Hi everyone. Devastated to be here to be honest.
my husband was originally told a lump he had biopsied was benign, two weeks later its malignant and it’s melanoma. The mass that they had been querying a diagnosis for in his brain is also melanoma. So brain and neck lymph nodes mets with no known primary yet.
he has been referred for a PET scan and his original biopsy that was taken early November has been sent for BRAF testing and then we await an appointment for a melanoma specialist in the new year.
i have a couple of questions..
1) could someone please explain BRAF gene testing a little more?
2) i seen online we can ask for pathology reports? Who do i ask for this and is it standard practice?
3) staging… who does this and when?
4) statistically what is the prognosis for melanoma with brain mets.
my husband is 35 and we have 3 young children. My father passed away from covid last year. I feel my world is spiralling and I just need someone who understands my fear to talk to. Thanks
Hi McKeago92 and another warm welcome to the online community
It's understandable that you're feeling like your world is falling apart and it's a very common feeling for both those who have cancer and for their families.
Alottment lover has already pointed you in the direction for getting your questions answered but I thought I'd also pop on with a few links for you to take a look at 
You asked for an explanation of the BRAF gene testing and, as I haven't had this myself, I thought I'd link you to the Macmillan page on BRAF gene mutation test for melanoma. As Alottment lover has said, your husband's cancer nurse specialist (CNS), sometimes also referred to as a keyworker, should be able to give him more specific information if your husband wanted it.
I didn't ask for my pathology report but, if your husband wants to see this, again his CNS should be able to organise that. It would probably be useful to go through it with them as it's likely to be full of medical jargon.
Staging is done once all the biopsies and tests have been run. Macmillan have this information on the staging of melanoma.
The best person to ask about prognosis will be your husband's consultant once they have all the test results in place. Do remember though, that everyone is an individual and statistics are an average based on previous people with melanoma.
I've had a look in the group to see if I can find a couple of people who have posted about having brain mets recently and found Fenella and LLL . Hopefully they'll feel able to pop on and share their experiences with you.
Wishing you all the best at this difficult time.
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
