Are GPS worth their salt?

[b9_iwish]

I was diagnosed with locally advanced PC in November 2019 but only after I had developed a bad case of jaundice.

My point is, are GPS up to speed with identifying the symptoms of this pernicious cancer?

I unknowingly started experiencing symptoms in June 2019 with persistent back ache. But prior to this and purely on a health whim I had a private full health check in January 2019 where it was noted that my platelets were just below 100 - where 100 is a minimum for a normal blood count. The health check was duly passed on to my GP shortly afterwards.

The GP phoned me early April 2019 and went through my results but only became aware of my bloods count after I highlighted which page it was on...! Not much was said.

Moving on into July, my persistent back ache continued to develop and I suffered severe indigestion and bloating. I discussed this with the GP also informing that my father died of PC 12 years earlier.

As things "progressed', the back ache and indigestion worsened and much toing and froing with GP whose diagnosis was always based on IBS. No account taken of my father's PC or the classic symptoms I was displaying of PC. But IBS was the main focus.

I had an endoscopy in September 2019 but only down to the stomach and not into the duodenum which would have highlighted a problem. By this stage I was feeling fatigued even though I was fit and healthy with regular visits to the gym.

Into November and the onset of jaundice and after being ambulanced into hospital had a CT scan on Sunday 24th November 2019 which highlighted the tumour.

Now my point is and after talking with the GP late 2020 - communication was now almost nonexistent between us, I mentioned that a quick search on Google with my symptoms in 2019 would have raised the chance of identifying PC. And this should have been followed up with a CT scan.

So for the price of £600 for a CT scan I could have been diagnosed with PC earlier than November 2019 and chemotherapy starting earlier than January 2020. And for that reason and a lack of knowledge or an inability to Google search my symptoms, I'm asking are GPS worth their salt?

My last conversation with a GP was August last year, some seven months!

[LisaC]

My fiancé had been in contact with the GPs multiple times throughout March-October. Looking back we gave all the symptoms of pancreatic cancer but they were dismissed as side effects of his diabetes being out of control due to him not taking his correct dosage of metformin. He was put on insulin after his blood sugars because really high, this was in the September, we never really got control of it, after some nagging they did some blood tests and from the results they sent him straight to hospital. The A&E dr said all your symptoms could indicate a cancer. It did, it was very advanced and very aggressive. I complained to NHS England about the GP surgery. I felt it could of been picked up earlier. The GPS said as Lewis was non compliant with his medications that could account to all his symptoms and they would not consider pancreatic cancer due to his age (37). They said jaundice is the symptom they look for. Lewis did not go jaundice until the few days before he died. If this the basis of suspecting a pancreatic cancer then it’s too late. I want to write a reply back but I’m struggling to find the words without swearing at them and calling them useless.

[PCUK Nurse Jeni]

Hi b9,

Thanks for your post and sorry to hear this.

I will reply to you via email.

kind regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[b9_iwish]

Hello Lisa, firstly I'm so sorry to hear what you and your fiance Lewis had to endure and the sad passing of Lewis.

I know how angry you are feeling with the lack of awareness of PC symptoms. A simple Google or even NHS website search would have highlighted this cancer. Plus a CT scan would have helped. Using his young age as a reason to rule out PC is unbelievable.

I will very shortly take legal advice in my case, not for any financial benefit (that is of no help to me), but to shake up my GP surgery and get them to take rapid efforts to diagnose others who may show PC symptoms. Hopefully this might have a knock on affect.

I know this doesn't take away the pain of Lewis's passing, but I hope it's of help knowing that others have experienced what you've had to go through and how angry you feel.

My thoughts and best wishes are with you,

B9

[Saxon]

So sorry to hear of both your stories. The slow diagnosis is terrible and there are missed opportunities to catch this earlier.

My wife's story is similar. She had breast cancer in 2007 and made a full recovery. We did talk then about having a test for BRCA2 genetic defect, but the consultant said it wouldn't be worth it as she had undergone the required treatment and had her ovaries removed as a precaution anyway and was given the all clear - it turns out that she had this mutation and knowing this could have resulted in more in depth screening. She was being monitored every year as a result of the breast cancer.

Move the clock on 9/10 years and she was getting stomach and back ache. She kept a food diary to see if it was something she was eating, as my son is gluten intolerant, but we couldn't see the link so she started going to the GP. They suggested she had IBS and gave her Buscopan, but nothing seemed to help. In August 2017, after several more GP visits she was given an endoscopy of her stomach looking for ulcers, but this showed nothing, so back to the GP.

Back pain got worse, but controlled by paracetamol, but started to get indigestion more and more. After further visits to the GP and she was given an ultrasound in December 2017 - think they were looking for kidney stones? She went back to work after having the scan in the morning and they called her back immediately to say that they had found something and needed a blood test. Went for that 2 days later and they phoned her back the same day (Friday) and asked her to come back to the surgery to be told that she had cancer and that the counts for liver and pancreatic cancer were high. The following Wednesday she had a follow up appointment with a nurse which seemed quite inconspicuous, but luckily I went with her. At that we were informed by the nurse that she had PC with secondary tumours in her liver and that as a prognosis to think months not years. The back pain was caused by the secondary liver tumours.

As I understand it, they do call PC the silent killer as you don't seem to get any symptoms from it until it has spread and the secondaries cause pain. GP's are 'general practitioners' by definition and seem to go through an elimination process of more benign illnesses before linking it to PC and not necessarily looking at the patients history.

I must say that once diagnosed, she had a liver biopsy within a week and started chemo in mid January 2018, so the oncology response was fantastic. However, it was always going to be palliative care for her and we watched her slowly decline suffering more and more with side effects of her treatment until she succumbed in March 2019.

[Skippy]

I'd never heard of PC until july 2019.

I have heard since, its is known as the 'silent killer'. In the case of my brother 74 he was fit, without any ailment at all. No indigestion probs, toileting the same, same huge appetite, Danced 3 times per week. Overall fitness was excellent.

He had a blood clot to his leg x 2 in his 40s so was blood tested for his usual Warfarin meds via his Drs surgery monthly.

With no symptoms, as stated, he was telephoned and urged to attend immediately his hospital (only because of his blood test results). A CT scan within 2 weeks revealed a small 3 cm shadow on his pancreas tail. Within weeks he was admitted into hospital for further tests and by 17/9/2019 was in the op theatre for the Whipple Procedure.

His only symptom of this illness was a ' jaundiced yellow face which did not appear until the day before his Whipple op took place.

I think blood tests HAVE to be the priority as a 'general health plan' to all ages, to give a fast diagnosis.