Appendiceal Mucocele

Hi LilyLiver 

Firstly a big welcome and I want to wish you every success with your survey .

I can totally understand your concern with your relatives outcomes but I sincerely hope you have successful surgery and can put this in your rear mirror .

 Appendix Cancer - Goblet Cell adenocarcinoma 

Just wondered if connecting with some long term survivors might help . The lady at the bottom of this thread makes some helpful suggestions.

 Controlling anxiety and panic
Some resources here on dealing with the fear that accompanies the waiting . A patient once said to me to keep your mind where your body is and don’t let it escape to the worst case scenarios . 
Keep the positives stories at the forefront . And reread them everytime you feel Uncertainty getting the upper hand . My mum was a difficult prognosis but surgery and chemo turned that around and she is still here with resections to her liver , lungs and bowel but all have continued to work well despite that and she has lived like this for the last 15 years and that’s a long time in anyone’s life .

Take care ,

Court 

Thank you for your reply, Court. It’s good to hear a positive story!

I’ll take a look at the information you shared.

Hi Lily,

I've just come across your post after searching for mucocele appendix information.

I've just had a colonoscopy, in which they found a bulging appendix and so I've been fastracked for a CT in 2 days, for a suspected mucocele appendix.  The person doing my colonoscopy was a consultant surgeon, so I'm assuming they know what they're looking at. ( In fact they seemed very excited to have found it )

I have a lot of right sided pain which is getting worse daily, and a palpable lump in my right lower pelvic area.

I do think I've probably had this for 18 months minimum, due to symptoms and I've had a high positive FIT test, which doesn't reassure me.

I've also had some swelling noted on my fallopian tube during an ultrasound, so I'm wondering if the two are possibly connected.

It's such a scary time, especially as my family history isn't great and I'm just being sent from one test to another without any real explanation as to what is going on and I'm struggling with the pain now.

I hope that you had a good outcome, and you're doing great now. 

Good morning Sooey

I’m pleased you found my post and I am sorry to hear that you’re experiencing this health situation. It is such a worrying time when you’re faced with test after test. I’m happy to report that after months of tests, then surgery and what felt like a forever wait, the results came back that the tumour was non-cancerous. The surgeon found several ‘worrying’ areas around the appendix so he took biopsies but all was well. I do hope that everything is resolved for you soon. It took me several months to feel back to normal again. But it feels like a lifetime ago now

if you can, try to resist Googling… I think I actually increased my concerns rather than reassured myself by reading lots of articles and research papers. The medical professionals do know what they’re doing, as you say. I found using guided meditations and square breathing on a daily basis helped enormously as did keeping in touch with friends and trying to sit in the garden for a little bit every day. 

I wish you every success with the outcome! Do let the community know how you get on. All will be well. 

Lily x

Thanks so much for your fast and encouraging reply.

I will try to avoid Google from now on

Kindest regards

Sooey x

Hi LilyLiver! 
I am a 43 year old and I have received the same diagnosis as yours. My appendicitis has ruptured and maybe leaking. I was treated with antibiotics on symptoms of appendicitis and stayed in hospital for 10 days. So i am in exactly the same situation as you! Can you let me know how you have got on as I have realised your post is a year old. Many thanks 

Hello SKL

I am sorry to hear about your situation and I do hope that you’re feeling a little better following the treatment by antibiotics. I was a little confused - your appendix has ruptured and may also be leaking? Do you have a diagnosis of an appendicular mucocele? If so, hopefully you’re scheduled for surgery? I have no medical knowledge what so ever, but I do know that I seemed to fall between the cracks at the hospital. I was sent home as ‘fully treated’ by one doctor, whereas another said the appendix had to be removed. I waited to hear but nothing. It was only when I chased up that an appointment was hastily arranged and surgery booked. So do try and advocate for yourself if something doesn’t feel right. 

18 months on from this, I am still fit and well! I wish you the best of luck in your recovery. 

Lily x

Hi Lily! 
Thank you for responding. I’m so pleased to hear you are fit and well now! Well done you! 
So yes I have been diagnosed with a appendicular mucocele. So just backtracking this all started 3 weeks ago. I had severe vomiting on Saturday night almost was sick for 6 hrs continuously and had a belly ache near my belly button. My husband drove me to our nearest A&E I had some tests done, antisickness given and saw a GP - they diagnosed it as gastroenteritis and I was sent home with meds. On Sunday my pain shifted to my right side and I was still being sick! Anyways the pain wasn’t going away so the nxt day I went to see my GP and my right leg was hurting too she immediately said it was my appendix and sent me back to a&e. I then had a ct scan and it was appendix aswell as mucocele and I was supposed to go for surgery and was told the same tht they may need to resection my colon as the mucocele is at the junction of the large bowel. I was told abt the stoma bag as one of the risks etc. Anyways I signed consent form and then got bumped off the list and the surgery dint happen. The case was sent MDT for review whilst I was put on IV antibiotics and on morphine for pain.anyways my markers improved and I had a 2nd ct scan and was told my appendix had ruptured. My pain has gone done and I was discharged by the hospital after 10 days with referral to the colorectal team. Surgery to be done after 3/4 months when the inflammation has come down. Anyways I have now gone the private route and saw a consultant and told to do nothg until the inflammation calms down and they will do a colonoscopy to see what needs to be done. I saw a colorectal surgeon the nxt day on nhs and it all then blew my head as he mentioned the appendicitis mucocele is a very rare condition and only Christie in Manchester and Basingstoke hosp deal with these cases and it will be sent there for advise as there is so much unknown. He was talking abt tht PMP ( pseudo…) if cells have leaked in my abdominal cavity etc. so honestly i actually don’t know what is happening in my body and the scans need to be seen my a specialist. So I have no idea if the mucocele is benign or malignant. I’m not in pain at the moment and feeling better but I’m so worried and stressed as I have no answers. Did they have to resection your colon ? Did you have a stoma bag at all? When I came across your post i was so shocked tht you had received an almost similar diagnosis to mine. I’m only 43 have 2 kids ( 10 and 13) as a mum I’m so worried and struggling to navigate. Any advise would be greatly appreciated.thank you for listening and reading 

Goodness, you must be understandably anxious. I would be keen to find out if it benign or malignant and I’m guessing only surgery can allow access to take a biopsy? No idea! Pushing for information is the only way forward, isn’t it? Turn that fear into action and ask for support from who ever will give it until you get some hard facts. If your appendix has ruptured I can’t understand why they wouldn’t go in and remove it straight away rather than wait for inflammation to go down. My inflammation went down after 2 weeks so I had surgery 28 May after originally landing in A&E 10 April after having had the colonoscopies. 

I’m guessing my mucocele was benign but I can’t see any notes that state that so I’m going to double check with my GP that this is the case. PMP can kick off up to a decade later if cells escaped into the abdominal cavity during surgery. I didn’t have to have my colon removed and therefore didn’t need a colostomy bag. However, even if needed, these are often temporary until everything has healed. 

I’m so sorry you’re living with this anxiety. It’s awful, isn’t it?! I started mindfulness meditation twice a day when I was going through it as I found myself obsessing about it all. Hard not to, isn’t it?! I stopped Googling information and channelled that energy into trying to get answers from the medical staff. Please, don’t be afraid about ‘being a nuisance’. Don’t worry about ‘using NHS resources’. We have to fight for ourselves, sadly. We are informed patients, not victims! 

Let me know how you get on. 

Lily

Hi Lily! I hear you! Thank you so much for your encouraging words and support- much appreciated . I need to stop googling and get some hard facts from the medical experts. It is just horrible not knowing! I will keep you updated as I hear more and be able to get some real answers! Thank you again x