A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

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dave b
Posts: 7
Joined: Fri Mar 13, 2020 5:25 pm

Newbie

Postby dave b » Mon Mar 16, 2020 9:49 pm

Long story short....had a bowel issue and started with a colonoscopy. My body didn't like that so they had to stop and send me for a CT. That revealed an area of my Pancreas that they wanted further checks on..MRI next and it shows a 2cm tumour in the head of the Pancreas. I was told on Friday 13th (Doh) that it is malignant. It wasn't a shock. For some odd reason I expected it despite my wife saying 'It'll be fine'. I see the specialist in Leeds this Friday although I shall ring tomorrow to ask whether it would be prudent to just have a telephone chat (unless I need any tests on the day...I don't imagine so, they must have 6 blood tests, 3 CT scans, MRI and most recently a Nuclear PET scan)

I feel lucky so far. Found very early apparently, and totally by chance. I'll just have to see where this takes me. Positive thoughts to all fellow PC patients. I wish you all the very best.
Dave

PCUK Nurse Dianne
Posts: 302
Joined: Tue Aug 14, 2012 3:29 pm

Re: Newbie

Postby PCUK Nurse Dianne » Tue Mar 17, 2020 3:48 pm

Hi Dave,

Welcome to the forum, I am sure you will find this wonderful forum family so generous in their thoughts and support, as always. Dave I am sure this may be an uncertain time for you, however it does sound that you have some good news that you are being seen promptly and have investigations to follow. I am sure you might update on the Forum as you continue Dave.

Please do not hesitate to touch base with us if we are able to support you in any manner. Our confidential support line is here for you should you wish to touch base.

With kind regards,

Dianne
Pancreatic Cancer Specialist Nurse
Pancreatic Cancer UK
Support line: 0808 801 0707
Monday to Friday 10-4pm
email: nurse@pancreaticcancer.org.uk

dave b
Posts: 7
Joined: Fri Mar 13, 2020 5:25 pm

Re: Newbie

Postby dave b » Wed Mar 18, 2020 10:02 am

Thanks Dianne.
I have my first appointment with the specialist this Friday so I rang yesterday to check whether it was a simple face to face or whether I needed any addition tests or scans. It was the former. I suggested we do a telephone appointment and it came as a bit of a surprise 'Why?' I was asked by the secretary. I explained that I am now, apparently, a higher risk so rather than a 50 mile round trip and a walk thru a huge hospital to have a 20 minute face to face with my consultant...we could do it over the phone. I'll have a lost of questions that I'll tick off if he answers them before I need to ask. If I have anything that springs to mind after, I will email you and you can find out and reply.'
She has asked the consultant and this is what we are doing. I save a round trip (and car park charges) but most importantly, it is one less person wandering thru a hospital, touching handrails, lift buttons etc.
I do appreciate that a face to face is preferable but unique times surely need unique measures ?

I'll spend some time looking at the forum so that I get a mixed bag of question I want answers to.
I will update the forum with how things progress.
I WILL remain positive. It is free and it is good for me.

I wish you all well

Dave

Annabelle
Posts: 12
Joined: Wed Aug 29, 2018 8:56 pm

Re: Newbie

Postby Annabelle » Tue Mar 24, 2020 9:30 pm

Hi Dave,
Welcome to the forum, a place non of us want to be! Please call and speak to one of the nurses here, they are a calming voice amongst all the turmoil you will be experiencing and give you lots of helpful advice. Everyone diagnosed with this evil disease will have a different experience, ask your questions, there will be many but someone on here may be able to help.
My Husband was diagnosed in June 2018 we were devastated and felt very lost and alone at first, he has now had folfirinox chemo, a lung operation and more recently chemo radiotherapy, he is quite well and “getting on with it” and if it wasnt for all this coronavirus affecting the world we would be off in our camper exploring.
A couple of practical things for you to think about:-
I believe as a cancer patient attending appointments you should not have to pay for parking, we dont have to pay at our hospital, they validate your ticket for you so ask your hospital.
Depending on your prognosis:-
You may be entitled to some financial support from DWP, ask MacMillan for advice.
You may be entitled to a blue badge should you need one, again ask for advice.
I wish you well. Keep up with your positive attitude, it certainly helped us.

Kind Regards,
Ann

dave b
Posts: 7
Joined: Fri Mar 13, 2020 5:25 pm

Re: Newbie

Postby dave b » Wed Mar 25, 2020 8:10 am

Thanks for replying Ann
Spoke on the phone with my consultant on Friday. I had a list of questions I wanted answers to. He initially asked me what I understood of my condition so I went thru how I got to where I currently am. He then spoke of where we head from now and answered all bar 1 of my questions doing so.
The plan for me is to wait 4 months for a further scan to see what growth has occurred. I will be having the wipple procedure within 2 yrs.
I am hugely thankful that (by sheer chance) my early diagnosis means I am not in need of immediate treatment.

PCUK Nurse Rachel R
Posts: 81
Joined: Thu Jan 25, 2018 10:52 am

Re: Newbie

Postby PCUK Nurse Rachel R » Thu Mar 26, 2020 12:50 pm

Hi dave b

I’m glad to hear you’ve discussed things with your Consultant and have answers to the majority of your questions.

Can I ask have you had a biopsy of the tumour taken? I see you mention in an earlier post that the tumour is malignant but I just wanted to clarify that this is correct and that this has been confirmed? The plan that you have been given sounds along the lines of surveillance that is often offered to people that are diagnosed with a pancreatic cyst, a common pancreatic cyst is called an IPMN (Intraductal papillary mucinous neoplasm). Pancreatic cysts have a risk of becoming cancerous and patients are usually managed by keeping a close eye via imaging and are sometimes offered surgery to remove them. Can you clarify please? It would be unusual for a person with a cancerous pancreatic tumour to be offered a scan in in 4 months and it is not a typical treatment plan to suggest that a Whipples would be performed within 2 years in this context.

As we’ve said we would be more than happy to chat on the phone or via email if you would prefer.

Kind wishes,

Rachel

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

dave b
Posts: 7
Joined: Fri Mar 13, 2020 5:25 pm

Re: Newbie

Postby dave b » Fri Mar 27, 2020 11:50 am

I've not had a biopsy. What I've posted is direct from my consultant. I'd like to think that he would have said that they think it is is cyst and have done further tests or checks rather than being clear about it being a NeuroEndocrine Tumour. I was under the impression that the Nuclear Test I had clarified this. If it is a cyst, fantastic. I am happy that the consultant is correct in that it is a NET

PCUK Nurse Rachel R
Posts: 81
Joined: Thu Jan 25, 2018 10:52 am

Re: Newbie

Postby PCUK Nurse Rachel R » Fri Mar 27, 2020 2:29 pm

Hi dave b,

Thanks for your post and providing a little more information. The plan that you have been given makes much more sense if you have been told that you have a NET, we did not know this was the case. I wonder if you’re aware of another charity called Neuroendocrine Cancer UK? Here at PCUK our expertise is in relation to the most common type of pancreatic cancer, pancreatic adenocarcinoma, therefore I would encourage you to reach out to them. Here is a link to their website and also contact details for their nurse support service. Wishing you all the very best.

https://www.netpatientfoundation.org/20 ... -services/

Rachel

Rachel Richardson
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk

dave b
Posts: 7
Joined: Fri Mar 13, 2020 5:25 pm

Re: Newbie

Postby dave b » Fri Mar 27, 2020 7:38 pm

Many thanks.
I'll have a look at that.