After a terrible beginning of the year last year mets fractured my spine and I was in agony. By March I was told I had cancer in my spine liver and lungs and a 2cm head lesion. I was 36 and thought I’d beaten it 
my CA markers were 155 and I’d lost weight. After surgery and chemo I felt better and my cancer was reduced significantly. My tumour markers went down to 24 with herceptin and its sister drug and 7 docetaxel. I felt good. From June until new year I’ve been travelling the world. I put cancer out my mind-and then New Year’s Day I had a terrible headache which didn’t go away and I just knew… MRI yesterday shows 3 tiny new lesions grown in 9 months and the bigger lesion has grown to 4cm causing me headaches. I spent all day yesterday crying at the awfulness and unfairness of this disease. They presume I’m still stable in rest of my body but unfortunately due to brain blood barrier treatment hasn’t been getting to my brain so they are saying wbr, and possibly surgery which I’m pushing for as I want it out. The big one is in the back of my head I can’t remember the name but I’m scared and I keep thinking the worst. Is there anyone out there who had brain mets who can advise? I want good news and positive stories as I can’t take any more bad news. Third time I’ll be losing my hair I have five months regrowth it’s a shame.
Love to all ladies fighting xx
Hi Carolina,
so sorry to hear your news, what a shock for you. I havent been diagnosed with brain mets, but there are ladies on here whohave them and im sure they will respond soon.
i do understand the fear and it all keeps going round and round in your mind doesnt it?
have you tried Headspace? Its an online meditation programme that I find really helpful in dealing with unpleasant thoughts…
please keep posting and let us know how you get on. I had a friend who has done ever so well after removal of a brain tumour…they are very clever now and pretty precise these days. Love and hugsxxc
Moijan???
Thanks for replying. They’ve told me today the oncologist won’t recommend operating as its too deep apparently I’m distraught. I’m seeking second opinions In uk and America. They are offering me brain radio with the option to review it again after that.
Hi Carolina, I see you popped into the brain mets thread…and there wasnt a lot gong on…sorry about that.
i am able to identify with you…I guess brain mets are pretty scary because we use our brains to deal with all the fears etc. Was thinkng about things you could try on here…you could email Lizzy one of the forum staff, or email one of the nurses for ideas. Have you telephoned the number up top? Its usually open tomorrow morning…they are very good, have rung them myself over the years…
there is also a thread…‘.meeting someone like me’ that might be useful…
I will keep exploring a bit for you, I will also keep popping in to see how you get on, so check back occasionally.xxx
Moijanxx???
Hi! Yes I do in London X
Carolina, Judiman posted in November talking about seeking( on the living with secondary breast cancer bit, ie this section but not treatments) ‘whole brain radiotherapy’
she seems to have brain mets, I sent her a pm, you could try that.
if you live in london, you have ( as im sure you are aware) lots of top hospitals to get advice from on this…
am sure Royal Marsden might be able to point you somewhere…or are you under them already?
Moijanx
Best of luck with all that…I discovered that the pals nurses at Royal Marsden are very helpful when you call them with queries…they are all oncologically trained nurses and know whats what.
love and hugs
Moijanxx???
yeah I’m under the marsden X thanks for all your info and advice. Really nice of you moijan. I’m seeing a private neuro surgeon in London on Tuesday so will update then xx
Hi Carolina,
excellent choicexx I know you must be feeling fed upxx
keep posting on here, others will pop in with ideas and they may know people in your situationxx
Moijanxx
Have private message youxx
Yes, you do sound very strong Carolina, have pmd you my history which is different from yours, but one thing I have found really helps is to try and do small projects/things which give me a sense of control…of course none of us can control everything in our lives, but the little things I try to achieve do distract me a little.
i too get scared sometimes and these other things help me to manage the mind chatter we all get.
have you got a partner to support you, or other family? Anyway, you DO have us all here, we are a family and are all here for you. It does sound as if you are quite organised re your medical consults, as Charys saidxx
Do keep posting, much love and hugsxx
Moijanxx???
Hello Carolina
I’d just like to welcome you here and hope that one of our kind ladies replies to you with some help and advice.
In the meantime , maybe you would like to join our private forum where we have games, gardening clubs , book club etc which might just give you another focus at this horrible time.
Hugs Carolyn xxx
Hi Carolina
So sorry to read your thread and I didn’t want to pass by. Your fears are understandable and I hope you are getting emotional support from friends and family around you. This is a wonderful supportive forum, where we can express fears we don’t want to share with others and having Moijan’s and Charys’ support is invaluable. I am not affected by mets personally but have friends for whom treatment was possible even though it was not initially indicated, so I am holding hope for you. On a practical note. There is a charity called Headway, which I believe is national and who provide practical and emotional support, although you maybe able to access this through your BCN or local Macmillan.
Your strength of character is clear from your writing. Sending much love xx
Hi Carolina, you are in our thoughtsxx
Http//www.bupacromwellhospital.com/services-and-specialties/gamma-knife-surgery
let us know how it goes tomorrowx
Moijanxx
Hi all!
I’m ok. Headaches are a little annoying but steroids keeping them away mostly.
I have an appointment tomorrow with one of the top neurosurgeons so gonna see what he says. They’ve brought my CT scan forward to Thursday which is good. I’m hopeful the rest of the body is stable! I’ve done a lot of research and think I’d prefer to have cyber or gamma knife. They’ve offered me WBR first but I notice this is the cheapest option and not necessarily the best option with possible dangerous side effects. Anyway I’m going to fight for what I want even if I have to pay for it. Xx
Hi Carolina… and all of you lovely ladies,
I’ve been reading threads on here since my primary diagnosis Dec 2013 (HER2+ ER+) & having been through chemo & radiotherapy, I thought I’d beat this horrid disease. I’m hardly come on here now but just popped on & saw this thread so felt it’s time to finally register.
Unfortunately, in Oct 2015 I found out it metastasised to my brain - a 1.5 to 2cm lesion on the left frontal & a tiny spot at the back right side. Another tiny spot appeared in Jan 2016. Rest of body has been NED ever since but more scans are scheduled for Feb so naturally I’m anxious.
Carolina, I hope you’re able to read this before your appointment. If not, just want to let you know I had CyberKnife which seems to have been successful… so far (fingers crossed it continues). What I should make clear is that I didn’t get headaches. I had numbness in my right arm but it didn’t hinder my daily routine so for months I was advised, & I believed, it was a trapped nerve! I don’t know if this will make a difference to the treatment that can be offered. Prior to CyberKnife, I had surgery to remove the larger tumour but that resulted in me COMPLETELY losing the use of my right arm & seizures. Seizures have not reoccurred thank goodness & I’ve since managed to regain most of my arm’s functionality… still getting physio for it though & it gets extremely tired. I’m also back on targeted chemo. When it comes to brain mets, I totally understand what you must be going through emotionally. It’s scary! However, I have met ladies with brain mets who’ve provided me with very encouraging stories - some had CyberKnife, some WBR. One lady in particular told me she had mets to bones, spine & brain & now her cancer seems to be under control, albeit it took a while to adjust to her new normal. I suppose we’ve all had to do that.
What I found difficult was trying to find MBC sufferers with brain mets but have found a website that has been useful to me. It’s impossible to avoid the occasional bad news story but there are ladies (& a few men) from all over the world on there & many have information I knew nothing about. Hope it proves useful to you too. Will private message it to you once I learn how to do it. ?
I hope your appointment goes as well as can be & you get the answers & options you wish for. Also hope somebody goes with you. Will check in later in the week to see how you’re doing.
THERE IS HOPE!
Much love Carolina & to all the ladies on here. You all really are very supportive.
Lissa xxx
PS. Apologies for such a long post.
Lissa, I can’t thank you enough for your post ( and I’m not even the person starting the thread lol). We have tried so hard to find people with brain met experience, unsuccessfully…and then you arrived seemingly from out of nowhere. I have started to realise that we are all very good at listening to and supporting the ‘easier’ (!!!) aspects of a cancer diagnosis , but find it very hard when it comes to the more unusual possibilities. You know…even I feel more full of hope after reading your post, as how could you not after such incredible positivity and courage…and I’m so so glad to hear your treatment has been so successful. Much love xx Maybe THIS very thread could become our brain mets meeting place for the future ?
Yes Lissa, God Bless You, for joining us, you will see that there have only been a few of us on this thread!
you, too, will have been through so much and so recently too, you sound very bravexx
from what you have said, there has been some success with treaments for Brain Mets and im sure this will be some comfort and encouragement for Carolina, who must have felt pretty scared and alone.
please, please keep in touch with us, there must be others like yourself…and …there but for the grace of God…we have been fortunate so far, brain mets could happen to many of us.
Carolina, I have also messaged you and I seen you have read some of my messages…please note the latest one…I really hope things go well for you today…come back and update usxxx
Moijan???
Lissa,
have just checked your messaging…the moderators will need to activate yours for you…here is a copy/paste which was posted elsewhere on the site…hope this helps
…
Options
18-11-2015 03:34 PM
Hi All,
Just a quick reminder that we do have a private message tool on the website.
In order to private message you need to click the envelope icon in the top right hand corner of the screen on the forum page.
You then have the option to create a new message to another user by selecting the ‘compose a message’ tab.
If you are a very new user you may not be able to see the envelope icon in the top right hand corner of the screen. This may be because we wait for users to post their first initial post before allowing the private messages option in order to avoid spam messages.
If you have experienced problems or have any queries, please email moderator@breastcancercare
…
see abovexx
Moijan???
Hi Charys & Moijan. You’re welcome and thank you. I contacted the moderator & she’s advised I can post private messages once authorised & activated so it may take a few days. I had a difficult time finding anybody with brain mets which is frustrating. MBC can be a lonely disease as it is & when I looked at the thread on here, it seemed to dry up with very little specific information provided. Nobody’s fault, of course, but any info is valuable especially when the rug’s just been pulled from beneath your feet. Honestly, it’s taken me this long to regain some sort of structure in my life because making life altering decisions, getting used to the various treatments & their side effects, general fatigue, no longer being able to drive & traipsing back & forth to what I now refer to as ‘my second home’, i.e. The Hospital, takes its toll. I’m certain this resonates with many whatever kind of mets you have. I know there are many who are in a much worse position than I am.
Despite that, I’m soooo lucky because my support is terrific. My mother, sister & her family & a few close friends literally take over when I need them to. I also sing (badly ?) & love my jazz so I try to incorporate that into my life when possible. Emotional therapy!
Thinking of you today Carolina. Hope the appointment is productive. Let us know.
Hope everyone else is doing well. Lissa xxx