Hi Wendy,

Sorry you are going through this. I know how you feel - being told a little and left to go and find out for yourself is really hard to deal with.

I'm not a doctor, but I've had a quick look at some journal stuff about ampullary masses and it looks as though there are loads that are either benign, or only pre-malignant - that is, they could transform into cancer given time, but if they are removed they can't.

So I wouldn't panic at this stage. They are also really rare. So it might be some kind of cyst or another benign thing that has grown there. And it's small, which is good.

I wonder if it's worth talking to your consultant's secretary and asking her to ask your consultant to call you, just to talk you through why you didn't have a biopsy at this point. It might be that the person doing the gastroscopy decided it didn't look very serious, and wanted to check whether the consultant thought it was worth taking a sample etc. or not.

I do feel for you, it is awful being in a position where you haven't got any proper answers. Unfortunately I've got very good at looking things up over the last few months, being in a similar position (different kind of lump, though).

Hope you manage not to worry too much.

AK

Thanks AK. I will have to phone my doctor next week. I don't really want to go back for an endoscopy so quick if necessary ,and I will definitely make my feelings known and ask questions why if I have to.

That sounds sensible. Let us know how you get on, if you feel like it. We're usually around x

Hi Wendy,

It is understandable to go straight to the main sites such as CRUK  or McMillan if you digress then you are likely to go on a bad site and scare yourself as the chances are they have the wrong or poor information.

At this point you have not got camcer and you are in a worrying situation that is understandable.

The good thing is your consultant has it in their control and by the sounds of it doing all the checks to confirm what it is and that takes time.

I have had a rare cancer for 15 years and i am stil alive.

Forget cancer at this time sounds like you are in good hands and i would be content that they are doing the checks as a precautionary measure and it takes time to get the results back from the biopsy.

Just to help you as i have told you that i have cancer but i had to go for my normal eye sight test. The lady stated i have an unknown spot behind my left eye and would i want it passed to the eye clinic at my local hospital. Without a thought i stated yes as i wanted it checking out straight away in case it might be another cancer and i wanted the best people in the NHS to check it as soon as possible.

It transpired that it was a sign of high blood pressure and i was medication that wanted the times i took the tablets and it is well now and regulated.

What i am trying to say if it was anything that needed doing they would have been onto it straight away.

At this point let the Specialist do their job and wait for an answer. it is unlikely that they will ring you as they are likely to have many patients.

Go easy on the internet it can be a good place for information or a nasty source of information. i have done it may times but keep to the main sites. i have done it a number of times and scared me.

With a rare cancer i have to check regular for new treatments and that is why i know the intenet.

You can try speaking to the secretary but it is unlikey they would help you as the chances are they would not know.

To repeat Myself at this time you are in good hands taking very good care of you.

Imagine if they did nothing you would want them to take care of you and that is what they are doing.

Enough from me all the very best and if you need anymore just let me know and i might be able to help you.

Andydorro1 

Thanks. I suppose that if I hadn't had a gastroscopy they wouldn't have found the ???. I have to see my doctor soon for my hypolori results and how to treat my gastritis,I will ask him then what he thinks and try to keep off the internet. I will keep you informed about this. It is nice to have people to talk to.

Hello Wendy,

My pleasure to help you Wendy.

Thats great you are getting the right idea.

You dont know what ??? is at the present time and ideally when you get an answer it will be the right one?.Try not to worry you are wasting your time and life away. I joined the gym yesterday to keep me and my brain active with better use. Great!

Having cancer for such a long time that has not beeen easy but it has given me an experience that i never really wanted but now i have it i want to help people like you and others.

Remember keep off the internet unless you go on proper sites.

If you need anymore let me know but well done so far you are taking control and doing well.

Andydorro1

Hello Wendy,

I have an update for you.

I am 55 yrs old had to retire my life long great job due to ill health.

I caught by chance at the surgery i asked for a routine check as they were offering them for free. I decided to take one for some reason but it saved my life.  I had a rare Neuroendocrine tumour the size of a cricket ball that i did not know i had in my upper left rib cage that i dont know i had it for years and i was told by the surgeons that i had it for years and it was growing slowly. It was taken out two weeks later and they had saved my life just by a simple check i had no idea. 5/100,00. I was clear for five years after 6 months of chemotheraphy,

5 years later after getting back to work i had another great seven years. Now its in my liver and classed as a chronic illness and is in my liver nonoperable but treatable. it is very hard but the NHS and support services are a great team saving lives.

6 years ago i was given a treatment that lowered my immune system and i caught another rare illness encephalitus a nasty brain bug that if not caught soon and treated by medication can be dangerous. Thankfully the NHS saved my life. I did catch epilepsy but it is all controlled via medication. you are not on your own there are plenty people out there who are there for you if needed. However, the point is you have not got any idea at this point but you are in good hands and proffesional care. Therefore, you need to try and keep yourself occupied and wait. my routine is a weekly or two weekly journey where i attend the hospital to check my levels in my body to stop being admitted as they can correct anything that is not right. The bottom line is i am in their hands and the NHS Specialists and Nurses are looking after me. 

Its not easy but my family and I have to deal with a problem jump the hurdle and move forward. 15 years on i am alive jumping occasionally and started the gym this week to help my mind and body Great.

This was all from a routine visit to the GP and a free routine test and it has saved my life twice so far now

Any questions :) You are in the right place

All the best Wendy

Andydorro 1