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, 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

Hi still breathing, carcinoid syndrome is on my radar at the moment, under a gastro doc and endo doc, had bloods and urine done but it's still and ongoing investigation along with NETS and paraganglioma

hope you get some answers soon

love

HM