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Skull mets

kbl
kbl Member Posts: 2,639

I was told back in the beginning of 2021, after a brain MRI, that I had skull mets to the calvarium. I wasn’t offered any treatment for them. I’m assuming because I had no symptoms. Lately I’ve seen a number posting about skull mets and having SBRT. Am I assuming if I had no symptoms and I’m covered from skull to femurs in bone mets that I wouldn’t be a candidate for SBRT?

Also, is there anyone here who had skull mets and it ended up metastasizing to the brain? If so, can you tell me if you have lobular or ductal? Thank you so much.


Comments

  • sadiesservant
    sadiesservant Member Posts: 1,875

    Hi kbl,

    I have skull mets to the clivus and a few other places. You are correct that, without symptoms, they wouldn’t normally zap them. I initially found mine afte4 some issues with numbness and tingling in my arm that ultimately were unrelated to the cancer. While I did have some numbness in my jaw we decided to take a wait and see approach as it wasn’t significant enough to warrant treatment. A year later I suddenly started experiencing severe headaches. Time to deal with the issue and had radiation to the area. (Of note, while pain meds wouldn’t touch the headaches, steroids got rid of them which was further evidence that it was the skull and c-spine mets.) That took care of the problem.

    I can understand the worry given the proximity to the brain but I don’t think that we are at greater risk of brain mets as a result of these skull lesions. More importantly, there is a limit to how many times they can radiate an area so I think we need to be careful about jumping the gun in the absence of symptoms. I would recommend keeping an eye on them, watching for symptoms but leaving them alone for now but also suggest you raise the issue with your MO to get their opinion. Hope this is helpful. Hugs!

  • kbl
    kbl Member Posts: 2,639

    Thank you, Sadiesservant. I have been having intermittent sharp, quick jolts of pain that last less than a second and a few headaches that haven’t been horrible. I do have some mild cord compression in my c-spine. I’ll get another brain MRI just to see how those skull mets are doing.

    Hugs to you too.

  • eleanora
    eleanora Member Posts: 273

    Hi KBL:

    My bone scan in April 2022 showed increased uptake in the calvarium. CT scan showed no lesion. Brain MRI in May, 2022 confirmed the absence of a lesion. Just had follow-up scans and calvarium still has increased tracer uptake, but Brain MRI shows no lesion or "concerning marrow signals". I have been on Faslodex since May and Kisqali since the end of July and it doesn't seem to have improved the tracer uptake. My area in the calvarium is left of midline, and while I have had no headaches, I occasionally experience a sharp "zing" that runs from the base of the skull to the front on that side, but it feels to me as though it's in my scalp, not my skull. Is that what you feel?

    I also had a lesion on the clivus which was treated with 5 rounds of SBRT at the end of June. I had no symptoms, but because of the numerous sensitive structures near the clivus (optic nerves, pituitary gland) the tumor board strongly recommended radiation while the tumor was small enough (8mmx12mm) not to cause side effects. I second Sadiesservant's comments on the treatment side effects plus the steroid side effects, but if I needed other skull radiation I would do it again in a heartbeat.

    My RO, whose opinion I value more than that of my MO, has repeatedly assured me that a skull bone met is an entirely different category than a brain met, and a skull met does not increase your likelihood of a brain met.

    Perhaps if you have another Brain MRI, your lesions may have shrunk because of your systemic treatment.

    Fingers crossed!

  • kbl
    kbl Member Posts: 2,639

    Eleonora, thank you for your post. My sharp pains feel like a quick zing, and then I have a slight headache after. It feels more in the head. I really don’t think I have brain mets, but I have lobular, which doesn’t show up on CT or PET, so I’ve asked my oncologist for a brain MRI. It’s been over a year and a half since I’ve had one. The radiologist didn’t specify where in the calvarium, but I have extensive bone marrow involvement, and it said something about the bone marrow signal for the skull too. I really appreciate your story. Thank you for sharing.

  • eleanora
    eleanora Member Posts: 273

    kbl:

    Please let is know if you get a brain MRI scheduled. Fingers crossed for clear results!


  • kbl
    kbl Member Posts: 2,639

    I definitely will, Eleanora. Still waiting to hear from doc. Will call later today.