Secondary breast cancer in brain, bones and lungs

Hi, I’m so sorry to hear your news. You may have just seen I’m worrying that I have brain mets now . I’m sorry about that, it looks insensitive above your post when you have just been diagnosed but I hadn’t seen yours before I posted.  It must be very scary (I’m scared at the thought of it) but there’s so many treatments now and people are living longer. I’m sure once you start your treatment , it will help a little. This horrible disease is like a roller coaster but we all keep going once we’ve got over the shock of a new diagnosis . I really hope someone with brain Mets will reply with some positivity from their experience. Good luck and lots of hugs xxx

I hope you can get started on radiotherapy very soon! Xx

Hi there, thanks and no need to apologise. I hope you have some reassuring news soon and yes this horrible disease is indeed like a rollercoaster. I have to pinch myself that this is real sometimes (I wish it wasn’t!) I’m desperate to start radiotherapy which I hope will calm me down a bit, living in this heightened state of anxiety is awful isn’t it. Really wishing you all the best for your future treatment too. Xx

I know , me too . I can’t imagine life before this now and yes the anxiety can be  awful ! But we’re have to keep going and hope for more new treatments.. ️ I’m sure once you know that something is being done , you will feel a bit better. I’m hoping to get a call tomorrow and a head scan or I’m paying for it. Good luck with your treatment and take care.  Xx

Hi all,

I have brain mets too (and in the bones of my skull and my liver. You can see my history in my profile if you click on my name if you want more info on my experiences with cancer diagnosis and treatment.

I’m having brain radiotherapy at the moment but we managed to limit it to one region of my brain as it’s mainly my cerebellum that’s affected. So far the extra-cranial disease has been controlled by my HER2 targeted treatment Phesgo (trastuzamab and pertuzamab combined).

However, I was also just posting on a similar earlier thread about brain mets treatment. That thread includes a couple of people posting about their early experiences of whole brain radiotherapy that you might find interesting, see link below.

 https://community.macmillan.org.uk/cancer_types/breast-secondary-cancer-forum/f/new-here-say-hello/250343/stage-iv-breast-cancer-with-brain-mets .

This is all really scary to experience, particularly going directly to secondary, but you’re not alone. There are great support communities and help available to you. While secondary breast cancer can’t be cured there are many treatments intended to control it to give you time. There are people living with breast cancer mets that are still going years later, often outliving their initial prognosis significantly. It might not be as bad as you think.

It’s not easy to absorb this huge change, but you will feel more in control once you have your whole treatment plan and particularly once treatment has started.

I’m happy to answer questions and share my experiences if I can help. Just let me know.

Take care, Fliberty

Hi Fliberty,

Thanks for your message and for posting the link to the other thread, all really helpful. I hope your radiotherapy is currently going well and you’re not too tired? I was wondering if there are side effects you’re dealing with, mood changes and hair loss are things I’ve been thinking about lately. I think I’m still in shock about my latest diagnosis to be honest. It doesn’t help that I was told in November I was likely to be looking at a good period of stability with cancer ‘only’ spread to the lungs and the next thing I know I’m in hospital with brain seizures! I’m also struggling a lot with coming to terms with having cancer in the brain. Partly I think because googling brain mets makes pretty grim reading. I know Dr Google is not the place to look and I should keep away but I keep reading the prognosis is worse for brain mets than elsewhere. That said, this might not take all treatments into consideration and I have no idea how verifiable anything I’ve read really is! Before the seizures I know things weren’t great but I was hopeful of having a few more years left. This month however has felt like a kick in the stomach when I was already down and I’ve been feeling that death is very near. I guess that is all part of being a cancer patient though. Sorry for rambling and I really hope your treatment goes well. I’m desperate for radiotherapy to start come what may and I suspect you’re right that I’ll feel better mentally once it starts. Clare xx

• Glad to help.

My radiotherapy is going OK thanks. I had a rocky start but have steroids and anti-emetics that are keeping things under decent control now. They hoped I might not need them as I was having regional brain treatment not whole brain (I understand they always give steroids for WB by default), turns out I did need them!

I was sick as a dog about 6-7 hrs after my first treatment and they had to delay my second one. I couldn’t keep water down but I called the radiotherapy alert line and they got me in to the hospital for the Dr to review me before my session.

They checked my bloods, electrolytes and delayed my 2nd session to get a CT scan just in case and get me steroids on and sickness meds to help resolve it (and injected the initial emetics so I could drink water).

I managed to keep toast down that evening and recovered quickly. I was back to have my 2nd session only 1 day late and they added a 10th session at the end of my schedule. Everything has been fine since then other than some short periods of manageable nausea.

I’m tired and still have some nausea but I’m actually not feeling too bad. I even managed lunch in a cafe and a little walk before my 3rd treatment. I had my 4th one today and feel tired but OK. I get a break over the weekend and back to daily sessions again next week.

I think I’ll be more tired when I finish the steroids after treatment ends, as they can keep you awake and the treatment is still in effect for a while after your sessions end.

They warned me about lots of side effects but they also put them into context of the common and the more rare ones before you give your consent. Ask as many questions as you need to.

I haven’t noticed any mood changes other than the tiredness at certain times of day vs when the steroids are kicking in (they make me a bit restless and more focused / awake).

i haven’t lost any hair yet but I’m likely to, it may return thinner or in some cases it might not grow back where the rays go in. They did say that some people don’t lose it.

I’ve already thinned my hair loads from having chemo twice, I’m still wearing soft bamboo or cotton hats over my hair that’s regrowing from the latest chemo (it takes a while to thicken after it starts growing back, it doesn’t grow uniformly) and will wait and see what happens. My scalp may have parts that become sore over time like sunburn (that’s what happened with my breast radiotherapy) so it will need protection from the sun and wind etc.

One thing I experience with steroids (I’ve been on and off them since Mar 2024) is that I swell up, particularly my face which is really frustrating. They are amazing at reducing brain swelling, and therefore your brain mets symptoms quickly though.

I’m not surprised you're in shock, no one is ever ready to experience brain seizures!

I was dizzy for months and the Drs thought it was a nasty inner ear infection then Vestibular Neuritis until I felt drunk had vertigo when I moved and couldn’t balance to walk unless I was touching something stable. Then I suddenly couldn’t stop throwing up whenever I moved, they sent me straight to A&E and they found it was a brain tumour that night. I couldn’t walk without a zimmer frame (at age 48) until after they got me on high dose steroids.

They told me it was a brain tumour late on the Wed night and I had MRI with contrast then I had brain biopsy surgery on the Friday to confirm it was secondary breast cancer in my brain and skull, as well as liver. They can’t remove it surgically without major risk and rehabilitation as it covers a wide area of cerebellum and extends into the dura (they’d have to replace a 3rd of my skull (that’s been invaded with breast cancer) with titanium for a start!) before the risk of removing the main tumour.

Believe me I was in shock too but it gets easier with time, honestly. Let your family and friends help you, you need a good support network.

The stats are grim for brain mets (I found it way scarier than my first diagnosis in 2018 in breast and local lymph nodes). I looked at that brain mets stuff on Google too. I found what helps me is to look at the worst case so I’m prepared but I don’t relate it directly to my case, I look for better examples too (usually in scientific papers) and then trust my oncologist to tell me where in that range I sit, and then I feel prepared to ask all my questions about the options and feel more in control.

Hopefully you can see that you’ll have a supportive medical team while going through treatment and they will respond to adjust meds and support you to get you through it.

Do you have a Maggies centre near your hospital? Ours in in the grounds of the hospital, I’ve added a link to Maggies website below.

I found it helpful to talk through my diagnosis and some of my appointments and treatment decisions with the cancer nurses there. That gave me more time to work through my questions and reasoning than you typically have available with your oncologist. They can help in lots of other ways too, if you head in and tell them you have a secondary breast cancer diagnosis and would like to understand the help available to support you. They really are lovely and a great resource:

https://www.maggies.org

Don't worry if you don’t have a Maggies centre nearby, there are similar other organisations, a similar one near my mum is called a Jasmine centre and there are often MacMillan centres too. Ask at your hospital as these charities usually have close working links with the Oncology departments.

Hope that 2nd huge ramble helps, keep in touch and let me know how you get on.

Don’t be afraid to ask more questions xx

Hello again,

Thanks for your reply, again I’ve found it really helpful. Sorry your treatment got off to a rocky start but I’m glad they sorted that quickly for you. I’ve only been taking tablets (ribociclib and letrozole) for my lung mets up until now so the world of radiotherapy is new to me. Obviously, like all of us I’d rather not be here at all but I’m desperate for treatment to start but also quite daunted by what to expect as I haven’t found the tablets too bad so far but this feels like a whole new level! 

That sounds a sensible strategy for living with the prognosis for brain mets. At the moment I feel too scared to ask my oncologist what my prognosis might now be because I very much feel whatever can go wrong has and will! Hearing of positive stories does help a bit though. Since the seizures I’ve been in a very low place but yes I hope in time it will get easier. I also really sympathise with you walking with a zimmer frame at 48 following discovery of your brain Mets. I’m getting steadier on my feet again but needed crutches after the seizures. My lung Mets had already slowed me down quite a bit having been a pretty healthy 53 year old before my cancer diagnosis last year and now this!

I’m lucky to have a Maggies nearby at the same hospital I go to for treatment and they are excellent aren’t they. I’ve spoken briefly with one of the staff there about my brain mets but when I feel strong enough mentally I’ll contact them again. I’m also lucky with family and friends although I don’t think I’m much fun to be around at the moment! 

Good luck with your treatment next week. It’s also good to hear the nausea is now manageable for you. I’ll definitely post again when my treatment starts. Clare xx

Hiya,

Thanks. Not surprised you’re feeling low, it’s a rollercoaster with so many ups and downs. Strangely you do look back and realise how you’ve adapted to this situation with time. Thinking of you and hoping you get your treatment plan and dates soon xx

I passed the halfway mark yesterday and I’m still coping OK with the fatigue and wobbles accumulating.The anti-nausea meds have kept things manageable as long as I eat regularly. My husband and I’ve been trying to get out for little walks most days (and / or to a cafe) while I have the energy and appetite from the steroids.

I’m in the North East and remembered this video that I found really helpful preparation while waiting for treatment dates, to know what to expect for brain radiotherapy. It shows the head mask making process that I’d seen others refer to.

My mask only covers my head and not neck or shoulders like in the video, I don’t think I’ve ever had it on for more than 10 mins, usually it feels like about 5 mins at most. It’s to keep you positioned and still and it takes the pressure off you worrying about moving slightly during the treatment. I found the mask making process a bit strange but absolutely fine, like a warm facial treatment. It looks weird but it’s mesh that you can breathe normally through the whole time. 

Northern Radiotherapy Network - Radiotherapy for Head and Neck Cancer:

https://youtu.be/ENVD96ptoCQ?si=PD1NAY2YDwBbfr41

xx

Hello,

Hope you’re still doing okay and the side effects are still manageable. It’s good to hear you’ve been able to get out for short walks most days, I hope all continues as well as it can for the rest of the treatment.

Thanks for sending the link too. How long did you have to wait for treatment to start after your mask was fitted? I haven’t been given much information about my appointment on Monday but will arrive with lots of questions! Obviously I’m keen for treatment to start as soon as possible and am hoping the wait won’t be too long. xx