diagnosis timescales advice

[moby_67]

Hello all,

So many moving and inspiring words on this forum, it’s an excellent and helpful resource.

My dad (60) has just been diagnosed, ive had the initial shock and upset stage and am now in a strange limbo situation where it doesn’t seem real anymore.

I am looking for some guidance on what to expect from the hospital. He fell ill with jaundice pains etc 5 or 6 weeks ago, had an ultrasound which couldn’t see anything so was waiting for an appointment to see a specialist.

In the meantime he became more ill and in serious pain and went to hospital on 20 September. They did scans and tests and diagnosed on Wednesday 23 September, a stent was fitted on Thursday 24 and he went home on Friday 25, to be told that the cancer unit in Newcastle would be in touch. He returned for blood test on wed 29 September to check jaundice.

The hospital said they didn’t think it would be operable as is close to blood vessel but the cancer unit would decide.

After no contact from cancer unit we called them on Friday 1 October and were told they were having their review meeting on Monday and would look at his scans then. We then rang on the Tuesday to be told that he would be having an endoscopy on 19 October and a meeting with consultant some time before that (no date yet)

To me this all seems to take so long, it is 2 weeks yesterday since diagnosis and still he doesn’t have a date to see a cancer specialist his endoscopy is 4 weeks and a day after diagnosis.

They said the cancer doesn’t seem to have spread but what if it is spreading today or will tomorrow?

Am I being impatient and is this normal? I suppose there are many others waiting too..

Thanks in advance.

[Trevor F]

It does help if you have private medical insurance.

I was diagnosed about 16-17 months ago with a masshead at the top of my pancreas and underwent a Whipples operation to resect about 2-3 weeks later. My diagnosis was early and we didn't hang around for 4 weeks or more. I'm a little younger than your father.

There is some urgency needed in this situation. If you can be treated privately go ahead and do so immediately. If not I think you'll have to make a bit of noise to emphasise the urgency. Especially if it is an operable situation, like mine was. Being operable is a great advantage - don't waste it.

Good luck

[Nardobd]

Hi Moby

Unlike Trevor my husband didn't have private medical insurance and we were reliant on our local hospital. Ted, my husband, has locally advanced pancreatic cancer and the tumour is very close to the superior mesenteric artery so is inoperable.

Reassuringly, we were advised that the tumour had probably been there a long time and a matter of days or weeks wouldn't have any affect on the outcome. However, like you, I was worried and I must admit I made an absolute nuisance of myself - pushing and pressing the hospital every day until we had an appointment and plan for treatment (chemo in Ted's case). Within a couple of weeks we saw the consultant and Ted started chemo a couple of weeks after that I think.

The endoscopy is to take a biopsy of cells from the mass found. I was more worried about treatment than the biopsy, which I think was about the same time as the start of the chemo. It's quite common that the biopsy is inconclusive and even though Ted's biopsy didn't have any cancer cells, that didn't affect his diagnosis. It's an overall picture and although they like to get confirmatory biopsy it's not essential.

As with any public service, the people who shout loudest probably get dealt with a little quicker. My advice would be to keep hassling the cancer unit. Threaten them with PALS / local press if you have to. It's all very well sitting back and saying that others are waiting/they're doing their best etc but that doesn't help your Dad.

Let us know how your Dad gets on and, of course, if you need any advice or just a shoulder, don't forget we're here for you too.

Kind regards

Nicki

[moby_67]

Thank you both for the reply.

We called the unit and then later that day got a letter with an appointment for monday (today)

He is there now with my mum so obviously we are all waiting with fingers crossed, we are told the cancer unit at the xx is a good one so we are in their hands.

He had private medical until he retired last year, how we all wish he kept it going but no point in regrets i suppose.

Good thing is now that his GP knows whats going on they have really helped with the pain relief so much so he had 7 holes of golf yesterday.

the GP didnt get the letter from the first hospital until mid last week so they had to go off what my dad could remember until then.

thanks again,

Andrew