A forum for family, friends and carers of pancreatic cancer patients

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neurogirl
Posts: 6
Joined: Tue Apr 04, 2017 5:10 pm

Waiting for more news.....

Postby neurogirl » Wed Apr 05, 2017 5:57 pm

Hello All

My sister hasn't been feeling too good for a few months now. She's been back and forth to her GP, had various blood tests with nothing being identified until the last set, which identified the possibility of pancreatic cancer. She's been urgently referred to an oncologist and is waiting to hear when the appointment is. We don't know what to think because pc being put forward as the thing that needs to be investigated further is very worrying. It hasn't been suggested on a 'we need to rule it out basis', it seems quite specific. Can anyone share their experiences a period like this, where something is a possibility, but how much of a possibility is uncertain, plus what might happen next at the oncologist's appointment? I want to support my sister in the best way I can - any advice very gratefully received.

Veema
Posts: 475
Joined: Mon Feb 02, 2015 5:35 pm

Re: Waiting for more news.....

Postby Veema » Wed Apr 05, 2017 7:27 pm

From what I know, the only blood test to indicate pancreatic cancer would be if they checked the CA-19 levels and there must be something that has made them check that as it's not part of a routine set of bloods. If she has raised CA-19 levels, that could indicate pancreatic cancer, but it's not conclusive, I would have thought they would have sent her for a CT scan with contrast, or at least an ultrasound prior to seeing an oncologist, but maybe they will sort the scan out. My husband didn't see an oncologist until he'd seen a gastro constultant and then a specialist Hepto-Billiary consultant who confirmed the tumour.

It's hard to say what will happen at the oncologist appointment, as like I say, my husband's cancer had been confirmed at that point and so, following the MDT meeting, the oncologist just talked to us about the proposed chemotherapy plan and booked him in. You will obviously need a confirmed diagnosis before any chemo is discussed I would have thought.

Vx

Dandygal76
Posts: 737
Joined: Sat Mar 12, 2016 9:49 am

Re: Waiting for more news.....

Postby Dandygal76 » Thu Apr 06, 2017 9:03 am

Has your sister not had any scans? It seems strange to get referred just on blood results... not saying that it is not the case but it would be helpful to have more info. If you have money between you I would skip the NHS scan waiting times and go straight to private MRI, PET and biopsy to confirm so that you can get treatment quicker. I know that is not an option for everyone but if you have the funds and the drs are suggesting this cancer then don't wait. x

raun cesar
Posts: 30
Joined: Thu Mar 02, 2017 9:22 am

Re: Waiting for more news.....

Postby raun cesar » Thu Apr 06, 2017 1:40 pm

Hi
You have to stay strong, if its PC then it’s follows chemo and pain. Blood test is not the normal procedure and scans are done preliminary.

neurogirl
Posts: 6
Joined: Tue Apr 04, 2017 5:10 pm

Re: Waiting for more news.....

Postby neurogirl » Thu Apr 06, 2017 4:30 pm

No scans as yet. I don't think she was told that one/some of the blood tests were to ascertain whether PC was possible, so to go from that, straight to an oncology referral from some blood test results was obviously a big shock. I do question the wisdom of the approach, and it doesn't seem usual as some of you have pointed out. All I feel I can do at this stage is look at all the excellent info available on this website, so I'm at least reasonably informed to be able to support her practically as well as emotionally. I don't want to be 'in her face' about it though. I can only imagine what's going through her head at the moment.

Veema
Posts: 475
Joined: Mon Feb 02, 2015 5:35 pm

Re: Waiting for more news.....

Postby Veema » Thu Apr 06, 2017 5:55 pm

raun cesar wrote:
> Hi
> You have to stay strong, if its PC then it’s follows chemo and pain. Blood
> test is not the normal procedure and scans are done preliminary.

My husband never had any pain, so it doesn't necessarily follow.

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

Re: Waiting for more news.....

Postby Didge » Thu Apr 06, 2017 9:54 pm

CA19-9 levels being raised can be linked to other cancers not just pancreatic. I am impressed if they have included this blood test. I wish more GPs would do it. But it could be liver function that has been abnormal from the blood test. I know it's scary but maybe you could get more info while you wait?

Marmalade

Re: Waiting for more news.....

Postby Marmalade » Fri Apr 07, 2017 11:45 pm

Hi Neurogirl,

Any mention of PC with its poor outcomes is a shock but I agree with all other comments that to go from a blood test to oncology is more than a little unusual. If this is what your sister understands then she should go back to the GP (perhaps she would like you to go with her) and ask him or her to explain what tests have been done and what the thinking is in referring to oncology rather than Gastrointestinal. I feel there is some information missing or a misunderstanding somewhere. My husbands diagnosis was drastically delayed because our GP referred him to the wrong discipline on the diagnostic pathway so this needs checking out to avoid any delay in accessing treatment.

The people on here understand the the anxiety of waiting, it can literally drive you crazy. The best advice is to try not to scour the internet looking for every possible scenario, it will not help, Try to help your sister and yourself with some diversions and above all enjoy her comparative good health until you get better information. Perhaps you could help your sister make a list of questions for the consultant? It may help to write a list rather than keep thinking about it.

I really hope you get some better information on your sisters situation very soon and that PC can be ruled out. In the meantime I recommend staying away from Dr Google and calling the nurses on here if you or your sister is worried or wants to know anything, they are so knowledgable and reassuring.

I wish you luck

Marmalade x

neurogirl
Posts: 6
Joined: Tue Apr 04, 2017 5:10 pm

Re: Waiting for more news.....

Postby neurogirl » Sun Apr 09, 2017 4:33 pm

Ok, well things are moving quickly which is good. She is going for an endoscopy on Tuesday, and will see the oncologist after on the same day. What seems to have happened is the blood tests she had were done during a trip to A&E when she had some sudden very severe tummy and back pain. I thought the tests had been ordered by her GP.

neurogirl
Posts: 6
Joined: Tue Apr 04, 2017 5:10 pm

Re: Waiting for more news.....

Postby neurogirl » Sun Apr 09, 2017 4:52 pm

And it's an ultrasound endoscopy, plus she will have a ct scan on another day (early the following week they hope) and the results from them both will inform what should be done next.

Marmalade

Re: Waiting for more news.....

Postby Marmalade » Sun Apr 09, 2017 6:03 pm

That makes more sense, she may also have had an ultrasound or CT scan in A&E which would explain why she is being referred to an oncologist. I think you should prepare, as far as anyone can, for the worst and hope for the best... I have everything crossed for you xx

neurogirl
Posts: 6
Joined: Tue Apr 04, 2017 5:10 pm

Re: Waiting for more news.....

Postby neurogirl » Sun Apr 09, 2017 6:52 pm

Thanks marmalade and everyone else for your posts. She is trying to stay positive, her husband is lovely and will be looking after her I know, and, she knows she can count on me for anything. She is only 49, but as this site shows, PC can come on the horizon at any time. I love her so much and don't know what to do with myself, finding it very difficult to concentrate on anything else.

Marmalade

Re: Waiting for more news.....

Postby Marmalade » Mon Apr 10, 2017 9:01 am

Hi Neurogirl,

You feel like we all feel and sadly we cannot take the anxiety away we can only tell you that you are not alone and that you will cope because there is no other option. Once you have a confirmed diagnosis and a treatment plan you will have dates and procedures to concentrate on but even those bring the anxious waits and the roller coaster ups and downs. If PC is confirmed there is nothing you can do for the most part except to encourage her and help her to live life to the fullest possible, think that your Mum is young, hopefully strong, and that puts her in the bracket of people most likely to survive to the longest limits of this disease. Who knows, by then there may have been a breakthrough miracles do happen!

neurogirl
Posts: 6
Joined: Tue Apr 04, 2017 5:10 pm

Re: Waiting for more news.....

Postby neurogirl » Mon Apr 10, 2017 12:37 pm

Thank you, the support on here is amazing.