u/colincampbell76

Has anyone else been treated with IV antibiotics when they have had a tumour in their appendix causing appendicitis..? This happened to me after surgery was refused in the Uk - I’m keen to know if others have been treated like this.,? Stage 4 ruptured LAMN tumour only found when I much later paid a private surgeon in Glasgow to take my appendix out for me..

Conservative (non-surgical) treatment of my CT diagnosed uncomplicated appendicitis turned into a medical train wreck for me.. Have anyone else had problems after their appendicitis was treated with antibiotics only..? 49M in the UK.

This was in the UK (Scotland) - a NHS surgeon refused to take my inflamed appendix out and told me that “surgery as a first line of treatment for appendicitis is a mistake of the past and antibiotics is safer and the future of treatment..”. He also told me I only had a 15% risk of reoccurrence….

I was unconvinced and argued persistently for surgery as I’m a fit and healthy 47M and work in remote places as a commercial diver and needed a definitive cure and not to just treat the symptoms and hope for the best.. As part of my argument I told him that neither me nor he (the surgeon) knew what was causing my appendicitis nor what condition it would be left in.. He retorted that “..it will just shrivel up and you will be cured”. At the time he gave me the impression that he was somewhat fanatical about conservative treatment of appendicitis..

I had to refuse further IV treatment due to worsening severe IV Metronizadol intolerance symptoms on day 6 of treatment and leave the hospital for help - as I left the surgeon discharged me for convenience and when I said to him “..this has all been a bit experimental “ he snorted down his nose and said to me “..you have no more chance of coming back in here with appendicitis than the average man on the street..”..

I was refused a second opinion on the NHS despite the referral by my GP and his escalation letter was ignored.. Eventually 4 months later and with mounting abdominal problems and facing bankruptcy because I couldn’t work, I gave up on the NHS and paid a private surgeon to take my appendix out for me.. That’s when the now ruptured LAMN pT4a stage 4 tumour was found.. For me this is something of a medical train wreck - and likely totally avoidable if my appendix had been taken out at the start and not left in to rupture and allow the tumour to spread.. A simple early appendectomy would likely have been curative at the start - and now the belated appendectomy is not.

I complained to the local heath board, but it was a total whitewash.. ..after a 5 month delay due to ‘staff shortages’ they tasked the surgeon in question to investigate himself with no clinical oversight - and funnily enough he found himself not to be at fault.. My complaint was not upheld.

Questions arise from this..

1). Was there joint decision making with the patient as required in GMC professional standards - and informed patent consent obtained?

2). The 15% recurrence rate quoted was hopelessly misleading.. The largest and most statistically significant trials (CODA and APPAC trials) have found reoccurrence needing surgery rates of 49% and 44% by year 4 after treatment. Longer term that will be higher.. This does not account for cases that have recurrence and are retreated with antibiotics again. And the trials were voluntary and 70% refused the trials and insisted on surgery. It’s safe to assume the 30% who accepted to be entered into the trials had more mild symptoms and were in less pain (and were told recurrence would be about 15%!), so were likely to respond better to antibiotics than the more severe/painful cases in any event - so there is a strong selection bias here.. Several experienced colorectal surgeons have said to me that real world reoccurrence rates are well over 50% and non-surgical treatment “leads to nothing but problems”..

3). Missed neoplasm/tumour.. About 1.5% of all appendectomies find an unexpected neoplasm/tumour in pathology- IF the appendix is taken out off-course.. Most appendicitis patients are young, and the rate of finding neoplasm/tumour rises steeply with age over 40. So if you are 47 for example your risk is not the same as the average appendicitis patient who is likely to be a teenager - it’s much higher.. ..probably about 5% for the older age group and 0.5% for the younger age group..

..well it’s a deep dish. In 2025 I did point out to the National Institute for Clinical Excellence (NICE) mistakes in the NICE clinical guidance that covers 55,000 appendectomies in the UK every year. One of these mistakes was they claimed a 15% reoccurrence rate after conservative treatment, and they omitted to mention risk of missed neoplasm. They admitted the mistakes and rewrote the guidance in - though it’s still woefully inadequate .. They called it a “minor update” and told me the mistakes were due to “outsourcing “.

Has anyone had a similar experience of being fobbed of with antibiotics and told they were cured..? I’m keen to further improve both clinical and patient guidelines so there is less of a chance of others following in my footsteps… Any thoughts or relevant experiences that people are willing to share would be greatly appreciated..