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.