Hello Sandhills, 

I am so sorry to hear about your daughter's fibrolamellar HCC diagnosis. What a stressful experience it must have been as it all happened while you were on holiday in Majorca and for her to have to spend time in hospital there. I am glad that you finally managed to get her home with all her Spanish medical records and scan results. It must have been a real shock for you to later find out that it is stage 4 and inoperable. It's so sad that she has lost so much weight but I am glad that it hasn't spread elsewhere. Poor Katie, it's a good idea to try and keep things as normal as possible for her at the moment and I hope that she is enjoying working 2 hours a day in the local primary school kitchen and that she can have as normal a life as possible. She seems to have a truly loving family who are there for her and I hope that your oncologist meeting on Thursday goes well. It's difficult sometimes to know what to do and what route to go for especially when dealing with a rare cancer. This is certainly something you will need to talk about in great depth at your appointment and I can understand why you might want to get a second opinion perhaps from a specialist in this type of cancer and you can find out more about getting a second opinion on this page. 

I hope that you will hear from other members of our community who have experience of this type of cancer before and that they will be along shortly to share their story with you. Don't hesitate to give our cancer nurses a ring for advice on this free number 0808 800 4040 - their helpline is open Monday to Friday from 9am to 5pm. 

I hope that your meeting on Thursday with the oncologist is productive - don't hesitate to write down any questions you might have to bring up at the appointment and I hope that they will be able to give you the best possible advice as to what will work best for Katie. 

We're thinking of you and Katie during this difficult time. Please do keep in touch if you can and let us know how things develop and what treatment plan might be the best option for Katie. 

Best wishes, 

Lucie, Cancer Chat Moderator

Many thanks for your reply Lucie.

We found out about the liver cancer whilst Katie was in hospital in Majorca but it wasn’t for another four months before it was confirmed by biopsy back here in the UK.

its been hard to accept that Katie has a rare liver cancer. Trying to get medical professionals to understand about Mosaic Down Syndrome was hard enough !

The big unknown in all of this is how long has she had this liver cancer ? Nobody knows.

I’ll post on here about how we go on. We have had regular meetings with our oncologist and we always try and stay positive. Here’s hoping the CT scan shows some improvement.

Thanks again. 

Lucie

Just thought I’d let you know how we went on today. The CT showed a slight reduction in the liver tumour since October. To offset that, there has been a slight increase in the tumour in the accompanying lymph node.

Fairly positive meeting and we finally found out why the cancer can’t be resectioned. There is also cancer in her adrenal gland and this is probably what caused the DVT in her leg and the clot in her lung 18 months ago in Majorca. That is under control with apixaban. Her weight has stabilised.

So it’s carry on with existing medicines and Katie can carry on her life as normal as she can. I understand the adrenal gland cancer is also rare which is quite something with her MDS and Fibrolamellar !