which can include blood. 

If your foreskin is hard to retract (phimosis), swelling of the foreskin and changes in colour are all things to look out for. I had intense night sweats, it was really hard to sleep, and this continued for a few weeks leading up to diagnosis.

There are lots of other things that could give you lumps, sores, or swelling, smelly discharge and night sweats.  Always remember that penile cancer is rare!  But go and see your doctor if you’re worried, ask lots of questions and get it sorted. 

You can’t just wait and see with this and hope it will go away.

A) it’s your dick so you’re probably quite attached to it

B) If it’s cancer, it can grow like a weed if you don’t get on top of it quickly

C) It might be nothing, so a quick chat can help you sleep at night!

Does circumcision reduce the risk of penile cancer?

There has been lots of brilliant scientific research on this, so according to that research I can confidently say;

Yes, it does reduce the risk of penile cancer if you’re circumcised as a young child. It sometimes reduces the risk if you’re circumcised as a teenager, but not really if you’re circumcised as an adult.

Is penile cancer deadly?  Can penile cancer kill you?  Can you die from penile cancer?

Yes, and there are plenty of statistics that you can read about this if you really want to.  The earlier it’s spotted, the earlier it’s dealt with and the more likely it is that you’ll survive.  Survival rates are high if it’s spotted early and doesn’t spread.

Know someone that needs a shock to see the doctor right now? Some studies show that if it spreads, your survival rate might only be 1 in 4. You might not even see the lease out on your car. 

If it spreads (metastasises), major surgery will probably be required. If it spreads through the lymphatic system into the pelvis it starts getting close to some really important organs. At that point the treatment starts getting really intense.

You probably know what I’m going to tell you by now.  Just go and see the doctor and get it sorted.  They have seen lots of willies before.

How common is penile cancer?  How rare is penile cancer?

Fortunately, penile cancer is rare, although the cases are rising. Personally, I believe this is down to more men being comfortable talking about their sexual health. More penile cancer is probably being diagnosed as a result. 

Since I was born, around 10,000 men in the UK have been diagnosed with penile cancer. When set against the number of cancer patients that isn’t a huge number. But that’s still 10,000 men with wives, and siblings, and children, and grandchildren, nieces and nephews, friends, colleagues, lovers, admirers, team mates, drinking buddies. 

Cancer affects everyone. Never underestimate how important you are to all those people.  There is a good chance that you’re someone else’s reason to live.

We all know lots of men that will happily just put up with something, including something incredibly painful, just to not suffer the embarrassment of telling someone about your penis.  Or just in the hope that it’s nothing and will just go away.

It’s much more embarrassing to die and leave your family and friends behind because you’ve left it too late to treat

How do you get penile cancer?

It’s a mystery really, I’m not sure anyone can tell you why you got it.  It could be down to HPV, or smoking, or not being circumcised. Being over 60, phimosis and poor hygiene are also risk factors. Having unprotected sex with a lot of partners has also been cited! Repeated infections that weaken your immune system is a common theme. 

It could be one, or a mixture of these things. It could also be none of these things. It’s probably not worth worrying about, you can’t change it anyway.

What are the first signs of penile cancer?

I had a small hard lump on the head of my penis and smelly discharge. That seems to be pretty common in most cases. The discharge could be clear, and sometimes it had some blood in it.

Can penile cancer be cured?

Yes.  But the chances of survival get worse the longer you leave it and allow it to spread.

Does penile cancer hurt?

I found it seriously uncomfortable, and the itching is hell. The discharge was the worst part for me to live with. If I caught the primary tumour on anything it could be incredibly painful.

Having phimosis and a big lump trapped in your foreskin is often painful. As it gets larger and larger, going to the toilet gets really difficult. The more developed it becomes, the more that just touching it causes pain.

Clearly none of us want to be in the position where we can’t touch our cocks.

How can I be tested for penile cancer?  Is there a penile cancer test?

The first thing you need to do is to see you doctor. They will check you over and go through a process of elimination.  Because penile cancer is rare, you may well find that you, (after reading and lots of other fine resources on the internet) that you know more than your GP!

If this is the case, you will get referred to a urologist. This will usually be at a hospital to give you a more thorough examination.  They will take blood tests to check for infection markers. If they can actually see the tumour, they’ll take a biopsy and send it away to a pathology lab for analysis.  You will probably be given a CT scan with contrast which will show up any larger areas of disease.

I couldn’t see my tumour and phimosis had shrink-wrapped my penis tight. Mine couldn’t be tested without removing it – the lump that is, not the penis. 

I needed a circumcision operation, which removed the tumour at the same time. Any secondary lumps require more surgery. That’s probably going to be a block inguinal lymph node dissection on one or both sides of the groin. 

If more disease is discovered, the surgery will continue going up the body. That could mean removing your pelvic lymph nodes next to see if the cancer has spread there. 

This process of staging or working out how much the cancer has spread is essential for the doctors to work out how they are going to treat you. 

After every tranche of treatment, you will continue to have CT scans, often ultrasound and sometimes nuclear medicine.  I have written at length about my own personal experiences on this score!

Unfortunately, you can’t just have a quick swab or blood test, even if they will give the doctors some indication as to what’s going on with your body.