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,

It's the thoughts that are the worst. You just had all these thoughts and questions and it gets over whemling whey you think of them and then think "I don't know" in answer to them. I was given the number of the nurse that I could call. Were you given anything like that that you could just call and ask? I found it helped me slightly when I got a bit over whelmed. I'm getting a bit like that again now, as I got asked tonight if I would be allowed to go back to work when lockdown eases and I thought "I don't actually know"

I'm sorry you have had all these tests to do. I suppose in a way I'm lucky i don't have to do that. They are quite happy...whatever that means...and there might not be a need to do any treatment, colonoscopy may ossibly still be on the cards though. If no treatment is required are you in remission Or do you have to o through treatment to say you are in remission?

As we have both said....limbo!

xx

Yes I was told a colonoscopy was on the cards to. I was contacted by a Colo-rectal nurse and she said I can contact her but given the current situation I've not bothered as there clearly not in a rush to help cancer patients at this time. It's so crazy. I was told I would also be monitored for the next 3years so then that makes me wonder if it will come back. I sound like a hypochondriac to everyone as I start to worry over twinges and pains.. 

It's so frightening, I'm only young. 32. I have 2 children and I am in limbo. I use the words in remission as its easier to explain although I dont even know if there the right words to use. 

Xx

My husbad calls it my "ficticious cancer" I know he doesn't mean it but I think he says that because neither of us know really what happens now, I think it's gone but that it could come back in the bowel etc, I'm not really sure.

I don't think you sound like a hypocondriac at all, I do the exact same thing. and think things like "I know the CT scan didn't show anything but maybe its spread really quickly" I think it's only natural especially when still looking for answers and unsure what happens next. I think it's natural to be frightened. I'm the same age as you and thats what the DR said to me a few times "We are concerned becasue of your age" I put it down to them not normally seeing it in people so young

xx

Yeah they did say it was quite rare for our age.. they told me it was slow growing, well that great but how long has it been slow growing.. lol. I was also worried about being in my bowels as one had so much trouble with bowels for a few years now. 

I'm forever looking into nueroendicrine tumours and researching and it's just crazy. We make jokes about it just because if I didnt I'd go mad I think. My brothers only a year younger than me and he likes to wind me up so I throw the cancer card at him and he always gives me a scowl and says that's not fair I cant use that one it sounds terrible but that's kind of kept me going through it. The witty banter.  

I think the worst part was at hospital bring told 'prepare for chemo' prepare for surgery ect and then nearly 2 weeks of going insane to be told yeah we think your ok now, we removed the whole tumour so just a few lose ends to tie up and your right as rain... it was like the scariest thing ever. 

Xx

Hi....

Just wondered how you are doing, and Lynn?

Hi. I am doing ok thank you. All of my test results have all now come back clear so I dont need to be seen now untill November. 

How are you doing 

Genna xx

Fantastic, that is great news, well done.

I'm STILL waiting to hear when I might get tested, it's frustrating as I would like to know I am clear properly for now.  Unfortunately, my consultant was due to phone me today for a follow up call and that didn't happen.  I am feeling a bit forgotten.

Really pleased you got clear results.  Do you mind if I ask what tests you had done?

Hi all, I am in a similar boat to you. I had CT scan, after pains and bloating and feeling unwell. The scan showed a tumour on my appendix and they are going to remove my appendix next week, which should hopefully be the end of it, unless it has spread to my bowel. Didn’t take it all in sitting opposite the doctor at the hospital.

Hope you're all well now.

Good luck for the operation.

Take it steady.

I had 24 hour urine tests and blood tests. They were looking for a specific type of protein. They came back clear l  then i had CT on abdomen and then further Thorax CT. And then had a colonoscopy. And thank god everything was clear. 

I cant believe they haven't called today. I hope they dont leave you hanging. 

I dont have to be seen again now until november so I feel partly like it's a relief but partly still tied to it all. It's been stressful lol. Xx

I had 24 hour urine tests and blood tests. They were looking for a specific type of protein. They came back clear l  then i had CT on abdomen and then further Thorax CT. And then had a colonoscopy. And thank god everything was clear. 

I cant believe they haven't called today. I hope they dont leave you hanging. 

I dont have to be seen again now until november so I feel partly like it's a relief but partly still tied to it all. It's been stressful lol. Xx