moonpie1
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I will give the gp a call first thing tomorrow. Dad keeps trying to make excuses to reassure us but i have a horrible feeling the stent may not be working as mums now said shes had this for more than 5 days and doesnt feel right.
The mdt at two hospitals both agreed thst because of mums asthma and copd and other existing health problems mum would not be a candidate for surgery. They said that she would not survive the surgery or would have major post operative complications.
Whilst i hope with all my heart that its at an eaely stage-i cant help thinking something is at amiss. I dont think he has the authority or expertise to say its carcinomainsitu when the ercp they did disnt look righr into the bile and pancreatic ducts. I have to say it worried me wgen they said the stricture was 23mm long and very dilated. I just hope that the next team really getto the bottom of it all.
Does anyone here have any experience of the further testing that mum wil be gping in for? The endoscopic ultrasound and the spyglass. Mum has a plastic stent in-will they need to remove that to get a good look at the duct and put another one in?
As you can tell-my mind starts to get more active and anxious at night time-i feel thst we r making progress and getting mum to the right place but all the info along the wat is just so confusing.
Hi gavin,
Thanl you so much for taking the time to explain in more detail about pdt-i now understand that there is a lot more to it and those useful tips about the lights indoors and wearibg appropiate clothibg outside i just would never have thpught about. If mum does get offered that il make sure these things have been explained to her.
When we were with the oncologist who now i realise doesnt specialise in gastro cancers,made a comment about the staging of it. He said he felt that it was at an early stage and said its likely to be carcinoma insitu as tests showed no mass but did show a signigicant stricture of 23mm in the bile duct and was qyite dilated due to the height of the stricture-whilst this news sounds v promising and certainly what i want to hear-it has again confused me in that if it is at that early stage then surely she would stand a great chance of it being cured? However they have said that whipples surgery will not be offered. Also if it was at an early stage then surely mum wouldnt have had such a severe decline in health with her haubdice and symptoms leading up to it.
I am feeling that the sooner we start to deal with liverpoiol or christies and mum gas these further tests then the better. I just want accurate info and so does mum-her poor head keeps going over and over.
Hello,
I am happy to hear that your mum is doing well and hope that this continues for a long time.
my mum sounds similar to your mum in how she is doing physically, if you look back at my previous posts, drs have diagnosed mum with cholangiocarcinoma in the absence of a tissue biopsy, mum was rushed into hospital with severe jaundice where they identified a very long significant stricture in the bile duct, their tests lead them to believe strongly that it is cc but they have identified no tumour/significant mass.
we are in the process of getting further tests at a major hospital to see if there are any small tumours, get a good look at the pancreas and hopefully disprove cholangiocarcinoma, the oncologist feels that tests strongly show cc but they think it is at an early stage from what they know-stage 0-1, however mum is not a candidate for whipples surgery or any major surgery due to pre-exsisting health problems, so they have told us that care will be palliative in that sense and that they cannot cure it if it definitely is cc
my mum had the stent done about 1 month ago now and she is going from strength to strength, she is not jaundiced, she is eating little but often and only has the occasional pains but because she has a spine condition-she takes regular pain relief and that seems to be working well for her.
how was your mum diagnosed? If you are unclear on what they are saying, don’t be afraid to ask for a second opinion-
I wish you look in whatever you decide to do xx
hello everyone, thanks again to you all for your kind words of support and encouragement, you really are a great bunch of understanding and compassionate people and I am so thankful that this website exists. Soon I will feel able to offer other people advice and support in their journeys.
Gavin, thank you for clearing that up about the PDT, I haven’t really looked into it much, I just assumed it was new as I had never heard of it before, am I right in thinking that PDT is quite new in its use for bile duct cancers? How did your dad find the treatment, my basic understanding is that they inject some sort of chemical into the blood whereby the cancer cells are attracted to it to make them stick out more and then a laser light is passed in and it is the light that kills the cancerous cells? It sounds a lot easier on the body than traditional radiotherapy?
How long do we expect to wait for the other hospital-Liverpool to write to mum for an appointment, I really don’t want mum waiting weeks and weeks but understand that we are accessing another cancer network fund and all the administration that goes with, would it be reasonable to wait two weeks and then maybe make a phonecall to enquire on progress?
Thanks lainy- i am pleased that this oncologist is supporting further testing to inform the best possible treatment plan for my mum. I know its still going to be a long journey with bumps in the road but hopefully with the right specialists on board -we will all be in good hands. My prayers have come true
just a quick note to say thank you again to everyone who has been so supportive and helpful in their postings, you have really helped me through this tough week, I am travelling up north tomorrow and have a sense of peace and strength I didn’t think I would ever have, between my friends in life and my virtual friends here, I know I will be ok and I will be in a good place to support my wonderful mum and dad. I will keep you all posted how the coffee with mum goes and how the oncology appointment goes on Monday, thanks again xxx
also it is so true that I need to unburden myself with having to feel like I need to keep the information secret, it starts with getting mum to be honest with herself about how much she wants to know and guiding her with the help of professionals to go through the information and to break the news to dad,
this is a long journey I cant take on my own and if I sprint now im going to get shin splints later- someone at work put it that way and it just makes sense to take things easy, find people/means of reaching out for help to unburden the load and not to always play the social worker- I do that for my dayjob!
I cant thank you guys enough for your honest and sincere replies, it is so comforting to me at the moment to know that how I am feeling is natural and to know that you also feel the same as me about the situation
I had such a wobble last night as It all kicked it off when I was speaking to mum and dad on the loudspeaker on the phone because mum and dad were being so so optimistic and misguided about the treatment and prognosis, however mum texted this morning and said she really wants to ask the oncologit lots of questions and wants to get things off her mind, I now know that mum is trying to be very upbeat and optimistic for dad,i felt really angry at dad at first for egging her on about the chemo blasting out the tumour and that shes gonna be fine but I have had time last night and today to think and reflect and feel dads pain and this is way of shielding the true pain he must feel deep down,
I texted mum back and said that just me and her shoud go for a girly coffee together , try and give dad some head space and also to give mum an opportunity to open up to me, I want to ask her how much she knows/understands without dad being there and then go from there and ask her how much she want to know as she sees so desperate to get answers, in a way I am relieved she is like this, as at least we can hopefully have an honest conversation and give mum the best chance of making an informed and personalised choice over how to go about treatment and to help her begin to come to terms with the process/journey ahead.
Also, I made this call to the consultant today independent of mum and dad knowing, I feel as though I have been given the hard truth which Is what I wanted, whereas mum and dad went to the gp yesterday where our GP only gave basic details, so mum and dad left the surgery thinking that the bile duct stricture may not be cancer and they are offering chemo as a way to blast out the tumour and that if mum has a bit of cchemo they are in effect nipping it in the bud and getting it taken care of, whereas my understanding is more that chemo is going to be used as a palliative option.
I know I may be looking at the worst case and if after time this stricture really is benign-then that will be fantastic news but for now I have to put some trust in the consultant and follow a line of action
Prior to this, my dad and I went to see the GP and dad is very worried about breaking the bad news to mum so he was asking the GP to take the edge off things and only be direct in her answers if mum pushed for the answers, maybe this is what the GP has done and hence mum and dads perception of the situation now.
I feel that the GP has sugar coated the situation a bit too far, or maybe my parents are in denial or trying to hide the truth from me ( as I am young, live far away) maybe as a result of the GP honouring my dads earlier request to take the edge off for the truth,
I don’t feel at this stage, it is for me to say to them ive been having discussions with the consultant and know the harder side, but what worries me is that we have the oncology appointment on monday and I worry that the oncologist will either be going along with the GPS approach of fluffing it up a bit or be very blunt and come as such a shock to them both.
But I am worried that given the knowledge of this disease, some people can go downhill quickly whilst others it may not happen so quickly, this is what worries me that I want to put plans in place to make sure my mum and dad are supportd and maybe even try and find work closer to home, but feel that if I start to make these plans, its going to cause alarm and suspicion,
I am finding this bit hard to come to terms with about how to approach and act around my parents over the diagnosis.
I have got the contact details of the oncologist and may ring him in advance and express my concerns, I don’t know how oncologists work, are they very hard hitting and give the facts or would they work with
I am a firm believer in having hope to guide you through and despite all this horrible information that’s been handed over recently, there is still a part within me that says mum could be fine, mum could do really well and exceed expectation and that is very comforting but at the same time I think my parents shouldn’t be treated like children by the medics and mum needs to be given the facts before jumping headfirst into chemo without weighing up the pros/cons etc and also to enable me to help get the support to my parents and make any changes I need to do so.
I am so sorry for the long postings, I find it comforting to write my thoughts and updates down on here especially as I am not near my family at the moment.
Hello again,
thank you again for your quick replies and support, thought I would provide an update
I managed to get a callback from the consultant who had been dealing with mum, he was a very calm, very humane and very clear man. he was very patient with me and allowed me to witter on and ask the questions I wanted and gave answers and I feel that there was sincerity and a good base of knowledge behind his results and his answers
one of the first questions I asked him was to clarify the diagnosis, he explained that the two teams together had said that due to the length, height, shape of the stricture, the way it looked on CT scan and through the camera on the endoscopy, abnormal blood tumour markers all typical of cholangiocarinoma.
I queried him further and said that I had read a journal article stating that malignant strictures are often more than 10mm long whereas benign strictures are often shorter, he stated that mums stricture was 23 mm long and again other measuresments also indicated that mums stricture was over the documented thresholds for benign indications.
I then asked would it be in mums interest to get a tissue biopsy done and to confirm the cholangiocarcinoma, he said that it would take up to 6-7 weeks to get the test done, analyse results and confirm an answer, he said that he does not feel this would benefit mums overall treatment as the goal of treatment will remain the same-as the two teams feel with a certain level of confidence cholangiocarcinoma is present
I did forget to ask whether the biopsy would be good to show if the cells are fast or slow growing, but can ask about that later on I guess, he did say that the ct scan shows no obvious sign of spread but he has said that there might be microscopic spread and that the stricture is 23mm which he said is quite long and also that he feels there is pancreatic involvement.
I then asked him about surgery, he felt that the whipple surgery would be out of the question due to mums pre-existing health, I don’t know if there is such thing as keyhole whipple surgery? I don’t know whether that would be as invasive and demanding on the body as traditional surgery. I now understand that they cant just remove the bile duct as he said the location of it means that part of the pancreas will have to come out aswell as the intestine hence the need for a whipple procedure.
I went on to ask about chemotherapy, he said that with this type of cancer, only certain chemo only have shown to have some effect slowing growth/spread but not eliminating it it and it is so difficult to really tell whether chemo will have a good effect. he said that the oncologist wil need to go through with mum whether he feels that mum is strong enough physically to undergo chemo.
I feel that I understand what he is saying, basically that the cholangiocarcinoma will not be removed, therefore it is only a matter of time before it spreads, so therefore the decision needs to be made as to when to use the chemo,
Hi again,
had a chat with my mum today over the phone and she is feeling very positive and very strong, she has decided to give whatever it takes to give her the best chance at fighting/keeping it at bay for as long as possible and wants to be positive along the way, mum knows surgery isn’t an option, this is a weight off my shoulders that mum is starting off this journey with a good fighting spirit but at the same time being realistic,im sure we have a long way to go and there are going to be big ups and equally big downs , but with her family and friends she wont be alone in this.
had some good news as well, we have our first oncologist appointment on Monday, I am really pleased how quick this has been arranged, our gp has said that this particular oncologist-dr david fyfe has a very good reputation locally and is very thorough and very honest. at this stage, I think we are goig to see how the first meeting goes with the oncologist before deciding on second opinions as mums thoughts at the moment are just get stuck into treating it, we are behind her 100 percent, il be making sure that the oncologist answers the questions as well as he can and will tell mum if I feel that she may benefit from a second opinion,
I am off work now and will spend some time tomorrow writing down my questions for the oncologist and will travel back on Thursday.
thank you everyone for posting the links- it certainly is a comfort to have knowledge of help that’s available.
thank you so much everyone, your kind words have touched me and its a great comfort especially when I am not with my family at the moment, I have had friends on the phone so that has been helpful to talk it through with them.
I have decided to give my mum and dad some private time together and wil make plans to visit at the end of the week, work have been great and said there is no pressure to rush back, I am going to stay next week so that I can meet with the oncologist.
Im not sure my mum will want to go through further testing as she has been through so much recently and the gp had basically advised that the second opinion will mostl likely yield what we know already as the Blackburn team have agreed with two teams already on their thoughts re diagnosis.Whilst she is strong, I don’t know whether her energy will be best spent undergoing treatment and follow up work if she feels that’s right for her.
what I am concerned about is that they cannot grade/stage it and so im not sure whether they are ruling out lots of other treatments based on that,
I am guessing that the whipples procedure that was talked about but has been refused by the team due to her ill health suggests that they know that the disease has spread beyond the bile duct or else they wouldn’t mention such procedure?
I have heard about a bile duct resection but am I right in thinking that this is only for cancers within the duct and surely the team would have thought of that and surely that procedure is less invasive and risky than the whipples procedure?
I think the way I am getting through this early stage is to gather lots of info and use it positivey to guide my meeting next week so I can be absolutely sure they are not giving up hope on mum and are giving her the best treatment plan they ccan given the circumstances we face.
thank you again everyone
hello all,
I have had the call we have all been dreading, today, the gp told me that my mum has been diagnosed with cholangioacarinoma in the bile duct. they have said that due to mum having COPD and other existing health conditions they will not consider her for the whipples procedure but they can offer chemotherapy.
I am in shock but at the same time knew this was coming,the gp did say that all 3 teams including the specialist team in Blackburn agreed that it was a cholangiocarcinoma due to the length of the stricture and other key featurs and due to her tumour markers, howevever the brushings revealed inconclusive findings, The gp said that all 3 teams feel that it is almost certainly bile duct cancer due and feel that further testing would only confirm this.
I have a lot of questions brimming round my head, is it right that they can make this diagnosis without the brushings? if they do more tests and confirm that it definitely is, it wont change their decision to operate as both teams said the surgery would put mum at an unacceptable risk,, is there any less invasive surgery such as a bile duct resection?, they didn’t even tell me whether the cancer had spread, shouldn’t they be doing further testing to establish this?am I right in thinking that once the ble duct cancer is in the bile duct causing strictures, then it is already quite advanced? the gp said that chemo can be offered but said that it may not change things greatly, if mum was only offered chemo alone, would this be an effective treatment alone or is it really only a palliative keep the symptoms at bay option?
I feel as though they have already given up on my mum, but it could just be me at the moment, maybe because we have just been given bits of info
Im sorry for all these questions, I am over 7 hours away from my family and want to try and begin to get my thoughts in order as we have a meeting with an oncologist next week and want to be prepared to ask the right questions
