Trouble with inoperable diagnosis and referral

My sister has been diagnosed inoperable. She was diagnosed with oesophagus cancer in january this year and then 6 weeks later she was told after a laparoscopy that it had spread into the stomach. then 2 weeks later that she had 12 to 18 months to live. the cancer is inoperable.

My sister is too quiet to complain but the rest of the family are getting more and more annoyed. We have a link to a cancer specialist in germany and the nhs team are NOT passing the details for a second opinion. Surely we are entitled to this. For all we know, the lack of action between January and now has enabled the cancer to spread. So, how do we get this second opinion to happen.

Secondly in europe and the USA surgeons are creating new stomachs a oesophagus, stage 4 cancers are getting 10 to 20 years extra life. We cannot acceept the diagnosis. It is patently ridiculous.

Finally, i am aware that there are 10 advanced cancer centres in the UK. Again no referral. How do we get a referral ? i would be grateful for any help in solving these problems.

  •  

    Hi Plop,

    A very warm welcome to Cancer Chat.

    I am so sorry to read about your sister's diagnosis. and that the NHS is not passing on her details to the cancer specialist in Germany. I am not sure exactly what the legal position is, as I am not a medic, just another cancer warrrior.

    As far as I know, everyone who atttends the NHS is entitled to get a copy of their medical notes upon request. I understand that there are some hoops to jump through and, that it can take some time, but your sister should be able to get hold of them.

    I don't know what the position is with the advanced cancer centres in the UK, but why not talk to the nurses here about this? You can reach them on 0808 800 4040 and your calls are free from any UK landline. They are available Mon - Fri, from 9.00am - 5.00pm.

    I do hope that you find a solution to this problem and that your sister gets some extra time from visiting the consultant in Germany.

    Do please let us know how you get on. We are always here for you.

    Kind regards,

    Jolamine