Topic: Help, My mum has nonresectable CC

I found out on Tuesday Jan 8th 2008  that my mum has bile duct cancer, and that it is not operable.

I was also told that chemo would not help, and that all that can be offered is palliative care.

I am in pieces, and am desperatley trying to find out what to do?

Do i just accept this and wait the 3 / 9 months she has been given to live, or is there anything i can do?

She is 77years, but very young at heart, and she is in denial about the whole thing..

Thanks

Andy / Manchester /UK

2 (edited by JeffG Thu, 10 Jan 2008 10:42:50)

Re: Help, My mum has nonresectable CC

Andy... So sorry to hear about your Mum.  Did the doctors explain why it is inoperable and why they are just considering pallative care?   You can always get a second opinion as sometimes there is a difference of opinion between doctors.  However if they show you CT Scans of the cancer and you can see for yourself how badly it has spread and why it is not operable it is a choice for her to make.  Andy it's hard hearing of a diagnosis of such.  There are others on this site from England who have sought out second opinions at a cancer Center in Leeds.  I don't recall the name, but it is a well known hospital and suppose to have the best of doctors experienced in this type of cancer.  Sorry I can't offer you more information , but I'm sure if our England members see your post they'll probally know the doctors name as well.  Wish you and your Mum the best possible.
God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Help, My mum has nonresectable CC

Hi Andy

I am very sorry to learn about your mother's condition, but you have certainly come to the right place to get advice and support.  You will soon understand that this is a very bad type of cancer, very difficult to treat and is very rare.  So much so that not many doctors or hospital staff have experience of it.  Most of the members on this site are based in the USA and so most of the medical facilities referred to are in the US.  There are very few of us from the UK so the medical people have even less experience there.

You do not say where your mother is being treated but it is important for you to establish if they have much experience of BDC.  The normal advice given to new members is to seek further opinions.  My suggestion would be to request your mother's case be referred to Professor Peter Lodge at St James University Hospital, Leeds.  He is acknowledged as being an experienced and aggressive surgeon in this field.

Personally, I think you should be aware that surgery is not often a suitable course and that other forms of treatment, eg chemotherapy, radiotherapy or ablation, may not be any more suitable but can accelerate the deterioration in the patient's condition.  Palliative chemotherapy is designed to make the patient more comfortable and may stabilise or even reduce the tumours.

All the best.

Ron

Re: Help, My mum has nonresectable CC

Hi Andy,

So very sorry to hear about your Mum.  It is so very hard to take this news when you love and care for someone so much. My sister was diagnosed back in late November early December she lives in Cheshire but is being treated in Mancheser's Christies hospital where she is under Dr Valle.  He does appear to know his stuff as I myself questioned why my sister was not being offered surgey as this is gives you the best possible chance of recovery.
He explained this to me quite well.

I do however find that consultants appear a bit too honest at times and can almost crush all hopes.  This I find quite frustrating and don't know whether it is just unique to UK Doctors and elsewhere in the world they have a different approach.  I firmly believe that you should never give up hope and remaining hopefull has an impact on your loved one.  I for one can't imagine giving up and I can't allow my sister to either she is only 42 with a young family.

Have you asked why they are offering no treatment, don't be afraid to ask questions. I wasn't happy with the initial course of treatment offered to my sister as I wanted it to be a positive we can make her better. I don't think it is that easy to simply change consultants in the uk.

Good luck try to remain strong

Jane UK

Re: Help, My mum has nonresectable CC

Sorry to hear about your Mom Andy.  The people on this site are great and share the latest on treaments.   Being your Mom is a young 77, she may definitely have more options than you were presented with.

It's hard on a caretaker when a loved one won't talk about it.  It's  a control thing and I don't mean it in a bad way.  Doctors pull the rug out from under someone with bad news, a time line, seemingly cancer is calling the shots.  It messes up the head.  Give your Mom time to adjust, gently suggest "just talking to another doctor", that way you give the power back to her.  Good mothers are strong and wise, trust her decisions.

After my Dad was diagnosed, I was the one watching for the Angel of Death, he went on living. Taught me good.  Day at a time.

There are amazing success stories on this site, don't count your Mom out yet, doctors go by stats.   You may have much more time with her (quality too) than first believed. Prayers for you both.  Good luck.

Kath

Re: Help, My mum has nonresectable CC

Hi Everyone,

Thanks so much for your replies.

Its a lonely place when all you have are questions and no answers.

My mum is being treated in Leeds, so i will be trying to get hold of the Peter Lodge, that Ron suggested.

I have also found out that Dr Valle in Christies is doing a clinical trial, and will at least try and get my mum on this if possible.

Its very frustrating as it feels like every second counts, and already a week has passed.

Thanks you all for helping me with this.

Andy

Re: Help, My mum has nonresectable CC

Hi Everyone,

Not great news on my mum,

Peter Lodge has said it is non operable, and there is literally nothing that can be done.

We also haven't been offered any chemo as they think it will be to hard on my mum, as she is 78, and has already a history of heart trouble and diabetes.

All we can do now is be there for her, and try and make the time she has left as good as possible.

I can't believe that only 6 weeks ago i was in town with her drinking coffee and talking about holidays, that seems a long time ago now.

Sorry if this is a sad message, but its how ifeel.

Thanks

Andy

Re: Help, My mum has nonresectable CC

Hello Andy,

I am sorry to hear about your mother. The dr's go by statistics and if they can't help, they let you know and give up quickly.  Its very discouraging.
My father was diagnosed June 05, however, I recently found out, he told my husband the dr's said his tumor makers were elevated about 8 years ago, but could not find the location of the cancer. It was after the 8 years, they find the location in the bile duct. So this show that it is a slow growing cancer. He tried chemo and alternative treatment there after and had a very good quality of like. He was positive.  I think that is an important factor in combating the effects of this cancer.

If you mother is feeling well and going on about her life as in denial as you referred to it- let her. I think a positive attitude will keep her going. My father did not sit home and wait to die as he mentioned. Let her 'live' and you just enjoy her and stay positive. Its hard to see our loved ones with such a 'grim' diagnoses. Just do what you can to help her cope.

Take care of yourself and know we are here for you and certainly understand what you are going through.

celoi- (Charlene) daughter of David Cook.

Re: Help, My mum has nonresectable CC

Second opinion on surgery
Second opinion on surgery
Second opinion on surgery

Search this site for Docs in UK and members with experience there.

Sorry to be abrupt.  I only have a minute.

-Peter

Re: Help, My mum has nonresectable CC

Hi Everyone,

Thanks for the replies celoi, and peter.

This was a second opinion, and it was much the same as the first.

The cancer is very high up, and is attached to several main portal veins from the liver, and is also in a lot of the liver.

They both said my mum would not survive the surgery as it would involve major arterial reconstruction, and also they didn't think they could get rid of all the cancer.

Am trying to see an oncologist at ST james hospital in Leeds to see if there is any treatment at all in terms of chemo, but non has been offered so far.

I am waiting for an appointment, and every day that goes by seems like an eternity. I can't really hassle them much more than i am already.

Thanks for listening.

Andy

Re: Help, My mum has nonresectable CC

Dear Andy

I am so sorry that the you received such disappointing news.  You are doing the right thing by speaking to the medical people and taking on board what they are advising.  Good luck with your inquiries into chemo treatments.  I believe that the UK health service is a bit like a small village in that everyone is very aware of who is doing what in their particular field.  So keep asking about different treatments.  The biggest problem we have is getting treatments that may not yet be fully approved because of budget restraints.

All the best

Ron

Re: Help, My mum has nonresectable CC

This is a message to JeffG, Ron Smith, Janecw, Kath, celoi, & Peter.

My mum died a few months ago now after 10 months of her cancer.

Myself and my 2 brothers were with her, and although she suffered a lot through the last few months, she passed away with great dignity and courage.

We managed to look after her at home, and she died in her own bed, in the house she loved, as we had promised her we would.

Thank you for the help and advise you gave me in my time of need.

It really was a great help.

Her last words were

" i was so lucky to have such wonderful sons".

Thank you all, and i hope that you are all ok.

I admire you more than words could ever say.

Andy

Re: Help, My mum has nonresectable CC

Hi Andy,
I am just reading your posts for the first time, and I just want to tell you I am sorry for your loss. You seem like  wonderful loving son and your moms final words were a great reflection on you and your brothers, who clearly loved her very much.
Peace and Prayer
Barbara

The  Lord is my shephard

Re: Help, My mum has nonresectable CC

Andy,

I too am reading your posts for the first time. I am so sorry to hear that your Mom lost her battle with this horrid disease.  She is at peace & no longer in pain. Remember that she will always be with you in your heart & memories. You and your brothers are in my thoughts & prayers.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Help, My mum has nonresectable CC

Andy

I am very sorry to read about your mother.  I hope you can console yourself with the fact that you had your her with you for a few extra months and that you did everything you could for her.

Kind regards
Ron

Re: Help, My mum has nonresectable CC

Dear Andy, we are so very sorry to read about your Mum. She was fortunate to have you with her on this terrible journey and now she is at peace with no pain. She must have been a wonderful mother all the way and to say what she did at the end showed that the mother in her came before anything else. She will forever be in your hearts and memories. Our prayers to you and your family.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Help, My mum has nonresectable CC

Andy,
I am so sorry for your loss. What a beautiful thing for her to tell you. Her passing sounded peaceful and that is really the only thing we can all hope for. I pray that you remember your mother the way she was before cc.

My thoughts to you and your family.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Help, My mum has nonresectable CC

Andy,

I am sorry for your loss, your mother had a lot to be proud of.

Patty

Re: Help, My mum has nonresectable CC

Andy:  Your mom had 3 wonderful sons who loved her and were there for her.  Bless you all.

Marjo

Re: Help, My mum has nonresectable CC

Dear Andy  I also am sorry for all you have been through
                                                  Janet

21 (edited by daniellemarg Sun, 12 Apr 2009 17:22:46)

Re: Help, My mum has nonresectable CC

Dear Andy,
You and your family sound like a loving and strong group of people and your Mum had a lot to proud of. I am so, so sorry for your loss. She will always be with you and your brothers in your hearts.
Danielle