Scanxiety again...

[pottersusan]

(Distinct feeling of deja vu)
Before Christmas I had a CT scan at my local hospital. When Southampton looked at it they decided they wanted me to have a MRI, which I had in January at my local hospital. Southampton reviewed the images last week which resulted in my NET NUrse specialist ringing me. He told me that they couldn't make up their minds whether what they were seeing is more tumour growing or the residue from the microwave ablation I had last year. So they now want me to have another MRI in Southampton in June. Presumably if something has grown it will be obvious and if its the same or less its the residue. It does seem that one hospital doesn't really trust the images produced by another... What's national about the NHS?!
It's a wonder I have any fingers, let alone finger nails, left!

I try hard to get on with life, but inevitably at times it all gets to me rather.

 

[Redkite]

Oh what a worry for you - I suppose the fact that they're happy to wait a six month interval before re-scanning means they're not unduly concerned. Hope it turns out to be harmless residue xx

 

[Amigo]

(Distinct feeling of deja vu)
Before Christmas I had a CT scan at my local hospital. When Southampton looked at it they decided they wanted me to have a MRI, which I had in January at my local hospital. Southampton reviewed the images last week which resulted in my NET NUrse specialist ringing me. He told me that they couldn't make up their minds whether what they were seeing is more tumour growing or the residue from the microwave ablation I had last year. So they now want me to have another MRI in Southampton in June. Presumably if something has grown it will be obvious and if its the same or less its the residue. It does seem that one hospital doesn't really trust the images produced by another... What's national about the NHS?!
It's a wonder I have any fingers, let alone finger nails, left!

I try hard to get on with life, but inevitably at times it all gets to me rather.

I’m not surprised you’re stressing Susan. We have to hope they can accurately interpret the scans to allay our fears and it’s a long time till June for your poor chewed up fingers! Wouldn’t a PET scan have been better in that it can measure possible growth at the cellular level. Might have avoided these difficulties.
Hold onto the fact that it’s probably residue which is obviously what they thought initially and maybe are being ultra cautious.

I’ve just had a full body CT scan and it’s hard to explain to others what that worry pit deep in your stomach feels like.

This can be sorted one way or the other so hold onto that and sending hugs of support x

 

[Northerner]

Sorry the scans haven't provided sufficient clarity Susan Hoping for a much more positive outcome in June {{{{HUGS}}}}

 

[mikeyB]

I agree with Redkite. The 6 month wait means there’s no need to panic from a medical point of view.

That point of view isn’t yours, though Susan, so I can well understand your worries. But try not to worry too much. Pretend you’re a doctor. I find it helps.

 

[eggyg]

Oh Susan, there’s always something isn’t there? As Mike said if they are happy to wait until June they can’t be too worried, although it’s easy for me to say that! You will just have to fill in your days and keep busy and the time will fly in before you know it. Are you still “ pottering”? Just come on here and vent/ whinge/ get angry etc we don’t mind! Take care. Elaine. X

 

[Robin]

Ugh! What a long and anxious wait! (((Hugs)))

 

[pottersusan]

I know it's a slow growing beast usually. I also know that I'm more likely to die of old age rather than neuroendocrine cancer, but it still plays silly b****** with my brian.
I think imagining I'm a doctor is a good idea @mikeyB - you've been doing it for years!

I recently did a short (pilot) course for people living with neuroendocrine, which was attended by my 'local' NET nurse specialist. It was a real eye opener to him the magnitude of the impact on our mental health. It has definitely changed how he talks to me - which can only be a good thing.

 

[Davein]

I cant even dare to imagine what you have been through with this condition. I have been diagnosed with autoimmune pancreatitis which I consider to be bad enough. Your right, there is always that elephant in your head (not in the room) agonising whether today could be the next sudden hospital admission.I also know that feeling of deja vu when I get the warning signs. But life is too short to ponder the 'what ifs'. You simply have to get on with everyday living the best you can. There is always the choice of having a scan privately if it disrupts your live to such an extent and J know it shouldn't be that way but you know what the state of the NHS is at the moment.
Doc Mike has quite a rare sense of humour, should be on the telly really🙂 By the way- who is Brian?🙂🙂🙂

 

[Flutterby]

I am sorry you are going through this, waiting for any kind of medical information places us in a very stressful place.xx

 

[pottersusan]

By the way- who is Brian?🙂🙂🙂

Good question! It reminds me that the first description of my original tumour was that it was the size of a grapefruit (which turned out to underestimate the size!). I cant remember why, but I decided to have a concrete representation of it in the form of a grapefruit that turned into a voodoo grapefruit😱 I thrust numerous pins into it with great force. It turned very, very peculiar over the months until a while after my op it was despatched to the bin with much vehemence and force - which made me feel much better at the time.🙂

 

[Davein]

Good question! It reminds me that the first description of my original tumour was that it was the size of a grapefruit (which turned out to underestimate the size!). I cant remember why, but I decided to have a concrete representation of it in the form of a grapefruit that turned into a voodoo grapefruit😱 I thrust numerous pins into it with great force. It turned very, very peculiar over the months until a while after my op it was despatched to the bin with much vehemence and force - which made me feel much better at the time.🙂

What a brilliant way to deal with it. I sincerely hope you do not have to make another.

 

[Stitch147]

Fingers crossed for your June scan. Let's hope its just residue from being microwaved.

 

[Bloden]

((((Hugs))))

 

[pottersusan]

I forgot to say that the grapefruit was called Spitz - for rather convoluted reasons.

 

[trophywench]

... I'm just fascinated to know how to stick pins in something concrete ........

(Chokes on tongue, knowing the different meaning here)

 

[pottersusan]

... I'm just fascinated to know how to stick pins in something concrete ........

(Chokes on tongue, knowing the different meaning here)

They were pneumatic pins!

 

[trophywench]

... inserted with the use of a pneumatic drill - or just a jackhammer - or was the hate in your innards sufficient to apply the necessary pressure?

Fascinating the things human bodies can do when they feel the need!

 

[mikeyB]

I’m just making a note never to annoy pottersusan...

 

[eggyg]

I cant even dare to imagine what you have been through with this condition. I have been diagnosed with autoimmune pancreatitis which I consider to be bad enough. Your right, there is always that elephant in your head (not in the room) agonising whether today could be the next sudden hospital admission.I also know that feeling of deja vu when I get the warning signs. But life is too short to ponder the 'what ifs'. You simply have to get on with everyday living the best you can. There is always the choice of having a scan privately if it disrupts your live to such an extent and J know it shouldn't be that way but you know what the state of the NHS is at the moment.
Doc Mike has quite a rare sense of humour, should be on the telly really🙂 By the way- who is Brian?🙂🙂🙂

It’s 17 years since my first pancreatitis attack and subsequent “cysts” and tumour, and 10 years since my op to remove most of my pancreas to rid me of these. At first every little twinge sent me into blind panic, it ruled my life. Fortunately, it does get easier and although I get twinges I know it’s probably just indigestion or heartburn more often than not. Like @pottersusan I know deep down I will probably die of old age rather than pancreatic cancer but it’s always in the back of my mind. I get a “thump” in my stomach when I hear of a celebrity, for example, who has died from it and it brings it all back. But I know I have been one of the lucky ones and my tumour was pre-cancerous. Oh and by the way Brian is my hubby! He isn’t really called Mr Eggy!!