September 26, 2009 at 2:06 pm #31614gavinModerator
Welcome to the site, although I am sorry that you have to be here and that you are having so much trouble in getting your mum some help. I am also in the UK, in Scotland, my dad was diagnosed last year and also has a stent inserted. Has your mums doctor even talked with you both about any future treatment options when she does get stronger? I agree with Lainey and find this a bit strange that you have not at the very least been given more information on your mums treatment.
I also agree that you should look to get another opinion here.
When you say your mum goes to hospice, is this run by the Mamillan organisation and is it a day care centre? The reason that I ask is that my dad goes to Macmillan day care twice a week and gets all manner of help there, but no actual treatment of any sort, as that is carried out at his hospital. When your mum was diagnosed, was she offered the services of a Macmillan nurse? My dad has one and she has proven to be invaluable with all manner of help and support at home. They have a phone line where you can talk with someone for support and ask questions.
Personally what I would do if I was in your shoes is first thing Monday morning, get your mum to make an appointment with her GP and try to see him/her that day. Tell the GP your concerns and lack of information coming from the hospital and ask to be refered to a specialist who deals with CC patients. Katie has given you some suggestions as to where you could go so perhaps that is something to talk about with your mums GP.
Please come back and let us know what happens.
Good luck and my best wishes to you and your mum.
GavinSeptember 26, 2009 at 11:38 am #31613magicParticipant
So sorry for all you new members are struggling with.Because we are all over the world and all different health systems we dont know the ropes but I think your own doctor,GP as we call it here should be able to organize these referrals for you or discuss options,I think lean on them a bit JanetSeptember 26, 2009 at 11:32 am #31612
Call the doctors office, they will guide you where you need to be. You want copies of her tests and diagnosis ASAP. In the meantime ask our UK Family on this site for suggestions as to who to go to for a second opinion . Good Luck!!September 26, 2009 at 10:54 am #31611
mum isn’t to sure how to get a second opinion. should she just asked the doctor or the nurse hospice?September 26, 2009 at 7:58 am #31610katieloumattMember
I see from your location that you are in the North West. Why don’t you ask if your Mum’s doctor could refer your Mum for a second opinion to Leeds where there is a fine liver unit. Or how about to Christie hopsital in Manchester, which again isn’t far for you to travel.
As previous posters on this board have said because this cancer is so very rare a second opinion may well be helpful .
Thinking of you
KatieSeptember 26, 2009 at 6:24 am #31609lalupesParticipant
Welcome, melonhead; you don’t sound at all stupid – just in lots of pain for yourself & your soulmate.
I understand that pain – my sister has always been there for me & it’s so frightening to think of losing her.
Please come back & tell us more about you; there are lots of people on here with much, much more information than I have.
JuliaSeptember 26, 2009 at 4:40 am #31608
We are very sorry you are going through this terrible time. We really need some more information. What has been the diagnosis? How old is the patient? Where are you? Have any tests been run? Please give us some information and we will try to help.September 26, 2009 at 4:22 am #31607
Anyone out ther with massive swelling of legs, testicals, and belly? In hospital now, and looking for a general surgeon to do a laproscopy to really see what’s up. Caancer Drs. don’t seem to have a clue..Juast treating the pain.September 26, 2009 at 4:18 am #31606
I’m so stupid, and I’m not a computer person, but I’m trying. My soul mate is dying,September 26, 2009 at 4:17 am #31605
This disease is so horrid, God bless all of you out there fighting it with us. My prayers are with you all.September 25, 2009 at 12:59 pm #31604
Thanks for all the information as it really helps. I have never heard the expression that all liver cancer is stage 3. I am so sorry to say this but to me, something is terribly wrong that nothing is being done for her. I would gather all her information and get her to another doctor post haste. Maybe you should ask this guy (notice I didn’t say doctor) how many CC patients he has treated. No doctor should ever give up on Stage 3 CC Cancer.
There have been many on this Board still around after a lengthy time. I implore you to get her to another doctor quickly as this CC monster is pretty fast in it’s attack. Please keep us apprised in how mum is doing.September 25, 2009 at 9:05 am #31603
How old is your mum? mum is 52
How advanced is her cancer? we aren’t sure I asked the doctor a few weeks back and was told that it was stage 3. he then added that all liver cancer is stage 3.
Does she have other health problems? she has arthritus as well and a chest infection.
What is your location? uk, england, in skem
Where is your mum being treated? she only goes to a hopsice twice a week now. when she was first diagnosed she stayed in fazakerley and it was here were she got her stunt. but she hasn’t been treated here other than the stunt thing.
has she gotten a secound opinion? no she hasn’t but I have asked her to get one.
hope this will help.September 24, 2009 at 3:57 am #31602tiapattyMember
Hello and welcome to our little family,
I think it will be easier to offer advice if we have some more information. How old is your mum? How advanced is her cancer? Does she have other health problems? What is your location? Where is your mum being treated? Also, has she gotten a second opinion?
PattySeptember 23, 2009 at 7:34 pm #31601devoncatParticipant
I dont have many suggestions except to make sure she is eating enough and get her walking around to build up strength.I have started swimming and it has been great for me.
On the wee issue, it could be she has a bladder or urinary tract infection.
KrisSeptember 23, 2009 at 12:52 pm #2724
my mum was told she had cholangiocarcinoma over 6 months ago and all the doctors have done is even her pain relief and a shunt (think thats how you spell it). The doctors keep tell mum she is getting stronger but need to be stronger before they will do any treatment. I’ve tried to ask how she can become stronger but not got an answer off them yet. I can see this is getting worster for mum but not sure what we can do for her. hope someone on here can give us some help.
P.S on a side note when mum needs a wee she is finding that she can’t hold it in. is this normal or a bad sign?
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