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Robette

Re: Usual waiting times for procedures

Postby Robette » Fri Dec 01, 2017 12:47 pm

Hi sorry I. M new to this. I was admitted to hospital on monday with suspected appendicitis but that was ruled out after an ultrasound showed a 4cm cyst in the head of my pancreas. This was confirmed with two contact CT scans. My blood were ok no cancer markers and my liver and kidney function is normal. I have been referred to a GI MDT team and they discussed my case yesterday. A nurse rang and told me they want to see me again to explore further and I will get an appointment in the post but probably won't be before xmas. Is this waiting usual?
I have been driving myself crazy googling everything
I am 43 mother of four and work full time usually totally fit and well never really had a sick day before
I have a two week sick note my pain is ok some days none some days bouts of pain but being managed
My question I suppose is what do people think will happen next and what is a normal waiting time
Thank you

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Usual waiting times for procedures

Postby Wife&Mum » Fri Dec 01, 2017 1:09 pm

Hi Robette,
So sorry you’re going through all this!

I’ve found the following timescales advice on the PCUK website here
https://www.pancreaticcancer.org.uk/inf ... ic-cancer/

“You may have to wait a few days – or as long as two weeks – for some scans or tests. Sometimes people have to wait longer than this. If you’ve been given an urgent referral for a test because of suspected cancer, it should be done within two weeks. If you haven’t heard anything within two weeks, speak to your doctor. It may also help to speak to the consultant’s secretary.”

Hope it helps
W&M xx

Robette

Re: usual waiting times for procedures

Postby Robette » Fri Dec 01, 2017 2:57 pm

Thank you that is helpful hopefully I will have an appointment soon

Justamo
Posts: 465
Joined: Sun Sep 04, 2016 9:38 pm

Re: Usual waiting times for procedures

Postby Justamo » Sat Dec 02, 2017 9:55 pm

IMPORTANT - I strongly advise you NOT to click on the link in the above reply on this thread.

(The Russian one, not the reply from Wife & Mum, obviously !)

Mo

Robette

Re: Usual waiting times for procedures

Postby Robette » Sun Dec 03, 2017 10:25 am

I thought it looks a little dodgy

Veema
Posts: 497
Joined: Mon Feb 02, 2015 5:35 pm

Re: Usual waiting times for procedures

Postby Veema » Sun Dec 03, 2017 9:02 pm

I reported the post yesterday...looked dodgy although I don't speak Russian!

Thing is, I'm now desperate to click on it!

Hope you get an appointment soon Roberts.

Vx

PCUK Nurse Jeni
Posts: 1014
Joined: Mon Jun 14, 2010 12:30 pm

Re: Usual waiting times for procedures

Postby PCUK Nurse Jeni » Mon Dec 04, 2017 10:11 am

Thank you for alerting us to these posts.

They have now been deleted.

Dainne & Jeni,

Pancreatic Cancer Specialist Nurses
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

Justamo
Posts: 465
Joined: Sun Sep 04, 2016 9:38 pm

Re: Usual waiting times for procedures

Postby Justamo » Mon Dec 04, 2017 10:02 pm

Just in case you are all wondering, the deleted posts - both Russian - each contained a link. The first post was all about car washing in monumental detail, and the second one concerned itself with a type of sun roof for VW cars. They were both rather boring but highly suspect.

Hope you get some news soon Robette. Keep us posted.
Love, Mo

Robette

Re: Usual waiting times for procedures

Postby Robette » Tue Dec 05, 2017 10:40 pm

Quick update-telephone call from specialist nurse today to let me know that they have booked my appointment for endiscopic ultrasound and will be within next two weeks

Robette

Re: Usual waiting times for procedures

Postby Robette » Tue Dec 19, 2017 12:34 am

Hi
My ct scan has diagnosed me with a 4cm branch duct IPMN in the head of the pancreas which i'm lead to believe is very good outcome. I had an EUS and biopsy last week to further confirm this but I am still waiting for results. I met with the consultants registrar last week before the EUS and he seemed keen to take a conservative watch and wait approach which is reassuring but everywhere I read suggests anything over 3cm is best to be offered surgery . My mind is in overdrive any advice for me for next consultant appointment would be greatly appreciated

Dandygal76
Posts: 746
Joined: Sat Mar 12, 2016 9:49 am

Re: Usual waiting times for procedures

Postby Dandygal76 » Tue Dec 19, 2017 9:08 am

That is good news and gives a lot of hope to other people prediagnosis. I have said on here before I have a bronchogenic cyst of around 4-5cm sitting nicely against my Aorta and nerve for my voice. They have wanted to take it out for an age but I just get a 6 monthly scan instead for changes and nothing has changed. There is a small chance it can get infected and bleed and a 1-2% chance it can turn cancerous. Well I have certainly questioned the latter as I think we all nearly have a 1-2 in 3 chance of cancer in our lifetimes anyway. The operation I would have is on par with a whipples and can have significant consequences on my life, as with the whipples. I know they are not the same thing but is really a cost /benefit /risk appetite for you personally. If it was me it would depend on what else they offer up - how often will they scan, would they do MRI and not CT so not to keep poisoning me, how many people have they left with a 4cm cyst and outcomes etc. The current medical thinking was to remove mine but when I looked at the stats and results I managed to get the consultant to admit it is a grey and largely untested area. Also, stay off anything except professional sites in your research or you will drive yourself mad.

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Usual waiting times for procedures

Postby Wife&Mum » Tue Dec 19, 2017 9:14 am

Hi Robette
In the scheme of things, as you say, your diagnosis is very good. But if I were in your situation I'd also be concerned by the advice you've been offered...I've just done some Googling and found articles from eminent institutions that back up the "over 3 cms" cut-off.
I also found a recent article:

https://pancreasfoundation.org/wp-conte ... NCREAS.pdf

that says:
"Patients with branch duct IPMNs who are symptomatic should be treated with resection not only to alleviate the symptoms, but also because of a higher likelihood of malignancy. It is important to emphasize that the decision to treat should be individualized and based on patient preferences and willingness or unwillingness to undergo follow-up studies, as well as on the availability of safe pancreatic resection."

So the fact that you are symptomatic is also something to take into account.

During the 2.5 years that hubby and I have been on Planet PC we've sought second opinions several times and never regretted it. This is what we would do in this situation. Also we would speak to the wonderful nurses on the PCUK Support Line.

But I hope you can derive a lot of comfort from the fact that there's a good chance that your ipmn is benign, and that if it isn't, it's very treatable.

W&M xx

Robette

Re: Usual waiting times for procedures

Postby Robette » Tue Dec 19, 2017 12:16 pm

Hi dandygal76 and wifeandmum
Thankyou for your replies they are very helpful

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Usual waiting times for procedures

Postby Didge » Tue Dec 19, 2017 2:00 pm

This is good news. Wait for the biopsy results and if they concern you (and if your consultant’s advice still concerns you after he/she has reviewed the situation) then ask for a second opinion and make sure it is from one of the specialist hospitals. It could even be from a more senior consultant (e.g Head of Department) at the same hospital if you’re already at a specialist hospital. But I hope this means that you will have a better Christmas than you were expecting!

PCUK Nurse Jeni
Posts: 1014
Joined: Mon Jun 14, 2010 12:30 pm

Re: Usual waiting times for procedures

Postby PCUK Nurse Jeni » Tue Dec 19, 2017 4:10 pm

Hi Robette,

Do you know if your case has been discussed with the specialist Multi-Disciplinary team, at whatever specialist centre your local hospital feeds into? Or did you have the EUS at a specialist centre?

Robette, if you wish to make contact with us, then we can speak to you in more detail about this, and steps forward.

Please feel free to call or email - our contact details are in the signature below.

Kind regards,

Jeni.

Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707