I have new bone met on skull showed in recent brain scan. They are discussing targeted radiation but waiting on my PT scan to see if I have any progression elsewhere.
Anyone had bone Mets on skull? Radiation? Any symptoms? Newly on Orserdu after Ibrance/Faslodex.
I’ve had Mets on skull since day one. No one has ever suggested anything but my regular meds. It’s been 9 years now, so something is going right. Every case is different, but get a good explanation from your doctor before you decide. Good luck!
This has been my experience as well. I feel pain now and then but nothing worth "zapping"
I had progression into the skull a couple of months after I started treatment for de novo stage four. It was deemed as aggressive probably because a scan in May showed no skull mets but a scan a short while after starting Letrazole, in response to a very minor symptom, showed the mets had colonised my skull, eaten out one sinus cavity and were working on the second cavity. The top of my spine/base of the skull (technically called the clivus) was surrounded by mets which were strangling the nerves that go through that section of the spine to the skull. I had radiation booked immediately and then I started 9 rounds of Abraxane two weeks on one week off.
I was terrified the mets would move to my brain next. Doctors reassured me that I would be a candidate for gamma knife treatment but as it happened I didn’t need it and although I have bone mets from the top of my head to my toes I’m still here and I’m considered as stable. Many mets have healed and my breast tumour is invisible on scans. I still have active mets but they aren’t causing too much problem as one day the area on my left hip is active but next time it might be the right hip. I have pathological fractures on my right hip and in T7 but thanks to the doctors at the hospital I attend I’ve been on Exemestane since July 2016. I started with Exemestane and Afinitor but had to drop Afinitor April 2017.
The radiation isn’t as much fun as you can have but it’s over in seconds. It involved a specially fitted mask which is screwed to the table so that the operators know where they’re aiming for and to prevent you moving. It can be tight depending upon where you place your hair but an experienced technician will fan your hair out so you’re laying on as little extra height as possible. The first time is the worst time but it really is over very quickly. Best thing though was that it worked. I wasn’t in pain so it was simply to knock the mets back so that new bone could grow again.
All the best
Kerry
My initial diagnosis found a met on my skull. It shrank after I started my targeted therapy and hasn’t been mentioned in my scans since then. No one suggested radiation on the skull, but I did have radiation on a couple lesions on spine.
Hope this info is helpful. Best wishes to you !
Hi
I've had mets in my skull from day one of diagnosis de novo about 3 years ago.
I've got mets from head to hips in most of my torso bones. I'm on Ibrance, Zoladex, Femara and Zometa every 3mnths.
I've never been advised to have radiotherapy of any sort so far...even though I've got tumours throughout the length of my spine I'm active and feel no symptoms there.
Like Kerry I was also scared of progression to my brain...but the current meds have strunk the primary breast tumour to undetectable in scans and the rest remain stable.
I've never had the full extent of the skull tumours explained...when I've asked the response is that they're peppered allover.
I've had sinusitis issues long before diagnosis...every cold always ends up being stuck there....perhaps this is due to the bones/cavities in that area being colonised??? The oncologist estimated that I probably had the primary tumour for at least 6 years before diagnosis.
Thank you. Were you symptomatic at all? I’m having numbness in my legs and feel balance it off. They are confident it is not coming from the actual skull bone met. But are suggesting a spinal tap to make sure it is not in the spinal fluid.
I’m terrified now
I have joint aches that come and go,Trigger thumbs, stiff knees and sore soles of feet etc....but I think this is more from the meds than anything else...think its the Femara.
I go to pilates 2x a week for hour long sessions on reformers in a group of normal physically able people and I have no issues...so I think my balance and coordination are OK.
The pains I get seem to effect one place at a time before shifting to somewhere else...I don't take any pain killers.
I was extremely freaked when I was first diagnosed. I had concerns that the tumors in my spine would effect my spinal column and that the skull ones would go into my brain....my oncologist reassured me by saying once you have MBC you basically have Molecules of cancer allover the place and the meds control them...and it doesn't mean that it will go into those places.
3 years on ....it hasn't and apart from mostly menopausal symptoms l'm fine.
I was diagnosed stag iv de novo in 2019.Ive had Gamma radiation twice.No issues
Dear Elle713------Last year, I had radiation on my skull. It was against my will but the oncologist at the time kept talking at me until I agreed just to stop her talking. My right eye has been compromised as has my hearing and I think my brain. I am sorry that I did not fight back harder but I was too sick to argue. I have since changed my oncologist to one that hears me.
Hi Jersey
Thank you for sharing and I’m sorry for what you went through. More and more we realize how much of this is actually in our hands to manage. Too much. At the time, were you having symptoms from the skull met?
No, I had no symptoms. Further, I never saw the scan that supposedly showed the cancer.
Hi!
My skull has been full of mets since day one. I do not experience any symptoms any different than the Mets in my ribs or spine. I do get lumps on my head, that feel like I bumped it, from time to time (and the hurt a little). But no one has ever suggested anything other than my usual meds (Ibrance and Fulvestrant). I have been taking these meds for 22 months now.
Best of luck to you!!
Love and hugs,
Jody
Thank You Jody
I assume you have had no progression or new Mets since starting your treatment. These Mets have all been there fir the 22 months?
Yes. I have an extensive “network” throughout my skeleton since they found it. I have remained stable. I was diagnosed in April 2022 and began treatment a couple of months later.
I am happy to be alive and well. 🩷🙏🏻🩷
I’ve had bone Mets on skull since day one also. A lot of them. But It’s never been suggested that I have radiation on them either. As Nocillo says. We are all different. But I’d be wanting to know how deep they are, why they are a threat, ie: why can’t they be left to their own…. Etc.
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