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!!