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Neuro endocrine tumour removed from bowel in routine screen

11 Jul 2019 19:22

Since finding out my polyp was a rare cancerous N.E.T. I have been waiting for a MRI scan.

My irregular bowel symptoms have cleared up but I have severe stomach acid and reflux on and off through the day. The fear is that the endocrine cancer has spread.

My MRI appt was cancelled this morning due to it breaking down!!

Im waiting but gttn worse!

 

Neuro endocrine tumour removed from bowel in routine screen

16 Jul 2019 10:10 in response to DJayne

Hello and thanks for posting on the forum,

I am sorry to hear about your situation.  It must have been very frustrating to find out that your MRI had been cancelled.

It is probably a good idea to go and see your GP  and get something for the acid reflux whilst you are waiting for your next appointment. You could always ask if you can have a telephone appointment.

I can understand that it is worrying waiting for any treatment.  On the whole NET (Neuroendocrine Tumours) tend to grow quite slowly.  We do have some information about NET cancers and how they are treated which you can look at here

The NHS have also produced some information about NET tumours which you can read about here

There is some information written by the NHS about dietary tips for helping with the reflux.  Have a look here.

I do hope that you get an MRI soon and are able to find out more about your situation.  You may find it more helpful to give us a ring to talk through your situation.  

I do hope that this has been helpful. Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

Best Wishes,

Catherine

Neuro endocrine tumour removed from bowel in routine screen

18 Jul 2019 20:25 in response to CRUK Nurse Catherine

thank you so much for yr reply.

I had my MRI scan yesterday and although it was a pelvic exam the radiographer told me he was also going to look at my liver. Its so frustrating when you are in discomfort to feel that yr life is in someone elses hands and that they can see abnormalities but you arent allowed to discuss them.

I have been told that results will take 2 to 4 weeks! Im hoping concerns will bump certain patients up the waiting list.

In the mean time Im now experiencing severe burning sensations in my middle back.

Im reluctant to take lanzoprasole due to side effects the last time 4 yrs ago. Could the excess acid be linked to a peptic ulcer? The burning in both stomach and back start an hour after the evening meal about 7pm.

Baking soda in water is soothing in the short term.

Neuro endocrine tumour removed from bowel in routine screen

19 Jul 2019 16:41 in response to DJayne

 

 

 

 

Hello and thank you for getting back to us,

I am sorry to hear about your symptoms and waiting for your MRI results which is causing you to worry.

I am sorry that we can't tell you if it is a peptic ulcer that is giving you these symptoms. You are going to have to wait for the MRI results. If in the meantime you do feel that you cannot cope with them do speak with your GP. There are other medications that might help that your GP may think is appropriate to prescribe.

I hope you understand more about your situation soon.

Caroline