“My recent NED (no evidence of disease) has bought me another 3 months of peace for which I am extremely grateful.”
Dove on the Berlin Wall in Berlin – photo by howlzap Cologne

I had a cystoscopy on Friday and thereby bought another 3 months peace of mind.

My bladder looks battered, purple tinged and a little raw in places, but no tumours were lurking. Relief all round. We had a doctor-in-training in on the procedure and my doctor updated her on my case – I saw her eyes visibly widen in surprise as we recounted my bladder cancer story. 18 cystoscopies, 10 operations, 5 recurrences, 5 years since diagnosis and over 4 years treatment with mitomycin.

I asked what they thought about doing a ‘bladder mapping’ procedure after my next 4 rounds of EMDA. It involves taking several samples from various places in the bladder and checking for tumours. Here it requires a TURBT operation and 4 days in hospital.I asked because it had been mentioned in hospital as another way of establishing that this course of treatment has been successful.

I’m not keen on this idea as my bladder:

  • is very scarred and taking biopsies will exacerbate this
  • has thin walls resulting in two perforations one of which was during said procedure

The doctors said in unison that the cystoscopy is the most important check-up and they didn’t twist my arm to do the mapping. Instead, they mentioned that as an extra check I could have an NMP 22 (Nuclear Matrix Protein) done. NMP is a tumour marker for bladder cancer that only involves a urine test. So even when I heard that my health insurance company won’t cover the costs and I have to pay about €30 it seems very much a no brainer. My recent NED (no evidence of disease) has bought me another 3 months of peace for which I am extremely grateful.

In the meantime, I’m going to add mannoose to my vitamin and supplement intake and hope I can see a difference to my bladder next time.