Secondary breast cancer in brain, bones and lungs

Still doing OK thanks, my last treatment is on Monday. I feel wobblier and a bit drunk after each one but you do adapt. Last treatment is on Mon.

I’ve listed my appointments and dates down below so you can see the steps I went through:

10th Jan - appointment with the oncology radiologist to agree the treatment, location, understand risks, answer all questions etc. and sign the consent. I expect they would also prescribe the steroids and anti-sickness at that appointment for whole brain treatment.

20th Jan - Appmt for making mask in mould room.

20th Jan - also had Radiotherapy planning CT scan appointment using my mask later that same day.

27th Jan - First radiotherapy treatment. They gave me a printed schedule of all of my 10 appointments to take home from that first session. My appointments ran daily Mon-Fri 15min appointments. 

You may be able to get a frequent user parking pass from the hospital when you start radiotherapy so you don’t have to pay every day. I got mine from Radiotherapy reception.

Good luck on Mon, hope you can get answers to all your questions xx 

Thanks very much for sending your schedule, it gives me some idea of what to expect. I’ve been so worried about my brain mets developing new symptoms I’m desperate to start but didn’t want to pin too much on treatment starting soon after Monday. One of the things on my list of questions to ask them is how (un)likely it could be for further symptoms to develop before treatment. I’m on keppra now so at least that should keep further seizures at bay. That said my husband seems wary of me going anywhere since the brain seizures which were in many ways scarier for him as he witnessed it all whereas I have no memory.  It is so difficult dealing with this new life isn’t it. I’ve terrified myself again looking online at the prognosis for brain mets but have made a promise to myself not to look again, atleast not until I know a bit more about how I’ve responded to treatment (all easier said).

I hope your last treatment goes okay on Monday and have as relaxing a weekend as possible. Clare xx

Hello,

I’m not sure if I’m replying to my own post here (clearly not an expert posting online ) but am hoping your last day of radiotherapy went okay today.

I’ve had my appointment and have been told my radiotherapy will start either later this week or early next week so I won’t have to wait much longer. I’m also seeing my oncologist on Thursday (not the same person as the specialist I saw today) so will go armed with various questions. I feel more scared about this than learning of my lung mets which I didn’t think could be possible but am glad things are a step further..no doubt post again when treatment starts. Xx

Hi,

It was fine thanks, session 10 of 10 was finished this morning. I’m still feeling better than I expected. They said I may feel more fatigue etc over the next couple of weeks, probably as they wean me off the steroids again too.

My scalp is a bit dry now and I noticed at the weekend that my hair is thinning at the back where the rays went in. They gave me Flamigel cream to put on my scalp to moisturise the skin as it may continue to become more sensitive for a while yet.

I’m glad to hear your appointment went OK today and it sounds like you won’t have too much longer to wait to get treatment started

I can identify with worrying about what your husband saw and remembers of your scary experiences. I feel awful about how often breast cancer has caused me to scare the life out of my poor husband (unintentionally but it must have been so frightening every time). He practically wanders after me waiting to catch me like a toddler at times when I’m unsteady and wobbly on my feet. I can only imagine how incredibly scary your seizures were to witness.

It is difficult adjusting to such a change in your life and your autonomy but be kind to yourself. You (and your husband) can’t expect to adapt to everything all at once. It will take time but you will find a way through xx

I feel for you. I have had cancer before. This time it is breast l which has gone into my lymph nodes and bone. Have on going chemo. The bad news is I am terminal and single and doing this on my own. Having had to change my life style to suit the treatment friends or so called friends are gone. Really need to chat to people about your experience and ideas of how to deal with it. You sound very strong. Must be so hard to deal with the brain cancer. Sorry if I am a bit random just nervous to talk to someone about me and my problems. Hope I can get to know you through chatting. 

Hi Hipo,

Sorry to hear you’re going through this, it’s incredibly tough and so much harder without good support.

Glad you’ve posted on this forum for support, I tend to find I read more when I’m feeling low but post more when feeling stronger.

I have a few questions so I can understand your situation, but only if you want to answer. If so, it might be easier to add it to a summary on your profile as it makes it easier for others to get to ‘know’ you and understand your situation and make responses relevant. You can add it to your profile, About Hipo section. You can click on my name to read mine.

You said it’s terminal. Has your Dr confirmed your secondary is terminal or do you mean because secondary is incurable it needs to be treated / managed to prevent it from being terminal for as long as possible?

What type of breast cancer is it e.g. positive for HER2, ER, PR or triple negative?

Where in your bones has it spread to?

I’d suggest starting a new thread specific to your mets type / location to maximise the chance of finding others in as similar a situation to yours as possible. In either the secondary or the incurable section.

If you do, let me know where. I’m happy to come over and chat there about what helps me cope and hopefully encourage others to join us.

Fliberty xx

Hello again,

Good that you’ve got to the end of your radiotherapy now and I hope any further side effects will be manageable. 

I’ve now been told my mask will also be fitted this Thursday and 5 sessions of radiotherapy will begin on Monday so I’m pleased that’s confirmed. One of the many things I’ve also been wondering is whether whole brain radiotherapy is a last resort for brain mets, something I’m dreading but will ask my oncologist about tomorrow. Have future treatments been discussed with you? I’ve almost forgotten about my lung and rib mets in all this, despite my ribs hurting quite a bit over the last week. They’ve said they will also check this on a ct scan tomorrow and depending on what they find they might give me one off radiotherapy on my ribs too.

I completely relate to what you say about the impact of this on you and your husband. I also feel mine is waiting for me to fall again, I’m even told to stay in bed if he pops out to Morrisons! Being stuck indoors in this horrible weather doesn’t help much either but one day at a time. Xx

The doctor has told me it's triple minis and it ha gone into my breast bone chest bone. Hard for me to text as I am dislexsit which I don't know how to put the word together. Am in a lot of pain some days worse than others. Don't know what to put very nervous as I should be asking you questions need to learn more about this chat thing.thankyou so much for replying. That made me smile.

Hello there,

I’m so sorry to hear what you’re going through and I think it must be more frightening in many ways going through it single. I’ve found this forum really helpful during difficult times and sometimes it just helps to chat to people with direct experience of this horrible disease and i’m very happy to chat further.

I’m wondering whether you have access to a local Maggies centre at your hospital? I mention this partly as they are excellent at providing support for cancer patients generally but also the secondary breast cancer group I attend there has a lot of women who attend with bone mets, many of whom have been attending for years. I’m hoping this will provide some comfort to you although I know every case is different of course and notice you’ve said your cancer is terminal -  I really hope you have a good treatment plan in place and it can be kept at bay as long as possible. Please feel very free to shout out or ask any questions if you need to. Xx

Hope I am trying to fliberty. Would really like a friend.