How long does it take to get a cancer diagnosis?

[AKMD]

I've been having some imaging tests done that have picked up a large tumour on my pancreas. If it's cancerous, the survival rate is 3% :( My GP referred me to a specialist nearly 3 weeks ago; I saw someone the week after but it was the wrong consultant, since then I've heard nothing. The scans have been dragging on since the beginning of April and I'm a mental wreck. Does anyone have any experiences of how long it takes to get a proper diagnosis when cancer is in the equation?

[mumsiepie]

God, AKMD, you are being treated appallingly. Either speak to your GP tomorrow or if you know the specialist you are meant to see, phone the hospital and leave a message for him to phone you asap. Either way, if it is cancerous or not, you need to see a specialist.

Sending you hugs and hope you get better very soon. xxxx

[thelittlestkiwi]

I agree it's time to start making a fuss. In addition to your GP I would contact the McMillian service at the hospital in question. They have often chased up my mums results for her.

Fingers crossed you get good news and soon.

[AKMD]

Thanks, I did ask my GP to find out who the specialist is that I'm meant to see but they haven't come back to me yet. I'll phone again this afternoon. I'll try to find the Macmillan service too - I didn't know one existed! The scan results that I've had so far haven't been too good so I'm waiting for more tests but this waiting around is horrible.

[Meglet]

Please ring them. Pester power will get you seen.

Macmillan are fab, they can also help your family and advise on treatments.

[Elibean]

on your behalf - i think its dire that you're being left hanging around with this worry.

If scans started in April, and there is ANY possibility of malignancy, its beyond dire. I would definitely phone this afternoon, and if necessary shout, cry and tell them you can't bear it any longer. I"m so sorry you're going through this, and hope they get a move on and that you end up with peace of mind.

[Chundle]

Aww you poor thing! I would ring the hospital and not put the phone down until I'd been put through to the right person. If you can afford it go private they are treating you terribly.
My uncle had pancreatic cancer and he pulled through, stay positive x

[Dillydaydreaming]

If they are concerned that this is cancerous AKMD then the usual aim is to get an initial assessment within 2 weeks.

Agree with everyone else here - it's unacceptable to leave you in limbo like this.

I suggest ringing PALS too (Patient Advice Liason Service) - if you look them up on Google with your home town in the search box too then it'll come up with the local number. They can also fight your corner.

[lubberlich]

Get your GP on side - keep on and on at them - they can push open a lot of doors and demand answers. A good GP can be a great advocate.

The stress you are under waiting for this is disgraceful and as others have said PALS should be your next port of call after you have spoken to your GP.
Sounds to me like you have dropped through a crack in the NHS.
I am a cancer patient (breast) and know all too well the stress of waiting for blood and scan results.
It is time to get bolshy.
Good luck.

[mumblechum1]

That's shocking.

I had tests for colon cancer and was told that it was malignant as soon as I came round from the sedation and was booked in for surgery 7 days later.

I hope very much that your tumour is not malignant.

[throckenholt]

I would have thought they can't diagnose for sure without a biopsy (at least that was the situation with my mum).

i would push the gp to chase up why nothing seems to be happening. And also why you were sent to the wrong consultant first time.

Try and keep calm and positive.

[AKMD]

Wow, thanks everyone. I will be more confident with pushing to get the final round of testing done. I hate making a fuss but this is a bit serious.

[Dillydaydreaming]

AKMD - have you heard or been told about non- malignant pancreatic tumours?
They are often like big cysts and DO need removing as they can (if left long term) become cancerous.

Just thought you might like to know this as am guessing you are in the right age group for the cyst rather than the cancerous tumour.

Don't let this stop you getting heavy with them though - the quicker you know, the quicker you can cease worrying.

[AKMD]

I have, thanks Dilly. I've spent a bit too much time on Google recently and I'm hanging onto that possibility. Not that it's interesting to anyone but the tumour is pretty big - 10x12cm on the CT scan and is causing me some discomfort so I know it needs to come out, I'm just feeling a bit sick at the possibilities.

I called the hospital and left messages with the secretary of the consultant I already saw to ask who I've been referred to and with the senior nurses who specialise in looking after pancreatic cancer patients to ask how long things normally take. More waiting for them to get back to me [sigh]

[smudgethepuppydog]

Have you tried the PALS department at your hospital? They can often kick ass (in a positive way) and get some answers for you too. Good luck I hope all turns out to be ok for you.

[happygilmore]

You need to call PALS, that is appalling. I hope you get some news soon.

[tallulah]

That's awful you've been waiting so long.

I was referred to the hospital at end Jan, had a Barium Enema 2 weeks later that came back needing further tests; CT scan just over a week later and a diagnosis about 10 days after that. Had surgery mid-March, so all in all less than 6 weeks from initial referral to surgery (they knew it was cancer from the CT and suspected it from the BE).

I thought there was a 2 week target when cancer is suspected?

Whereabouts in the country are you?

[AKMD]

I'm in the South East and my hospital falls under the catchment area for Mount Vernon in London.

Private isn't an option I'm afraid. DH and I are both kicking ourselves because we both had the option of paying a monthly premium for private health insurance through work but we decided not to go for it as we were both fit and healthy. I guess no one ever really thinks this will happen to them.

I spent a while doing the phone rounds today and eventually got throughout to the senior nurse on the pancreatic cancer team. It turns out that the consultant I saw two weeks ago didn't pass my records on so the pancreatic specialist didn't know I existed. The outcome was that the nurse has gone on the warpath, my notes will be discussed tomorrow and she will call me personally in the afternoon to let me know what's happening next.

Thanks for giving me the confidence to do some chasing!

[Elibean]

AKMD, well done - you and the nurse together sound powerful! What a nightmare even having to think about chasing, though - awful.

Here's to benign cyst results, and soon.

[mumblechum2]

Fingers crossed for you AKMD, please let us know how you get on.

[thelittlestkiwi]

Well done AKMD. Keep at it. And let us know how things go.

[ThingOne]

You poor thing. It sounds appalling. My cancer diagnosis took about four weeks from GP referral to formal diagnosis with consultant after a series of tests and scans. But I was told at my first referral meeting in the hospital that it was "probable" and told roughly when I would get my results.

[IntotheNittyGritty]

Hope you get some news soon, no matter what it is it is better to know what you are dealing with.

My diagnosis was within a week, but then they did a lot more tests to confirm the type of severity of it

[mumsiepie]

Good luck and keeping my fingers crossed for you xx

[AKMD]

Thanks everyone, the nurse I spoke to yesterday called me back this morning. She's spoken to the consultant, is setting up another CT scan and I'm booked into next week's clinic with an operation to follow shortly after that. Phew!

Good thing I called really!