Hi Genna,

I hope you are doing good and feeling better soon.

I can semi relate to your post, I had surgery 6 weeks ago for what was thought a muccocele of the appendix.  It turns out I had appendix, bit. If bowel and 2 different rare cancerous tumors removed.

Have had a CT scan since of chest and seeing consultant on Thursday of this week.

Its only this last week that I have felt fitter, mentally better and able to move without too much hassle. 

I wish you well.

Hi. 

Tha is for your reply. Was you told much at the time. I just seem to have been told there was a tumour in my appendix and that it was being passed to a multi disciplinary team at the hospital (about a hour away from me). They told me they would be looking at my case on friday (last week) and I've heard nothing. No appointments,  no contact nothing. I dont know if its cancerous or if its spread nothing. 

Thank you 

Hi SMUDGE77

Am so sorry for what your are going through I was diagnosed with the cancer of the appendix in 2015 was 39 and just given birth 6 months it was surrel was lost in shock but somehow the kid's kept me going but the worse part no information was given to me it was alot test blood CT scan and there was no much information given either but on December 2015 a week before Xmas was finally told it was hard as got 5 kid's and one of my kids with special needs I started taking videos for memories as now didn't know if I will make it through the surgery as by then I was informed that the cancer was there while I was pregnant so my baby was lucky it didn't get to her appointment was made for the surgery in 2016 April was meant to be in hospital for 3 weeks the thought of leaving the kids and the baby was harder than worrying of the cancer surgery went well and the removed all the cancer now it was recovery time but all didn't go well when I contracted anemonia my lungs crash and I heard to be put in a induced coma I woke up a week later rather confused a day before my birthday I asked the nurses to call my husband and my husband was shocked to hear from me as he was prepared that was not gonna make it I ended me staying in hospital for 3 months as needed another key hole surgery as kept on vomiting  I left in June was so happy to be back home am antibiotics for life and omerazal for stomach acidity that doesn't end there as getting used to ur new u got in trouble in December spend my Xmas in hospital as I heard stomach users due to the nature of the surgery I heard a small tear on my intestine which caused the damage but was home before the new year 2017 thought we get away for a mini holiday in Skegness in April only to get ill again and my family having to go back home without me same problem again and am glad to say that was the last time I was in hospital am doing well still on my meds happy am able to see my first grand child have your surgery date set yet? Xx 

Thank you for messaging me x I'm so sorry you've had such an ordeal! I'm on watch and wait for now so no surgery at the moment. Another scan next month and check ups every 3 months. The anxiety is terrible but you'll know all about that. I hope you remain well and I'm sending hugs. Enjoy being a gran. Cathy x

I have appendix cancer too. Had crs and hipec 3 weeks ago. Hang in there babe xx

Hi x thanks for getting in touch. Not sure what's ahead but hoping for positive news. Hope you're doing ok after surgery? Love cathy

Hi I'm new to this..

in feb my appendix purfarated and spent 9 days in hospital with a terrible infection, I was then told they thought I had Mucocele of appendix and had regular scans and colonoscopy which Thankyou was clear.

my last scan showed it was getting bigger again so the other day I had to go to Basingstoke, next month I'm having major surgery to remove appendix my overies top layer of my liver and a few other things, I also may need my spleen removing to have to have lots of injections next week incase.

im hoping my bowel does not have to be touched but it is what it is..

im so nervous with the operation they think it will be a 7/7 hour op, 

Hi, I'm sorry to hear what you're going through. It is really scary. I suppose the positive thing is they have a plan and they are going to treat you. I'm sending love and hugs and hope you are well and recovering very soon. Cathy

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 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 (also known as a right hemicolectomy). 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. 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 more of 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.

Hi Laura, it's just a horrible thing to go through. I've just had my 6 month scan which was thankfully clear but like you I'm just terrified about the future and what might happen. Trying to be positive and it's good to hear you are doing well. Keep smiling. Cathy 

Hi Laura, this post is a little old now but I'm going through something very similar to you - currently awaiting formal diagnosis but CT abdo scan shows tumour in my appendix and enlarged lymph nodes in the colon and further up (I didn't take it all in properly). Waiting is horrific and I am trying to avoid the internet as best I can but reading your story makes me feel more positive so thank you for sharing. My daughter is 3 and I'm beyond terrified I won't get to see her grow up, or that she won't remember her mummy. Trying to remain positive for now though. 
Has anyone else suffered from carcinoid syndrome as well? My symptoms tie with it and I've had bloods/urine taken to check for it. 
thank you and sending you all love.

I'm so sorry that you're having to go through this too, it really is such a shock to the system and I'm not surprised you haven't managed to take it all in yet. Have they given you a treatment plan yet? Sending you lots of love and positivity.

If there is anyway I can help support you or answer any questions then don't hesitate to reply.

After my first colonoscopy, they found and removed multiple polyps so I had to go back after one year rather than the original five that they'd planned. In the second they found even more, some of which could turn cancerous, so I'm now due to have a colonoscopy every 6 months unfortunately, but I tell myself I'm really lucky ot be monitored so closely.

Laura

I'm so sorry that you're having to go through this too, it really is such a shock to the system and I'm not surprised you haven't managed to take it all in yet. Have they given you a treatment plan yet? Sending you lots of love and positivity.

If there is anyway I can help support you or answer any questions then don't hesitate to reply.

After my first colonoscopy, they found and removed multiple polyps so I had to go back after one year rather than the original five that they'd planned. In the second they found even more, some of which could turn cancerous, so I'm now due to have a colonoscopy every 6 months unfortunately, but I tell myself I'm really lucky ot be monitored so closely.

Laura