Newly diagnosed

Dear

i am sorry to hear of your mums diagnosis, the early days can often be confusing as the doctors decide what is the best course of action for a individual patient. Once you have a clearer picture and your still not satisfied a second opinion is a perfectly reasonable course of action. Whether active treatment is offered will be based on many factors not just age but on the chances of extending life versus the risks of surgery and side effects of chemotherapy. I would recommend talking to your mums cancer nurse specialist to get a explanation of everything that had happened so far and possibly ask to speak to the palliative care team in the hospital to talk about what they can offer your mum should active treatment be ruled out. The main objective of the doctors is usually to provide the patient with the best quality of life regardless of prognosis not just overall survival.

Thankyou for your reply and advice. We have pushed for the oncologist to meet my mum next week, this was only because we wanted her to be able to have a discussion about the options sooner rather than later. She still hasn’t been allocated a cancer nurse, i think if this had happened we would have had more confidence about what is happening. I have been trying to help with benefit claim as mum qualifies under special rules, and staff on mums ward don’t know anything about it. Hopefully once mum has spoken to the oncologist this will help her to understand the options. So far it has just been the liver specialist. 

Dear 

if your mum qualifies for pip under ds1500 special rules she can get help applying via a Macmillan nurse which is how I got mine. My husband was also awarded carers allowance after I was awarded the full amount. I think your right to press the oncologist on your mother’s options, the sooner you know what your facing you can make firm decisions in her best interests. I would suggest you join the carers group as they are a good source of advice for people in your situation. Please feel free to add me as a friend and private message me once you know more and I can share my experiences of palliative care with you if that’s the road you end up going down.

Thankyou so much for your advice. I will look at the careers forum too. 

Hi there

can I ask how your mum was diagnosed
Did she have a biopsy?

I was diagnosed in July 2017 after undergoing a liver

resection at Leeds hospital They took 65 % of my liver and

gall bladder removed then 6 months chemo

The histology showed I had intrahepatic cholangiocarcinoma

or bile duct cancer.  I was told I would die without the op

so perhaps it would be an idea to see a liver specialist 

to see if your mum can have surgery

Hi Thankyou your message. My mum was diagnosed via blood tests, CT and MRI scans. They said there was no point in doing biopsies as the scans were so clear, plus she had quickly gone yellow, lost loads of weight etc, all the classic symptoms. When mum was admitted to hospital she went straight onto a liver ward and they have said that she isn’t suitable for surgery. I think that the cancer has spread from her bile ducts into her liver. Mum saw the oncologist today and they have said they can offer palliative chemotherapy. They have told us that they will continue to liaise with the closest specialist hospital, and that there is no point in seeking a second opinion as the ‘specialist’ hospital have already been consulted. We have tried to use the websites to guide us with what to ask and challenge but so far the hospital say that they are doing everything that is possible. My mum is physically feeling better over the last few days so the Stent must be working. We just need to hope that the chemo doesn’t cause too many problems. Thankyou for your reply. I appreciate you taking time to think about others, I hope you are doing ok. 

Hi Thankyou your message. My mum was diagnosed via blood tests, CT and MRI scans. They said there was no point in doing biopsies as the scans were so clear, plus she had quickly gone yellow, lost loads of weight etc, all the classic symptoms. When mum was admitted to hospital she went straight onto a liver ward and they have said that she isn’t suitable for surgery. I think that the cancer has spread from her bile ducts into her liver. Mum saw the oncologist today and they have said they can offer palliative chemotherapy. They have told us that they will continue to liaise with the closest specialist hospital, and that there is no point in seeking a second opinion as the ‘specialist’ hospital have already been consulted. We have tried to use the websites to guide us with what to ask and challenge but so far the hospital say that they are doing everything that is possible. My mum is physically feeling better over the last few days so the Stent must be working. We just need to hope that the chemo doesn’t cause too many problems. Thankyou for your reply. I appreciate you taking time to think about others, I hope you are doing ok. 

Desr DP1，

I have extraheptic cholangiocarcinoma for the last 2 and a half years and had a Whipple procedure 2 years ago.

i have had a very mixed bag of advice from oncologists. The worst being “you’ve only got a couple of months left so why bother with treatment?” That was in March 2019 and a year later I’m still here. I insisted on treatment, I’m on my third oncologist and I have challenging discussions about treatments and options. 

Bile duct cancer is still rare and some oncologists just run through the standard playbook. I’ve managed to get onto a drug trial at UCLH, although I have had to come off that recently due to my kidneys, but we’re discussing other trials and treatments. 

Everyone is different in terms of how the treatments affect them and their responses, but if there is one thing I have learnt is to be your own advocate and challenge doctors on their advice. Simple questions like “Why do you recommend that?”, “What about trials?’, “‘Why is radiotherapy a better option then chemo?” Any oncologist worth their salt will take time and go through the options as well as the pros & cons of each so you can make an informed decision. There are a few international self-help groups like this one where I can verify or ask about experiences that other people might have gone through. 

There is always hope.