Advice brain mets

Hi I’m just looking for advice and information, I’m writing from hospital and on my phone so might take a while! Basically was diagnosed with primary breast cancer 6/6/12 aged 26. Started chemo (3xFEC and 3xdosetaxol), mx with temporary skin sparing implant and ANC 6/12/6. Started primary radiotherapy 18/2/13-Mother’s Day weekend had a bad weekend, got admitted 12/3 with sickness and head ache and dizziness. Kept in overnight, diagnosed with 2 small brain mets the next day With ct. still waiting on a body scan to see about the rest of me (no other symptoms but there’s a debate about the small port I have they used to inflate implant and If it’s safe to scan). Anyways was released, had a MRI, met the radiotherapy head man (I’m from Glasgow), agreed to steriotatic radiosurgery coz there’s 2 and small and think they can be treated at a curative dose. Easter weekend I took terribly unwell again, had to have emergency GP out, anti sickness drugs, really bad vertigo and dizziness, started treatment last tue (3rd) and I’m now having 5 sessions not just 1 because in 3 short weeks they’ve grown almost most double in size- 1.3cm and 2.5cm to 2.5 and 3.1 which is obviously terrible. I thought I was coping with the whole secondary thing and it all happening so quickly and no symptoms and I know all the chat but I thought maybe this would buy me just 5mins of normality but now as much as the symptoms are a million times better I’ve still got the vertigo, I’ve been in hopital for a week, does anyone have any encouraging advice or tips or stories that maybe is one symptoms night get better. Also as this is not going to kill them, best case senecio is they reduce them- what’s next? There’s so much info I’m sorry I can’t remember the name of the chemos that break the blood brain barrier? See if they can buy me some time.
thanks guys, I’d really appreciate it.

Hi Laurable

It sounds as though you are having a tough time at the moment, I am sure your fellow users will be along soon and in addition please feel free to call our helpliners to talk through any concerns on 0808 800 6000, lines are open 9-5 during the week and 10-2 Saturdays

Take care


Sending love Laura. X I’m 31 and in a very similar situation so really just wanted to tell you that you are not alone. I’m going to watch this thread carefully as many of your questions I would like to find answers to too.

Other users on here know much more than I do so I am not going to try to add much more yet but there are new treatments everyday and even though this is scary the doctors are ace And you and i will have more time. I know whole brain radiation is a treatment option too so maybe talk to your doctors about that but from my understanding the stereotactic radiotherapy you’re having now is top dollar. X
Feel free to pm me if you wish. Joanna. X

Hello lauralable. I’m so sorry to read about your situation. It’s especially awful that you’re so young. To answer some of your questions it would be helpful if you could say what type of stereotactic RT you are having, and what your cancer is receptive to (i.e, is it ER+ or Her2+).
The thing about stereotactic RT is that it is so precise, it spares healthy tissue. As a result it can be used at a much higher dose than conventional RT (potentially at a curative dose). If you would like a bit more info about stereotacic RT, and patients who have benfitted from it you can go to:
It’s understandable that you are concerned treatment has not eradicated your symptoms, but please remember it takes a while for RT to reduce mets. People wrongly believe that RT burns the mets, and therefore has an instantaneous effect. In fact, RT works by disrupting the DNA of a cancer cell so that when it tries to reproduce it can’t, so it then shrivels and dies. Consequently it will take a while before things resolve.
I had a type of stereotactic RT for skull mets called Cyberknife back in October 2010, and those mets have never come back. Unfortunately, I now have 5 small brain mets, and will probably be having stereotactic again in the near future. My cancer is Her2 receptive, so at the moment I’m taking a drug combination called Lapatanib and Capecitabine, which seems to be keeping things under control (Lapatanib is one of the drugs that can cross the blood brain barrier).
I know you must feel very sad, and worried at the moment, but your secondaries have been caught early, so with high dose stereotactic RT, and a good drug regime, you stand a good chance of dealing with this episode. The fact isthough that you do have secondary cancer and there is always the chance it will go somewhere else, but you can and will deal with it, like many others on this forum (many of whom have been dealing with cancer for many years).
Good luck with your treatment and let us know how you go.

Thanks Lemongrove, my Inital diagnosis was TNBC, 4.7cm, SNB showed 1/3 positive nodes so had the ANC which was 0/12 positive. It was just the most common, like inductal type, CT/bone scan and heart scans when firsf dianosised all clear. I’m not exactly sure what type I’m having, that sound terrible but I’d done a bit of reading and knew about the gammaknife type/different types, so I thought they were all Good. im seeing dr Allan James at the beatson in Glasgow, he seems to know how stuff so I was panicked when the plan went from 1 big dose to 5 big doses. I’m not worried or scared about treatment, I’ve had 4 so far with the 5th tomorrow. Symptoms are def better but he seemed to think by tomorrow I’d have a better idea about what they’re dealing with but yes ur right it will also take time to work, I think because I was so steady then it went back down hill it’s hard :frowning: I’m on so many steroids that my weakness in muscle is shocking and trying to arrange going home ect as I live alone. I know the TN isnt great in terms of treatments but I’m sure they’re also still chemos I haven’t had yet that could work. I’m dealing with the secondary diagnosis as best I can, ur totally right about if it is somewhere else ill just deal with that when and where I need To. Thanks Lemongrove x

Hi Lauralable
Just wanted to send you my best wishes and hope that your treatment continues to work for you.
I was diagnosed with brain mets last month and I am currently on cape/lap combo. Radio has been put on hold at the moment as my quality of life is ok but I am being monitored with ct scans and radio will be considered when there is progression. I am actually following in Lemongrove’s footsteps with regard to treatment and Lemongrove has comforted me with her wise words and vast knowledge.
Sending you cyber ((((hugs)))) Lauralable.
Liz x

Hi Lauralable, just wanted to let you know I was thinking of you,I posted a couple of times on starting chemo July 2012 thread. Sending you a big cyber hug, Vicky xx

Hi Lauralable.
A short note to say I think of you and I hope everything goes well. Big hugs girl.Stay positive!
x x x