Post op treatment for melanoma

Good morning,

I feel a little confused! I had my first oncology appointment yesterday after having lymph node dissection surgery 10 weeks ago. I was diagnosed with melanoma earlier this year. My post surgery letter states that my BRAF mutation test was negative. I went to the appointment after doing lots of research expecting to talk about immunotherapy, however, I was totally confused when told targeted therapy with tablets would be my treatment. I’m confused. Could you please clarify for me whether targeted therapy is for a positive BRAF test or can be used for negative please?

Parents
  • Hi Minky4

    I'm not a nurse but I wanted to reply to your question whilst you wait for the nurses to come back tomorrow.

    Targeted does not work on BRAF negative patients, therefore I think there has been an error somewhere along the line. I would contact the cancer support nurse (if you have been given their details) or the consultant's secretary & ask to speak to the consultant. Was it the dermatologist, Plastic Surgeon or oncologist that you had your appointment with? Did you query the letter against what they were telling you? It really needs sorting out before the plans for your treatment go any further & I'm sorry that there appears to be a breakdown in communication somewhere down the line. I've sent you a friend request in case you want to chat by private message.

    Good luck and please let us know how you get on,

    Angie (Stage 3 melanoma patient since 2009)

  • Hi Angie,

    Thank you so much for your clarification, that’s exactly what I thought. It was at my first oncology appointment with a registrar I think. I didn’t have my letter with me but I go back on Tuesday and I’ll definitely be taking it. Tomorrow I am going to speak to the MacMillan nurse attached to the surgeon to double check that I’m definitely BRAF negative as my letter stated so I can be sure. I’m also going to take a the literature I have that says the same thing. I really wasn’t prepared for his decision on Friday so my mind definitely wasn’t at its best. Thank you so much.

    Tracy, ( Stage 3 melanoma patient since May/June this year)

  • I'm glad you are going back on Tuesday & that you are contacting your nurse tomorrow. Either the wrong BRAF results has been put on the letter or the oncologist has been given the wrong results. Good luck x

Reply Children
  • My partner's braf positive (it took a long time to actually have this communicated from plastic surgery to oncology) but chose to go with pembrolizumab first to give the option of targeted treatment later. His oncologist laid out his options and didn't make the choice for him but he's stage 4 so it might make the difference in how oncology handled him?

    I'm sorry you have this horrid disease too. I hope it gets under control quickly x

  • Thank you so much, hope your partner gets on well. Sounds like he had a better experience with his oncologist x