Hello Slongy and a big welcome to Cancer Chat! 

I completely understand your concerns after what you've been through and it being so rare too. It's wonderful news though that your tests came back clear and the cancer hadn't spread. I think it's great that you will be monitored every year for 5 years. Perhaps when you have your next appointment you could ask them what will happen after those 5 years and whether there is any chance that it could come back in your bowel. Your medical team will be in the best position to advise you further and tell you more about how they will monitor the situation for you. I hope that you will meet other members of the forum who have had a similar diagnosis and that they will come and share their story with you. 

Feel free also to give our nurses a call on this free number 0808 800 4040 if you'd like to talk things through with them. You can ring them Monday to Friday from 9am to 5pm.

Best wishes, 

Lucie, Cancer Chat Moderator

My name is Laura and I have also had cancer of the appendix, or more specifically a mucinous adenocarcinoma. I was suffering from awful abdominal pains for a few years on and off like yourself and ended up in A&E in November 2019 because the pain became so bad. They took me straight to surgery because after an ultrasound scan they believed I had appendicitis. We were told I'd be in surgery for around 30 minutes, but I ended up being in there for 6/7 hours. 

I found out a few days into my recovery that 30% of my bowel, my appendix and a 'mass' had been removed. I was in hospital for one week and two weeks after I was told it was a tumour and was cancer. I was 31 at the time.

16 lymph nodes were also removed and luckily all were clear but there were cancer cells found in the lymph channel. I was referred to an oncologist who told me that they were 99% sure they've removed all the cancer but I was offered chemotherapy as a 'preventative' measure in case there were any rogue cancer cells that couldn't be found via tests.

They left the decision with me, which to be honest was a horrible and scary experience. I decided not to have the chemotherapy because they had told me that it could make me infertile and potentially kick start an early menopause. I don't have a family yet and had always planned to. They were also quite positive that the cancer had been removed.

This was all 2 years ago now, and I'm under surveillance for 5 years too. I have blood tests every 6 months, a yearly CT scan and a colonoscopy every 5 years. So far everything has come back clear, and whilst I don't regret the decision to not have chemo, it still terrifies me that it could return. 

I'm so sorry this has happened to you too and I can understand what it feels like to be told this diagnosis. There's not a huge amount of reading material on this kind of cancer either.

Here to chat if you have any questions 

Hi Laura

Thank you for replying to my post. I am so sorry to hear what you have been through. It must've been such a shock and a tough time for you. I am glad to hear you are still clear after your operation and I hope this continues for you. That must've been such a difficult decision to make about the chemo but I completely understand why you chose not to opt for it. It was a very brave decision to make. You are correct when you say there isn't much reading material on this type of cancer. It's one of the reasons I reached out on here to try and find other people that may have been through a similar thing. I guess I have been very lucky that they found it so early on and I haven't needed any further treatment after having my appendix removed and reading your story just makes me feel even more fortunate and also at the same time you have given me so much more hope now that it won't return. It's just such a scary thought not knowing that it was even there in the first place and being so young, it has made me rethink everything about my life! I have now decided to cut out all processed meats and red meat as I have read they are carcinogenic. I have also joined a gym to try and be a bit more healthy as I am worried it's my old lifestyle that caused it. It's just terrified me! The hospital has now said that they are looking into whether I should have annual MRI scans instead of CT scans so as not to expose me to radiation as much due to my age but I am now worrying whether they will be as effective. Everything is just a constant worry for me at the moment but I feel daft for worrying really as there are so many people worse off than me

I'm so glad I can give you even a tiny bit of hope and please don't feel daft for worrying - your feelings are so valid! It is a really scary diagnosis, especially at such a young age and with a young family.

I feel exactly the same as you to be honest - there are some days when I just silently panic to myself that it will come back but there are others when I don't think about it as much and I think that's completely normal given what we have been through.

I think it is amazing that you've cut out processed and red meats too - that's not easy to do so you should feel proud of that acheivement! I actually went vegetarian a few months before it all happened and it's definitely made me glad I gave up meat. I've also read a book called 'The Gut Stuff' which has been written by two young women so it's quite relatable - I'd definitely recommend reading that as it's great info on how we can look after our gut health which is so relevant to us :) 

Please don't think your lifestyle will have caused this either. Cancer of the appendix is so rare, especially in women our age apparently - the hospital I was treated at actually refererred me to a genetics clinc, because they believed it could be something to do with a faulty gene. I think my tumour was tested for something called Lynch Syndrome - it came back negative so I think I've just been unlucky.

Maybe speak with your consultant or GP and ask a few questions - I'd even tell them about your concerns around the MRI. Also if you haven't been sent for it yet, chase up your colonoscopy to check for polyps. One thing I have learned from this whole experience is to really push for things when you feel something isn't right. Like you, I kept having those awful pains which would come and go on their own. I'd been to the doctors so many times before and was mis-diagnosed over a period of a few years (with IBS and polycystic ovaries - I have neither!) and I just knew in my gut (no pun intended!) that it wasn't right.

It's good to be able to speak to someone who has been through the same. Even though our family and friends can be amazing and caring support, it can still be so isolating because they can't understand what it's like to actually be diagnosed with something so scary.

Hi Laura

I honestly can't tell you how much you have helped putting me more at ease. Thank you so much. I have just ordered 'The Gut Stuff' so I hope that will give me some pointers to help me look after myself. 

I actually asked if it was genetic too when I was first told as my mind just jumped to my son or my sisters potentially having the same issue some day. One of my sisters actually had her appendix out only a few years before I did but luckily they didn't see anything other than appendicitis and my other sister has Chrohns so my mind is constantly on high alert now with any aches and pains in my abdomen. It's probably just worry and poor diet though now!

I really wish you all the best and hope you continue to stay in good health. No one should ever go through what you have been through and I hope it has only made you stronger. This kind of thing can so easily break us emotionally aswell as physically. Thank you so much for sharing your story with me. It has been nice to speak with someone that actually understands my worries.

Sarah :)

Thanks Sarah, I'm so glad I've been able to put you at ease a bit more :happy:

It really is such a horrible experience to have to go through at such a young age, so it feels good when we can share our experiences.

Wishing you all the best & great health for the future - also don't hesitate to get in touch again if you feel like chatting!

Laura x