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(5 replies, posted in General Discussion)

Thanks Kris, they are both in November, Mum had to get taken back into hospital in the early hours as she ha got an infection most likely from the ercp or that she has been bubbling with it for some time, as she became really unwell, im planning to get back up north on Friday as the drs are saying she is likely to be in for at least 2 days as se is on antibiotic drip and fluids,

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(5 replies, posted in General Discussion)

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.

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(5 replies, posted in General Discussion)

hello everyone, I have not been on here for a while, I hope everyone is doing ok,

my mum went back in for her repeat ERCP, I wasn't with them this time due to work commitments but dad called up later on this eve to tell me. he said that they have put a wider stent in, he mentioned that the doctors want to do a CT scan within 2 weeks and do some other camera thing- I think he meant a repeat ERCP however im not sure, we are due to meet the consultant next week to discuss biopsy results, I will be travelling back up to be there with them.

I am praying that it is positive news, however I am worried as dad did sound subdued but it is too early to tell what is going on without speaking with the consultant I guess,

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

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?

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!!

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!!

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,

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.

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.

Again  thankyou everyone for ypur kind and very encouraging posts. It really helps to know there is such a fantastic resource wheto come to. I

Whilst i will never really accept what is happening i feel slowly that i am living abd adapting to it. It is painful to have to think about the future abd the course it may take i have got to carry on supporting my family and having fun as a family. This week with my parents has shown me that we all have the syrength to get thrpugh whatver is ahead

At the same time i have been dping a lot of research on the matter as i fl that knowledge is the key with all this and making sure we understand the what abd the why .

I have managed to get hold of mums mdt report from her local hospital and short reports from aintree and have printed off journals to help my understanding.

hello all

got back off from my holiday and back home with my parents for a couple of days before heading back for work, holiday was lovely and very relaxing and gave me time to reflect on the busy stressful few weeks we have had.

An update on mums proceudre and results so far: mum had her appointment today with the dr at Aintree hospital following last weeks ERCP.

the meeting started off with explaining what they did. we were all under the impression that the procedure mum had done last week was the spyglass, it turned out that it was another ERCP where they replaced the stent as the first one was very blocked and not the right size for the stricture according to Aintree, so they replaced it with a wider and longer one and said that this new one will make mum feel a lot better and it has which is great.

the dr then said that brushings and a biopsy were taken, I queried whether they did a bowel biopsy and they didn't, mum now thinks that she got a bit confused when they were talking to her and now understands that the samples were done from the bile duct, im guessing if you are layed on your side and having sedation and the dr talking to you-its easy to get things a bit muddled!!

the brushings and the biopsy came back inconclusive, however they said that the stricture was long, irregularly shaped shouldered at the margins which indicate malingnancy, they said that they are not ruling out cc but mum has had two inconclusive samplings done now, some of her blood tumour makrers came back normal ca19-9 I think it called but another  CEA tumour makrer came back abnormal and they want to repeat these again. the dr said that not everyone expresses the tumour markers so they are not reliable but they can help with the overall picture.

the dr then explained that he wants to get mum in to have the spyglass and also the endoscopic ultrasound, he said we would get an appointment date within 1 week, we got home from Aintree and there was an answerphone message with an appointment for 16th august, she will have to go in for a couple od days as she will be having a general anaesthetic and we are travelling a fair distance.

Aintree have been brilliant with mum so far, they are being very thorough, very clear about what they are doing but also neutral and not jumping to conclusions too quickly. the local hospital oncologist offered a plan of going home for some months and having a CT scan, at that point we didn't agree with that and asked for further tests and opinions, thankfully Aintree have reacted quickly to this and got mum sorted with her tests in a reasonable time frame.



The last few weeks I feel I have just been blocking off the emotional impact of all this and just focussing on all the technical.sciency stuff as a way of coping I think , it hit me today after the meeting and also having time away from my parents to think things through, that ive been lso been quite angry at my dad for his optimisim and the way he is shielding information from mum and thinking quite negatively about it all,

I got quite annoyed at dad after the meeting as he kept saying to mum its all very positive -I don't think you've got cc, I think its just been a bad infection and mum was agreeing with him and starting to say I don't know why I need these extra tests,

My dad and I ended up having an argument, I got upset and told him about the research that ive done- about the tests/diagnosis treatment etc, showed him the information in the MDT reports that we had received and explained about their comments in them stating that the stricture is highly suspicious of malingnacny. told him about how hard I have found these last few weeks, how i think im coping with this by doing this research, mum came in and saw us both upset and it was at that point that we all talked together, we talked about a lot of things and most importantly talked about how I was feeling, mum started to open up a lot as well, also dad, it felt good to talk about how we are feeling and knowing that we are all on the same page now with being realistic about what the next lot of tests may show and what may happen. it also reminded me that with adversity comes positivity and I am thankful and pray everyday that as a family we are facing this together and supporting eachother.

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(7 replies, posted in General Discussion)

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

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(7 replies, posted in General Discussion)

Hi mum is being kept in but may be allowed to go home today-they are having a chat with the registrar today and i think the cobsultant dr stugess wants to see them aswell once the biopsy results r in.

I feel so guilty for not being there but mum abd dad told me i had to go on the holiday that i had booked months ago. So im keeping in touch with skype and email with them

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(7 replies, posted in General Discussion)

Hello all

Mum had her ercp spyglass r procedure today. It went well and she shpuld be able to go home tomorrow. Wedidnt get chance to talk to the consultant but he said before the procedure that he wpuld tell her as he went along what was happening as mum wanted to know. She had a nurse withher who told us afterwards that the consultant was very concerned at what he was seeing and that putting the replacement stent in was very tight going and difficult. He said that he managed to take biopsies in yhe bile duct. Mum also mentioned that a biopsy of the bowel or colon was done-didnt realise the ercp went down that far? We will get the biopsy results back in 2days but the consultant said to mum that what he was seeing indicates very strongly cc.

hello all

just wanted to say I am very happy that the referral to Aintree for the spyglass ercp has been moved forward

mum was called to see the consultant today and it was decided that mum would have this done next Tuesday as opposed to the 29th juy

the consultant didn't pull any punches and said that they are almost certain its cholagniocarionoma of the bile duct or an adenocarcinoma of the pancreas and they don't want to let mum wait around fr weeks on end.

ive already got the contact details of professor lodge ready to see him privately if they say It definitely is cc or the pancreas cancer and if Aintree don't think mum wud be a candidate for surgerydue to her health etc, I would just want proff lodge to confirm or look into possibilities before we accept that it is palliative

sending my prayers and positive thoughts across to you all xxx

hi gavin,

my mum got a 16 page letter from Aintree explaining the procedure and in the letter it also explained that we would be seen by the consultant afterwards and the results from the biopsy from the spyglass will be given that day as they have an onsite lab, mum and dad are very impressed with the facilities and the way they are explaining the procedure

so you are right gavin, feel very lucky to have mums care be dealt with this by this team.

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

Hi Lainy

With regards to prof lodge, I don't mean behind my mums back but mean paying privately for a consultation and mum is in full agreement that it would be helpful to have a copy of the MDT reports.  It seems though if you have money you get seen quicker and if we can be seen quicker and get some answers from a top guy then we feel it is money worth spent.

Hello all

I spoke to Aintree hospital today and they have booked mum in for the 29th july,

they said that the spyglass procedure will be done on the 30th july and the secretary mentioned something about a pre-op assessment on the 29th july,

I asked the secretary whether the dates could be brought closer, and she said that due to the spyglass being a specialist procedure, they don't carry this out weekly and only do it twice per month and due to the delay from our hospital to Aintree- she has just missed out ,

I asked the secretary what the pre op assessment was all about and she advised me to speak with the specialist nurse at Aintree- she said that they do this to see if someone is fit for surgery

I have a couple of questions,

1, does anyone have any experience of the spyglass procedure- I have read that it is very accurate in detecting cc as it can get right into the bile duct, I know that mums bile duct stricture is nearly  3 cm long and its right at the bottom near the pancreas end as opposed to the liver end

2, am I reading too much into this that they may be thinking that mum could be a candidate for surgery- as the intital letter from the MDT said that the surgery of choice in this case would be the whipples procedure,

3, is there any way I can or my mum can request a full copy of the MDT report that wa typed up following on from the local mdt and the mdt at Blackburn , as If they are starting to consider whipples surgery, I would like to maybe have a consultation/discussion with proefessor lodge and maybe do this privately, I am guessing the best way to get a thorough consult is to have the MDT report given to us with all the facts laid out bare

I feel a bit calmer and so does my mum and dad, we still feel upset that the local hospital have messed us around and mum could have been in for the procedure by now and we could be talking next steps or preparing for surgery if that is a possibility.

lainy, I am getting really impatient, my mum is getting quite down feeling that they are not taking her seriously, mum went to the dr a few days ago with pain in her stomach and when the dr felt her stomach it was painful but the dr didn't say anything but just said she really wants to get the appointment sorted asap. I will be on the phone again Friday morning and will want some answers then. im praying it gets sorted as i am worried about mums wellbeing and her mood is just getting lower and lower, she reall needs to be strong for this and feel that she has the full support of the medical team, it feels as though we have been cast adrift and feel that because mum has asked for this second opinion/further detailed tests, that they maybe see us as a troublemaker.

hi gavin ,

thanks for the link, it certainly sounds like a great team with great knowledge and a willing attitude to do whatever can be done in improving peoples quality of life.

I spoke with the nurse specialist who works under the oncologist we saw on 17th june and she has rang the Aintree team and she has assured me that dr sturgess is very quick at accepting referrals and has asked me to ring her on Friday if we don't hear anything, I guess all that hard work yesterday leaving messages for the oncology secretary, speaking with the GP and also with Aintree directly has helped get things moving, so I am praying hard that mum will get her appointment to go to Aintree very very soon and we can get some proper plans drawn up.

I also spoke to my mums gp who is very supportive and she said she will fire off some phonecalls tomorrow too, she is jumping up and down about this,

basic communication is missing, hello from one hospital to another hospital checking receipt of referral is really all it should take and then they could have rectified the issue instead of letting it drag on like this.

clarem, don't worry about your spelling, mine is dreadful, I sometimes reply on my smart phone and I have the same issue hitting the wrong keys!

hello all, as some of you know ;mum wanted to get further detailed tests done at Aintree hospital and the oncologist agreed with this, we saw him on the 17th june, he agreed to refer on immediately,

I started getting a bit worried on Friday that we have heard nothing so I rang through to Aintree and the secretary to the doctor said that she has not received any paperwork or any phonecalls so I got my dad to fax her the referral letter that was sent to them on the 20th as we requested a copy of the letter. I then spoke with the nurse specialist who works alongside the oncologist and she said that the letter was sent to them on the 20th june but didn't follow it up with a phonecall.

So the secretary at Aintree asked me to fax the referral letter that came to my dads house, so I got him to do that and she said she would try her best to get things sorted her endm

Just feeling a bit frustrated and let down that lack of communication and monitoring has led to this delay

just worried as the weeks go on, things could be progressing and making it harder to manage and deal with.