Hi, my husband was diagnosed with bile duct in September 21, originally the doctor said they can’t cure but then looking further into it they said it’s operable. So in November he went for surgery which wasn’t successful as they couldn’t remove the tumour. His since then had the right side oxygen stopped to his liver and 3 months of chemo to prep him for an operation again. So after all the scans and a 6 week break from chemo hopeful for surgery, we’ve just had the surgeon on phone saying the tumour has spread to the left side of the liver and operation is not an option anymore. We are completely devastated with this news. I was hoping if anyone can help with similar situation as I believe chemo is only option offered and we don’t know where to go who to speak to, what to expect.
Hi Amd67
i am being treated for bile duct cancer at Heartlands hospital . I am not happy with the wat I am being treated and was going to get a second opinion. Could you let me know who you saw? Just so I don’t contact them.
I have had four cycles of gem/cis which hasn’t shrunk tumour. I have now got to start my second round and have been told I can’t have anymore after that.
I have not heard about the gene test either.
I have only seen the oncologist once in this six months everything has been with phone call. I’m not happy just feel they don’t care. I don’t even know who my consultant is. Who are you under?
Thank you
Hi Jasper, am sorry for the way you’ve been treated at heartlands hospital I can for sure say they are not in any form specialist in this cancer. I would definitely ask your oncologist or gp for a referral either at the christe hospital Manchester or UCL hospital in London. My husband is being treated at QE hospital and unfortunately his tumour hasn’t shrunk either he is on his 6 cycle. His tumour was originally 3cm on right lobe when he was diagnosed in 08/2021. What we’ve been told it’s now grown to 6cm and another growth on the left lobe of 2cm. We haven’t been told what other options we have after the first line treatment stops. I really do feel your pain and understand how frustrating it all becomes but please don’t stop fighting this battle and do get that referral and ask for the gene testing which I wasn’t myself aware of but will push the oncologist for it at the next appointment.
keep in touch.
Hi Luls
im very interested in what you have been saying. Did you have to be referred by your consultant/oncologist or did you contact your second opinion yourself.
Could I be really cheeky and ask how much the operation cost. You said your mom had it done at the Royal Free hospital was it with Dr Davidson that you saw. Do you know how long your moms operation was? How long did she have to stay in hospital?
Many thanks
Hello Jasper,
I firstly contacted second opinion myself to ensure he’d be happy to give the second opinion, once agreed then they advised what they required from us, ie. Scans and clinical summary to be sent over. I then asked mums onchologist to send this over to them.
Yes it was Professor Brian Davidson. Although I found him through Royal Free Hospital, he also works under Wellington Hospital privately. So although we went private to save the 8-10 weeks wait on the NHS (which like I said wouldn’t have been guaranteed because of the multiple hospitals having to agree with various MDT meetings). It cost all in all around £28,000 (although still maybe more as she is still recovering with a bile drainage bag and still requires further consultations to see what is needed). We just didn’t want to take the risk as she was already without chemo for 10 weeks at that point and thankfully it didn’t grow in this time. To give you a breakdown, the operation itself and 7 nights stay were about £16,000. All the extras were the PET scan, 1 night intensive care (which is around £4000 a night and it’s always required as a minimum with an operation like this), anesthetiser cost, and also mum had to have her gallbladder removed as it was in the way for the operation so that was an additional cost. The operation was around 8 and a half hours. She had no complications during the surgery so is why she only needed the 1 night in intensive care. She was in hospital for 7 days in total, but I think they estimated 7-10 days. If you’re needed there any longer that’s an additional cost. Hope this helps because we had no idea when we agreed to it, as online it’s all quite out of date and we were thinking it could’ve been a lot higher, as some treatments alone are around 25k!
Sorry if you have said already, but have they said why it isn’t operable? I know mum needed a PET while body scan to ensure the cancer hadn’t spread outside the liver.
Hi Luls
My problem is I haven’t seen a consultant I only seen a oncologist. Who has not explained to me where my tumour is. I just get so fed up of having to ring asking questions and not getting any answers. I just feel let down by GPS who misdiagnosed me. I want to talk to someone who knows what they are doing. Al I’ve been told is it’s five centimetres. Needs to be shrunk as it’s by main blood vessels. Nothing else.
thank you so much for all your information x
Hi Jasper,
That explains it, we too only saw mums Oncologist up until 4 weeks ago where we had her first consultation with Professor Davidson. Up until this point we were told it was 100% in the main artery and he was then able to clarify it was not. Mum was diagnosed for 3 months with acid reflux last year so are still trying to build trust with local GP’s and hospitals. I hope you are able to arrange a consultation with someone who specialises in bile duct cancer. I’m glad I've helped in some little way and truly wish you all the best. Please let me know if you need anything else x
Hi Luls
i just want to let you know that I have an appointment with Professor Davidson on the 1st of Aug for a second opinion.
I saw my oncologist yesterday she was not very helpful in suggesting any different treatments for me. I now have a lump come up in my tummy so have to have a scan which is half way through my chemo . Been told they won’t scan me again after chemo has finished. Feel as though I am being left hanging.
I hope your mom is now on the road to recovery.
Best wishes
Jasper
Hi Jasper,
Im sorry to hear about your experience with your oncologist and that you have a lump come up on your tummy. I hope your tummy lump hasn’t caused you pain?
I would like to reconfirm that Professor Davidson is a surgeon, and that he wasn’t able to provide any details on chemo/alternative treatments to my Mum - we have just received new oncologist appointments next week at Royal Free Hospital where we have requested to be transferred over to, there are a minimum of 2 oncologists who deal with biliary cancers there. It has taken 5 weeks to sort this new referral out.
Potentially it may be worth while to look into an alternative oncologist for you?
Always here.
Luls
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2024 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 89 Albert Embankment, London SE1 7UQ. VAT no: 668265007