Background – Metastasis

My first follow-up CT scan was in February 2019. This scan showed some enlargement to a small cluster of para-aortic lymph nodes, which was concerning to my oncologist as it could indicate metastasis. I wasn’t completely convinced though, as there could be numerous reasons for lymph nodes being enlarged. I’d also recently changed some of my supplemental and dietary protocols, including stopping taking some herbal formulae which acted on the lymphatic system. Any of these could have caused some temporary change to tissue in the lymphatic system.

Also prior to the CT scan, my HCG had risen to the upper limit of the normal range (5 IU/L), which seemed to correlate with the lymph node enlargement. However, when measured a week or so after the scan, it had dropped to <1 IU/L. This left me thinking even more that what had shown in the scan was not too concerning.

At this point, to be prudent, I doubled down on how I was eating, what supplements I was taking and how I was looking after myself in terms of exercise and spiritual and emotional wellbeing. I also got in touch with an integrative physician who worked with a lot of cancer patients, and she was able to help me devise a new supplemental protocol, amongst other things. What I was looking to do was get the lymph nodes back to their usual size and shape by the time of my next CT scan three months later.

If anything, this gave me quite a psychological boost and over the three months I found that I was able to be more calm, relaxed and at peace with myself. Even though there was some concern as to what my scan had revealed, I was in a good positive frame of mind and was looking after myself really well.

My next CT scan took place in May 2019. The enlarged lymph nodes had almost doubled in size during the previous three months. There were also a couple of indeterminate spots on my lungs, which were further cause for concern. It wasn’t quite what I’d hoped for, but I was not going to let it get me down. In spite of this, my tumour markers were all normal, but it turns out that they are not necessarily stimulated by metastasised cancer cells.

The suggested treatment for this was a nine-week course of BEP chemotherapy, consisting of three three-week cycles. Chemotherapy was something I’d hoped to avoid. However, the progression of my lymph node enlargement had been quite quick, so it was important that I choose a course of treatment sometime soon, chemo or otherwise. Also, this particular type of chemotherapy had a curative success rate of around 95%, which is phenomenally good. In fact, testicular cancer is one of the very few cancers for which there has been significant improvement in the success of chemotherapy over the past few decades.

Based on the outstanding rate of success, I decided that at this point in my cancer journey I would choose chemotherapy. There are many other treatment options available to cancer patients, which are not necessarily prescribed by the NHS nor most national health systems around the world, and I had looked into many of these. However, on this occasion, I decided that the chemo was the right choice for me.

It was important to me that this felt like a decision that I was making, as it gives me a sense of ownership of my health. I can not imagine that I would have had the same positive mindset going into chemo had I felt coerced into accepting the treatment, or if I had been rushed into it without having had the time to gain an full understanding of all of my options. If there’s anything I could recommend to a patient on the brink of choosing chemo, it would be to make sure that they feel comfortable in whatever treatment decision they make.

A week later, I returned to the hospital to sign a consent form and I was booked in to begin treatment a few days after that.

Background – Monitoring

A few weeks after surgery, in November 2018, I had my first appointment with the Germ Cell Oncology team at the Bristol Haematology and Oncology Centre. They are the specialist unit for testicular cancer in the south-west of the UK.

I was finally given my official diagnosis, based on my CT Scan and the pathology of the tumour that had been removed. My diagnosis was: pT1 stage I combined germ cell tumour (90% classical seminoma, 10% urea ectodermal tumour). My tumour measured 80 mm in length and had grown from the inside of the testicle. The only real testicular tissue that was left was in a thin layer around the tumour. The good news was that my CT scan was clear and no cancer cells had been found in the tissue of any of the surrounding blood vessels.

So it looked like the surgery had done the job. None-the-less, I was to be monitored for the next five years, just to be sure. This would mean monthly visits to the clinic for the first year or so, then progressively less frequent check-ups for the remaining four years.

A monthly check-up would involve a short consultation with either an oncologist or a specialist nurse. I would also have blood taken to check on tumour markers. Chest x-rays and CT scans would be taken every three months.

The tumour markers that are regularly checked for testicular cancer patients are:

AFP: alpha-fetoprotein
HCG: Human Chorionic Gonadotropin
LDH: Lactate Dehydrogenase

For me, HCG had been notably heightened prior to surgery, with a reading of up to around 180 IU/L. The normal range for HCG is from 0-5 IU/L. The other markers remained largely normal for me both prior to surgery and all three have stayed mostly within normal range since. The only exception to this was LDH, which has shown to be above normal at times, but it is well known that a high LDH reading can be triggered by a number of things that are not tumour-related, which means that it is only a reliable marker if it shows consistent readings.

As a side note, I’d made some changes to how I’d been living since my first visit to the GP in September. I’d stopped drinking coffee and alcohol. I’d also started detoxing using the Dr Morse method, something that I’d been meaning to do for a couple of years but hadn’t previously gotten around to. This meant that I was eating a lot of fruit and vegetables, most of it raw, and I was taking a number of herbal supplements to support the body during detoxification. I continued with this until January 2019, at which point I stopped the herbs and broadened my diet a little. I continued to avoid caffeine and alcohol.

Background – Diagnosis

My journey began in August 2018, a couple of months after turning 40, when I noticed that one of my testicles seemed a bit larger than it was supposed to be. Quite a bit larger. There were no discernible lumps, just more overall mass. I didn’t pay too much attention to it to begin with and waited to see if it might go back to normal after a week or two. However, it didn’t go back to normal but rather continued to increase in size.

I visited my GP who was concerned that the growth had been completely painless and that there were no obvious signs of infection. In case it was in any way related, I mentioned to him that I’d also had a couple of episodes during the previous few weeks in which I had become slightly faint and disoriented when standing, for several hours on each occasion. For this I had my blood pressure checked and an ECG to monitor my heart activity, both of which reported no issue. The doctor referred me for an ultrasound of my testicle at the Royal United Hospitals (RUH) in Bath, which I attended the following week.

During the ultrasound, the sonographer noticed a number of dark patches within the testicle in question. There was also evidence of angiogenesis – a profusion of new blood vessels that were entering the testicle. It looked to be a fairly textbook case of testicular cancer, with no real evidence for any alternative condition, such as an infection. The good news was that the other testicle, my bladder and kidneys all looked in perfectly good health.

Following the ultrasound I was referred to a urologist, who I saw a week or two afterwards. I was made to do a “flow test”, which involves peeing into a glorified bucket with a sensor attached to measure the rate of flow. This is a standard test for any patient passing through the department of urology, regardless of the purpose for visiting. My flow was very good, unsurprisingly.

The urologist was a fairly serious chap who didn’t smile much. He gave me an inspection, having already reviewed my ultrasound results. He suggested that I get booked in immediately for an orchidectomy operation, i.e. the complete removal of the testicle. I didn’t commit to the surgery straight away, but said that I would give them a call after I’d had the opportunity to talk it over at home.

I had bloods taken to check for tumour markers: AFP, HCG and LDH (of which HCG was significantly elevated). I also got to sit down in a brightly coloured room with a comfortable sofa and chairs for a while to speak to a specialist nurse. This was clearly the room they use to try to make people more at ease when giving them bad news. At this point, perhaps unusually, I wasn’t feeling the slightest bit fazed. In fact, I’ve not really been worried or fearful at all during the entire episode. I’ve just taken everything in my stride knowing that it will all turn out for the best, whatever happens.

A few days later, I was booked in for surgery in early October.