Distant metastases

Sure, of course. While our NHS team were comfortable with us obtaining a 2nd opinion, they didn’t agree with the more optimistic outlook of our 2nd opinion (relating to the oligometastatic presentation I mentioned previously). However, they agreed with the treatment plan suggested and got on with it.

Getting a 2nd opinion can feel uncomfortable depending on your team and how you are feeling. If you have someone that can advocate for you in meetings that helps a lot but if you don’t, your local Maggies or Macmillan can offer advice.

In terms of how to get a 2nd opinion, you can contact oncologists directly to ask for them to review your case, via your GP or your NHS team. 

We were able to use private healthcare through my husband’s job to obtain a second opinion. So I asked them to search for specialists that were appropriate to our case. Timing wise, getting a consultation for private second opinion took 3 working days and within a week of that the treatment had started through the NHS.

The benefit of the new research centre at the Marsden is there is now a central place who specialise in Head and Neck cancer recurrence. This wasn’t available to us 4 years ago and would’ve been such a help as I wouldn’t have had to search for an appropriate place to obtain a 2nd opinion. As you’ve suggested, highlighting the centre to your oncologist sounds like a good plan and even asking to be referred to them should be relatively straightforward.

I suppose the main messages are don’t be afraid to get a 2nd or even 3rd opinion, there are many routes to obtain one and various teams/orgs who can help you organise. If you would like more details of who we spoke to etc just let me know.

Jess. Who you talked to would be useful to a lot of us here. Perhaps you could share? 

Hi Jess,

Thank you for your response. I have asked my oncologist about wanting a referral and he said he would arrange this with The Royal Marsden. I am sure he will arrange this, but does the patient get notified of this referral?

In any case, would you please share more details of who you spoke with and maybe the other routes to obtain 2nd/3rd opinions? Thanks so much

That’s brilliant news about your oncologist referring you :-) I’m not sure about whether you’ll be notified as everywhere seems to do things differently.

My strategy has always been to find out the medical secretary’s number and call direct to find out the status of scans, appointments etc. I’ve had a look on the Marsden’s website and found a number for a Central Referrals team - so it could be worth phoning and asking whether they’ve received your referral and keep phoning till they do. The number is: 0800 731 2325 - I just checked the number works and the recorded message says they are open Mon-Fri 9am - 5pm.

The private centre where our oncologist is based is noted below:

LOC Leaders in Oncology Care
95 Harley Street
London W1G 6AF
www.theloc.com

One of the Head and Neck Oncologists working at the LOC is also on the team at the Marsden, Prof Chris Nutting. We saw Dr Amen Sibtain. So whichever way you go, you’ll be in good hands.

I’ve sent you a friend request so you can talk to me anytime you need any more detail.

Hi there, my father has stage 4 tonsil cancer which has metastasised to his lymph nodes in his chest…but nowhere else. It sounds possibly similar to the oligometastatic cancer you described in your post. We have only been offered palliative systemic immunotherapy so far. Can I ask where you went for treatment? I feel as though we should get a second opinion on his treatment plan 

MC2 Read through the whole thread. Jess has written that her husband was seen at the Marsden and privately and has given some links and phone numbers

Hello, I’m very sorry to hear that your father and family are going through this very difficult period. Our second opinion was obtained via a private healthcare consultation and I have outlined who we saw including contact details plus advice on obtaining second opinions in the thread, so it’s probably easier to find the detail there. Take care and I wish your father the best with his treatment.

Hi Jess, sorry it's been a while since we last communicated. I did get a second opinion at The Royal Marsden and we saw Prof Harrington the first time and one his colleagues after that. They re-assured me and agreed with my local hospital treatment. Unfortunately the immunotherapy did not work for me, and we are now looking at SABR treatment. Do you know anything about this?

Thanks, Niku

Hi Niku, I’m sorry the immunotherapy hasn’t worked for you. I don’t have experience of SABR, my husband had a different type of radiotherapy (IMRT which is the standard first line treatment most people on this forum will get) to his primary tumour and lymph nodes in his throat and neck only. SABR I believe is much more focused radiation and I’ve read of people having good success with it. I really hope it works well for you.