Unknown Primary Cancer

Hi egj1987 ,

My name is Keith and I’m one of the Cancer Information Nurse Specialist

Welcome to the online community We hope you are finding the support and information helpful.

This sounds like a really worrying time for  all of you right now.

In a situation like this it can cause so much uncertainty and frustration both from the medical team looking into this but also from the family and loved ones of the family member involved.

This stage is what we call the diagnostic phase. It can be frustrating and can generate so many unanswered questions both from the medical team as well as to all the individuals involved. However, this is a necessary process, a kneejerk reaction like moving hospitals and consultants at this point could potentially make more problems further down the line. So, I know it’s difficult to do but taking things one step at a time is the best option right now and keeping in close contact with the medical professionals involved..

Once the multi-disciplinary team  (MDT) carry out all the necessary investigations, they will come up with the best plan for the family member.

  In some situations, the primary can’t always be found but there are treatments to use in situations like this also. Looking at this information will explain this possible scenario in more detail .

Going private may be helpful. It would be worthwhile discussing this further with the current consultant in charge to see if it would be of any further benefit to go down the private route at this point. They may be able to offer private treatment themselves, or they may be able to suggest a consultant privately. Or alternatively looking at this link may be helpful.

Going private can be the best option in some situations. Wait times are more common  now with private consultations in the current climate, as more people do go down the private health care route due to possible extended waiting times under the NHS. This isn’t always the case especially when it comes to cancer treatments both privately and under the NHS. But waiting times can be affected by demand in all areas.

 In going private its like asking for a second opinion, it has its benefits, leaving no stone unturned so to speak, but also has its disadvantages as this may delay any potential treatments start time. As I have already said it would be beneficial to discuss the option of going private with the current NHS team first.

On this platform it can be difficult to have a two-way conversation and to fully understand what you are going through.

If you’d like further explanation or have any other questions, please feel free to recontact us. By giving us a give us a call or contact us via our web chat platform.

take care.

Keith, Cancer Information Nurse Specialist

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email.

Ref KM/KS

Thanks for your reply. 

By now, he's been told it's Bile Duct primary, and will be starting chemo and immuno this week. 

We are now researching grants etc. Is there anywhere where we could find a list of these?

Thanks!

Hello egj1987

My name is Adele.  I’m one of the Cancer Information Nurses on the Macmillan Support Line. I work alongside Keith.

I hope that having your family member diagnosed with a bile duct cancer and given a treatment start date, has reduced some of the uncertainty you were all experiencing, when you last made contact with us.

Having a cancer diagnosis can impact on every aspect of a person’s life, including their financial circumstances.  It is always worth exploring what financial support is available and looking into help with the cost of living and cancer.

Sometimes it can help to talk with a Macmillan Welfare Rights Advisor as they can give free, confidential advice about benefits and financial support.  They are available Monday to Friday from 8am to 8pm and Saturday and Sunday between 9am and 5pm on 0808 808 00 00.

People who have a low level of income and savings may also be eligible for a Macmillan Grant.  This is to help with the additional cost of a cancer diagnosis, for example paying for heating bills or travel to hospital appointments.  Our welfare rights team will be able to provide support with the application process.

Sometimes people are also able to get grants and loans from other local or national organisations.  This is variable, dependent on where people live and their circumstances.  More information is available on our website, here.

I hope this information is useful. Please don’t hesitate to get back in contact by email, webchat or phone, if you need further information or support.

The Macmillan Support Line offers practical, clinical, financial and emotional support. You can call us free from landlines and from most mobile phone networks on 0808 808 00 00, 7 days a week, 8am – 8pm.

Best wishes, Adele

Cancer Information Nurse Specialist 

Ref AON/SS