Testicular Cancer – My History

Testicular Cancer – My History

Disclaimer: This is my story about my life with cancer.  There will be some humour in this, but that humour will be of my variety (so note very funny to most of you).  And there will be some candid stuff about my thoughts and opinions. 

Take what you want and leave behind the rest.  This is just about me. 

Enjoy.  Bill (2019)

Back Story

Officially my adventures with Testicular Cancer started back in 2009 although more accurately they really started during the summer of 2008, it’s just that back then (2008) I didn’t realise it.

Summer 2008.  A Groin Strain (Not!)

Summer 2008 and I started to notice what I thought was a groin strain. As I was (and still am) a keen swimmer, I put this ache down to some over zealous swim sets or something and thought little more about it. Summer progressed into Autumn and this ache never really left, it wasn’t painful but just never left. So I decided to see my GP. He had a quick check and thought it was probably an infection of some sort and prescribed a course of antibiotics. I duly took this course and went on with my life. The ache remained and was just part of life – everyone has some aches or other.

When life started getting more interesting was December time, during one of my regular self-examinations I noticed that my right testicle felt different – it felt firm and definitely not my normal feeling. Worrying times, so off to the doctors again. This time I saw a locum, who after a quick check strongly recommended I see a urologist for a more thorough examination, and he said that if I couldn’t get an appointment soon then come back and he’d sort one for me. No problem as I get an appointment a couple of days later and saw a very nice chap, Paddy O’Reilly.

After a consultation, he initially thought this was a hydrocele, but booked me for an ultrasound – just to be certain.

It was during the ultrasound appointment, where I found out I had cancer. Pre-operation and tumour dissection, ultrasound is the “gold standard” for testicular cancer diagnosis. If the ultrasound says “yes” then in 99% of the cases, it’s a cancer. After the examination, whilst I was tidying myself up (the electrolyte gel goes everywhere) I can still remember the phone call going on between the ultrasound consultant and Paddy O’Reilly…

“Yes, I can confirm that it is cancer…”

Finally when I had gotten my trousers on, the consultant told me the news, that I’d just heard… Yes it was cancer, and the reason I am telling you this now is to give you 24 hours to come to terms with “cancer” so that when you next see Mr O’Reilly you will be able to better listen to your options.

I am not sure I quite liked the brutal approach, but, he was quite correct.  Because the rest of the conversation with him, all I heard was:

“Blah blah blah… CANCER… blah blah blah…”

I was in a much better frame of mind to listen to Paddy O’Reilly when I next saw him two days later. That meeting was short and to the point. You have cancer (shock to both of us, apparently) and need to have an operation to remove your right testicle (known as a radical, inguinal orchiectomy) and you’ll need to see an oncologist to discuss further treatment options. But first, the bad boy needs to be removed.

2009.  The Start Of The Journey

January 2009.  Orchiectomy (number 1)

Come the New Year, come the operation. On 14th January 2009, I was on the operating table having rightie removed. For your information, apart from the obvious (manly) scares – of some of your “manhood” being removed, the operation is quite simple. The surgeon cuts through the skin of your lower abdomen and removes you testicle and as much of the spermatic cord as possible. The operation can be as a day-patient, although I stayed in overnight and you are up and on your feet again in pretty much no time at all. The actual cut and procedure is “superficial” in nature – the incision is very shallow and doesn’t cut into the muscle wall. Apart from the obvious, it is almost as basic an operation as you can get. For your information, they need to remove the cord, because testicular cancer spreads typically via the spermatic cord. So to get the appropriate margins, out it comes.

To tell you the operation is pretty simple, a couple of days later I was out shoveling snow from the driveway whilst recovering!

Post operation, the testicle goes to the laboratory to be sectioned and determine what type of cancer it is and whether it has possibly spread (up the cord). Whilst this is going on the patient should be having a chest and abdomen CT scan. After the testicle, testicular cancer typically spreads to the lymph nodes and lungs next, before heading toward the brain (nice I know). I managed to have my CT scan a day or two before my operation.

Notification of my diagnosis came from a phone call from Paddy, he was due to go on holiday and rang me before he left. I had was known as a Pure Seminoma (whatever one of those was) and that the next stage of treatment would be discussed with the oncology department.

January – February 2009.  Welcome To The Christie.

My first oncologist was Dr John Logue from The Christie in Manchester.  He spent a lot of time explaining what my cancer was (this seminoma thing), what stage it was (stage 1, cancer contained within the testicle and no evidence of spread) and what my options were (prophylactic treatment as a course of radiation / single round of carboplatin chemotherapy, or nothing and watchful waiting).  The way it was explained was that there was no “right answer” – all three have the same eventual prognosis (5+ year survival), just that the journey might be different.

After a bit of discussion, I/we decided on a course of radiation.  I rationalised that chemotherapy was for “really” ill people – which I wasn’t – and that just watchful waiting would mean some serious chemotherapy if I relapsed (how ironic).  The radiation course I had was setup for 10 days of treatment, resulting in 20Gy (Grays) of radiation to my lower abdomen and lymphatic system.  Traditionally the treatment used to be 30Gy but had been reduced to 20Gy with the same success rate, the rationale being, why give someone more than they need?

February 2009.  Radiation.

I’ve got to be honest – I didn’t like the radiation process.  Not that radiation (for stage 1 testicular cancer) is difficult, but for the fact that I saw a lot (and I mean a lot) of really sick / ill patients waiting for their treatment.  That was not nice, and until then (and the shock of the “cancer” word) I had lived in my own little bubble.  A bit of an operation, a couple of sterile appointments with doctors and “normal” (healthy?) people.  But this was different… there were some very sorry looking individuals here, waiting for their treatment.  And that was something I wasn’t expecting.  Not pleasant – but, sadly, very much a part of cancer.

As to my treatment.  I had a pre-treatment visit, where they have a “practice run” and put a couple of pin-prick tattoos on your stomach to allow them to set up the projector in the same place for each treatment.  Again, this was easy compared to other cancers (brain tumours, most obviously) where the patient has a face mask made so that the do not move during treatment.

Then it was 10 days of radiation, Monday – Friday.  Drive in, queue up, get zapped and go home.  The radiation itself (the application) was painless and took no more than a few seconds: get into the theater, lie on the table, move to where they wanted me, lie still, zap and you’re done.  The effects of the treatment were twofold.  Firstly an accumulation of feeling more tired and more hung over and flu like – not really unwell, but “under the weather” and secondly the joys of being sick…  Radiation for testicular cancer targets the lower part of your trunk and that means that the beams can (and do) clip your gut.  And that means… being sick!

To be fair, they did warn me and they did give me some anti-sickness pills.  But for some reason (macho?) I didn’t think I needed them, because the first 2/3 days were fine.  Well, I think on the forth day, when driving down the A6 and realising I needed to stop and I needed to stop right now… that told me that I should take the medicine!  That journey had a lot of “emergency stops” on it – I learnt my lesson!!

For those interested, being sick wasn’t like “normal” sickness – I had no stomach issues or anything other than the instant, no warning, I am going to be sick now.  My recommendation to anyone else – take your meds!

March – December 2009.  Watchful Waiting.

Watchful waiting is a key part of the testicular cancer treatment regime.  It is what it says, basically you follow the prescribed follow up checkup routine of 3-monthly bloods, chest x-rays, intermingled with the odd CT scan.  The blood tests check for cancer markers that, if raised, are indicative of something wrong.  I still (9 years out) have blood taken, which is interesting because my seminoma did not present markers.  However it might and the test is I guess cheap and quick.  X-rays are to check if there are any lumps inside you that shouldn’t be there.  The general chest x-ray is just that, a general x-ray and would only show up shadows that were of a significant size.  But single x-rays do not incur much radiation and so are part of the standard routine.

Occasionally a CT scan would be performed.  For those that don’t know, you are placed inside a moving doughnut-shaped device, which moves up and down your body taking lots (hundreds?) of x-rays to build up a cross section of your body.  CT scans are much more effective at finding smaller growths before they become obvious to a normal x-ray, however because a scan is a lot more radiation than a single / simple x-ray, they are used more sparingly.  Again, why subject your body to more than it needs?

Post radiation treatment, my watchful waiting was as dull as you could hope for – nothing happening.  Which is exactly what you want!

On an unrelated note (well not that unrelated because it was a big milestone for me in my recovery) I entered the Cheshire Sprint Masters that September and swam my fastest ever 400 meter swim.  Still not beaten to this day.  Post cancer and radiation, yep I will take that as an important victory – “one in the eye, you bad seminoma thingy”.

2010.  The Year Of The Castrate

Spoiler alert – okay too late, you get the headline before the detail!

February 2010.  Damn It’s Happening Again

So just over a year after my first cancer, I am travelling to Italy a few weeks into my new job and in the shower I think… mmm… the old leftie doesn’t feel so good.  Unlike my first where I had this dull ache (which was actually the tumour pressing on my epididymis) this time the only indication was that my remaining testicle had gone hard.  Oh dear, I knew what that probably meant.

But timing is everything, because at the start of March I was booked for my next appointment at The Christie with Dr Logue and so rather than go to the doctors to get referred I went straight to the expert.  That was an interesting meeting…

Dr Logue: “And how are you?”

Me:  “I think I’ve got cancer in my other testicle”

Dr Logue:  “You’re probably over reacting and worrying unnecessarily, which is understandable.  Let me do an examination.”  (which is part of the normal routine anyway)

Dr Logue fiddles around a bit.

Dr Logue:  “Oh dear, I think we’d better send you for an ultra sound…”

And so it was; confirmed cancer in my remaining testicle.  Told you so!

Later that week I saw Paddy O’Reilly again, however this time he told me his schedule wouldn’t allow an operation and recommended another urologist… Mr Richard Brough.  A short meeting with him and surgery confirmed for the 15th March 2010.

March 2010.  I Awake… A New Man

15th March, under the knife and I wake up testicle free, neutered.  Whilst sitting in bed talking with Mr Brough after the operation he introduced me to the resident endocrinologist to talk Testosterone Replacement Treatment (TRT).  No nuts means no natural testosterone, which for a male is a bad place to be.  Whilst in bed, the endocrinologist wrote me up a prescription for my first batch of daily topical TRT gel.  I will write a bit more about that in another post, but suffice as to say – it’s magic stuff.  Been applying the stuff since the morning after my second operation and can honestly say I feel no different to how I was before removal.  As I say magic stuff!!

For me 15th March 2010 is a big day in my history.  It is the day I started a new life without testicles.  Technically that makes me a castrate – which is a phrase I am comfortable with, other people in my position are not.  I remember a long message board thread on a testicular cancer forum when I announced my 5-year-castrate-aversary to the world and another chap (also testicle free) took issue and posted a huge message about how castration was part of the emasculation process and not the position he was in.  Each to his own.  Anyway 15th March and I was nut free.

Nut free and back on watchful waiting, this time opting for no additional treatment (they don’t like to offer radiation twice, if they can avoid it).

Two Nuts, Two Cancers

The pathology for my second testicle came back as a pure embryonal carcinoma (a more scary name than my first one) and also with no markers in my blood.  A misconception is that the second testicle contracted cancer from the first.  This is wrong, in most (all?) cases, even if the pathology is the same for both the cancer is actually as second and unrelated primary cancer.  Not a relapse or part of the first cancer not found / cleared up.  But a second “brand new” cancer.

A slight warning with this one, was that the pathology came back with some “vascular invasion” – basically this cancer was not confined to the testicle but had “broken free” and been found in the spermatic cord they removed.  This, Dr Logue explained, was not something to worry too much about – the five year curative expectation is/was the same, however because of the vascular invasion there was statistically more chance that the cancer might return as a relapse.  Possibly a 40% chance of that.

And how right he was…

August 2010.  It’s A Relapse

August was an interesting month, that started with my usual routine bloods and CT scan.  These I had a week or so before my appointment with Dr Logue.  I started to get the impression something wasn’t quite right when my 10:30 appointment didn’t happen on time and the fact that everyone else in the waiting room got seen and left.  Eventually I was the last one in there, waiting.  Something like 11:30 a gray and grave Dr Logue invited me in for my appointment.

No mixing of words here, but in a grave and deep voice he told me that the scan had shown up a lymph node that had grown and that I had been diagnosed with a relapse and would be transferred to the care of Dr John Lehay, part of the medical oncology team to discuss the expected chemotherapy treatment required.

Well that was a bombshell on a sunny morning in August!  Unlike the two primaries, where I could see / feel some changes in my body that were not right, with this relapse I felt… well, normal.  I had no idea that this tumour was growing inside of me.

August 2010.  Dr Lehay And Tests

My first meeting with Dr Lehay we talked about the treatment options.  Standard protocol for this type of relapse is three rounds of something called (BEP – Bleomycin, Etoposide and Cisplatin).  Nine weeks of treatment to look forward to.  However before they attack you with these drugs you have to have a few tests to check that your body can cope with the regime.

They do three pre-chemo tests on you.  They check your breathing function (Bleomycin can do some pretty nasty stuff to your lungs).  The check your hearing (Etoposide can give you hearing loss and tinnitus) and your kidney function (all the drugs are highly toxic there).  I came through those okay and so was booked to start my first round of chemotherapy on the 3rd September.

September – October 2010.  Chemotherapy (3 x BEP)

I admit to still being hopeful / in denial about this relapse – I still felt perfectly fine – and so with agreement from Dr Lehay I had one last CT scan before we started.  The result my tumour had doubled in size.  And so the start of my first round of BEP.

In the UK the BEP protocol is (or at least was when I had it) a three week course of chemotherapy.  Week one as a three-day inpatient for the bulk of the drugs, and weeks two and three a single outpatient visit for additional bleomycin top-up.  The inpatient days lasted between 8 and 14 hours for all the drugs and saline to be administered.  They stick a cannula in your wrist and off you go.

I learnt that I don’t really get on with having needles stuck in the back of my wrist.  Especially, as seemed to happen a few times, when the phrase “Sorry, I have hit a junction” was heard to be uttered.  On one occasion, I think my first outpatient appointment, that happened to which I responded “I am going to faint” with the next thing I knew, Kevin (the outpatient nurse) leaning over me saying “everything is alright”.  No, not my best thing, the cannula process!

In terms of treatment, BEP is really quite unpleasant.  Whilst the first inpatient round was okay, the effects are cumulative and eventually it was all I could do to hobble up the street with our dog looking and feeling like I was 120 years old.  I could feel my heart racing all the time and could not sleep properly, eventually reverting to sleeping pills (zopiclone – magic) to just get some / any rest.

Also, with BEP it hammers your immune system.  So you have to be really careful not to pick up any bugs, which when you have a nine and six year old at primary school starting back just after summer, is a big ask!  I had read enough about a couple of people who, quite literally, had near death experiences because they caught colds that they couldn’t cope with.  As such I spent my treatment and recovery phase afterwards being totally paranoid and keeping away from as much humanity as possible.

Paranoia worked, as I managed to survive without any infections.

A slight gotcha for me was, that because I’d had radiation treatment one of the hangovers from that is that my bone marrow is slightly compromised and as such for each round of treatment I needed daily blood-booster injections.  So along with all the other ill feelings, I also had “bone ache” from these boosters.

My last in patient round finished on the 15th October, my son’s seventh birthday – a double anniversary.

December 2010.  NED – No Evidence Of Disease

With chemotherapy finished, and recovery completed (I was back in my office from the middle of November), it was back on the waiting game.  At the end of December I had my next follow up with Dr Lehay at which he reported that my tumour had “gone” – there was no evidence of disease – and I was now back on watchful waiting, resetting the clock and counting down the days to my five year all clear.

December 2015.  Five Years Free

In terms of testicular cancer, for most people, the treatment regimes work.  And by work, mean, they effectively kill the cancer and cure you.  Testicular cancer is one of the only cancers where they do use the “c” (cure) word.  Because of this, once the CT scan had confirmed that there was no more evidence of disease, you are back on the watchful waiting program and, really, just counting down the days.  For most people, there is / should be no more invasive treatment required.

This doesn’t mean that there are not challenges to be faced.  Cancer does some “interesting things” to your brain.  Getting ready for the next bloods/x ray can induce some mild panic – what if it’s back?  But in general, it’s time to get back on with the job of living your life, enjoying your family, may be not taking as much for granted.  The treatment has worked, don’t waste your (saved) life.