Can you possibly DM me please? I’m looking to pay for a private 2nd opinion and don’t know who to approach. I know you have liver mets so I’m very interested to know who you’ve paid to see privately. I’m ER+ PR- HER2- Totally resistant to endocrine therapy. 😳 liver mets only. Palbo, zoladex, letrozole combo failed me and in fact made mets much worse. Cape worked amazingly for 12 months. Mets are now widespread again. Too many for ablation or SIRT.
I’m waiting to hear if I can join an ATR trial targeting my ATM gene faults. If I can’t join the trial, I’ve no idea what my next steps will be. I’d like to arrange a second opinion now to give me the fullest picture of my options NHS and private.
Thank you very much Nicky for your advice x I meant to say, that I'm happy to pay for a private consultation. I think at least I would know that my hospital are giving me the best treatment they can, but there's always the possibility that there are other treatments available to me, which my hospital are not able to offer. When I asked about other options I was just told no and there wasn't really much discussion about it xx
Hi Stillhere, thank you so much for taking the time to reply to me, I really appreciate it. It's also good to know that you recommend The Royal Marsden. I hadn't thought of getting another opinion, I almost feel a bit guilty about doing it as my onc is very good, but my ex-husband spoke to his friend who is a consultant and he recommended that I definitely got one. I started chemo last week, but like you say, I can't help feeling that there might be other options as well xx
As stillhere has said you are entitled to a second opinion and I have had several, over the years, at The Marsden when I have wanted to confirm a treatment choice or find out what to have next. Plus of course they have trials if you are suitable for the trial criteria. I recently requested a second opinion but was told unless it is with a view to participating in one of their trials they are unable to see nhs patients (for a second opinion) as they don't have the clinic time to do so at present. As I am heavily treated for my SBC there's no trials at present I would be eligible for so wasn't able to get an appointment on the nhs. However I did pay for a private consultation with the oncologist who I have seen in the past and it was a great help.
It is quite likely they would see you as you've only had the chemo you are on (for mets) so I would think you would be eligible for one if not more of their trials. However the criteria for trials is often that the disease needs to be progressing.
I'd say it's worth a go and see if you can get an nhs referral, if not maybe pay for a private appointment?
Hi Jencat, my hospital is the Royal Marsden and I would ask for a second opinion with them in your shoes. There might easily be other treatment options which are more targeted as you have such a low tumour burden. They have a website which details how to request one. I believe that everyone is entitled to one but others may have more information. I can only recommend them highly. Good luck in your treatment xx
I've recently been diagnosed with SBC-onc said it's a local spread from my recurrent bc, not distant and it's one small bone met in my sternum-a small dot my consultant said. I'm now not having the planned mastectomy and have just had my first cycle of Carboplatin. I was told I might possibly be able to have the mastectomy if everything is stable in the future as I am in some pain and discomfort with the bc, but the chemo should help to sort it and no to op on sternum or radiotherapy. I'm thinking of seeing if I can have a 2nd opinion at The Royal Marsden to check that chemo is the only treatment. I wondered if anyone else has sought another opinion and if they found it worthwhile. Thank you x