Does anyone have experience with skull metastases?

[PlutosNose]

“Skull Calvarium Lesions increasing in size” noted on my last nuclear bone scan. All other mets been in my spine ribs pelvis so this is new to me. Can anyone give me feedback on this?

Thanks!

[nonna70]

I have no idea. But every time I see your username I smile.

[PlutosNose in reply to nonna70]

You are sweet💙

[Discocat]

Hi PlutosNose

I have extensive mets all over my skull, whole spine, and most of my torso to my pelvis...so far my arms and legs have been clear. I'm almost 4 years since de novo diagnosis and I was shown my bone scan imagery for the first time a few weeks ago.

I've had about 5 of these scans...as well as many CTs and a few MRIs at the start of my diagnosis....but this was the first one that I have ever seen.

My oncologist has always said that my mets are too numerous to count.

On the images I have a new flash on my foot...but my oncologist didn't mention anything to me....so I've now asked to see earlier scans to check if I had that before.

My understanding is that there can be changes from scan to scan without it been called progression....often hot spots light up more than previously due to the shedding process that occurs in bone mets....sorry can't remember the proper terminology but the bones have a mechanism that basically shifts between absorbing and shedding calcium deposits and this has something to do with the imagery fluctuations from scan to scan.

[PlutosNose in reply to Discocat]

thanks.. that’s helpful!

[Timtam56 in reply to Discocat]

I think the term you’re looking for is the difference between OsteoBlastic and OsteoLytic lesions. But I can never remember which one is which. Ahhhhh. I just looked it up and ….Lytic are the ones that are being destroyed, Blastic are the ones that are being newly formed.

[Discocat in reply to Timtam56]

Yup that's the thing I meant....thank you Timtam.××

[Timtam56 in reply to Discocat]

Yeah. Now all I have to do is try to remember the difference!!! Oh my brain is made of mush. I tell you!

[nonna70]

Since I wanted to understand what Calvarium meant, I looked it up. I know less than I did! I think I'll skip med school and let the grandkids do it!

[Timtam56]

I have all of those too PlutosNose.

I’ve had calvarium, too many spine and ribs to mention all of them here, plus hips and now liver. Mine all cause me pain or itching at various times, and no pain or anything noticeable at other times.

I’ve been dealing with all this now for coming up 7 years in May.

[Nocillo]

Yes, I’ve had skull mets for years. First diagnosis I had bone Mets everywhere . I’m not worried, but don’t want it to jump to the brain! Good luck with your treatment.

[sancarlos]

Hi,

My last scan showed metastasis on my skull. My brain was clear. This was new to me also, since all others were spine, hips and ribs.

Good luck.

[PlutosNose in reply to sancarlos]

Thankx sancarlos💙

[Kerryd22]

It might depend upon how the mets arrived in your skull. I had no Mets in my skull when I was first diagnosed but I had a considerable number everywhere else including my spine. I reported a minor problem a few months later and mets had marched up my spine, surrounded the clivus which protects the nerves as they traverse between the head and the spine, eaten away one sinus cavity were munching on the second sinus cavity and generally made themselves at home. It was treated by an immediate change to Abraxane and radiation was ordered.

I had nine days of radiation with breaks only on the weekend and six months of Abraxane. I started on Afinitor and Aromasin after that and I’m still on Aromasin nearly nine years later.

I had multiple mets and they’d moved very quickly so they were marked as aggressive.

Your doctor might decide that you should change drugs or they might think radiation will be enough. The masks you need for head radiation are not much fun but the actual zapping is over pretty quickly. I was worried that the mets would step across to my brain but so far so good. Even if they did the oncologist assured me that the gamma knife would resolve it.

There’s so many options these days that I try not to worry about what’s next.

All the best

Kerry

Cat meme

[PlutosNose in reply to Kerryd22]

Good Advise.. I'm seeing my oncologist tomorrow so I'm glad to have the feedback I have gotten here in my head so I can ask useful questions.

[TammyCross in reply to Kerryd22]

Wonderful description! So vivid. It sounds as though they might start furnishing your sinus cavity.

I developed lumps all over my skull. Apparently not skull mets, but onc reassured me that skull mets are not likely to spread to brain.