Adrian is one of our Cancer Patient Partners. He volunteers with Healthwatch Essex to ensure that the voice of the people using cancer services across Mid Essex is heard and used to inform future changes. In his blog below, he shares more of his story and in particular, his experience with GPs.
Well April was the last time I put finger to iPad and things have changed, as they do.
You may remember that in April it was all very positive because the tumours had shrunk. June saw that to be short lived good news, since by June they had grown. Under the deal with NICE and the Cancer Fun the treatment stopped immediately. It did not raise morale at all when the MEHT Chemo. Day Unit rang up the next week to find out why I had not attended for my regular treatment!
In September I had another CT scan which identified the tumours in my lungs had doubled in size – not a surprise – and a course of a different chemo was agreed on (Docetaxel or Taxotere). I also agreed to support and end of life planning with Farleigh Hospice.
These latest developments have started me thinking about the beginning of this journey.
There are over 100 types of cancer that attack on most parts of the body. I have cancer of the base of the tongue, as a primary, which has now spread to the lungs. So this is my area of “expertise” and I cannot comment on other types, but I can comment on interactions with GPs when trying to obtain diagnosis/referral.
The Daily Telegraph, 05/09/2019, p.12.
More than 40 per cent of cancer patients saw their GP at least twice before being referred for tests that led to them being diagnosed, latest NHS figures show. An NHS patient experience survey, completed by 73,817 people with cancer, found thousands had to make repeat visits to family doctors before eventually being sent for tests. Of 51,973 people who saw their GP with symptoms, 15 per cent had to go back three or four times before they were eventually referred to hospital for further investigation.
If squeamish stop reading now.
In October 2016 I started to get food stuck in my throat whilst eating, causing an explosive cough until the food had come back up. This was not all the time, but quite often.
On 19th November 2016 I went to the GP (one of 4 at my surgery) who had been an ENT consultant. He did not agree with my description of my symptoms. He said he thought the food was coming back up from my stomach because I must have a hiatus hernia. He arranged for a Barium meal.
6th December 2016 I had the Barium meal at Springfield Hospital, as MEHT dept. was closed. This indicated I did have a hiatus hernia.
19th December 2016 I returned to the GP surgery and saw a different GP who prescribed pills to reduce acid in my stomach to help with the hiatus hernia (which was not giving me any problems) and decided to send me to Braintree Hospital for a Gastroscopy (camera down the throat). He also would not believe me when I insisted that the food I was having to cough up was not coming from my stomach, because it had not gone down that far and was getting stuck on the way down.
16th January 2017 back to the GP, same as above, who stated that I definitely did not have cancer but that my problem was my hiatus hernia ( heard that somewhere before), and prescribed more of the pills to reduce stomach acid for hiatus hernia. I again asked how that explained the fresh food and drink ( and not part digested food ) which was, by now, coming down my nose sometimes, my changing voice and cough. The GP decided to send me back to Braintree for an X-ray to check my lungs.
20th February 2017 back to the GP to get results of X-ray. I decided to get an appointment to see a GP, whom I knew, but had not seen for a while. As soon as I opened my mouth he said “that’s not the Adrian I know“. Just by saying a few words to him he had an idea of what I had. He very quickly suggested it was bad news and that he would refer me to MEHT for an urgent appointment.
28th February 2017 in ENT Dept. at MEHT I was informed that they were pretty sure it was cancer at the base of my tongue but I would need a biopsy to confirm it – and that’s how the journey started.
With peg fitting, teeth removal, biopsy, mask fitting, and so on, it was 24th April 2017 when my radiotherapy and chemo therapy treatment started in Colchester General Hospital.
My point is that it took 7 months from the time my symptoms started until the treatment started, 4 visits to the GP, 4 visits to different hospitals and I had to be very mobile and flexible to get the support I needed to gain the diagnosis. In all that time the first 4 months were “lost” because the GPs had decided that they knew what my symptoms were and that I did not, and also, having made an initial (and incorrect) diagnosis their minds were closed to any other explanation.
If you find yourself with something you do not understand and changes in your body that you do not understand you should see your pharmacist or GP urgently.
But then what you must do is satisfy yourself that the answers you are given satisfy you, match/explain your symptoms and are timely. The earlier the cancer is identified the more chance they have of fixing it or stopping it spreading. We do not have all the answers but what we do know is that doctors are not gods and are just a fallible as you and me.
Good luck to you all – you can beat it! But you have to take the journey into your own hands.