“My Voice” by Andy Coles

You could say my experience as a ‘survivor’ started 6 months after my conception.  I was born 3 months premature, weighing in at a weedy 2lb 6oz; the doctors rushing me into the ICU early on Christmas Eve, 1975.  My parents have always said that I was just impatient to get out because I didn’t want to miss Father Christmas!

Being so small does have its complications.  I was born with Hydrocephalus (water on the brain) and Perthes’ Disease (softening of the hip bones), which barred me from activities like running and contact sports for most of my school life.  As I was generally chirpy as a child, the doctors used to leave my appointment to last, so that other parents could see how well I was doing despite coming through so much.  I continued to see the specialists at regular intervals throughout my early life, until finally being discharged in my early teens.  At that time the only sign anything wasn’t right is my slight limp (hardly noticeable unless I’m tired), and a large scar over my right ear after having a shunt valve fitted to control fluid pressure inside my skull.

Having gone through all this, you would think my ‘survivor’ status had been proved.  I had gone on to attend a mainstream school, college and university, learnt to drive, am holding down a steady job (15 years and counting), and live independently.  Little did I suspect that a far bigger test was to come.

Moving forward to 2005, I was in the shower one day in November when I noticed that my right testicle was slightly smoother than the other one.  “Nothing to worry about” I thought, but as time went on, I was sure that it had got slightly bigger.  Still not overly concerned about it, things went on until I went to the docs on an unrelated matter, and as I was about to leave, asked him to check it just to put my mind at rest, (by this time, it had grown to the size of a hen’s egg).  After examining it, he told me that it was probably okay, probably just a hydrocele, but I was booked in to have an ultrasound to check it out to be on the safe side.  The appointment finally came through for the 7th February, almost three months after the initial referral.  I went through that Christmas (and my 30th birthday) with the nagging feeling that things were not ‘right’.

When the ultrasound finally arrived, I went with a certain amount of trepidation.  Having never been pregnant before (!), I didn’t know what to expect, but the specialist talked me through the procedure and I felt quite relaxed by the time he finished.  That was until he gave me a report to take to my doctors and I said “I’m going back to work, I’ll take it in the morning”, and he said ”No, you’ll take it now”.  Oh S**t.  Apparently, what they found was most probably a malignant tumour along with a slight enlargement of one lymph node.  After the follow-up appointment with an urologist, they decided that the best course of action was to whip it out.  You function perfectly well with only one, and also, if they did a biopsy and it turned out to be cancer, there is more likelihood that it could spread if you disturb it by taking a sample.

Andy Coles - 'Survivor'

One week later, I had the surgery, and thankfully woke up two hours later.  I had the following four weeks off work to recover, followed by a CT scan.  The scan confirmed that it was cancerous, and also four fifths of the hens egg sized testicle was a tumour.  The really good news was that the connecting tube that was removed as well showed no sign of cancer; this means the cancer is classified as a Stage 1 Seminoma, because everything is confined to the testicle itself.  I was told that there were two options that were being considered, firstly a single dose of Carboplatin as adjuvant therapy (post-op), given over one hour, or a course of BEP Chemo (Bleomycin, Etoposide & Cisplatin), given over 72 hours if the lymph nodes or lungs were found to be diseased.  While the specialists decided on the method they would use, I was advised to store some sperm in case my fertility was affected, so taking matters in hand, this is what I did for the next six weeks.

I was told a few weeks later I was to receive a single dose of Carboplatin.  Prior to that, they have to assess if my kidneys were functioning properly (the body removes the chemotherapy drug through your kidneys, so they have to check they are working properly).  They inject a radioactive isotope into your blood stream, and then take a series of blood samples to see how the kidneys deal with it.  Apparently this was all ok, because I had the chemo session on the 15th May.

The specialist (Dr Church), who told me that Carboplatin rarely affects the patient’s sperm court, so all that work was for nothing.  He also said that this drug rarely causes hair loss, and then only a thinning.  I was taking to a comfy chair in the chemo suite that had a drip machine next to it, and a nurse hooked me up to a canula in my arm where the drugs were fed in.  When the hour was over, another small amount of saline was pumped through to make sure everything had entered my bloodstream.  Then I was allowed to go home with a supply of anti-sickness pills.  The only side-effect I had was total exhaustion for the first week, like feeling worn out raising my eye brows, but this got better over the next two weeks.  I can honestly say I wasn’t sick once, but this is only my experience; it might be different for other people.   Once I had recovered from the chemo, I had to wait for my first check-up to see if the cancer had been totally removed.

Waiting three months is actually harder than it sounds (especially with these implications), but my first review came around on 23rd August.  The process is very easy (if you don’t mind needles), and involves having some blood taken and having a chest x-ray.  I will also have to have a couple of CT scans, but only after two and five years are up.  Strangely enough, I now consider myself lucky, because at least the cancer has been found, and was dealt with successfully.

Déjà Vu all over again!

Move forward to 2009, I start getting an aching sensation in my groin and a “dragging” feeling in my remaining testicle.  I know from reading other stories that these can be an indication of a recurrence, although it can mean a myriad of other things.  I decided to get checked out properly after my previous experience.  Ironically, my GP said that if I had been anyone else, without my cancer history, she would have prescribed a course of antibiotics and told me to get on with it.

An ultrasound found some thread-like abnormalities in the structure of the testicle, so I was booked in to have a frozen section biopsy on 22nd May to see what was going on.  During this procedure, the surgeon removed the testicle from the sac without detaching it, and they took a biopsy.  This is rushed to the lab to be checked, and it cancer is found; they return and complete the removal.  If nothing is found, they replace it and sew up the incision.  Originally, nothing was found, so everything was return to place.  The sample was then subjected to more detailed investigations, and this was when my problems started for real.

They found that I was suffering from a condition called pre-cancerous germ cell neoplasia, which is how cancer starts in the testicle, before it grows into a tumour that can be felt.  I asked the urologist if there was a chance that it would not develop further, and he said there was no chance of “if”; it would develop at some time.  I was given the option of either having the second orchidectomy or starting a surveillance protocol to catch it when it did change.  Assuming that I waited, the chances are that I would have the operation anyway, along with possibly a course of chemo or radiotherapy.  I therefore chose to have the operation, and get it over with.  I went under the knife (again with Dr. Howell) on 27th August, and the operation went smoothly.  The only problem that I had was that, because of the previous biopsy operation, they had to cut through existing scar tissue, which meant that the incision took a lot longer to heal up than first time around.  This testicle was then tested again properly, and no actual cancer was found in the testicle or the attached cord.  This being the case, they pronounced me cancer free (an OFFICIAL ‘SURVIVOR’) as of 11th September 2009.

When I started this log, I mentioned that I felt lucky to have found the Stage 1 cancer early enough to be dealt with effectively.  This second experience has reinforced that belief, as without regular checks, the early signs I felt could have been missed.

My oncologist said what I had was two totally separate occurrences, and not linked with each other.  You could say that this would mean I was extremely unlucky.

I don’t see it that way.  I was born a ‘survivor’; I continue to BE a ‘survivor’.

I think that makes me very lucky, don’t you?  –  Andy Coles