Secondary breast cancer in brain, bones and lungs

Hi Hipo,

I just noticed your reply to Fliberty after I just sent my reply:) I’m sorry you’re in a lot of pain some days. The pain in my ribs is particularly bad when I cough at the moment and to cut a long story short I’ll be chasing it up at hospital this week. I’m hoping there is pain relief they have or can offer you but I’m quite new to this type of secondary cancer myself as it was only discovered last month! Will post again when I know a bit more. Clare xx

Thanks for replying. Live on my own so long days. Started going to the big c centre again which I am hoping will lift my mood. Yes I am on morphine. Have chemo every 3 weeks. Well sounds like you are having a hard time yourself. Never done this sort of thing before. Worried about saying the wrong thing. Be nice to make friends to talk to.

Thanks. I started reducing my steroids today so I’m sure I’ll slow down over the next week or so and feel it more. I’m off the nausea meds from today and feeling OK so far though

From my understanding they’d do targeted radiotherapy on just the tumour itself where possible but if, like mine, your number / spread of mets is too wide for that type then treating the whole brain is your best bet to reach them all. They can only do whole brain once, but can still use targeted radiotherapy on further brain mets if needed.

You asked about future treatment for me, the current hope is that the radiotherapy might inactivate the brain mets enough that the Phesgo I’ve been on since April 2024 can control it alongside the other areas it has under control.

If that doesn’t work, future treatment means being on chemo, probably with Enhertu, Tukysa or Kadcyla as my cancer is HER2 positive.

I’m so glad they are getting things in place for you to start on Monday. You’ may find you have more time to think about your rib and lung mets once you’ve started to disrupt the brain ones.

I hope time flies for you now after the long and scary wait xx 

Hi Hipo, 

There’s no need to be nervous at all, we all came here scared and looking for help and understand how that feels. I can see how dyslexia would make chatting online tricker but I’m sure we’ll figure it out and if I can help I’d like to.

Sorry to hear you’re having pain from your mets, are your doctors working on getting it under control for you? Please make sure they know if your pain relief isn’t working well for you, don’t suffer in silence.

As LovedbyArchiedog, said feel free to ask questions and we’ll help if we can. 

I’d also second the Maggies centre recommendation, both for support from the staff but also for the support groups. Talking to others in person could help you to build a support network more quickly xx

I really don't know what to say I'm not sure what the hospital Maggie thing is. I'm waiting for my scan to find out what is going on with my cancer and whether it's spread or whether the chemotherapy is keeping it bay. I have had a few blackouts recently and they want me to do me a brain scan just to check. Yes it can be very frightening on your own as you don't know what it's going to happen next thank you very much for replying as I am open to anybody to talk to about it at the moment and I really hope that your treatment plan is going well. Very new at doing all this and never done social media before so I hope I don't do the wrong thing. Just want to talk someone who's down to earth and not with complicated names of what chemos they're on and what jabs I am on. Hopefully speak to you soon thank you and send that yeah

Hi Hipo,

So sorry to hear you’ve had blackouts, that sounds really scary. Glad they are investigating it properly but it must be difficult to wait for the scan to come around.

I’ve copied the text from an earlier message in this thread about Maggies centres below:

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

You don’t need to live near a Maggie’s to get cancer support. Search for your nearest centre geographically, leave your details and a cancer support specialist will call you.

There are similar other organisations too like Jasmine centres and MacMillan centres too. Ask at your hospital as these charities usually have close working links with the oncology departments.

Hope that helps xx

Thanks for your reply, again very helpful:) I hope you’re still coping okay with the reduction in meds. I’ve got to say I’m not looking forward to taking steroids again as they made me quite tense and moody before although it’s difficult not to be certain that wasn’t more due to coming to terms with knowing I have brain mets!

Good also that you’ve got a clear treatment plan ahead and I really hope the radiotherapy will deactivate your mets for a long long time. One of my questions to my oncologist on Thursday was whether wbr was a last resort for me and thankfully he said no there are still other options! I had quite an intense day also getting my mask made and scans on my brain and ribs. I felt emotionally drained when I got home but am far less up a height now that treatment is round the corner. Xx

I’m really sorry you’ve had blackouts recently and hope you get your scan soon to check things out. 

Please don’t feel nervous about posting - as Fliberty says, we all come here scared, I know I have but I’ve always found it a welcoming place although I don’t have much experience of social media either. Xx

I have been to the big c centre that is near me. It seems to be helping. Not totally sure I fit in. Always had that problem with fitting in. Really need friends to talk to someone thought I would try this. I have read other people's messages and they seem to know about it all a lot more than me. Names of the chemos and injections. I am just trying to have as many normal days as possible. Went shopping on my own yesterday and did lots of things I have been wanting to do in months. In one shop I was shoved at the end of the escalator and ended up on the floor. Put me off using them for a long time. Lift all the way. Have walking issue due to a car accident a long time ago. I hope you are doing ok. Thank you so much for the message. Cheered me up. Tell me about yourself.

I think I just sent someone else your message. Was a long one too. Thank you for your message. I really have fitting in problems.