One step forward and two steps back…

Meeting with GP

The week started well, with a useful meeting withy my GP on Wednesday, 14 June.  Although she was the person who initially referred me for fast track cancer screening on 30 March, once in the system it seems like she only hears about what’s happened relatively late in the day, eventually getting copies of reports by other agencies.  So it was good to be able to bring her right up to date with news of the second colonoscopy due to happen the following day, and the first meeting with a consultant booked in for next week, on 22 June.  

She also said she would formally follow up with InHealth (who did my first colonoscopy) what had happened to my fast track cancer pathway.  This did not appear to have been passed on to the hospital with the request to follow up the subsequent CT scan which showed a mass which looks like cancer. 

She is happy for me to contact her by email with updates or queries, taking into account that she only works at the surgery on Wednesdays, so better to contact the practice generally rather than her directly with anything urgent.   

I can request copies of any reports/notes etc, but the CT scan report and images are still at the hospital so would need to arrange access via the hospital rather than the surgery.  I should get advice from the consultant next week when/whether to restart iron tablets (paused in the run up to the CT scan and second colonoscopy).  Up to me whether to take probiotics: no real downside; little difference between branded and unbranded products, just see how I feel.   

Colonoscopy No 2

After meeting with the doctor in the morning, I started taking the bowel prep ready for my second colonoscopy the following day.  This was requested by the multidisciplinary team (MDT) who want images and tissue samples from the mass which showed up on a CT scan, which the original colonoscopy had been unable to reach due to a constriction (narrowing) of the colon which prevented camera access.  

Even if the biopsies had not been examined by the time I meet the consultant next week, it should be possible to establish from the images whether the mass is cancer or something else, and this would inform my treatment plan. Until then, the MDT err on the side of caution and assume its cancer (the most likely outcome).  However, only a biopsy and images will confirm this for sure. 

If you have ever had a colonoscopy, you will know it’s not a pleasant procedure.  It starts with a “low residue diet” for 2-3 days before - food with fibre like fruit, vegetables, anything made of wholemeal flour or containing seeds is forbidden.  In short, really boring and uninspiring meals.  Then starts the purging and fasting.  Meds are designed to clear out the bowel so the camera can see what’s going on inside.  No solid food intake for 24 hours before the procedure, and what’s already in there comes out, usually very rapidly and without much warning.  You really can’t go very far from a toilet while this is going on!  Then nil by mouth for a couple of hours before the procedure itself.  Difficult on a very hot day, like last Thursday when you dehydrate quickly and are gasping for water by the time it starts…

I have now been through this process (or something very similar) four times in the last 9 weeks.  No wonder my guts don’t know what’s hit them!  I really hoped this was the last time I had to do it, at least for quite some time.  I also really hoped that this time, the smaller paediatric camera would be able to get through the narrow gap where the colon is constricted, and be able to take images and biopsies of the mass.  

Sadly, my hope was in vain.  Once again the camera could not progress beyond the constriction about 60cm along the colon, so no images of the mass and no tissue samples.  This was what I feared…Quite where this leaves me in terms of a treatment plan and start date, I guess I’ll have to wait and see until next week when I see the consultant.  What will Plan B be?  

Breaching the cancer pathway 

In the UK, there are time targets for dealing with patients who have suspected cancer.  You are supposed to have a diagnosis within 31 days for a fast track referral from your GP, and start treatment within 62 days of the referral if cancer is diagnosed.  This is so that patients don’t have the shadow of cancer hanging over them for a long time (and believe me, it’s stressful waiting for confirmation one way or the other) and so that detection is early and treatment starts quickly so as to give the best outcome.  

Technically, I don’t have a firm diagnosis yet -just a “mass” which looks like cancer on a CT scan, but has not been tested and confirmed via a biopsy.  And that took 50 days, rather than the 31 day target…Even if I am given a treatment plan on 22 June and surgery happens some time in July, that will be significantly longer than the 62 day target to start treatment in the cancer pathway.  Even that timetable appears to be in jeopardy now, with the failure of the second colonoscopy to access the “mass” in order to take pictures and collect tissue samples.  

What now, I ask myself?  Deep breath and try not to panic…