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

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Ruthos1
Posts: 21
Joined: Sun Feb 02, 2014 10:28 pm

False negative result ERCP

Postby Ruthos1 » Mon Feb 03, 2014 7:02 pm

Hi ,
This is my first post on this forum.
My lovely lively mum(75) was diagnosed with advanced pancreatic cancer with 'suspicious' lymph nodes and a lesion in the liver on Xmas eve.
She had an ERCP performed with a view to inserting a stent for her jaundice , this was not successful as we were told that 'things' were too distorted .Her jaundice has since lessened.Her biopsy result has come back benign and an EUS has been scheduled, with a view to repeating the biopsy.
She is relatively well , but has a distended abdomen, weight loss and swollen feet/ankles.Her appetite is fairly good .
Has anybody else experienced this, am just wondering if we can get excited about this benign result or should have our reservations.

MSH
Posts: 228
Joined: Tue Apr 30, 2013 11:03 pm

Re: False negative result ERCP

Postby MSH » Mon Feb 03, 2014 9:00 pm

Hello, and welcome to the forum.

I would caution against putting too much faith in the benign biopsy from the picture you give of your Mum's symptoms. Hopefully it will turn out to be correct, but there are some inconsistencies in your post. When you say the diagnosis is advanced pancreatic cancer I assume this is provisional and based on the clinical findings in the absence of a tissue diagnosis. If the biopsy result was benign, this could mean there is a non-malignant lesion to explain some of the symptoms, (unlikely in view of the proposed EUS, and benign what?), or that the biopsy missed and returned normal pancreatic tissue. It might be that the biopsy was difficult to read and was indeterminate, which was the case in all three of my biopsies.

I hope this turns out not to be pancreatic cancer in which case you'll need an alternative explanation for the symptoms.

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: False negative result ERCP

Postby nikkis » Mon Feb 03, 2014 9:24 pm

Hi there,
I am presuming they have seen something on the pancreas?Hope this is not the case for your Mum, but my husband had 3 biopsies that came back as benign. When we eventually saw a surgeon he told us that with pancreatic cancer you can biopsy a hundred times and never hit a malignant cell. Once they had operated and removed more of the tumour it was found to be malignant.His opinion was that you should treat a mass on the pancreas as malignant unless it is prove to be something else.

As Mark says ,if they tell you it is not malignant they need to give you another explanation for her symptoms, but really hoping it is ok,
Nikki

Ruthos1
Posts: 21
Joined: Sun Feb 02, 2014 10:28 pm

Re: False negative result ERCP

Postby Ruthos1 » Mon Feb 03, 2014 11:07 pm

Hi Nikki,
Thank you for your reply.An ultrasound revealed a golf ball size mass on the head of the pancreas, the. CT scan showed a mass on the pancreas and a 'suspicious 'area around the bile duct, also a lesion on the liver.
My mum has had her hopes lifted since we were told the biopsy was benign!! I am however more cautious.Its heartbreaking to see her getting her hopes up.
I can't understand though, how a few months ago she was quite jaundiced ( they tried to insert a stent but failed twice) and now she looks fine.As I said earlier her only symptoms are discomfort in the abdomen and back,a distended abdomen and swollen feet/ankles.
I'm worried that we will be no forward forward after the next biopsy , which is scheduled for Friday.My mum so wants to know what's going on either way as she says she has 'things' to sort out!
It's such an emotional roller coaster.

Ruthos1
Posts: 21
Joined: Sun Feb 02, 2014 10:28 pm

Re: False negative result ERCP

Postby Ruthos1 » Mon Feb 03, 2014 11:12 pm

MSH wrote:
> Hello, and welcome to the forum.
>
> I would caution against putting too much faith in the benign biopsy from
> the picture you give of your Mum's symptoms. Hopefully it will turn out to
> be correct, but there are some inconsistencies in your post. When you say
> the diagnosis is advanced pancreatic cancer I assume this is provisional
> and based on the clinical findings in the absence of a tissue diagnosis. If
> the biopsy result was benign, this could mean there is a non-malignant
> lesion to explain some of the symptoms, (unlikely in view of the proposed
> EUS, and benign what?), or that the biopsy missed and returned normal
> pancreatic tissue. It might be that the biopsy was difficult to read and
> was indeterminate, which was the case in all three of my biopsies.
>
> I hope this turns out not to be pancreatic cancer in which case you'll need
> an alternative explanation for the symptoms.

Ruthos1
Posts: 21
Joined: Sun Feb 02, 2014 10:28 pm

Re: False negative result ERCP

Postby Ruthos1 » Mon Feb 03, 2014 11:20 pm

Thank you for your reply.
Yes, the diagnosis was provisional, we were actually told that my mum had advanced pancreatic cancer with weeks/months to live! But we had to wait for the biopsy results, which came back as benign.
Her jaundice has lessened, ( they're were two failed attempts at inserting a stent due to 'distortion' in the duodenum .
Her EUS is scheduled for Friday with a view to repeating the biopsy.
I don't know what to think if this result is also inconclusive as my mum is getting her hopes up, when she was first given her 'diagnosis' she was so courageous and now she's so hopeful.
I'm trying to be positive but at the same time realistic.

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: False negative result ERCP

Postby nikkis » Mon Feb 03, 2014 11:31 pm

It would be definitely worth ringing or emailing the nurses here who will be able to give you more advice. Who have you seen so far? If it is just the gastroenterologists, knowing what I know now, I would perhaps ask for an opinion from a specialist oncologist or a surgeon if you don't feel you are getting anywhere.

We know what the emotional roller-coaster feels like, it's so tough.
Take care,
Nikki

Ruthos1
Posts: 21
Joined: Sun Feb 02, 2014 10:28 pm

Re: False negative result ERCP

Postby Ruthos1 » Mon Feb 03, 2014 11:53 pm

Thank you Nikki for your advice .We have seen a general surgeon who told us that with his teams experience it looks like inoperable pancreatic cancer and referred us to a gastroenterologist specialising in EUS & ERCPs, who told us that mum had weeks/months to live, it was inoperable and chemo would be too harsh for her.
After reading your thread and Marks I feel inclined to push for chemo , as long as mums in agreement!
Thank you once again, how is your husband doing?

marie souter
Posts: 198
Joined: Thu May 30, 2013 7:58 pm

Re: False negative result ERCP

Postby marie souter » Tue Feb 04, 2014 12:27 am

Hi there,

I am not from a medical background and am merely quoting from my experience looking after my own mom who sadly passed away november just gone...I would deffo err on the side of caution with this one as your mom has exactly the same symptoms as my mom had .. we were told pretty much before the biopsy that it looked like a tumor which they thought had metastasised to the lungs and lymph nodes were involved, they seemed to be saying it was unlikely to be anything else .. moms tumor was at the head of the pancreas .. her swollen tummy in my moms case was down to partial leading to eventual full obstruction (although there are other reasons that can lead to a distended abdomen) it took a while for us to find the reason for moms swollen tummy .. mths infact...she also had swollen feet and legs with upper right sided abdomen pain leading to the back with a previous 2 year diagnosis of diabetes which I now think was the first indication of pancreatic cancer ... when the pancreas is involved there is a lot of localised swelling that spreads this can lead to partial blockage which could explain why without a stent the jaundice has gone but as its happened once the chances are it will happen again .. my mom had an on/off problem all through with internal swelling ... I think in most cases they tend to know what it is and a biopsy is merely a formality .. however I have seen cases where the doctors have been wrong most recently so on this forum .. I think we are scared to hope and I seen this in my moms face when they first told us so I know exactly how you're feeling on that score ... imagine though if they are wrong .. then at the very least they still need to explain what the mass is etc .. fingers crossed for you

hugz
marie

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: False negative result ERCP

Postby J_T » Tue Feb 04, 2014 1:15 am

Hello, I did post earlier today but message seems to have got lost!

I concur with the others. My husband also had a failed ERCP due to 'distorted anatomy' but they successfully inserted a metal stent percutaneously ie through the skin.

Good luck with your next meetings.

Julia

Ruthos1
Posts: 21
Joined: Sun Feb 02, 2014 10:28 pm

Re: False negative result ERCP

Postby Ruthos1 » Tue Feb 04, 2014 2:09 am

marie souter wrote:
> Hi there,
>
> I am not from a medical background and am merely quoting from my experience
> looking after my own mom who sadly passed away november just gone...I would
> deffo err on the side of caution with this one as your mom has exactly the
> same symptoms as my mom had .. we were told pretty much before the biopsy
> that it looked like a tumor which they thought had metastasised to the
> lungs and lymph nodes were involved, they seemed to be saying it was
> unlikely to be anything else .. moms tumor was at the head of the pancreas
> .. her swollen tummy in my moms case was down to partial leading to
> eventual full obstruction (although there are other reasons that can lead
> to a distended abdomen) it took a while for us to find the reason for moms
> swollen tummy .. mths infact...she also had swollen feet and legs with
> upper right sided abdomen pain leading to the back with a previous 2 year
> diagnosis of diabetes which I now think was the first indication of
> pancreatic cancer ... when the pancreas is involved there is a lot of
> localised swelling that spreads this can lead to partial blockage which
> could explain why without a stent the jaundice has gone but as its happened
> once the chances are it will happen again .. my mom had an on/off problem
> all through with internal swelling ... I think in most cases they tend to
> know what it is and a biopsy is merely a formality .. however I have seen
> cases where the doctors have been wrong most recently so on this forum .. I
> think we are scared to hope and I seen this in my moms face when they first
> told us so I know exactly how you're feeling on that score ... imagine
> though if they are wrong .. then at the very least they still need to
> explain what the mass is etc .. fingers crossed for you
>
> hugz
> marie

Ruthos1
Posts: 21
Joined: Sun Feb 02, 2014 10:28 pm

Re: False negative result ERCP

Postby Ruthos1 » Tue Feb 04, 2014 2:18 am

Hi Marie,
Thank you so much for your extremely informative answer, it's so appreciated.
Even though we have been told by a consultant surgeon and a gastroenterologist that my mum has advanced pancreatic cancer, with lymph node involvement and a lesion in the liver , we have still to get back a positive biopsy result.The last result came back as benign!
Is this abdominal distension and swelling of the feet/ ankles something to really worry about do you think?
I just want to be prepared for everything.
We were told that chemo really wouldn't be an option .
I live in Corfu and have been here with my mum since November, supporting her and enjoying fun times together.
I just feel very disappointed with the ways things have been handled, I feel that we are out on a limb.
Thanks for listening.

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 12:20 pm

Re: False negative result ERCP

Postby cestrian » Tue Feb 04, 2014 10:26 am

Are they trying to do the biopsies from the pancreas or the lesion in her liver? Mine was the latter and gave an immediate confirmation. Perhaps I was just lucky in getting a positive result so treatment could get underway. Obviously different teams will have their own preferred methods but if it's so difficult getting a proper sample from the pancreas then maybe time to consider an alternative.

A very trying time for you all while this is resolved but it would seem prudent to prepare for the worst case scenario while hoping like hell that is not the case.

Love and Peace

Mike

Ruthos1
Posts: 21
Joined: Sun Feb 02, 2014 10:28 pm

Re: False negative result ERCP

Postby Ruthos1 » Tue Feb 04, 2014 10:38 am

Dear Mike,
Thank you so much for your input.
I had actually thought about this a while ago( biopsy from the liver) & will mention this on Friday.They will be trying again ( 3rd time ) from the pancreas.
I hope all is going well with your treatment.

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: False negative result ERCP

Postby Cathy » Tue Feb 04, 2014 10:53 am

Hi there

You haven't said otherwise but I guess your Mum is still eating ok and not losing weight? Doesn't have any constipation which might account for a swollen abdomen?

Pancreatic cancer is one of the cancers that can cause a build up of fluid in the abdomen and an ultrasound scan can determine if fluid is the cause. It can be drained if it is causing a problem. Lets hope you get a clearer picture of what is going on very soon..

We spent 2 weeks last year and the year before in Corfu. We loved it there. I take it that you are being seen privately and not via the Greek health system?

Cathy xx