Neuroendocrine tumour or carcinoid tumour is this cancer

Cancer
1

Hi

please can anyone shed any light through personal experience.

i have found out accidentally from my GP that following a colonoscopy 6 months ago I was diagnosed with having a carcinoid neuroendocrine tumour in my rectum. The hospital failed to inform me and jus sent the report to the gp where it has been sitting for 4 monthhs. I have now been in contact with the hospital and I have an appointment to see the consultant next week. I am at my wits end,  all research on the internet identifying this as cancer, but then I am baffled as to why I was left in the dark.

has anyone else been diagnosed with this and it's not cancer

thankyou

Nikki

2

hi my husband was diagnosed with carciniod syndrome  the way it was explained to him  was that it is a very rare and slow growing cancer. and  he had probably had it for 10years.  they are treating it with  monthly injections  which slow down the production of  Hormone. since he started the injections his hot flushes and diarrhoea have stopped 

3

Sorry I can't help.  But you can't go far wrong in going to Macmillan and the other cancer groups.  Good luck,  Daffs

4

Hi gadman

Thank you. No I don't have any symptoms.  Mine was identified through a colonoscopy where a biopsy was taken. No further tests have been done to see how far its spread etc. How big was your husbands tumour and  was it graded. Did he have surgery?. Sorry for so many question. With so little information from the gp,. I'm very worried and upset.

Thank you 

5

Hi daffs

Yes I did go to MacMillan nurses who have said I need to discuss this further with my consultant, which I will be doing next week. I'm jus baffled why is it me that has been chasing them for appointments  etc. Surely someone should have told me months ago. 

Thankyou

6

hi Nikki. Sandy was  diagnosed  with a cat scan and urine tests.  not sure how large its tumour  is  it's a very strange  syndrome. You must stay very positive   sandy is on his second month of  injections  and  we are feeling  positive x

7

Hi Nikki,  I've been  told too that bowel cancer is very slow growing and I hope so.  Perhaps now you are seeing your oncologist things will move a lot quicker.  Did for me.  Have you spoken to your gp about why this happened and why he didn't speak to you earlier. 

I had a lot of trouble getting copy ltrs from the hosp. at first and thought the worst.  But it is NHS law now that you get copies of everything, even from the gp to hosp.  I had to fight for mine, going to different people and constant as I wouldn't let it go.  This rule was brought out around 2003 and I've never had problems with other hosps.

There is someone on the macmillan forum who is taking a survey on this type of thing and there are others who have experienced similar.  If you would be interested, let me know and send a friend request.  I think Macmillan are doing something about that too.

Godbless,  Daffs

 

8

Thank you daffs

 I haven't been referred to any oncologist yet. I just went to see the colorectal consultant in December who then requested a colonoscopy for January. I had the colonoscopy at the end of January and that's it, i didn't hear anything back from anyone until may when I got a letter for a follow up appointment with the consultant for mid July. So looking at all this information I thought well everything should be OK. Its only last week when I went to the gp for my cough and cold symptoms, that he looked into my records and said, oh we have a report here from February the 7th indicating that you have a carcinoid tumour in your rectum. So feeling all panicky I phoned the hospital to move the hospital appointment from July to next week. Whether its slow growing or not I do believe I should have been informed and action should be taken.

I can't change what's happened but I do feel upset about being left in the dark.

I will definitely take part in the MacMillan survey thank you daffs

9

Thank you gaddman.

Yes I am trying to stay positive. But with so little information feel completely in the dark. I hope all goes well for your husband

Nikki

10

Hi Nikki,  Sorry, thought you were seeing the Onc. Are you going back to the same consultant. 

My procedure was and here I don't have your type.  After my initial appnt  with the Cons. who did his own exam., I had the colonoscopy. This is general rule that it should be within 2 wks after the consul.  But mine was 4. After the colonoscopy I had to wait to see  the Specialist Nurse who sent me for a MRI scan then. I had lots of scans and then saw the Onc. All this happened less than 2 wks after the colonoscopy. I think I might have been in shock as I thought I can't do this, all the trips to the hosp., I'll have to put a stop to this.  Then I think reality clicks in and you can't.  I didn't know anything about it and didn't know what questions to ask.  I couldn't understand why the gp, after me being ill for nearly 3 yrs didn't send me for the colonoscopy and I had to ask.

I had very little to do with my gp after that and relied on my questions, which I got mostly from the Macm. forum website.  I was a little angry at the hosp. for not treating me 'special' as it was to me.  All in all, although they are short on their explanations, they are very quick on the procedure and I suppose I am just one of many they have to deal with.

Try to get copies of docs. etc.  Seems, from your treatment, there is nothing to worry about.  If you are seeing the same Consul and not an Onc.

I have no info. on the Macm. surveys, only that they are doing one.  There are so many people not being diagnosed early enough by the gps and so many now that need to be.  Even small children.  I've got over, more or less, what my gp did or didn't do.  Can't waste my energy on something that won't help me now.  I've had my initial chemo and 4 wks finished now, chemoradiotherapy.  Now I'm waiting for the scans to show what the treatment has done and then the op.  and after treatment.  Reading all others' stories helped, not only to get info on future treatment, but makes me feel I'm not so bad.  I do however believe in the colonoscopy, not only to show the cancer, but if not, what the problem is.

The survey being done on the forum I can give you info on and possibly Macm. will use it, but you'll have to message me with private. 

Goodluck and as I said your's is not my cancer, but just to show you the procedure and what you can get.  Don't wear yourself out on what should have been done but use it as what should be done.  Know it's hard.  Godbless and good luck  Daffs

 

11

I have been diabnosed with carcinoid cancer

 

12

Hope all goes well. Thinking of you sarah

13

Hi daffs

Thank you. I saw my consultant on Wednesday. Yes I do have cancer. Its called a neuroendocrine tumour. They are saying that they won't do anything. Just monitor it and do another colonoscopy. Feel so helpless. I thought a least I would have surgery to remove it. But he said that the lump which was their had been picked out when they did the biopsy. My argument is that it was not a proper surgical procedure. There are some cells left behind that will be growing. I have my next scope in July. So I guess I just have to wait and let destiny take its course. Still not happy though.

Nikki

14

Hi gaddman.

Thanku. I'm afraid I  still in limbo. The hospital will not do anything. They are asking me to come for another colonoscopy in July. But yes it has been been confirmed I have a neuroendocrine tumour grade 1. Feeling awfully confused that I have something growing inside me and that no one is going to remove it. I was told that it mostly slow growing.

I hope your husband is doing well with his medication

.

Nikki

15

Hi valorie.

How have they decided to manage your carcinoid tumour. Are u having surgery or has it just been left. Do u know how big it is.

Good luck

Nikki

16

hi  it's a very worrying time for you  it seems to take forever for consultants to decide how they will treat.  Sandy  is on ocreotide injections  he had  to inject himself twice a day for 3 weeks  after this time blood test were done and he was started on. a monthly dose  this is done  by the nurse at hospital.   He  also had to spend many worring months  waiting for test and test results. !   so keep positive and try not to get stressed as this seems to make the symptoms worse 

17

hi  sorry missed this one.  Can you ask for second opinion. I know it's a very slow growing tumour most people have had it 10 years or so   .take care sarah 

18

Hi Nikki,  So sorry it is cancer.  But please don't fret.  Grade 1 is very minor and as you are to have another scope in July, at least they are keeping an eye on it. 

I don't know why they won't op now.  Maybe because it is so small.  I have never heard of anyone with Grade 1 having the op.  There are many people on macm. with Grade 1.  I'm not saying it's going to dissapear, but at least it is very early and they are watching you.  Please think there are many with Grade 3 and 4 and N1 or more, that need attention now.  Theirs will and has probably spread to liver and lungs.  I know thisw doesn't help much, didn't for me either as I thought if they would act now, I wouldn't get to that stage.  But, I'm sure they are treating me for my cancer as is now and taking all necessary steps to prevent it from returning. 

All your questions write down and ask your consul. next time.  But you have to know what questions to ask to get the answers that will help you combat this thing and that I got from others in my stage. 

gadman seems to be able to help you best as her hubby has it. So, wish you both well.  Godbless,  Daffs

 

19

Thank you so much daffs and gaddman

What is macm. Is it the MacMillan website.

Good luck and GOD bless you all x