Hi all – Want to say first that my heart goes out to everyone on here – mel warriors, caregivers and families – struggling with new dxs and/or ongoing treatment, especially at this time of year!!
- December 18, 2019 at 5:40 pm
Second – wanted to update my sister’s situation to see if anyone out there has any info that can shed a light:
– A couple of months ago a brain MRI detected an osseous (bone) lesion measuring 6x4x4 on the inside of her skull in the right frontal lobe. Her brain was/is clear – it’s just in the skull bone.
– Her reg. scheduled Thoracic CT had also been completed and it was absolutely clear – no sign of mel anywhere else.
– Onc ordered a bone scan – that came back as “inconclusive” on the FL skull lesion but detected a 2nd one too – it’s on the back of the skull, very small, totally inaccessible and the report says (allegedly, I don’t have a copy of it) that it’s so remote and so small it’s NOT even suspect of being a met.
– The bone scan also showed there are NO OTHER METS anywhere – spine, ribs, etc. – all clear.
– Onc ordered a CT scan of just the skull and referred all to a neurosurgeon to make biopsy decisions
– saw neurosurgeon – he confirmed he’s not concerned about the 2nd site, also stated that FL growth is now 7 x 3 (?? – changing shape??) and has now ordered a PET scan and wants all other scans repeated in the next 4 – 6 weeks (MRI, bone scan and CT)
– he’s also set to biopsy the FL growth and will do so by removing the whole section of her skull that’s affected – with a 3mm clear margin
So … it was alot to digest with still very few real answers. My take/questions on this is:
– this biopsy procedure sounds like a WLE to the skull – are we correct to assume this??? – we kinda thought/hoped they would maybe just drill in there a ways and take a little piece to biopsy
– is he doing the PET to decide if this really is a cancerous growth or not? If it’s not mel, what the heck is it??? I hope the PET is conclusive!!!
– like last post – has anyone out there dealt with a recurrence in this area only??
At this point, we don’t know that this is a recurrence – it appears that NED is holding everywhere else in her body – but it also appears that she’s soon going to lose a good chunk of her forehead and she’s scared to death!!! If anyone has any information to add, we’d really appreciate it.
Thank you. Peace and love to all!!!!
- December 18, 2019 at 9:03 pm
I’ve been thinking of you and your sister. Well!! That’s a lot of info and not much at all, right? I really don’t know what to tell you. I suspect the different readings re size were related to one radiologist reading the scans vs another…but that’s just a guess. The neurosurgeon sounds reasonable and to be doing a thorough job. Perhaps it is not melanoma at all! At any rate, if you were going to take out a bit of whatever it is….for myself I’d just as soon as they get it all!! But, maybe that’s just me.
Certainly, there are plenty on this forum who have dealt with melanoma bone mets….but not exactly as this is described as far as I recall. So….that’s not much help. I am so glad the rest of her appears to be free of disease. That is awesome!!!
I haven’t dealt with anything like this personally. However, I have taken care of a good many kiddos post-op who had to undergo removal of substantial portions of their skull for a wide variety of reasons – trauma, tumors, hydrocephalus, craniosynostosis and repair of other congenital deformities. While such surgery is nothing any of us would ever want to experience for ANY reason, it is amazing what surgeons can do without leaving the patient disfigured or the brain injured.
I will be holding both of you in my heart. I hope you and yours are able to enjoy the holiday season in spite of all this. Sorry I don’t have much to offer on this one!! Keep us posted. Much love, c
Thank you Celeste, for all comments and good wishes and please know we hold you and yours in a special place in our hearts too!!
- December 18, 2019 at 9:55 pm
We will have a good holiday – she’s putting it firmly out of her mind for now and taking it scan by scan … has a hard time thinking about or discussing what’s coming (even when I’m trying to reassure her, she can’t go there in her mind, not yet). But your relaying of treatment your little ones have had IS reassuring, to me!!!
Yeah, there’s very, very little specific information about mets like these (if they are mel). I did find general references out there on the web, among the cancers that can spread to bone but from what I can tell, they are usually associated with late stage disease (one stat projected that only about 4% of them are found in live patients, the majority being found during autopsy) – and she is so far away from there now, it doesn’t make sense. And, we are incredibly grateful to “the gods that be” that all other scans are clear.
We are happy with the neurosurgeon as well – that he is being thorough, has had and treated similar cases in the past AND (forgot to mention above) suggested this thing could be a cyst on the bone. So, I’m thinking (hoping) if there’s no uptake seen on the PET, then this really is something other than cancer.
Thank you again for all info. You take care – big hugs!!
You are too sweet, Barb.
- December 19, 2019 at 1:40 pm
I was actually thinking that a cyst was a possibility! Especially given her melanoma status overall – because I agree with your research – that bone mets are more common in advanced conditions. So… I’ll be hoping it’s “just” a cyst!!! Only in melanoma world….right????
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