Hi everyone
to cut a long story short we were told today that myhusband has stage 4 melanoma as its metastasised to his brain. We have been given the treatment options. Radiation and immunotherapy. No surgery as the mass is on the left cingulate gyrus frontal lobe(??) and deemed too risky.
i have prepared myself for this now for weeks and already new it was in his brain and stage 4 but basically this just confirmed it.
my husbands family however have had their world collapse by “stage 4” even though they knew he had melanoma in his brain.
they are now saying things to my husband about getting worldwide second opinions as our Trust has failed him (6 months before diagnosis as misdiagnosed as cavernoma but we only seen the oncologist today for the first time who has taken over his care). they are saying yano dont just listen to this one opinion as there’s loads things e.g. cyber knife surgery? And treatment in munich and how Australia is better as high rates of melanoma. And telling him not to lie down to it (hes a father of 3 and already had every intention to do what he can to fight this)
now this is all well and good and if theres something better happy days but i have done extensive research and the treatment given to us seems to be the general consensus worldwide? Does anyone have recommendations of outside specialists they have spoken to for a second opinion? Like if there is research out there i cant find please send it my way.
who can i ask for all his MRI/PET/CT scans and reports as they want me to gather all this and send it off to all these different people for opinions.
I’m feeling very overwhelmed and almost like i’ve done something wrong and just feel like i may implode soon whilst trying to hold it together for our children.
Hi McKeago92
It sounds like an incredibly difficult time for the whole family right now and it's no wonder that you're feeling overwhelmed.
I suspect that your husband's family don't really know how best to help and their suggestions of looking for treatment outside the UK is just their way of trying to feel useful.
I'm afraid I have no idea how you'd go about sourcing a second opinion from a clinic abroad and I can't recall anyone in the group who has done that to point you in their direction. You could give the nurses on the Macmillan Support Line a call to see if they are able to point you in the direction of an overseas resource you could look at but I don't think they'll be able to make any recommendations for overseas clinics.
If you want to speak to them you can call them for free on 0808 808 0000 and they're available daily from 8am to 8pm.
As for collating all your husband's scans and reports, then the best person to speak to about how to go about that would be his CNS.
Do come back and let us know how you get on
x
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