Its about my dad. He’s 73 if that makes any difference. He had malignant melanoma 16 years ago that was removed and more skin taken. We thought that was done with . Until 2 weeks ago in A&E they found cancer in his brain they think came from somewhere else. They think melanoma . I wrote a long post but my battery went and I lost it. I’ll try to post more information later but for now anyone in the UK (preferably) or Europe with brain mets and other secondary areas in organs/body have any good news regarding treatments? All the people I read about online with good experiences of responses to treatment and no evidence of disease and living several years later seem to be in the USA, and some Australia . My dad has multiple small lesions/tumours in different areas of his brain. I don’t know why, but i’m feeling from what I’m reading/seeing online that the UK doesn’t treat this well. They don’t seem to want to do radiation/SRS on multiple brain mets , even though in the USA they do. I can’t even get a straight answer about what my dad has going on in his body, on one hand they say he has multiple areas/organs with secondaries, on the other hand the same doctor says they can’t tell from CT scan what is cancer and what isnt, could be cyst on liver etc. This is the hospital ward doctor saying this, not cancer doctor. Haven’t spoken to any oncologist yet. Its been just over 2 weeks since diagnosis in A&E. He has been seen by people from different departments, he has a multidisciplinary team who meet to talk about him. We’ve just been given the name of a medical oncologist from a nearby hospital who is involved in his care. Her specialist areas are melanoma , acute oncology and unknown primary. Haven’t spoken to her yet. So confused with different things we’ve been told, even by the same people. It doesn’t sound good tbh. I want the best for my dad obviously and I just don’t know what to do or where to go. Maybe should try USA if we can afford it. All the good outcomes seem to be from there. He is having biopsy today/tomorrow on something in his abdomen. Can anyone in UK give me names of doctors or hospitals in UK that are good with treating this, and have outcomes like we read about from our friends in America, surviving still after a year, two, and more, even 6/7? Asked ward Dr about treatment he said he isn’t oncologist So he doesn’t know but not surgery, I asked about SRS, he seemed to just hear the word surgery and say “no” too invasive, I said radiation, my mum asked immunotherapy? I don’t know if he heard her or me properly, he can’t have surely because he seemed to say no about that too, “too invasive”. He mentioned chemo. I thought that didn’t work for melanoma/across blood/brain barrier? Anyway this doctor is a doctor of geriatric medicine, not cancer, he said himself he doesn’t know. In that case I wish he hadn’t said anything. Though I have seen elsewhere that the UK refuses to do SRS on people with multiple brain mets. Though there was a man from the UK in a Facebook group who had gamma knife or cyber knife (can’t remember) on 14 mets, plus immunotherapy. Sadly he seems to have died the next year. There was a man in the USA in Connecticut I think who had SRS on 98 mets! plus immunotherapy and still living 5 years later according to video on youtube. Is it possible to have good results without radiation/radiotheraphy/srs? Anyone with recommendations in UK or Europe ? anyone have any advice for us? Thanks
- June 9, 2021 at 10:28 am
Ireland1ParticipantSo sorry for what you and your Dad are going through. This is the worst part – waiting for the exact diagnosis / extent of disease to be confirmed. I imagine once you have the biopsy you will see the local oncologist quickly. I think it would be important to try and clarify time frames for that and use it as a starting point to see what she offers. She will at least be knowledgable and even if she can’t offer all the options you hope for – she will hopefully be able to discuss them and point you in the direction of someone who might. With regard to U.K. – Larkin in the Royal Marsden seems to appear on lots of the immunotherapy papers – but I’m sure others in the U.K. will have more specific advice. The Macmillan website has a melanoma forum which might be helpful too as it will have patients throughout the U.K. – who might be able to give you advice on the best centres. Wishing you and your Dad the best of luck.
- June 9, 2021 at 12:18 pm
- June 9, 2021 at 4:00 pm
I am very sorry to hear about your dad. The good news is that the therapeutic landscape changes monthly and for the better.
If you are looking for one of the top 5 Melanoma experts globally, I would recommend Prof. Axel Hausschild at Kiel University Hospital in Kiel. He is one of the fathers of the the BRAF – MEK targeted therapy and he sees patients from all over the globe.
Besides being one of the best, he is a terrific guy and has this human touch, which a lot of his peers lack.
Being in the UK, Kiel is not too far away.
Hope this helps.
- June 9, 2021 at 11:54 pm
I am sorry too for what your father (and your family) are going through.
I am British, but live in the US and so have been lucky to be treated in the US. I try to follow the experiences of British patients, as I would like to return to the UK, but I fear my diagnosis means I really should stay in the States.
In terms of treatment, I think you are right that SRS would make sense then combined with immunotherapy; or BRAF-MEK if your father has BRAF. For some reason UK patients seem to be denied SRS, and I dont understand why. I agree with Ireland1 too on his recommendation – the main person I have seen on academic papers is Larkin who is at the Royal Marsden in London. So that’s the doctor I would try. I do fear that the US is too expensive without health insurance here, and that without insurance you get charged higher prices. I dont know about the German doctor recommended but treatment in Europe could be much cheaper and more practical (shorter distance), compared to the US.
There are lots of treatments now, I just hope the UK NHS will let you try them and also that you can see Larkin or a melanoma specialist in the UK soon.
Take care, Mark
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