Josef Mombers*, from Belgium, was diagnosed with human papillomavirus (HPV)-related cancer of the penis three years ago, when he was 57 years of age. It is an aggressive form of the disease that requires radical therapy and typically has a poor prognosis.
Here, he tells us his story, describing the impact the diagnosis had on him and his family, not only in terms of its management but also its psychological, physical, sexual, social, and professional impact.
He also gives us his thoughts on HPV vaccination and tells us why, even now, he considers himself fortunate, and why cancer patients should always maintain hope that they can make it.
I have been happily married for 30 years and am blessed with three wonderful children and a grandchild, who was six months old when I was diagnosed.
I consider myself a family man. To say ‘family is the most important thing in life’ is not just words to me. It is something I try to incorporate fully into my life.
I like all kinds of music, from Bach to The Beatles and beyond. I go to the opera from time to time with one of my daughters, and I like to take my son to see football at the local stadium.
I read a lot, including comics and graphic novels. Until my diagnosis, I was writing reviews for a Belgian website for comic lovers in my spare time.
I am interested in most aspects of art and culture, apart from dancing, which I’m afraid to say I never get!
Before my diagnosis, I put my head in the sand, like an ostrich. The evening before my first visit to the urologist, my wife asked me what I thought the doctor would say, and I replied: “Strictly speaking, it’s possible this is cancer, but you shouldn’t be afraid. It isn’t.”
The next morning, the urologist, who I know well, needed less than five minutes to tell me I had cancer. He immediately arranged a CT scan that confirmed I had metastases in the groin. He also arranged an appointment at a renowned specialist centre for the next day.
Yet I still ignored the life-threatening situation I found myself in.
The next day at the centre, a biopsy was taken and I was given a thorough explanation of what was coming next in terms of therapies, as well as my prognosis. They told me I had a 35% chance of being alive in five years.
In other words, the changes of not making it to five years was double that for being alive by then. Horrible.
I drove home and did possibly the hardest thing I have ever done: My wife and I went to tell my children about the verdict. I remember saying that the worst for me was my grandson, who was five months old at the time, would maybe never have any memories of me.
Less than two weeks later, I went into hospital for surgery, a procedure to remove some or all of the penis known as a penectomy. I was calm at first but a wave of panic came over me that evening. An experienced nurse took time to talk to me, for which I am still very grateful.
In the recovery room after the surgery, they told me they had been able to remove everything, which was a hopeful sign. The growth of the tumour afterwards on the CT scan was less than expected, which also gave me some hope.
Facing a diagnosis of aggressive cancer, you pass through the classical stages of grief:
The loss I was grieving was that of a ‘normal’ healthy life, with no major adversities.
It was also a shock to have to alter my position in life. I went from someone who took care of others, taking things into his own hands to make things better, to someone others had to take care of, who had to hand himself over to trained and skilled professionals.
During the six months of therapy, I learned that others were willing to take care of me. When I told one of my colleagues how many people seemed to really care, she said: “You are now reaping what you have sown your whole life.”
A cancer diagnosis at a relatively young age makes you think about the end of your life. Of course we all think about that from time to time, but not ‘for real’. And that’s a good thing. Otherwise life would be unbearable.
Some people seem to need the ‘great shock’ of a cancer diagnosis to live their lives less superficially. I didn’t experience that. I think we didn’t have a ‘superficial’ life beforehand, and I always thought over things. I always tried to be aware of how good our lives were, and how grateful we should be for that.
The impact of receiving a cancer diagnosis with a poor prognosis and the subsequent therapies cannot be overstated. There are several aspects to this.
Initially, there is a real fear of not making it. You think a lot about things you believe you are experiencing for the last time: Christmas with the family; birthday parties; seeing the sea; hearing the birds in springtime, etc.
To give you an example, the wedding of one of my daughters was planned for about seven months after my diagnosis. I went with my wife to look for a dress, and when I saw her all dressed up for our daughter’s wedding, I became very emotional, thinking this would be the last time I would see her wearing it.
On another day, we took our grandson to the zoo. He was two-and-a-half years old at the time, and he was singing the whole day. He was shining with happiness. The next time I was home alone, I panicked that I would miss all of this forever.
As the character of Joy Gresham says in the film Shadowlands: “We can't have the happiness of yesterday without the pain of today. That's the deal.”
It will not be a surprise to learn that having a penectomy has an impact on the sexual life of a couple. Not only for the patient but even more so for his partner.
Whereas sex should, ideally, be a mix of physicality and intimacy, there is a clear shift towards intimacy after such an operation. It does not mean there is no longer any physical lovemaking, but it changes, and both partners have to learn from scratch how to deal with the new situation.
The role of the partner is of utmost importance, not only in accepting the situation but also in helping the patient accept his ‘new body’. ‘For better or for worse’ are easy to say at a wedding, but if your partner lives by them, you are blessed.
Do I miss it? Do we miss it? Of course, but no matter how much we liked our ‘normal’ sex life, we are happy with what is left. It may seem very little to other people, but it means a lot to us.
In the first months after my diagnosis, my fears concerned not only whether I will survive but maybe even more: “What if I wasn’t enough for her?”
I was really afraid that my wife would meet someone else and come to the conclusion that life with me was not so great. On the other hand, I hoped she would not have to be alone, so it was not a kind of jealousy. It was a fear of not standing up to comparison.
I also feared my children would not miss me, that life without me would not be very different. I am lucky I can say these things to my family and we can talk about them. My youngest daughter replied in a very comforting way. “If mummy is happy with another man, then it will just be the REST of her life, which doesn’t compare to the building of a life you two did together.”
I feel blessed with my kids. Saying things like that fills me with pride over the people they have become.
It is very easy to say you know who your real friends are when you need them, but it is so true. You learn quickly who really cares and who just asks ‘how are you’ when they expect to receive a positive response.
But people surprise you in both ways, with unexpected support but also ‘friends’ who do not contact you even once. The worst I encountered was one person who phoned me and said: “I heard from our aunt that you’re okay now, so I thought I can ask you how you are.”
You need support when you are down, not when you are on your way back up. And that is how you discover who your real friends are: Those who see you are having a ‘bad moment’ and come and sit next to you and are okay with your tears. Those people don’t try to tell you everything will be okay, but tell that, whatever happens, they will take care of your family.
Saying that, after all the treatment, a ‘normal’ social life does not come back. You need a lot more rest, and that has an impact not only on your social life but also that of your partner.
One of the things my oncologist told me on the day we met was: “Make sure you take care of everything.” And this is what I tried to do.
Making sure my wife and children were well looked after, and aware of everything they needed to know. House, money, insurance, things like that. It’s not difficult to do, and it takes your mind off other things.
But I couldn’t take care of the really important things in life.
How can I stop the bed being cold when my wife goes to sleep? Who will bring her something to drink when she watched the TV? Who will give her a kiss when she wakes up, or goes to sleep? Who will run his hand through her hair when she passes by? Who will talk to her at breakfast or over dinner?
Taking care of practical things is important and will avoid difficulties for those left behind, but it is so small compared to all the rest.
Every time a follow-up scan comes around, you feel terrible. The worry of the patient is somehow inversely related to the length of time between two scans! It diminishes over time, however, without disappearing completely.
A thorough understanding of the expected evolution of the disease does help a lot: Early recurrences and metastases are not uncommon (and I suffered two of them) but as time goes by the likelihood of a recurrence goes down.
But the effects of the treatment are still there and cannot be ignored. Bilateral lymphedema affects the amount of rest you need. Chemotherapy has an impact on your hearing, as it is ototoxic, etc, etc.
My wife says that might just be age, however, and before my diagnosis I heard but didn’t listen, so not much has changed!
Although the people I work with seem not to notice, I feel a clear reduction in my capabilities, in both the amount and quality of my work. My concentration is much less, and I can’t keep it up for long.
I’m still capable of analysing situations, including new ones, but it is much harder to remember everything. Obviously my hearing impairment has an effect on meetings, especially on virtual meetings in the time of Covid-19. I also need more time to recover after a working day or week.
But I manage, despite having to take a few steps backwards. This is particularly hard when others don’t seem to accept it and still think you are the same person as you were before. Every time you have to say no to an invitation or question, you once again confront your disease.
Now, two and half years after my diagnosis and two years since my last surgery, I feel, given the circumstances, quite all right. “Much better than expected and as good as the best I hoped for,” is what I answer when I’m asked how I’m doing.
Is it a ‘normal life’? Well, can you tell me what is a normal life? Before I had my diagnosis, life was a lot easier, but I was aware I was lucky and a lot of people don’t have the life I had.
Let’s face it, I never knew hunger nor thirst. I wasn’t touched by war, neither disease. I lost no one in my youth, and I had no real work problems. And now? Having got this far reading my story, you’ll know what has changed, but life is still beautiful and worth living.
The most unpleasant thing is when people say: “Okay, you’ve had cancer, had a few operations, chemotherapy and radiation. It must have been hard but now it’s time to move on.”
Can we really ever move on? The impact on all our lives is so huge it lasts forever.
I would say to other patients, no matter how bad your prognosis, you still have a chance. A five-year prognosis of 10% means just that: One out of 10 will be still alive after five years. Just one, but it is one, so why can’t it be you?
So take everything the doctors offer you as a treatment. They only offer things that might be of benefit, things that will increase the likelihood of you being that one out of 10.
Every treatment has its side effects, of course. Surgery is not a power nap, chemotherapy is not a glass of wine, radiation is not sunbathing. But ask yourself this: What would you prefer, living with the effects of therapy or being dead without them?
I can tell you that life, after all is said and done, is still worth living, even though it might be a different life from the one you had before.
One more thing: fight your cancer, but don’t try to fight your emotions. Allow them into your life and try to have some people around you to talk about them.
At the moment, most girls in Belgium are being vaccinated against HPV, but boys are not. I guess the reason is that cervical cancer in women is about five times more common than penile cancer in men.
As vaccination is part of preventive medicine, the costs have to be weighed against the potential benefits. So it comes down to an economic question: How much would it cost to save 10 years of life for one patient, and how much is that worth to society?
Vaccinating girls could also have benefits on men, as there would be less virus circulating in their partners. This could reduce their risk of becoming infected. So, maybe it is not necessary in boys, I guess time will tell.
On the other hand, of course it would seem logical to also give a vaccine to boys before they become sexually active. And I would not have had cancer if I had been vaccinated. So yes, please!