Distant metastases

Hello Jess , sorry to hear that you husband is going through this sitituation,as you say not many of us have experience this situation including me so im afraid i cannot offer any advice , i wish i could . All i can say is that i hope they can get to the bottom of this plan surgery or a course of treatment . Hopefully someone will also come along with some useful advice , wishing you both all the very best for the future , please let us know how you get on . Stay positive and take care . 

                                                                                        Chris xx

Thank you, Chris - much appreciated and well done for all the support you’ve given to this forum. 

x

Hi Jess18

I was treated for a nasopharyngeal cancer in 2020, and now have metastases to the liver. It was a shock to our NHS team too, and I have undergone GemCarbo chemo to help reduce the liver tumours. Unfortunately it has now also spread to some liver lymph nodes.

Please may I ask how your husband is now and what your NHS teams treatment plan was for him?

Thanks, Niku

Niku Jess last posted in April 2019 and might not actually be active here any more. She is still a member so hopefully she might notice an email notification. Fingers crossed. 

Hi Niku, Thanks for your message and I’m sorry it’s under the circumstances you are facing. 

My husband had a single tumour in his liver, which is a less common way of cancer spreading and can be referred to as oligometastatic due it being a limited spread. It can mean prognosis is better, but there is still heavy debate about that by oncologists.

Once we obtained a 2nd opinion from a private oncologist and liver surgeon it was agreed that based on the size and location of the liver tumour, it would be amenable to surgery. 

So his treatment was 2 rounds of Cisplatin + 5FU, then keyhole surgery to remove the liver tumour and finally 6 weeks of standard Chemo-Radiotherapy to treat his primary cancer.

Being such an exceptional case nobody could really predict what might happen as a result of his treatment, but since finishing in March 2019 his scans have been clear of cancer and we are currently waiting for the results of his latest set of scans.  

His treatment was nearly 4 years ago though and treatment regimes change regularly. If surgery was not an option for us, radiation to the liver was next on the list. Since then there has been more research on the effect of radiation on metastases and also in combination with immunotherapy - so there may be trials available. By phoning Macmillan they can support in how to find available trials, as should your NHS team.

Last year a specialist research centre on recurrent Head and Neck cancer was set up at The Royal Marsden in London. I’ve copied a link below that gives more details and notice there is a ‘get in touch’ section at the end of this page that gives the ability to email the team. The names of the team are also listed so you could ask your NHS team or GP to approach them directly too if you’d prefer not to: https://www.royalmarsden.nhs.uk/IReC.

Happy to help with anything else I can and wishing you all the best with your journey. 

Jess. Thank you so much for finding the time to reply. I was hoping your email notifications were still on. Wonderful news that your husband is well too. 

Lovely to hear from you Jess18, as Dani said, thanks for replying to the above post and your husband's experiences, nice to know all is going well for you both, best wishes, take care.

                                                                         Chris x

Hi Jess,

Yes, thank you so much for responding.

So happy to hear your husband has been in remission for 4 years now, and my very best wishes that the latest scans continue to be completely clear.

May I ask where, how and timings for obtaining your second opinion and did this complicate the relationship with your original oncologist?

Thank you also for the link to the details of the specialist centre at The Royal Marsden. I will attempt to understand it but will definitely alert my current oncologist to this too.

Thanks again.

Thanks Dani, fortunately as you know Jess has very kindly responded. 

Also, thanks for the link to your cancer, I plan to read it later today

NPCdiag said:

May I ask where, how and timings for obtaining your second opinion and did this complicate the relationship with your original oncologist?

Please don’t worry about upsetting your doctor. They do second opinions all the time and are well used to the procedure