I’ve nearly survived five years since getting pancreatic cancer – so what’s next?

On Monday I went along for another CT scan to see whether or not my pancreatic cancer has returned. Thankfully the scan was clear. However when I went into the CT scan room I was greeted cheerfully by the radiographer who, after connecting me to the drip, said to me, “This must be your last scan?”  I told him I had no idea but that I didn’t think so.

In a few months’ time it will be the fifth anniversary of my pancreatic cancer diagnosis, which is why the radiographer thought my regular scans would cease. Curious to know what my follow-up beyond five years would be, I asked my oncologist the next day about what happens now and what the protocol is beyond five years?

You hear of patients with other cancers who hit the five-year mark without their disease coming back who are effectively ‘signed off’ from the oncologist or just reviewed once a year. I however had no idea about what the protocol is for pancreatic cancer patients, whether such a protocol exists or whether pancreatic cancer patients are ever ‘signed-off’ completely.

Unfortunately the number of patients reaching five years equates to only a couple of hundred a year. It makes sense then that historically patients have been dealt with on a case-by-case basis according to the opinion of the oncologist treating and the wishes of the patients themselves.

There is an argument though for having some form of formal protocol and for continuing to monitor patients, especially those with adenocarcinomas, beyond five years. Currently,patients who suffer recurrence of disease up to two or three years after surgical resection have very limited options in terms of treatment with curative intent.

The same however, may not be true of those who are unfortunate enough to have a recurrence of the disease after say, five years. This is down to the fact that after such a long period of time since the original tumour, the recurrence may have a different biology that makes procedures previously ruled out for recurrent disease actually worth trying. Food for thought.

As for my ‘protocol’ we have agreed that for the next two years I will have six-monthly appointments. One for a blood test to monitor my CA19-9 tumour marker levels and the other for an annual scan.

I would be very interested to hear form other patients about how they are followed up.