wrong diagnosis!!!! has anyone else had this?

[sarah1970]

Hello, My Mum was diagnosed with PC back in july and was told it was inoperable and she had 6 months to live. They decided to biopsy the tumour in August to rule out Lymphoma, and to everyones surprise all of the 6 biopsies were negative for any cancer. now 3 months on she has had a further CT scan which they say is inconclusive. they have said its 50/50 whether the mass in her Pancreas is a tumour or not. Has this happened to anyone else? its torture not knowing...... She inevitably thinks the worst but im trying to remain positive.

[cathdw1]

My GOD thats terrible , i was diagnosed in october with the same prognosis . i know how awful this news is to myself and my family and can.t imagine what turmoil you are going through , How can so called proffesionals make that mistake , this is someones life they are playing with . Iwish your mum and your family the very best and hope that all turns out good . x

[sarah1970 in reply to cathdw1]

Thankyou. I am so sorry to hear of your own diagnosis and prognosis. PC is for sure a terrible disease. I think the diagnosis was initially incorrect because they tend to diagnose based on CT scan and they dont routinely biopsy because the pancreas is so hard to reach and the biopsy is so invasive. but the Radiographer cast some doubt over the CT . We are now no further on than we were back in June when mum first got sick. They are unable to biopsy again, so we have to wait and see how mum goes. x

Reply to this

[Delly1]

Have you complained to PALS ? They are a governing body over the NHS, and when yr not happy, use them, we did for my mum Anne who also has terminal pancreatic cancer, and was diagnoised on September 11th this year, or take her for a second opinion, but keeping pushing them, your voice has to be heard ! Thinking of you ! Adele xxx

[editfmrt]

Please please go and get a second opinion - "wait and see what happens" is not an option. Especially for the possibility of pancreatic cancer - there are different types. Time is far too short and you cannot waste any time on PALS - the wheels grind far too slowly for the speed of pancreatic cancer. Google Professor John Neoptolemos, Head of Surgery, University of Liverpool and ask advice.

[sarah1970 in reply to editfmrt]

Hi there, I agree that time is important and that early detection is paramount. However they have already said that if it is cancer they will be unable to operate. This confuses me i must say! perhaps you are right maybe we do need a second opinion. We are in Plymouth, and I believe Derriford Hospital is one of the specialist centres. I will contact the Professor you suggest though.

Thankyou for your help.

[PCA_AliStunt Pancreatic Cancer Action]

Dear Sarah,

If you are not already doing so, it would be advisable to check that your mum is being treated in a specialist centre for pancreatic cancer. Also as editfmrt suggested it may be a good idea to seek a second opinion. Get in touch with us directly at Pancreatic Cancer Action if you want to find a specialist near to where you live.

All the best

Ali

[sarah1970 in reply to PCA_AliStunt]

Hi Ali,

Thankyou. Am I right in thinking that our local Hospital in derriford plymouth is a specialist centre?

[PCA_AliStunt Pancreatic Cancer Action]

HI Sarah,

Yes it is the specialist centre for the SW.

BW

Ali

[sarah1970 in reply to PCA_AliStunt]

Thankyou Ali, do you think i should contact this professor up in Liverpool? Thing is im unsure mum would go anyway!! Shes very down, but mum and dad are old school, no such thing as depression!! if you know what i mean.

BW

Sarah

[cathdw1]

Could someone give me the nearest specialist centre to me , i live in Huddersfield and not sure if Leeds is the one i need . thankyou x Cath .

[PCA_AliStunt Pancreatic Cancer Action]

Sarah, While Prof Neoptolemos is an expert in pancreatic cancer, Liverpool is quite a distance to travel from Plymouth. It may be worth a referral to another plymouth specialist or the other specialist centre near to you would be Bristol.Please email [e-mail] if you would like a list of names for these regions.

BW

Ali

[PCA_AliStunt Pancreatic Cancer Action]

Hi Cath,

There are 3 specialist centres in Yorkshire - Leeds is probably your closest. The others are Hull & E Yorks Hospital and the Sheffield Teaching Hospitals NHS Foundation Trust.

Surgery is usually carried out at specialist centres and the MDT (multi-disciplinary team) meetings will be held there too. However, sometimes treatment (such as chemotherapy) agreed at the MDT meetings can be carried out at a district or local hospital which may be closer to home.

MDT meetings will involve specialists including surgeons, oncologists and others such as specialist nurses and dietitians who will collectively advise on your treatment.

Hope this helps,

Ali

[Debbz]

Hi, yes I have heard of this happening...This is because the pancreas is very difficult to get to, sometimes the CT scans can be misleading to show whether a tumour has grown or deceased. An biopsys are very "hit and miss" as there is the gall bladder and other vital organs in the way of it

[lifelover]

Hello my friend was recently misdiagnosed with PC but it was Autoimmune Pancreatitis. This is no picnic either, but a better misdiagnosed that PC. 5-29% or disdiagnosed, so it is important to make sure it is the proper diagnosis. Look up AIP, it is newely recognized and there are many blogs from people who talk about their experience and similarities to PC. My friend was sent home to die and they were wrong!!! Never give up hope and remember God will never let you go through anything alone.

[Ruthos1]

Hi,

My mother has had similar .She was diagnosed with advanced pancreatic cancer with weeks/months to live.However the biopsy Fromm her pancreas came back negative.She had am EUS performed yesterday and the Dr was unable to get to the pancreas due to narrowing of the duodenum. He took several biopsies from there and we are now awaiting the results plus another CT scan has been requested.

H is now mentioning pancreatitis!!

We are soooo confused.

[sarah1970 in reply to Ruthos1]

Hi there, this sounds very similar to my mum.... they basically in the end sent her home and said if you improve then its pancreatitis and if you deteriorate its most likely cancer.... it was awful not knowing and hoping for the best.. i cant stress enough to get a second opinion if this happens. i hope its good news for you. hug x

[Lily46]

Yes. Just happened. No idea whether its cancer or not

[kat2492]

We are in the same situation..my mum was diagnosed with gastritis and PC over a month ago after having scans for sore belly and back pain. We have been told it is inoperable as it it at the tail of the pancreas, around the blood vessels. Saw oncology few days ago and saw the scans which were hard to make out. Doc told us he is 95% sure he knows the type of tumour so agreed on the appropiate chemo treatment to have. However this can not begin without confirming the blood test markers. He told us if they are really high then it is confirmed what he is so sure it is. HOWEVER, blood results came back and they are quite low. Its coming on 6 weeks since mum was diagnosed and she is now being told she needs a biopsy which will be at Derriford in Plymouth (We live in camborne, cornwall). Rang doctors surgery for another blood test and they will not book it until they get confirmation from oncology....who are not available till monday..it is now friday!!! So angry we have been waiting so long when something could be done right now. I am only 21 and feel like we are being messed around, never mind the stress we are already under.

[sarah1970]

Hello kat, So sorry to hear about youre mums diagnosis. Sadly i lost my mum in April 2012. She, as you have read was told that 6 biopsies were negative for cancer cells. But sadly she deteriorated and passed away with a cancer cell never being identified. My dad did not want a post mortum to confirm the true cause, but the dr said she died of pc and that is what went on her death cert. She never ever had any elevated blood markers, they were always normal. Hers was a very unusual case i think. If there is one thing to come out of it it is that i wish we had gotten a second opinion like Ali suggested but mum amd dad werent interested in doing that.. If you get the opportunity to do that then i would. Prof neoptolamas mentioned above agreed to review mums case, he is in Liverpool, but like I say mum wouldnt go. When mum had her biopsy it was at Derriford also as we live in Plymouth. If you want to chat to me then message me back. I really hope things are more positive for youre mum. Also if you feel that you would benefit from some support you could join our facebook group called families in support of pancreatic cancer awareness. Its a closed group but just ask to join. you will get a lot of support and info on there.

take care

sarah x

[kat2492 in reply to sarah1970]

Hi Sarah, I think my mum's case is very similar to that of yours. She had a biopsy at Derriford 2 weeks ago and the results came back inconclusive. We are now waiting for her to have a CT scan asap as her chemo is due to start this thursday. I am very frustrated as no one seems to know for sure what is happening and mum is still suffering. I am very sorry to hear about your mum. It is an awful situation to be in. I am hoping to get her to see a specialist very soon. I complained to PALS which did get things moving a bit but now its seems to have come to a standstill again and another waiting game.

[kat2492]

Mum had the biopsy which came back inconclusive so they did a ct scan. Tumor has not changes but they found secondaries in her liver. She started chemo yesterday

[sarah1970]

Hi Kat, Im so sorry to hear that... i hope that she responds well to the chemo. My mum wasnt offered any chemo as they said it wasnt ethical to give chemo when they couldnt be sure that she had cancer.I is very frustrating i know. big hug x

[anigma1]

Thats disgusting. I have swollen pancreatic ducts found in may and im still waiting to find out cause . I also am terminally ill with breast sprad . Fed up with it all