update on mum, this is a long long journey
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Hi there. When T was DX it was 8 years ago, I honestly don’t know about tissue samples. I am not even sure if they did that then for CC. I only know I was told he was getting an Endoscopy. That was it and that along with the MRI confirmed. Everything was so new and unheard of I didn’t ask questions. But I don’t look back with regrets as that is the way it was 8 short years ago. There were only 2 Surgeons in the whole area of almost a million people who even did the Whipple. Thank God we got the right one! I would look over your stuff but quite honestly it would all be Greek to me, no offense Louie (Ilias)! Han in their Kid and be strong.
Lainy, please may I ask, did your teddy get a definitive tissue diagnosis prior to his whipples?
I have kept a spreadsheet detailing events and test results for my mum, I am strongly thinking of asking professor lodge to read over these and give us some advice as to whether we should be pushng for surgery in light of the concerns and mentioning of bile duct malignancy since june. I know surgery might not be offered due to mums pre-existing health conditions but knowing that we have tried is important.
I dont want to sound too cheeky but would anyone mind reading through my mum diary of events for me and giving some feedback as to whether we should be pushing for a surgical decision.
thank you again to all the wonderful people on this forum who have been such a source of support and knowledge to me since all of this happened with my mum,
Hi Moonpie, ditto on what Clare said. I have been thinking about you and your Mum as well. When Teddy was DX we were visiting our kids in Milwaukee and he totally Jaundiced. Went to kids Family DOC on a Monday the GP set him up right away that week with an Endoscopy and an MRI. By the end of the next week he had his Whipple. Please don’t question yourself about anything you have done everything right! It is not your fault as to what goes on behind the scenes. Very aggravating, I must say. I hope you get news Thursday so that you can at least know a treatment plan is in order! Wishing you and Mum the best.
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.
Hi Moonpie,
I’ve been wondering how your mum is and how things have progressed. I hadn’t got half way through this post when I started to realise that you still don’t have a diagnosis or plan of attack. To be honest, I am taken aback and expected your post to be about your mums plan and going forward from now.
I understand that diagnosis can be difficult and take some time but I am struggling with the 3 months to be honest. My experience of CC with my sister was limited and short lived but I’ll summarise the time line below for you as a comparison.
28th September woke up jaundiced
5th October ERCP
11th October GP arrived at her house to tell her the brushings were positive and she had CC.
18th October MRI
1st November meeting with consultant – told that surgery would be possible if her liver grew over a 4 week period
Week beginning 5th November she had external drains inserted and blood supply to her liver reduced to make the remnant liver part grow over next 4 weeks
17th December liver resection dateHer diagnosis and plan happened very quickly although I have to say at the time I was jumping up and down about how slow it was from getting her diagnosis to seeing the consultant and getting a definitive plan. It might all have been different if her brushings came back negative.
I don’t know Moonpie if it normally takes as long as 3 months but it does seem excessive to me.
Hello everyone just wanted to update you all on my mum so far
mum has been a bit poorly recently with an infection so ha been on heavy dose of antibiotics and shes doing much better now and has been working hard at putting a bit of weight back on.
mum has had her spyglass and EUS, they said that all went as planned, they changed the stent and then did the spyglass and EUS with fine needle aspiration, they took several biopsies, because mums procedure was done late on Friday and then she was recovering on Saturday-we didn’t have chance to see the consultant and the ward doctors didn’t want to go into any detail about the tests which I understood that they couldn’t. we have to see the consultant next thursday, mums specialist nurse and one of the drs did say that mum needs to be prepared for the news on Thursday that it may be cancer of the bile duct, even though this has already been mentioned several times to us, they wanted to get mum to get her head around it. I had a look at mums notes when she was waiting for her endoscopy procedures and it stated probable extrahepatic cholangiocarcinoma-distally located- tissue diagnosis needed for surgical consideration.
I just wanted to ask abut other peoples journeys in getting a definitive diagnosis, mum fell ill end of may time, first ERCP procedure done in june, we asked for a second opinion n 10th june as we weren’t happy with our local hospital, due to delays in referring mum over to Aintree- it added another 3 weeks wait, then Aintree wanted to re-run the ERCP tests that our local hospital had done and repeat ERCP before doing the specialist tests that mum has just had now, They have said that due to their being no obvious mass lesion seen on CT scans, it makes getting a tissue diagnosis very difficult, the consultant at Aintree has said that just beause the two ERCPs brushings results have come back inconclusive it doesn’t mean that the cancer is not there,
I know If mum is to be offered chemo they need a tissue diagnosis, but ive read on forums like macmillian cancer and spoke to a lady whose father has gone through similar thing to my mum, they offered surgery in the absence of a tissue diagnosis
I am happy with what Aintree are doing, in that they are being thorough but I cant help worrying that its been nearly 3 months since mum was being investigated and that we are missing a window of opportunity- surgery hasn’t been ruled out by this team as they will consider her fitness for surgery without discriminating on the basis of her COPD but time is pushing on.
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