False negative result ERCP

[Ruthos1]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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

[Ruthos1]

Hi Cathy,

Thank you for your post.

I am in the UK with my mum, she lives here.She is eating small frequent meals, is not really constipated as she takes a laxative most evenings.She has been both an NHS patient & private! The care was better on the NHS, but I feel they've just palmed my mum off!

Her symptoms to date are extremely distended abdomen and swollen feet, back and stomach niggles.

An EUS is scheduled for this Friday as two attempts of an ERCP failed to get a conclusive result.

[PCUK Nurse Jeni]

Hi Ruth,

I am sure Dianne has replied to you by now, but the forum family are correct in their caution. Having a "benign" result is probably not the correct terminology. As Mark said, it is more the case that they did not obtain tissue which contained tumour, in which case, it would be inconclusive and not "benign". As Mike also said, the biopsies can be taken from the liver - much easier to access. All in all, given the physical symptoms you are mentioning, and clinically looking at your mum, you would have to be wise and assume their diagnosis, (minus biospy), is correct.

I know that you have emailed us as well, so we can always keep in touch with regard to future treatment.

Kind regards,

Jeni, Support Team.

[Ruthos1]

Thank you Jenni so much for your reply.

I feel so upset that my mum is having to go through this vile test for the third time.I wish they would just try from the liver which I feel would be less invasive and distressful.

I have had a reply from Diane thank you .

Thank you for your help.

[marie souter]

Hi there,

I have seen instances of people needing repeated biopsys due to swelling in the pancreatic area ... I think most people have a somewhat distended abdomen just down to side effects from the disease itself (internal swelling) .. what you have to look for is a significant increase .. for blockages you would need to check for .. are they moving their bowels, passing wind below of above? if so then an obstruction is very unlikely ..a full obstruction there is no mistaking it really, the tummy would be very distended (my mother looked 9 mths pregnant, this happened overnight, she went from her usual swollen abdomen to looking very pregnant) tapping the tummy it would sound like a drum ... there would be a massive increase in pain ..... there is of course the ascites which is the build up of fluid mentioned earlier .. I believe this can actually be drained off in some cases (I'm not medical) but I believe ascites is more common in people with liver disease?

My notes here are not to scare but mainly to give you extra information to set your mind at ease with regards to obstructions my moms obstruction happened the last week of her life and as they thought she was having partial obstructions throughout they gave me the info I needed as to what to look out for and I always felt much better informed to deal with everything ahead of me ..

fingers crossed for your mom

Hugz

Marie

[Ruthos1]

Foo morning,

I posted on here last week staring that my mother had had a negative biopsy result from her pancreas, despite being told that she had advance pancreatic cancer with weeks/ months to live.

An EUS was performed yesterday with a view to taking a other biopsy.The surgeon was unable to reach the pancreas due to a narrowing at the duodenum.He managed to take several biopsies from there and we are now awaiting the results, plus another CT scan has been requested.He is now mentioning chronic pancreatitis .

Her symptoms to date are mild niggly pains in her abdomen and back plus very swollen legas and feet by the evening.

She did have jaundice but that has subsided!

Has anybody else experienced anything like this.

We are totally confused now.

[Ruthos1]

Hi,

I wonder if anybody else has experienced similar....

Here goes, my mother was diagnosed with supposedly advance pancreatic cancer on Xmas eve, with a small lesion on the liver and 'inflamed' lymph nodes at the head of the pancreas and a golf ball size mass on the head of the pancreas.

We have had a negative biopsy result back which was taken early in January.An EUS was performed yesterday with a view to obtaining another biopsy from the pancreas.This was unsuccessful as there was considerable narrowing at the duodenum.Several biopsies were taken from there.

We are now awaiting the results and a repeat CT scan has been requested .

We are now being told there's a possibility it could be chronic pancreatitis !

Her only symptoms are niggly pains in her abdomen and back plus recently very swollen feet and legs ( of an evening).

She did have jaundice but that has subsided ( strange)

I look forward to hearing your news and views.

[Janiebobs]

Hi

Sorry to hear about your Mum, my dad also didn't get a positive result from his Biopsy in Jan from the ERCP. The oncologist said they could do it again but they would have to go through his back to try reach the tumour. It would have to to performed in the specialist centre which is over 100 miles from their home. As my dad is elderly (83), lost over 3 stone and is frail the oncologist advised against the procedure.

I hope your mum is feeling stronger

Jane

[Ruthos1]

Hi Jane,

Just logged on now and saw your post.

How is your dad?

A lot has happened since I last posted.

Biopsy results( taken from the duodenum as there was too much obstruction to reach the pancreas) were negative.

I have since seeked a 2 nd opinion from a specialist in Southampton .

He is of the opinion that my mums CT scan is characteristic of chronic pancreatitis but is not ruling out cancer of the pancreas as yet.

An MRI and PET scan have been requested.

My mum is not well , she can only manage small amounts of food, appears jaundiced again( bloods being taken tomorrow ), pain most days .......

Apparently pancreatitis can cause these symptoms aswell.

What makes the Drs think your dad has cancer?

Is it the CT scan result?

I wish you and your dad all the best.

Ruth