Second Post-BEP CT Scan

In the months following chemo, I tried to look after myself well. I was eating a fairly clean, predominantly vegan diet which was largely organic. I stayed away from alcohol and caffeine, as I’d done for the last year and I continued taking a lot of the supplements that I’d been on, notably curcumin, vitamins C, D3 & K2, some herbal formulae and Chinese mushroom extracts, predominantly from reishi, cordyceps and coriolus. I also continued with BodyTalk every few weeks.

Pia and I attended a really good three-day retreat in October with a group called CancerUCan. The group included a range of people at different stages of their cancer journeys, some who were recently diagnosed, others who had recovered long ago and many in between. There were notably several attendees who had been diagnosed with stage 3/4, or even terminal cancer, who had made full recoveries, often with little to no conventional treatment. It was great to talk to them and to hear how they had navigated through their cancer experiences. We had talks and workshops from a few people including Chris Woollams from CancerActive. It was a very valuable and motivating event.

Towards the end of the year I managed to get a few days of work that I could do from home, which was good, but even 3-4 months after completing chemo, I still wasn’t feeling quite up to travelling for work and being away from home for days at a time. I still found that I couldn’t exert myself beyond a certain point without getting very worn out and this was limiting what I could do.

In early January 2020, I had my second CT scan since completing chemo. I hadn’t expected it to show much, but my oncologist was quite concerned with how it turned out. The residual mass, while looking more uniformly fluid (a good sign), had changed shape and was slightly larger in two of three dimensions. Although the change was small, it was none the less apparent. The immediate concern was that if it continued to expand in the same way then it could start to press on my kidney and impair its function. The advice I was given was to proceed with the RPLND surgery.

I didn’t want to do the surgery. Part of me just wanted to get on with my life and not have another major interruption, but I was also scared. I was scared of having such a major operation, I was scared of things going wrong and I was scared of the side effects of the surgery manifesting. Although I was not completely ruling out any course of treatment, I was just about drawing a line at undergoing RPLND. I wanted to be sure that it was truly worth my while doing it before going ahead.

We went to see the surgeon again to talk things over. He indicated that the surgery would be tricky enough as it is, but that the longer I waited, the harder it would be and the higher the chance that some of the unwanted risks could occur. He gave me a copy of what I consider to be the most complete patient focussed leaflet on RPLND that I’ve read on the procedure. As well as explaining the procedure, the leaflet also gives the approximate risk of various “after-effects”:

Problems with weak or absent ejaculation after the surgeryBetween 1 in 2 & 1 in 10
Accumulation of lymph fluid requiring needle drainage or further surgeryBetween 1 in 2 & 1 in 10
Infection, pain or bulging of the incision requiring further treatmentBetween 1 in 2 & 1 in 10
Temporary problems with delayed bowel function requiring prolonged nasogastric (stomach) tube insertionBetween 1 in 2 & 1 in 10
Need for removal of additional organs on the affected side (usually a kidney, damaged by blockage from the lymph nodes)Up to 1 in 10 patients (10%)
Bleeding requiring transfusion or further surgeryBetween 1 in 10 & 1 in 50
Need for further treatment if we find any residual cancer in the lymph nodesBetween 1 in 10 & 1 in 50
Injury to nearby local structures (blood vessels, spleen, liver, lung, pancreas & bowel) requiring more extensive surgeryBetween 1 in 10 & 1 in 50
Entry into your lung cavity requiring insertion of a temporary drainage tubeBetween 1 in 50 & 1 in 250
Anaesthetic or cardiovascular problems possibly requiring intensive care (including chest infection, pulmonary embolus, stroke, deep vein thrombosis, heart attack)Between 1 in 50 &1 in 250
Peri-operative deathBetween 1 in 100 & 1 in 200

The particular risks that the surgeon was keen to highlight were the possibility of losing a kidney, accumulation of lymph fluid in the abdominal cavity requiring a drain, and the possibility of retrograde ejaculation. Retrograde ejaculation is caused by nerve damage which results in one’s ejaculate being deposited in the bladder rather than following its normal path on orgasm (I read that it can self-correct after a couple of years, but the surgeon said that this wasn’t always the case). It can be quite a touchy subject for many men, particularly those younger than me who haven’t had any children yet but would like to.

I hadn’t really expected the urgency of having this surgery to have escalated quite so quickly, but I realised that it wasn’t going to go away and might just get worse. Based on that, I decided to proceed with the surgery.

Post-BEP Follow Up

I had my first post-chemo CT scan in September 2019, about five weeks after completing my third cycle of BEP. I was due to have an appointment with my oncologist a few days later, however on the morning of my appointment, my specialist nurse called to ask if we could reschedule for a week later as they needed to speak to a surgeon before they could give me full feedback from the scan. That didn’t sound good to me and I asked for some brief details over the phone. The main piece of information I took away was that the mass in my abdomen, which the chemo had been targeting, had made barely any reduction is size.

This completely threw me, as my expectation was that the chemo would have reduced and hopefully eliminated the tumour. My understanding was that surgery was something that would be reverted if chemo failed. This got me feeling rather down for a couple of days, thinking that the chemo had been a complete waste of time and effort. After that, I got together some plans to move onto some non-pharmaceutical treatments and I started to feel a lot more confident.

When Pia and I turned up for the rescheduled appointment, my oncologist started showing us the latest scan. We listened patiently, waiting for the bad news to drop. He explained that the spots on my lungs were no longer present (good start!) and pointed out that the main mass in my abdomen now appeared to be less dense which indicated that it was likely to consist of dead cells. At this point Pia and I needed some clarification. Pia said, “So is this good news?”, to which my oncologist replied, “Oh yes!”. We both burst out laughing, having had out pessimistic expectations turned on their head.

What I had not realised, and I would argue had not been explained to me properly, was that a tumour the size of mine would not be expected to reduce in size. Once a tumour of this type is more than about three centimetres across, the chances of it reducing in size are minimal, even if it has responded well to BEP. My tumour had been closer to six centimetres and so didn’t really stand any chance of getting smaller.

In my case, my oncologist was happy that the chemo had been successful and that the tumour was now a residual mass of dead cells. This news was most elating and I was on quite a high for the next couple of days.

What was recommended though, was to have the mass surgically removed. The reason given for this, was that it could possibly contain mature teratomas, which had the potential to lie dormant but then become active and cause trouble somewhere down the line. Although the surgery was recommended, it was neither deemed to be urgent nor necessarily even required. Many people with residual masses such as mine had continued to live normal lives for decades with no bother. That was reassuring.

After a couple of weeks, Pia and I visited Southmead Hospital in Bristol to speak to a surgeon about the recommended procedure. It is known as retroperitoneal lymph node dissection (RPLND). It is not a trivial operation, but major surgery that involves opening the abdomen down the middle and teasing the sticky tumour tissue away from everything that it is touching, including blood vessels and internal organs. It would involve a hospital stay of around five days and a full recovery would be expected to take three months. The surgery is also not without risks including damage to blood vessels, damage to organs, damage to nerves and the possible loss of a kidney.

Whilst some of these risks seemed small, I didn’t feel that they were risks I was willing to take at that stage, particularly if the surgery was not considered urgent. I was also hoping to start getting back to normal life after several months of disruption to my year, and I didn’t want to be taking another three months out unless I really had to. My oncologist was comfortable with this decision.

I started trying to get back to normal, knowing that there was the possibility of needing to have surgery sometime, but not necessarily any time soon.

Post-BEP Recovery

I apologise, dear readers, for my lack of communication these past several months. You may think that I completed my course of chemotherapy and went happily on my way. While that is true, it did not turn out to be the end of my story. I shall endeavour to fill you on what you have missed during the last 10 months and let you know how things are progressing for me.

The last day of my final BEP chemotherapy cycle was 5 August 2019. I had hoped that the following week would see me feeling somewhat better and more energised, but I was actually still extremely tired and had to take it quite easy most of the time, napping most days. I gradually felt less and less tired over the next few weeks, but it was a slow process. Although I became more and more physically capable, I became tired easily and still had occasional bouts of faintness for a couple of months. It just takes time.

I had to continue taking blood thinning injections twice per day for a month after chemo, which was unpleasant. My belly was getting bruised, sore and lumpy. I started having to inject in other spots that were in better condition, usually in the side of the glutes.

The stinging in my urethra continued for two or three weeks, as did the tinnitus, before gradually subsiding. I still had issues doing certain things with my fingertips a month after chemo finished, but that gradually improved. My finger nails actually got worse before they got better (half of one of my thumb nails actually snapped off after a couple of months). It took a good 9-10 months for the damaged parts of the nails to grow out. Although I had no issues with my toe nails at the end chemo, one of them has since appeared to be damaged in the same way that my finger nails were and I can’t see that growing out for quite a while.

After about three weeks, I noticed some definite facial hair reappearing, but it was thin and soft, unlike regular stubble. Likewise, when I started getting some more growth on my head after a few weeks, it was very soft, like that of a newborn. As it grew, it also proved to be much more curly than usual. After a first proper cut, several months later, the curliness returned to normal.

A bit of downy fuzz after seven weeks
Curly first growth, five months after chemo finished

One thing which I hadn’t expected, is that I started to forget what I was saying half way through saying it. I would often start explaining something to someone only to stop mid way through a sentence with absolutely no idea how I intended to continue, even though I had known exactly what I was going to say when I started speaking. This happened quite often and was both frustrating and at times embarrassing. The worst of that occurred during the first 6-7 months post-chemo, but it is still happening occasionally today.

Things slowly started getting back to normal. I’d say that on the whole, I felt more reasonably capable of getting through a day of normalish activities after 2-3 months (with some exceptions).