Richard’s NET journey

From the outset, my treatment plan has been clearly laid out and what I have been told was going to happen has happened.  Initially I was advised that I would start on Octreotide injections, have surgery and an embolization procedure followed up by a course of radio-therapy.  The only fly in the ointment occurred when PRRT was withdrawn from the Cancer Drugs Fund, but my initial concern was eased when it was explained that my application had progressed and that funding was in place.

My experience of PRRT was that my personal experience was always sought out and acted upon.  Examples of this were that the side effects of the anti-sickness drug were noted and a different variety was used second time around.  I also noticed a bit of a jolt when coming off the steroids at the end of the first treatment, so a more gradual approach was adopted after the second treatment.

I was a bit of a trail-blazer in that I was the first recipient of Lutetium at my local hospital, so there was considerable interest when it was first administered – so much so that there was an audience at the back of the room and the adjoining corridor watching the procedure.  I almost felt the need to start telling a few jokes to keep the assembled entertained.  Subsequent treatments were much more low key and took place in the lead lined bowels of my local hospital.  This was not a particularly enjoyable experience – as you are treated from a safe distance, but I am grateful that I had the treatment locally as many subsequent recipients have had to travel to London.

Being the trail-blazer, I noticed a variance with the isolation times quoted between the first and subsequent treatments.  After the first treatment, I left hospital on the Wednesday and was advised to stay in relative isolation until the Friday of the following week.  On the second and subsequent treatments this had been reduced to Friday of the same week.  I assume that in the meantime there was greater understanding of the effects of Lutetium.  The only impact this had on me was that the weekend after my first treatment I had been planning a trip to Old Trafford to see my team play away.  However, the cost of buying not only my seat, but the eight surrounding ones, would have been expensive and I decided against.

The only other treatment mentioned was Sirtex, but it was made clear that I would have to self-fund if we decided to go ahead.  The estimate I was given would have been achievable but would have made a large dent in my pension planning so was not ideal.  However, after discussing the matter with my oncologist it was concluded that there was not a sufficient track record to justify the expense and that we should concentrate on PRRT which has proved to be a success.