Experience of new Cancer Treatment Trials - why I wanted to particpate and why I withdrew from the trial

Hi all, just putting this out there in case others might find my experience of deciding to go on a trial and then deciding to withdraw from it (and the reasons for this) usefull.

After having had a colostomy and being made aware of the need for "mop up" chemotherapy to deal with any residual cancer cells, I was told about a new trial that used a new blood test to see if evidence of cancer cells could be detected from a blood sample and if not, go on to reduced chemotherapy to reduce the side effects if nothing specific had been found).

I was initially very supportive of this, both in terms of helping with the broader trial and in terms of my own health benefits (potentially less side effects, more attention being given being part of a research trial rather than "standard" treatment, more regular checks and contact with clinicians).

However, a catalogue of errors in information and process even before treatment started resulted in me withdrawing from the trial (with the support of the local NHS team who thought this was the right decision for me).

I was very disappointed in the whole trial process for a number of reasons;

• The Patient Information leaflet (PIL) provided to 'inform' patients so they could give "informed consent" to participate in the trial was riddled with spelling mistakes, grammatical errors, unclear statements and contradictory information.
• Unclear information provided by the specialist (private) laboratory about how my blood sample was to be labelled led to incorrect labelling and delays in my blood sample being processed and hence delays in the start of my Chemo treatment.
• The first blood test results had to be repeated as they were inconclusive. This didn't give any confidence that the blood test itself was reliable enough to be a key marker in what treatment I was going to have.
• There were SERIOUS MISLEADING statistical statements in the PIL that downplayed the reliability of the blood test (with just under a 1 in 10 chance of a "false negative" result, this was described as "a small chance", but on any information sheet on side effects to do with drugs, a 1 in 10 chance of a side effect occurring is described as "common" - From a statistical analysis point of view, something that is "common" cannot also be described as a "small chance".
• When telephoning the Senior Trials Manager, my concerns were dealt with very dismissively and I got the impression that they just treated participants in the trial as "lab rats" not as consenting adults that had the right to raise concerns when provided with incorrect, slap dash and highly un-professional information.

For these reasons, I ended up deciding to withdraw from the trial as I had no confidence in the way it was set up and being run (This is in no way a reflection of the local NHS team who were actually very supportive and grateful for me raising issues that should have been identified in the existing checking process but were not ).

If anyone else has had similar experiences with this or any other trial, I would be happy to discuss in more detail.