moonpie1

thank you lainy, I will keep you all updated, I am in the process of relocating for work, I have a couple of interviews coming up which are closer to home, So I will feel much better knowing that I can visit them easier.

hello all

mum had her appointment with dr sturgess, I am left with mixed emotions of relief but anxiety if that makes sense. I thought I would get all the answers to our list of questions, its only now thinking back on what was said and what notes I managed to make , am I thinking that I want to ring him back maybe tomorrow and try and go through some things and get some clarification on questions. Im sitting here and mum and dad feel that the meeting happened so quickly and at the time we thought we knew what was being said, but now I still don’t exactly know what the diagnosis is. my mum and dad and I have been sitting down before trying to piece together what was said.

He started off the meeting saying that no cancerous cells were found-which is good news ! he was talking a lot, but I don’t think any of us were taking much in as we had been quite anxious before the meeting and the build up to this point has made us all quite tired.

I passed over my list of questions and asked him to go through them- the sheet with ” what if results are negative/inconclusive”

in answer to my first question about -is there concern there is still malignancy, he said that cancer still cannot 100% be ruled out, he said that mum has had two negative brushings, forceps biopsy done with ERCP and another biopsy of the stricture site done, he said that he feels that if there is a tumour present, it is indeed very small and early in its stage

I then asked if FNA was done- he then said that EUS and FNA were not done, he said this was because he could clearly see the stricture, But I am confused as the ward doctor said that all the tests were done and mums letter had scheduled her for both EUS and Sypglass ERCP, so I am a bit puzzled as to why that didn’t happen but didn’t ask for further reasons at the time. He said that a biopsy was taken and he said that it came from the stricture site directly, it hasn’t been directly confirmed whether that was done through the spyglass procedure.

He then said that blood tumour markers tests haven’t been repeated, but he said that he is comforted that mums CA19-9 levels were normal, I

I asked him to go through the other reasons for the stricture, he said that IG4 autoimmune pancreatitis has been ruled out, he said that primary scelorsing cholangitis is very unlikely, he said that stones have been ruled out and mum has had no history of stones, I asked if it could be something like intraductal papillary mucinous neoplasm or something premalignant,

he spent quite a bit of time saying that it could be a premalignant problem that needs close monitoring to see if changes were seen.

he said that the bile duct stricture is still present, it hasn’t reduced in size neither has it increased in size, he said that the bile duct stricture still remains a concern.

He didn’t really go into much detail about exactly what the pathology report showed, sitting here kicking myself for not asking.

He said that he wants mum back in for a repeat ERCP in 8 weeks time, he said that he wants to put in a wider stent- his words were “something more permanent but not too permanent, something that will last 6 months + as opposed to the one you have at the moment which usually clogs up in 3 months” I should have asked him if it would be a metal one.

He said that if an otherwise fit and healthy person was sat here ( someone without breathing problems), they would be recommending whipples surgery, but they are worried about offering it to mum, but he then said that if the surveillance visits show up cancer- then he would revisit the option of surgery.

I have been chatting to mum and dad and they are keen to run things over with professor lodge to see if he thinks that the recommendations are appropriate and see whether he would be recommending surgery-

do you think it would be good to ring mr sturgess up again and try and get some clarity on what was discussed today and then take all the info to prof lodge for his opinion?

hello,

thank clare for your kind encouragement, I have been feeling quite low about it all, as has mum, and the waiting really does grind you down, we just want to know what we are dealing with and get a plan together and support mum in that journey whatever road we have to go down

your suggestion of writing out lists of questions has been really helpful and I have taken time to type out a long list of questions for Thursdays consultation, ive done two scenarios , 1 if the EUS and spyglass results come back negative or inconclusive and 2, if the results show cancer,

I have been doing reading and research since all this started in may and feel that I understand a lot more about this cancer, the diagnosis and treatment available and will be going to the appointment with mum and dad as they are not scientifically minded and mum hates asking questions as she feels she is a nuisance, I certainly don’t mind being the one to ask the questions to get the right answers and treatment plan,

Mum has had an MDT discussion at her local hospital but we wanted a second opinion as they ruled out whipples procedure due to her medical unfitness, they also stated that mum may not be fit for chemo and so we were left with lots of questions about trying to get a definitive diagnosis in order to be considered for chemo if it definitely is cancer and also to ask another team to review surgical options, Aintree have said that mum will be discussed at their MDT-in fact I think they have it on a Wednesday or Thursday morning.

I thought I would share with you all my list of questions, I migt have gone a bit overboard but I don’t want any stone unturned and don’t want mum to just be floating in the system for months on end only to find out later on that things may be to late to sort anything.

If results come back negative/inconclusive

-Is there still concern that there is still a malignancy ?

MDT report from Upper GI cancer meeting- 7th June- suspected pancreatic carcinoma from CT imaging, no obvious mass lesion seen on CT, ampullary soft tissue lesion cannot be excluded , suspected cholangiocarcinoma from ERCP and imaging, -double duct sign( pancreatic and bile duct dilation, mild intrahepatic duct dilation too) read in a journal that this may indicate pancreatic malignancy, distal biliary stricture intrapancreatic portion-due to length of stricture (2-3 cm on first ERCP, 2cm on second ERCP. Dr Meaden and MDT report in June state that severity of jaundice and length of stricture is likely to be malingnant, second ERCP distal biliary stricture found irregular and shouldered within CBD- have read in journals that the length and shape of mums stricture signifies typical features of a malignant stricture, read in journal and spoke to liver specialist nurse and notes on mums letter to GP state that negative cell brushings and biliary forceps biopsy doesn’t mean that there isn’t cancer, often brushings and forceps biopsy via ERCP often give inadequate yields. Elevated CEA levels –june blood test, Elevated CRP levels done in july and august? Pre endoscopy notes in august at Aintree state probable cholangiocarcinoma-tissue diagnosis needed.

-What did the EUS and Spyglass show?

-Was FNA done, were further brushings and forceps biopsy taken and results of these?

-Have blood tumour markers tests been done again, first set at local hospital showed raised CEA levels but normal range CA19-9 levels?

Has mums stricture changed in any way since first ERCP- reduced/increased in size,shape, location?

-Pre malignant? – such as intraductal papillary mucinious neoplasm?

-non cancerous?- chronic pancreatitis, IG4 autoimmune pancreatitis, primary sclerosing cholangitis, scarring from a potentially historical stone? Benign adenoma?

-what happens now, further tests- CT SCAN, repeat ERCP/EUS? Repeat blood tumour marker and blood tests, surveillance? Second opinion from professor lodge?

-Will mum remain under your care for follow up care?

-What if mum begins to show signs that stent needs replacing or is having symptoms associated with bile duct stricture issues, can she be seen by this team as opposed to local hospital team?

If results show cancer

-Where is it located?

-Confirm the type of cancer? positive biopsy/ strong clinical suspicion based on other findings?

-Any idea on staging and spread?

-Can curative surgery be done? whipples procedure? Bile duct only resection if in very early stage and only within bile duct? Liver resection?

-If no to surgery, why?, is this due to the tumour location/spread? Or is this due to pre-existing health concerns?

-Has mum had a thorough pre-operative assessment?results of these tests/assessments?

-Has she been discussed for surgical consideration at an MDT?

-Has a respiratory consult been done re COPD and spinal consult been done?

-What are the extra risks/contraindications associated with mums pre-existing health conditions if surgery was to go ahead ?-anaeasthesia-breathing/heart complications, spinal complications, very poor post op recovery?

-Can keyhole surgery be done?

-Second opinion with Professor Lodge on surgery?

-If not fit for curative surgery, can a bile duct bypass be offered to prevent need for replacement stenting or a metal stent be fitted?

-If no to surgery, what other treatment options are available?

-will mum be referred to oncology team?

-Will mum still be reviewed by yourselves?

-Will chemo be offered?

-Will radiation be offered?

-Will photodynamic therapy be offered?

-When can treatment start?

-what do you hope to achieve with treatment?

-side effects of given treatment?

-How long will given treatment last and how will it be set out- frequency, nature, location of treatment, follow ups?how will you know if treatment is working?

thank you in advance to anyone who reads it through , it is such a long post, sorry!!

clarem, thank you for posting, I haven’t been on here for so long I forgot I had to capitalise my first letter of my username to log on! your timeline of events ran a lot quicker than my mums for sure.

I have been doing bits of reading and understand that brushings can often come back negative and the consultant-dr sturgess had warned us of this.

I cant help but think that if mum was fit and healthy, they would be discussing whipples surgery by now, the original MDT report recommended a whipples procedure but then dampened their recommendations by then saying she was not fit for surgery

I think that because we have aske for a second opinion, this has delayed things plus Aintree reviewed the CT scans and ERCP from our local hospital and they wanted to re-run the ERCP before they did the specialist tests,

I really really am praying hard that next Thursday when we meet up again with the consultant they talk about treatment and confirm the tissue diagnosis.

I don’t know what else I can or could have done to speed things up, I did however have to put pressure on our local hospital when I found out that they failed to send the referral letter over to Aintree or even bother to make a phoncall to Aintree.

The waiting is getting to us all now, especially mum, we are just tyring our best to reassure her and support her that we will get answrs soon and things will fall into place treatment wise.

Mum does feel better with the new stent. The old one was v blocked up

thank clarem, I will mention to mum about requesting the notes

the secretary said that the spyglass procedure is only done twice per month as it is such a specliaist procedure and piece of equipment

Reflecting back, I think aitnree is best equipped to deal with mum and don’t think that getting prof lodge to review things so far wont make a big change, its best for mum to get these further tests done and stick with the specialist team

prof lodge also works at the spire hospital which is private.

thanks for clearing up the thing about the pre-op , as I didn’t think they would be assessing for surgery as that has been clearly marked out in her notes and from two teams that they thought surgery would be highly unlikely for mum