Morning..  firstly try not to worry or predict what you think the appointment means, I know that is almost impossible, I know I have tried.

My GP hasn't had an update since my operation in February, although until the virus became big my hospital was very good at providing copy letters to me.

I guess a follow up is required following an operation.  I had supposedly was to have a telephone consultation with the consultant on Thursday but there was a mixup so didn't hear from him.  A colorectal nurse called me yesterday with an update.  Your situation might be the same.  Hold on to the fact they have contacted you and that there should be news soon.  Although stressful, if you have not had that call within an exceptional timeframe keep calling the hospital.  As my appointment was missed on Thursday I had to make probably 6 calls to obtain news.  I was polite but explained that it was important to know if I was at risk..

Stay sane...... If you can and try and tell yourself an appointment is due soon so that you can get more news..

Always here if you want to message.

By the way I had relatively good news and this might be the same for you.

Have a good weekend.

Hi, 

I did get relatively good news. The tumour was a nueroendicrine tumor.. they are happy its fully removed, still hot to have some more tests and scans and a colonoscopy but other than that the colorectal nurse said they would simply like to monitor me for the next 3 years. So I guess it seems I had cancer and now it's gone thankfully. 

Hope your staying safe and thank you for talking with me, you dont know how supported it made me feel during such a scary time. 

Thanks 

Hi..

Glad to hear your news..., this sounds really positive.  I am pleased for you.

CT scan and colonoscopy is what I am supposed to have in 6 months.  My chest scan was clear but they found a nodule in the breast which might be unimportant but I am being referred to breast clinic whenever that might be operating virus permitting.

My consultant originally said that experts in Basingstoke, this is where they sought advice on the two different tumours that I might be monitored for 10-20 years!!

I am pleased for you and wish you "well" for the future. Try and return to normal life without this being your main focus, if possible.

One thing if you don't mind my asking and you don't have to answer , is did or do you get abdomen bloating?

Jackie

Hi. 

Yes I got a six month wait same as you due to the coronvirus. 

I'm sorry to hear they found a nodule. Fingers crossed it is nothing serious. I am doing my best to try and adjust but I'm finding it difficult to understand that I actually HAD cancer. Its crazy and although their sure it's gone i still find it unbelievable that it was there in the first place. I feel better now I have answers but cant help still having so many questions looming over me. I've spent alot of time looking into nueroendicrine tumours and what they are just to kind of understand. 

Yes, I've suffered with abdomen bloating badly for over 2years. I initially went to the GP and he said the pain and bloating I had sounded like IBS, he gave me a list of things to eat and not eat ect, I went back months later still suffering and I was tested for chrones disease, that all came back clear and I was again told it was IBS, I even went into hospital in august 2018 with suspected appendicitis, I was seen late in the evening and they told me they would operate the next day as I needed to be scanned beforehand. I went home that night and returned the next day, had an ultrasound and was seen by someone different who basically said they didnt want to give me an MRI and they was sure it was simply IBS and sent me on my way and told ne to go home and have a good poo!! so for over 2 years I've suffered with supposedly IBS, and the funny thing is now.my appendix has been removed along with the tumor I have no bloating and I've not had a single IBS symptom. My tummy has completely changed shape and alot of people have said I look like I've lost weight (I haven't, I checked!!) Its simply because that bloating has gone.  This obviously has led me to wonder if the tumour has been causing the problems as I have been looking into it and it can cause issues with not only the digestive system but also the muscles used to digest food. It makes me wonder that if they had investigated a little more in 2018 maybe they would have found the tumour then. Like I say still lots of questions looming over me. 

I hope your staying safe and sane during these difficult times. 

Thanks

Genna 

Hi again,

Thanks for the great reply, much of which I could have written myself.  I too am pinching myself on having had these tumours.  As I was so overwhelmed when consultant told me the news I didn't go away with the tumour names. Like you I have been trying to find answers and understand more. Due to virus no copy correspondence has been sent.

Bit of a wow on your visit to hospital several years ago,  pity you weren't followed up then.  My symptoms started several years ago, mainly constipation but never put this together until now.  Constant swelling of abdomen in the last 6 months and episodes of this over the last few years, didn't really bother me until pain kicked in.

I think and believe my symptoms, similar to IBS, are related to me. Despite having a diet full of fruit and veg my body didn't work well.

As we both have not had a face to face appointment I think we might be feeling somewhat different to having received a phone call.

Bye for now xx

Hi Genna

Sorry to just jump on this thread. How are you feeling? I've been reading this and I am very much in the same boat as you. Had my appendix removed early February and then was told I had cancer. I managed to get a CT scan before the lockdown cancelled everything and was discussed. My results went to baisingstoke and like yourself, it seems like I had cancer. I was told it is a very low grade form ans very rare type (not even really sure what that means)

I'm not sure how you are supposed to react to that or what the next step is. Again like you, there might not be any treatment required.

Do you feel a bit in limbo though? Like are you supposed to disclose this now to everyone? Or is it that we say we have recovered? 

Hi LynH. 

Yes massively feel at Limbo. I received a call to say I would now be monitored, I've had to do 24hour urine samples and blood tests and have to go back for CTs on my chest abdomen and pelvis, so I'm sort of like ok I am clear, are the looking for more, do they think its spread and your just stuck at home with all these thoughts and it consumes you. It's like i went to hospital with appendicitis and came home with (or without should i say) cancer. I had to try and figure out what the hell to tell me my kids. . 

Mine was a tumour on my appendix so not quite appendix cancer but it's called a nuero endocrine tumor and seeing as though our body has an endocrine system made up of different parts of the body I now sit in fear that there are more of these tumors, that they could be anywhere. I dont feel confident enough that the nhs have really given me the all clear. Xx

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