Some questions answered and more raised…

 Rather than sit around waiting for things to happen, I took the initiative and contacted three cancer charities hoping to get answers to questions which are still nagging me.  Bowel Cancer UK was the first to reply… so now I’m not only a bit older but a bit wiser too!  I also talked to my cancer care nurse on 13 June and she filled in some more blanks.  We can bring the GP up to date when we meet her the following day. 

Cancer Pathway waiting times

My first query was the date on which waiting times for diagnosis and first treatment are based, using the UK Cancer Pathway waiting times.   

In theory, its the date on which the GP refers a patient to hospital under the faster diagnosis 2 week wait (2WW) referral.  However, my GP didn’t refer me to hospital straight away, but to a community endoscopy clinic for a colonoscopy to check for cancer, after becoming concerned about my blood test results (low haemoglobin and high platelets).  That happened on 30 March 2023.  

I was eventually referred to hospital not by my GP, but by the endoscopy doctor when she received the results of a subsequent CT scan which showed a “mass” which the colonoscopy camera had been unable to reach due to a narrowing of the colon (a “benign constriction” according to the report).  That referral didn’t happen until 19 May 2023.  

The cancer pathway is 31 days (approximately one month) from first referral to diagnosis, and 62 days (about 2 months) from first referral to start of treatment.  The 7 week/50 day difference between the two referral dates is therefore significant in the context of the cancer pathway. 

Bowel Cancer UK confirmed the start date for calculating diagnosis and treatment waiting times should be 30 March. Based on that date, I’m already way behind the Cancer Pathway diagnosis and treatment waiting times.  This has fuelled my anxiety, not surprisingly.   

It seems that my cancer pathway from 30 March went missing somewhere between the InHealth Endoscopy Clinic and the hospital.  The GP might like to follow this up.

Delays carrying out the colonoscopy

My second query related to the delay in carrying out the colonoscopy first requested in early March.  The service provider InHealth said they couldn’t do the procedure because NICE (National Institute of Clinical Excellence) guidelines advised waiting until 6 weeks after a course of antibiotics had finished.  As a result my first appointment was pout back from 3rd to 26th April, and the subsequent fast track appointment on 13 April put back to 2 May. 

Bowel Cancer UK was unaware of any NICE guidelines but confirmed it was good practice not to carry out a colonoscopy until 6 weeks after an acute bout of diverticulitis to enable the bowel to recover and reduce the risk of damage and pain. So…the right decision for the wrong reason.  At least I know now…

Chemo before and/or after surgery?

I know that surgery will be the key to dealing with my cancer, but wasn’t sure whether chemo would be required before or after.  Bowel Cancer UK confirmed my understanding that chemo not usually required before surgery for my current staging of cancer.  Whether I need it after will depend on the pathology of the removed cancer and lymph nodes, and other factors that can only be determined once removed, such as biological and genetic make up of the tumour.  That makes sense to me. 

Is the delay to treatment significant in terms of prognosis?

I have been getting very stressed that the cancer might have grown through the bowel wall and started spreading by the time I have treatment.  That’s always a possibility.  However, Bowel Cancer UK pointed out that bowel cancers are often present 2-3 years before they are discovered, so the waiting time I have experienced may not be significant in this context.

Is a biopsy essential before treatment when you know surgery is necessary? 

Bowel Cancer UK pointed out that bowel surgery is a big operation and the colorectal specialist teams will will require a biopsy to confirm cancer before operating.  

My cancer care nurse explained further…the mass looks like a cancer tumour on the scan, but there is a very, very remote possibility that it might be an inflamed stricture rather than a malignant growth.  Unlikely, but remotely possible.  They can only rule this out if samples are extracted for testing.  While surgery would be necessary in both scenarios, if it’s not cancer, then they would not remove the lymph nodes as well. Now this makes sense of the advice given before that they do not want to “under or over treat”.  

If the colonoscopy camera couldn’t get beyond the stricture last time, what hope now?

This has been worrying me…but my cancer nurse tells me that in hospital they have paediatric colonoscopy cameras used to examine the bowels of children which are much smaller.  If necessary, one of these could be used to get beyond my stricture.  They will stop the procedure if it becomes unsafe to carry on.  If there is a problem caused by pushing through a very small gap, then I’m in hospital where they will be able to deal with it quickly in an emergency, unlike the endoscopy clinic which is attached to a small community hospital where such facilities and expertise may not be readily available. That would explain why the doctor who did my colonoscopy was reluctant to push through the constriction in case of an emergency…

What happens when I see the consultant on 22 June?

Even if the biopsy results are not ready, they can look at any pictures taken at the colonoscopy and tell from those images if they are dealing with cancer or something else.  We will probably discuss surgery; likely to be keyhole (laparoscopic) surgery.  They have an enhanced recovery programme after surgery (ERAS) and aim to get people moving soon after the operation.  My cancer nurse couldn’t say for sure, but it seems likely that treatment i.e. surgery will happen some time in July.  At last, a draft timeline!