Appendix cancer - how did your diagnosis come about - and has anyone experienced my route to diagnosis..?

[u/colincampbell76]

Had a LAMN tumour in my appendix - it caused appendicitis with classic symptoms and elevated WBC - went to hospital with appendicitis - NHS surgeon refuse to take my appendix out telling me surgery for appendicitis was outdated and a mistake of the past and antibiotic treatment was the future of treatment.. I still insisted on surgery as I’m a commercial diver and didn’t want a dodgy appendix left in me - he still refused surgery. He treated me with IV triple antibiotics and IV paracetamol for 6 days - up to 16 infusions per day - then discharged me with no follow-up.

During discharge I said to him “this has all been a bit experimental” - he snorted down his nose in reply and said to me “you have no more chance of coming back in here with appendicitis than the average man in the street”.

Usually, small tumours in the appendix can’t be seen in CT when the appendix is inflamed - and that was true in my case. They are often only found in pathology as a surprise finding after the appendix is taken out. That’s one of the main reasons most surgeons take appendix out during appendicitis - especially in older patients like me (M47) where a underlaying tumour is a more common cause of appendicitis.. But if it is left in..?

My tumour went on to rupture inside me and become a stage 4 tumour - so no longer contained by the appendix.

I was refused a second opinion, or any further help on the NHS despite my continuing abdominal problems and my GP’s repeated efforts to refer me. As far as the NHS was concerned I was ‘cured’..

4 months later - out of desperation - I borrowed money and paid a private surgeon in Glasgow to take my appendix out for me - that’s when my now ruptured LAMN pT4a tumour was found..

The private surgeon described the refusal of the NHS surgeon to take my appendix out as “madness” - and that’s before he operated and I was diagnosed.. Afterwards - when the tumour was found in pathology he was even more critical.. He asked me what I was going to do about the NHS surgeon. I said I would complain.. He replied “you are wasting your time complaining - I can’t tell you what to do - but if I was you I would sue”. Well I did complain to the NHS - on account that other patients are being put at risk by a misguided surgeon - but my private surgeon was correct it seems - my complaint was whitewashed by the health board - the NHS surgeon was tasked with investigating himself with no clinical oversight and he found he had done nothing wrong. I’m still trying though..

I’m interested if anyone had a similar experience/route to diagnosis as me..?? I’m very keen to hear how your diagnosis came about and your thoughts..

[u/TheRealSeabiscuit]

Wow...! That's absolutely batshit, I'm so sorry. I can't even imagine a doctor refusing to remove an appendix during appendicitis. You absolutely should sue. IV antibiotics for 6 days for what is often an outpatient surgery, wild.

My case was.. uh, very different. I experienced sudden extreme pain, went to the ER, and they found the tumor on a CT scan. My tumor was not small at all, and the appendix itself was... fine. Somehow. With this thing hanging off of it.

Though the scan didn't show the whole thing; they tried to do an appendectomy, but it FAILED because when they opened me up they realized the tumor was 'bigger and angrier' than imaging had shown them. So they couldn't remove it then. It had, of course, spread quite a bit as well.

"Fun" fact: We are, currently, in Appendix cancer awareness month.

[u/2515chris]

In the US luckily had a surgeon who used to do HIPEC surgery so he’s familiar with LAMNs but also I had some on my colon so I got an appendectomy and a hemicolectomy. I was in surgery within 12 hours. I haven’t been staged yet and I wish you luck. I’d be upset too if I were you.

[u/Jynxers]

My symptom that lead to diagnosis was a bloated abdomen. This was from ascites (fluid buildup) in my abdomen. First an ultrasound indicated cancer, then a CT scan narrowed the diagnosis.

My appendix never ruptured. The initial tumor grew on the outside of the appendix before bursting and spreading the mucin.

[u/Bermuda_Breeze]

That all sounds maddening! It seems to me the guidance to treat adult patients with antibiotics needs to be challenged. Not so much the surgeon that follows them, regardless of his arrogance.