bc bone Mets spread to skull or brain

[Shafight]

Has anyone had their bone Mets spread to skull or brain. I’m very afraid. I’ve had a couple of severe headaches and the top of my head is somewhat numb. I feel a bump on my forehead. I’m so afraid my Mets have spread. Does anyone have experience with this?

[Gallivanter]

Hi, Safight,

Yes, I've had my bone mets spread to skull and...face! ("bi-lateral"). While the initial reading of the scan report was jarring, I then realized that these are still "just" bones. Which helped me get over the very unsettling feeling about it all being so close to my, like, brain.

I think, but am not certain, that this doesn't mean that it's imminently going to go to the brain. Mine hasn't yet, and I got these reports well over a year ago.

But I will confess to feeling around my face and skull in ways that I never did when it was in other bones...

[Kerryd22]

My bone mets went into my skull in 2015 and colonised everything they could. Both sinus cavities and the back of the skull where the nerves come up from the spine. Doctors only discovered it after I reported a very slight symptom which was very minute numb spots on my face.

Before I was diagnosed with bone mets I felt like I had a knife in my skull but it was treated as a migraine. It might have been a coincidence because the treatment helped considerably.

When I was told after an MRI that I needed radiation immediately and IV chemotherapy I too feared that the mets were too close to my brain for my own good. But the treatment worked and the oncologist told me I am a candidate for gamma knife treatment too and I felt a bit better after that.

The thing is that the nerves exit your spine at the base of the skull and there’s bone called the clivus that’s protecting the nerves from damage but naturally the clivus is also susceptible to bone mets. And as the mets grow they have a tendency to wrap around and compress the nerves passing through the area and you get numbness and weird pains. I’ve been stable since 2016 on the same AI.

I still get outbreaks of sensitivity in different parts of my skull but it generally subsides again just like it does in other parts of my skeleton.

If it’s a new symptom I’d recommend reporting it because while it’s not evidence of brain mets, it could still require some intervention.

All the best

Kerry

[13plus in reply to Kerryd22]

I think I had that knife pain before the skull mets showed up in my scans for the first time (or around that time anyway), and yet I've actually had that pain randomly throughout my entire life since I was about 11 yrs old! Always just to the right of centre of the top of my skull. SO strange. Now I get random tender spots that appear for a few days and subside again, just like yours. Always seems to be a different spot on my head.

I assume you needed the radiation to the part of the skull lesion that was impacting, or very close to your nerves? What a relief for you that it worked well!

[Kerryd22 in reply to 13plus]

Yes that’s right. Radiation was nine days with only a break for the weekend instead of their usual one every second day because it was moving rapidly into new territory. That’s also why I had Abraxane but it’s all settled down now. I’m not really sure if the knife pain was related to my bone mets because the migraine treatment I had did stop the knife in the skull feeling. It was only because I hesitated when the doctor asked if I had anything else to tell him that he reminded me he couldn’t know if I didn’t tell him. And so I mentioned the really small numb spots. In the first place a quarter of my face was very numb so it was different the second time. Apparently it could be a migraine that mimics the effects of a stroke. That’s what I was treated for anyway. Mine wasn’t that bad but I was glad when it went away.

Last time I had a skull scan I was worried that I had brain mets because I could hear music when there was none. When I was home alone and I’d be singing to the music playing in my head. Turns out it’s related to oncoming deafness. I know my hearing is challenged but I read an article online that explained that as you go deaf the brain makes its own music because it doesn’t like the silence. I don’t have a radio or tv on very often so my brain took over. I felt better after reading that I must admit. My brother tells me I need a hearing aid and I tell him to speak up and stop muttering. 😂

[13plus in reply to Kerryd22]

Well that's all pretty interesting stuff, even though I'm sure it was pretty worrying while you were experiencing it! I guess there are a lot more types of migraines than most of us are aware of, and the music/developing deafness is something I never heard of either. I actually wear hearing aides as I've been hard of hearing my whole life, and my dad had a different type of hearing loss to me, his was pretty severe. He could be very challenging to communicate with at times! I've read a lot over the years about all things to do with hearing loss but that one is a knew one for me!

I encourage you to get one, you can barely see or feel that they're there now and you will come to realize how much you've been missing! As well as making it easier for others to talk to you And if the brain is deprived of hearing, it does actually diminish the health of your brain overall because it's lacking that stimulation it is used to receiving.

[Nocillo]

I’ve got Mets all over my skull. Thankfully I feel no pain and don’t worry about them any more than all the rest of my mets which cover my entire skeleton.

[Hazelgreen]

I don't have much to add to that given by your other two respondents. My bone mets extend to my skull, and I too have more headaches than I recall having in my life before. However, my reasoning is about as good as it has been since 2019 when my breast cancer was diagnosed as having metastasized. I'm 78, so attribute my forgetfulness and shrinking foci to age rather than cancer. It might be reassuring if you checked google to see what research indicates is the likelihood of your specific cancer attacking your brain.

[Discocat]

Hi

I've had skull mets from the start of diagnosis de novo almost 3 years ago.

It initially freaked me out and I also had concerns about how close they are to the brain....

But nothing has progressed and when I asked the oncologist she basically said you have bone mets all over your body and that doesn't necessarily mean that anything will spread to your brain....

In the beginning everything is scary!!

It still is later on but we just get used to living this way. Try not to focus on the "what ifs" and celebrate the positives instead.

I did sometimes get over sensitivity on areas of my head when it felt like bits were paper thin and achy...I think it was connected to how I had my hair pulled back that triggered a nerve in some way. Since I cut my hair to jaw length I don't tie it that way anymore and I haven't had issues since.

Wishing you all the best

Zoe

xx

[Flavia100]

I am being treated right now with 10 radiation treatments for a couple lumps that grew on my scalp. It’s very strange for this to happen, according to my doctors. I have ultimate faith in my radiologist. He is the head of the entire department and he has never steered me wrong. So I am going to embrace the 10 treatments and hope for the best. Had my first two already. Not thrilled about losing a strip of hair, but I think I can cover it up. I guess that should be the least of my worries. Sounds like you are getting good treatment but you might want to consider a second opinion?

[1711JPD]

Can you ask your onc to schedule a brain MRI? I did that and laughed when my onc called and said,”there’s nothing in your head’”! Wishing you, and everyone, all the best. ♥️♥️♥️

[RLN-overcomer in reply to 1711JPD]

LOL😇 Have a great day, and weekend

[Andersl]

HiWhen I was first diagnosed five years ago I had mets in my liver, lungs, spine and the lining of my brain.

The brain mets were treated with 'brain sparing' stereotactic radiotherapy. Since then I've had brain mets twice more. Both times treated very successfully with Gamma radiotherapy.

My symptoms were my right foot dragging and weakness in my right leg. The symptoms link to where the cancer is in the brain.

If you feel strongly that you may have mets based on your headaches etc perhaps your oncologist will arrange an MRI/CT of the brain. This would be the only way of knowing for certain.

I will add that the sooner brain mets are detected and treated, the better the outcome is likely to be. My advice would be make that call but keep an open mind and try not to be too anxious. The numbness and headaches could be due to a number of other things.

Lx

[NPmary]

If you complain to your oncologist and express your fear he or she might order a brain MRI (these are not 'routine') . Your symptoms do not necessarily mean brain cancer at all but a brain MRI proving it can go a long way in relieving your anxiety.

[lovnmycat]

Hi Shafight,

I was first diagnosed in June of 2022. I was MBC with the first diagnoses and at that time I had bone mets in pelvic area, all over spine, ribs, femur, upper neck, and skull. I was also extremely stressed. I did start treatment with Ibrance and Letrozole and started Lupron shots and Zoomed infusions every three months. I'm happy to say it took about 10 months but my bone mets are no longer visible and there has not been progression since. Know there are a lot of treatments out there and if one doesn't work then they move to the next option. Keep the spirits up and know I'm praying for you.

CJ

[Shafight in reply to lovnmycat]

I want to thank everyone who responded to my Mets to skull question. I had no idea my bone Mets could spread to my skull. Many of you have gotten it under control. Gives me hope! I’m in Florida for February. My next pet scan and Dr appointment is first week in March. I’m hoping to live with this new pain until then!

[13plus in reply to Shafight]

I think it would be a good idea to call your oncologist now and explain your new symptoms. They may possibly want you to get a scheduled brain MRI while you're down in Florida, so you don't have to wait until you get back. I've got skull mets since the last quarter of 2023 and I get tender spots but no actual headaches. Not to say that I'm experienced with the skull mets! It's possible they can cause headaches too. I just know if it were me, and I was concerned about it being my brain, I'd want to get it checked asap so a plan can be put in place ready for my return

[lovnmycat]

Hi Shafight,

Just wanted to add that in my experience, tumor markers can rise and scans can sometimes look like there is a bit of progression when starting new treatment because the dying cancer cells can affect tumor markers and when certain meds like Ibrance work they kind of surround the cancer so it can appear a little bigger. Don't panic it may or may not always be progression. I had one scare that new spots cropped up on my upper femoral neck. Turned out those were probably already there but so small they weren't noticeable on my first scan. Then the meds started doing there thing and it looked like progression but was actually just the meds working. We waited before switching meds thinking they failed. It was the right move. Turned out those were completely gone 3 months later at the next scan. Surprisingly some Oncologists or Radiologists don't know that and just read the scan and assume it's progression.

Good luck, my prayers are with you,

CJ

[Shafight in reply to lovnmycat]

Thanks lovnmycat!!

[CTGirl1962]

Hello!! This was one of the first signs my body gave me that my cancer had returned (after 10 years cancer free), although I didn’t know it at the time. I thought I had bumped my head and couldn’t remember doing it!! A bump on my head and it was so sore. Fast forward to 4 months later when excruciating pain started in my chest. My PC doctor ordered a chest xray and that’s when the radiologist found the mets.

Since then I have extensive skull Mets and the sore bumps come and go. More recently, I have been getting them on my forehead. 🤷🏻‍♀️

Last brain MRI showed no evidence of brain mets, but a small tumor on my pituitary gland that has yet to be addressed (I have an appointment on 2/8). I since started to sweat on one side of my body. So weird. I will update when I know more.

The skull is just another bone that mets will go to.

Don’t worry. It’s going to be OK!!

Now, if they can only give me some kind of relief from my extreme hip and leg pain, I’d be happy!!

Best of luck and hugs to you!!

Jody

[Shafight]

Jody. I wish you the best. Please keep us updated after your appointment this week

[JMPhD]

Hi Shafight,

I had metastasis to my skull when they found it throughout the bones. I know how scary this is, but just as Gallivanter said, “they are just bones”. Like you I had trouble wrapping my mind around that but it means id the treatments help in the other areas of bone, they should work in the skull/face too. Also, oncologist told me metastasis doesn’t almost ever spread from skull to brain. Rather is would move from an organ to brain. Regardless, I insisted on a brain MRI which was negative. So, I encourage you to also, to get as much clarity of information as possible…and hopefully reassurance.

Despite extensive bone metastasis throughout body and skull, treatments have led to stabilization so far!

[JMPhD]

I hope your treatments lead to stability, or even better reduction!🙏🍀

[Shafight in reply to JMPhD]

Thank you for your info and helping me not feel alone!