Mum newly diagnosed
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Hi Emma,
So sorry to hear about what you are going through. My brother has CC. We are from Glasgow but went through to Edinburgh for a second opinion. Professor Wigmore was very helpful. I think it would be helpful to get another opinion. Maybe you have already done that? It is all so confusing at the beginning. You need as much information as you can get. Read about it, ask questions, and write everything down. Ask them to explain fully the options available. If you are not happy with something tell them. I do not like confrontation but we have had to be very pushy and assertive. It is already a very stressful situation for you and your mum but if you do not understand what is happening and the decisions that are being made, it makes an already difficult situation so much worst.
Take care,
Lorraine xxx
Hi Emma,
Did you get a chance to speak with your mum about seeking a second opinion on everything? I heard back from Helen at AMMF today, and she and I both think that the best person for your mum to seek an opinion from should she wish to do that would be Prof Wigmore in Edinburgh. He is a surgeon and is very experienced in treating patients with CC. I heard him talk at a conference here in Dundee and he is very knowledgeable indeed.
These are Professor Wigmore’s contact details for the referral:
Professor Stephen Wigmore
Professor of Transplantation Surgery and Honorary Consultant Surgeon
Hepatobiliary-Pancreatic Surgical Services and Edinburgh Transplant Unit
Royal Infirmary of Edinburgh
Work: 0131 242 3662 (Gayle Stirling, Clinical Secretary)
Fax: 0131 242 3617
Email: s.wigmore@ed.ac.ukhttp://www.ed.ac.uk/schools-departments/surgery/staff/surgical-profiles/stephen-wigmore
If it were me then I would certainly be wanting to seek a second opinion from him to either look at the possibility of trying surgery or for someone like him to rule it out if not possible. This is a very tough disease to diagnose and treat etc and your mum really needs to seek opinions from people who are experienced in all matters about CC. I can’t stress that enough and I am sure that everyone here on the site would agree with me on this.
As to getting the referral to Prof Wigmore, your mums GP should be able to arrange this or if not then your mums consultant at the VIctoria will do it. If any of them say they can’t or won’t make that referral then fight them every way for this, do NOT take no for an answer on this!!
I do hope that some of that is of help to you Emma and if I can help any more then please just let me know and I will see what I can do. Please let us know how everything goes as well.
My best wishes to you and your mum,
Gavin
Hi Emma,
So glad that you are feeling a bit better now that you have talked with us. I know from my own experiences that coming here after my dad was diagnosed helped me so much, and I know as well that everyone will help you too and I am sure that you will feel better too in coming here so please keep coming back. I always found it better to be around people who knew what I was going through and we so know what you are going through right now.
It sounds like your mum is not really up to talking about things at the moment and I can understand that, that is so normal for many people. All I can suggest about that is to just keep being there for her. She will rely on you for much and I know that that will be tough for you. But you seem very strong to me and have reached out here looking for help and answers if possible so that tells me you are strong. Hoping that others will be able to chime in with suggestions as to how to handle things with your mum as well.
Your mums GP will be of great help as well right now. What I would do is try and get your mum to see her gp as soon as she can. The gp will be able to make the referral to Macmillan on your mums behalf so that you can get their services, you don’t have to do anything there just get the gp to do it. The gp will also be able to help with the burping that your mum is doing now. This could be down to a variety of reasons and I would speak with the gp about this as there are things that hopefully can be done for this.
I contacted helen at AMMF tonight on your behalf so let’s wait to see what she says about a referral to Edinburgh. I will get back to you on this as soon as I hear back from Helen. The gp can also make the referral to Edinburg on your mums behalf but we can deal with that later.
As to the meeting with the oncologist. This will be to discuss the option of doing chemotherapy for your mum and you will learn much more about the options of chemo at that meeting. Do not be afraid to ask questions of the onc and I would suggest that you take a pad and pen to the meeting and write down as much as possible about what is said there. Also, prepare any questions in advance for this meeting if you can.
Here is a link to the Macmillan nurses and how they can help –
http://www.macmillan.org.uk/information-and-support/coping/getting-support/macmillan-nurses
Here at the site we also have a psychologist Dr Giles who has helped many of our members deal with many things, such as how to handle the diagnosis, how to talk about things etc. You can post a question to him through this link here and he may be able to help you with regards to speaking to your mum about things. He can’t give medical advice related to the cancer but he will be able to help you deal with everything and maybe that is something that will be of use to you?
http://cholangiocarcinoma.org/for-patients/ask-dr-giles/
I know this is a lot to take in Emma but do not give up hope. Stay strong and keep coming back here.
My best wishes to you and your mum,
Gavin
Hi thank you everyone for getting back to me,
Gavin I feel better that there is someone to talk to that has been in the same situation as I’m going through right now, I will speak to my mum about edinburgh, but my mum still won’t open up proper and talk to me about the cancer she crys then when I asked her about talking to me she tells me not to dwell on it, I’m stuck in a rut to be honest. The hospital has never mentioned anything about Macmillan or where we go next although my mum does have a hospital app in dunfermline on Thursday afternoon, Who would I ask for an opinion about Edinburgh?
Can I ask, this is the first app we have had since she was diagnosed, do you have an idea on what will be discussed at this app at the oncology clinic? My mum has also started to burp all the time is this to do with the cancer?Thank you again for taking the time to reply to me, Emma.
I forgot to ask Emma, what is your mums name? If you don’t want to post her name here then please could you send me it off board. Just click on my name then you can send me it off board if that is what you want. Just so I can pass it onto Helen at AMMF later.
Thanks,
Gavin
Hi Emma,
Welcome to the site. Sorry that you had to find us but glad that you have joined us as you are in the best place for support and help and will get a load of each from everyone here. Like Lainy has said to you, I am from Dundee and my dad was diagnosed and treated here at Ninewells back in 08 and 09. I too am an only child and I so know everything that you are experiencing right now.
First off let me say that the treatment that your mum has had with that nurse at the Victoria is shocking to say the least, that is no way to treat anyone. I would think that the Victoria being a smaller hospital in Kirkcaldy that they would not have much experience in dealing with patients with CC so I would suggest trying to seek an opinion elsewhere where they would know much more about CC. How do you think your mum would feel about travelling to Edinburgh? Reason I ask is that I would probably be looking to get your mum seen through there as I know the team in Edinburgh have much experience in dealing with CC. NInewells is another option but the team in Edinbugh are very good.
Speak to your mum about this and let us know how she feels about that. It may be the case of course that surgery is not an option and that was the case for my dad as well, and that has happened to many others also. But, that does not mean that there are not other options re treatments.
Does your mum have the services of a Macmillan nurse? If not then I would strongly recommend that she gets one asap as they are a godsend and will be of much help to both you and your mum. My dad was offered their services after his diagnosis and they helped us a lot. Your mum is now entitled to one after her diagnosis and the hospital should have mentioned this to you. If your mum wants one then her gp will be able to make the referal to Macmillan on her behalf. Once again, I strongly recommend that she get one.
I know that right now your head will be all over the place with everything that is happening, that is very common. But you are not alone in this now, we are here for you and will help as best as we can. You have so done the right thing in seeking further help, so please keep coming back here. Speak to your mum about Edinburgh and see what she says and let us know. I will contact Helen at AMMF tonight on your mums behalf as well. We are here for you.
My best wishes to you and your mum,
Gavin
I’m so sorry you are going through this with your mom. I am an only child too and my mom has CC. I can completely understand how scary it is for you. I will say special prayers/good thoughts/sending love your way and I hope that when you get your second opinion the doctors and nurses give you good information and treat you and your mom with respect!!!
Emma…..I hope for things to change for the better soon. Stay strong. You may also want to take a look at the AMMF Cholangiocarcinoma Charity and the resources it provides for UK patients.
http://www.ammf.org.uk/
Hugs,
MarionDear Emma, your Mum’s treatment, except for the stenting, is not acceptable and same for the way this was presented to you. Please see about getting her to a Hospital that treats CC. If everyone on our site had been treated like that we would have no site! You have a right to feel the way you do and I swear to you that if presented to the right Doctor and a good treatment begins, your fright will be taken over with fight. CC is a scare as it is let alone going where there is no support. Gavin should be on soon and can make some recommendations for you on where to go and get another opinion. Hang in and hang on!
Hi thanks for replying to me, she was being treated for jaundice at the victoria hospital Kirkcaldy, that’s where they put the metal stent in and later removed the drain as the stent was doing what it was ment to. We were asked to go in on march 17th which I went myself thinking she was going for an opp in edinburgh to put an internal drain into her liver which they had discussed with us the previous Tuesday to get rid of bile, but I went into the hospital and me and mum were taken into room and told that while putting drain in they had taken a biopsy which neither of us were told they were doing that(explains why mum was in so much pain after) and found she had cholangiocarcinoma and that it was a very rare cancer that has went to lymph nodes and basicly if they operated on it there is a chance surgery wouldn’t work as apparently they can open her up and not be able to do anything, when I asked more on the cancer the staff nurse in the room with us went and got a bit of paper and brought it back into the room and wrote it down on paper and told me to google the cancer and find out more info on it, which I think is horrendous , after a week after diagnosis she was aloud home again on the day of discharge she was in the day room, before I got her I went to staff base and it was the same staff nurse on the day with the paper I told her I had done some research and wanted to no if there was anything I needed to do all she said was the community dietician would be in touch with a referral from them in her discharge papers(which may I add the referral has not been made,nearly three weeks after discharge)and I asked how long she had left and she wouldn’t tell me just to let her enjoy what’s left I also asked her if inside or outside liver and she didn’t no and again told me to research I’m deeply frustrated as I do not no anything about it all I no is we got this devastating news about a cancer I didn’t no existed and basically been left to it, we have got a letter through to attend oncology on Thursday afternoon but dreading it as don’t no what to expect my whole life has been turned upside down in the space of weeks and when I’ve asked the doctors none of them to give me useful information. I haven’t even got a clue what stage it’s at but suppose it’s the worst stage with them saying let her enjoy what’s left , thank you again for replying to me and I’m grateful that I have found this page, thanks again, Emma.
Dear Emma, welcome to our great family but sorry you had to find us. The best thing I can tell you is to get a 2nd opinion ASAP. Have they told you what Stage Mum is at, where the CC is located and what do they suggest. It sounds to me like they have given up before they have begun and that is not what Doctors do. Where was she treated? We have had patients here who were advanced and with the proper treatments they are doing well. I know others will be along to help and please try to be very strong as strength and attitude will help you get through this journey. I know Gavin will want to know where she is being treated as he is from Dundee and can be of more help to you. Please let us know what transpires as we truly care and you are not alone anymore! Here are some sights you may want to look at:
Newly diagnosed:
http://cholangiocarcinoma.org/the-disease/newly-diagnosed/
Free complimentary Book or e-mail download:
http://cholangiocarcinoma.org/news/foundation-resources/
Biliary drainage – stent information card
http://cholangiocarcinoma.org/biliary-emergency-information-card/
Register for a CURE
The International Cholangiocarcinoma Registry
http://cholangiocarcinoma.org/professionals/research/patient-registry/Hi my names Emma,my mum was admitted to hospital on fen 16th with suspected gallstones after numerous blood work and scans also a drain was fitted for the jaundice along with a metal stent, she was diagnosed with this cancer(advanced) 3weeks ago which was an absolute shock as none of us even knew about this cancer they let her out two weeks ago basically to enjoy what she has left
I’m devastated I’m her only child and haven’t got a clue what to expect she still looks fine and still eats maybe not a lot like she used to but still good amount she’s only just turned 59, can anyone pleas give me some information about this cancer and how it takes over I’ve tried research on it and still don’t understand it fully thanks in advance, emma.
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