update on mum, this is a long long journey
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Dear Moonpie, you sound better today and I am glad to hear that. Def, def have Prof Lodge take a look, it can’t hurt anything and it will give you the validation you deserve and need. Take care and of course you know the res…..keep us posted. Be Strong.
hello everyone, thank you so much for your advice, clarem- thank you for the virtual hug, hugs back to you all, I have to be honest with myself these last couple of weeks and intermittently, me and dad have had our low times and when you feel like this, it makes clear thinking and logical thinking almost impossible and I think this has what has happened recently with me.
I managed to speak to the specialist nurse, she was brilliant with me, very understanding and was happy to answer as much as she could, she explained that whilst it is positive news the two biopsies and brushings have come back negative, they cant 100 percent rule out cancer , she said that the pathology report showed mostly benign cells with some slough( not sure what that means?) she said that dr sturgess thinks that it more closely looks like an adenoma, she said that whilst adenomas can remain non invasive there is a risk that they can become invasive and turn into cancer. she was very honest and said that they cannot 100% determine the exact cause of the stricture, but did assure me that mum will be placed under surveillance for as long as they feel its needed until they are confident there is no malignancy or other medical difficulty, I do have faith in the Aintree team and need to let them take care of mum.
But I think I will still take the information to prof lodge for his opinion as we have nothing to lose in asking him his opinion and might help me to calm down and put some temporary closure on this stressful time. mum is very similar to me, she wants answers and solutions to things and wont settle, I have to realise that not everything can be accounted for and sometimes time is the only thing available.
again thank you all for your support and advice xxxx
Hi Moonpie,
I agree that calling Mr Sturgess is a good idea for clarification if you have things that you want to discuss with him again and I am sure that he would not mind that at all. And if you couldn’t speak with him today then I am sure that you would be able to get hold of his specialist nurse who I assume was there at the meeting yesterday with your parents as well? When we had meetings like this with my Dads GI specialist his nurse was always there too to help out of need be.
As to your point re some of the tests not being done and the ward doctor saying that they were done, I would assume that Mr Sturgess is ultimately responsible for your mums care and all testing decisions as to what needs to be done etc would have been his decision to make and that the ward Dr did do all of the testing that he/she was told to do.
For sure if your mum wants to then seeking a further opinion from Prof Lodge is something that you should look into. No harm at all in getting him to see your mum to see what he thinks of everything for his opinion. Stay strong.
Hugs,
Gavin
Hi Moonpie,
I just want to give you a massive hug – I hope you don’t think in being inappropriate.
I think clarifying your points is necessary. No one could have retained that amount of info and any doctor worth their salt will understand that.
It does sound like the diagnosis for your mum is problematic but my gut says keep pushing them.
Moonpie…..Some institutions will not allow taped sessions with the physician hence, I would ask prior to meeting. In regards to the unanswered or not addressed questions, it would make sense to ask for a phone conference. You can always try. As for the second opinion – I am a big (huge) proponent of several expert opinions. If anything, you will receive confirmation of what already has been noted. Given by what you have mentioned so far it appears that it is not an easy diagnosis to make and definitely, you would want other qualified physicians involved. Hang in there, dear Moonpie, and try to relax a bit. I know it is tough, but with early diagnoses (if malignancy is determined) you have some time to gather your strength.
Hugs,
MarionMoonpie, not sure how to say this to you but I think you were all so anxious that you listened to the ONC but didn’t hear him. With that said it cannot hurt to have Prof Lodge take a look and honestly next time you go to the ONC I would suggest a tape recorder. I am not being funny, I seriously feel it would be very helpful to you. As for the Pathology report I am sure you can get a copy of it. Hoping you get in touch with Prof Lodge and that he can put your minds to rest, for a bit anyway. Be strong.
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?
Hi Clare,
Please do not doubt at all what you have done here for your mum. You have done everything possible for your mum and please do not doubt that in any way what so ever. Having been the carer for my mum for 7 years so far and having also been the the carer for both of my parents at the same time I can tell you that you are doing an excellent job here in taking care of, looking out for and also helping your mum through all of this. There’s no manual that tells us what to do in XYZ situation, no check list and no step by step guide here. We do what we can and we do our best and you Clare are so doing your best and everything right as well. Please do not doubt that ever.
Your prepared questions are all good and that is the best way to do this. It can quite stressful in these meetings and it is easy to forget to ask things that you want to ask, I can tell you that from my experiences with my dad in such meetings. So making a list of questions is the right way to go and feel free to write down the answers that you receive as well. Also, you could if you wanted to use some form audio recording to record the meeting so that you have the answers on tape or something like that. Maybe a smart phone with recording facilities? And remember that the only stupid question is the one that is not asked!
And please, no apologies are ever needed for the length of a post or for asking questions. You go ahead and post as long or as short a post as you want to! Ranting helps too! So also, go ahead and rant as much as you want to as well! We’ve all been there and ranted too and that helps get much off of our chests and makes us feel better too!
I know that you have so much on your plate right now with everything that is going on, but stay strong. You will get many answers to everything on Thursdays meeting and hoping that you will feel better after that. And as always, you know that we are here for you.
My best wishes to you and your mum,
Gavin
Moonpie, just ignore that co worker. God forbid they should ever have to deal with what you are going through. Some people! I detect a little bit here that you feel you are not doing enough when you certainly are. With CC our hands as Care Takers are kind of tied, it is all so frustrating. Perhaps down the road Mom and Dad can reach out to friends like accepting a dinner or etc if Mom is under going Chemo. Or someone to do their grocery shopping. I would wait and see what the ONC tells you first. I think you are very anxious about the appointment and you need to take some deep breaths. I feel that what ever the ONC says you will all calm down as at least then you have your answer and begin with what ever has to be done. Be Strong.
thanks clarem and lainy for your enduring support, It is so comforting to come on here and see the support and advice, I am finding it so difficult having to support my parents from a distance- we are a very close and small family both my mum and dads side of the family isn’t that supportive and helpful so it really is down to me and dad to support mum and eachtoerh as a family- I worry so much about them as they do have good friends but don’t reach out to them for support and they don’t hae any other family support . I am visiting as often as I can taking time off work for these appointments and trying to get mum on some sort of treatment plan an help dad get some support and give him a hand with things a he isn’t in best of health at the moment eiter. whilst work are supportive, however one colleague has made me feel that I need to work through this and get on with things and carry on, whilst I do my job and do it well, I don’t talk about my mum and whats going on much but there are times where I just want said colleague to show a bit of compassion.
Lainy,I will put that question down aswell, I am heading back home tomorrow ready for mums appointment on Thursday , we are going to sit down and see if mum or dad have any more questions to think of,
thank you again, and I know have ranted on a bit above, it just help to type it out rather than it sit in my head!!
Moonpie, good going, girl! I have one more suggestion. While we hope for the best let’s just say it is not good news but the ONC recommends chemo or something that will be hard on Mum due to her present state of health. Make a note to ask the ONC, will treatment buy her quality time and get an educated guess, mind you its only a guess, but what time frame is the ONC looking at with treatment vs non treatment. The reason I present this is that when we found out Teddy’s CC returned for the 2nd time the ONC said that was it and offered Palliative Chemo. Teddy asked him how much time would it buy and the ONC said without chemo 6 months and that chemo would add maybe a month. Teddy choose not to do it. This will help you all decide what to do if presented with the not so good news. Still hoping for the best! Be strong.
Don’t ever apologise for a post or the length of it Moonpie. Posts are what makes the forum go round.
You’ve done a great job on the questions. No doubt you’ll come up with more. I don’t think you have gone overboard – there is no place for unturned stones when the stakes are so high.
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!!
Moonpie,
Please do not doubt your own actions and advocacy. It is not the responsibility of relatives to drive, chase and push forward through this maze. That is firmly the responsibility of the medical profession. Sadly though, it is not always that straight forward and in reality it can take the actions of patients and relatives sometimes to forge ahead. You for one have had your foot on the gas from the beginning. The lost referral to Aintree? I seem to recall that was only picked up through your initiative and follow up. You are a great advocate for your mum.
You must all be getting to the end of your rope with this waiting – I remember it being an incredibly hard time- one of the hardest bits of the whole experience.
Aim for Thursday’s meeting with the consultant and go in focused. Be sure in your mind what you want answered, what you want to know and write it all down before you go in. I went with my sister and her husband to their meeting and we had 2 pages of A4 questions. We brainstormed the week before and wrote every question, big and small on that bit of paper. Some were very hard to even think about, let alone write on paper. Many were answered without us having to ask as the consultant went through the facts and options. Others we had to be direct with. I was very direct with my questions. The consultant was incredibly patent and dealt with every single one, going through the list with us, crossing the questions off as we dealt with them. If you can, make notes as well. It will help you remember the information when you want to go back over it later.
I would like to think that if your mum has CC, then the whole issue of surgery as an option has to be discussed at the appointment with Prof Lodge. If it’s not an option why not? Is it the extent of the tumour ruling it out? Is it her underlying health issues? If so, what are the risks if surgery went ahead. These are some of the questions that immediately come to my head that I would have on my bit of paper. Your mums case should also be discussed at a multi disciplinary team meeting to get several opinions on how your mums diagnosis should be managed. I thought that was standard in the UK for rarer cancers like this.
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