I'm so sorry to hear about your various mets and it must be very difficult now dealing with the brain met on top of that.
I was diagnosed with primary TN BC in my right breast in Feb 2012. After chemo, lumpectomy and radiotherapy I was given the all clear by end of November 2012. During 2013 I felt fine and had two clear mammograms. However, just before the end of 2013 I started to have memory and coordination issues and by Feb I started noticing a weakness on my left side and space/time awareness difficulties. After bringing forward my Oncologist appointment to Feb 2013 I had a Brain MRI scan which confirmed I had a 3cm tumour in the front right side of my brain.
I was immediately given a full body CT scan which indicated an enlarged lymph in my right breast and a small shadow on my left lung. A biopsy of the lymph confirmed the triple negative cancer had returned but no biopsy has been possible on the lung so this remains unconfirmed at this point.
Originally my cancer team were not considering brain surgery. They wanted to deal with my lung and lymph node mets first. However, I was not happy with the suggestion of radiotherapy on the brain and requested a second opinion. It was then I was referred to the John Radcliffe in Oxford and it was agreed my tumour was removable with little side effects. The surgery was 3 hours, and I was back to normal (eating, drinking, talking, texting etc) within an hour of returning from recovery and out of the hospital by the 4th day.
Last week I started a tablet form of chemo drug vinorelbine which is targeting the lymph and lung mets. A full body CT scan last week showed they had both reduced in size slightly (before chemo) which the Oncologist believes is due to the steriods. However, after alot of research I've been taking some supplements and doing vegetable juicing daily, so I'm not sure if this has been a contributory factor too ?
I hope you can find the right treatment for you. It is a difficult thing to digest all the options, and to be confident that its the right one, but all I can say is that the more you learn and research and the more you are armed with information, the easier the decision becomes. And also, do not be reluctant to question anything you feel is not right for you.
Good luck and take care of your body from now on and try to be positive and relaxed as possible (easy to say).
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I'm happy to PM you but have forgotten how to do it. Perhaps if you send me a PM and we can go from there ? BTW, not sure who Sheila is ...couldn't find anyone by that name in this thread. But I can understand the brain fog, especially on steriods. I find the hunger and putting on weight the worst, but I'm on a smaller dose than normal so I'm not getting the wobbles etc. Just seem a bit more "hyper" and talk alot, which drives my hubby mad 🙂
My steriods are being reduced now, very small dose every other day. I have none of the previous symptoms since the brain surgery (arm weakness).
What was the reason they didn't offer you surgery ?
I've since seen my Oncologist and he isn't suggesting radiotherapy as all the tumour was extracted, but starting me on the tablet form of chemo drug Vinorelbine (which also goes through the blood/brain barrier, just in case of any stray cells). I start on Thursday this week.
Its amazing to hear that brain mets are common from breast cancer and yet no scans were offered to
me after my primary breast cancer in 2012 when I was supposedly cleared of cancer ??
Many thanks for your reply, i hope are doing well now? I was disgnosed with Triple Neg BC in Oct 2011 had chemo then right mastectomy was told all went very well then wham sucker punched wth a BC Met brain tumour last week head pains and right sided weakness, incredibly tire and wobbley, no on steroids yuk! I had my Radiotherapy Planning Session with my Consultant this morning and the senior radiographers who said it is fairlt commom for mets to go to brain from the BC, and will be He said Tumour doesn't have a name as it is a Breast Cancel Met, that's probably travelled there through my bloods veins. My blood tests I had last week were fine so I had a moulded lattice mask like a fencing mask made this morning to keep my head screwed to table and so i couldnt move and keep still during treatment it only took 3 mins to make and not too difficult to endure the hardest thing to face was seeing my CT scan photos from last week I saw the swelling area and light shaded area when 'tumour' the consultant referred to it as a 'Met' the whole area has probably reduced down now as headaches seem to have gone still walking like p****d though i've now just got the wobbles and lightheadedness from extreme exhaustion I think, the steroids doseage will reduce gradually when treatment starts. does any of this sound familiar? x x hows everybody doing? x x beautiful warm sunny day in Norwich can smell blossom in the garden lovely! x i have met lots of lovelt ladies from the bcc forum as we started chemo journey back in Nov 2011 many of them now on FB in private group called Calendar Girls and Chat Girls.......excuse me if i'm posting twice! as bit slow at the moment......confusion fog lol take care let me know how you are please? i also got privat email - pm me for details, its quite tiring reading and answering hundreds of well wishers isn't i hope people unerand not normal self during this.........i think my left fingers coming back yeayyyy 🐵 x
Hi everyone, I don't know if anyone has read Anne Morgellyn 's blog regarding her diagnosis of secondary breast cancer in 2005. It is very inspiring and she is a wonderful lady. If you put her name in search you will see her post in " Huffington Post ".. For those of you needing treatment for brain Mets her words will give you strength to carry on I am sure. Love Sheila xx
Don't lose hope ! I was diagnosed with a similar brain met from BC (which I had in 2012) in Feb 2014 and I have just had a very successful brain operation to remove it two weeks ago. I presented the exact same symptoms as you, weakness in left arm, driving to the left, dropping things, uncoordinated, clumsy etc. I went to my GP "three" times (unbelievebly they diagnosed depression) with one of them telling me a brain tumour would be "very unlikely" (idiot). Luckily I had an understanding Employer and I took a week off and decided to see my Oncologist. Immediately he arranged an urgent brain MRI scan and hey presto there was 4 cm tumour on the front right side of my brain.
Initially my cancer team ruled out a brain operation, as I had other mets (lymph and lung), as they felt it was unnecessary to put me through a brain operation. But I disagreed and didn't want the radiotherapy
option as I had heard that once you have a certain dose, you cannot have another dose in the same area again. You don't mention other mets other the brain, but I would suggest you ask for a second
opinion (which is what I did). My Oncologist then referred me to a lovely Neuro Surgeon at John Radcliffe, Oxford and I had a 3 hour brain operation on 21st March. He removed "all" of of the tumour and I was out of the hospital by the 4th day and been perfectly ok since.
I now have to have a discussion with my Oncologist about the next treatment for the lymph/lung mets, but
I am definitely armed with lots of research and questions to ensure whatever chemo they give me
crosses the brain/blood barrier just to make extra sure there are no stray cells left. If they suggest radiotherapy for the brain I have researched the Gamma Knife as an alternative (if) it should return. I also have a good contact for that too.
I have also researched the Cyber Knife for the lymph/lung if necessary at a later date if chemo is not
Keep positive, do some research and you will find being more in control of your treatments will help you get through this. And from what you say you have a very similar brain met to me and therefore you could
have a good prognosis for a brain operation should you decide to go down that route.
Good luck and I'm happy to pass on anything else you need to help you make a decision. BTW, what
type of BC did you have initially ?
I have not logged onto this site for a long time, but decided to have another look this evening. I see that you ahev just posted.
I am so sorry to read your post. I can imagine, I think, how you might well be feeling. I cannot add anything as this is outside of my experience, but I just wanted to say "Hi" and wish you well while someone else comes along who can be of help to you. It does seem, from the earlier posts on here as though people have had good results with modern treatments. Hopefully someone knowledgeable will ocme along very soon.
Wishing you all the very best.
I was diagnosed yesterday with brain mets prob from my bc in 2011...terrified....back in the dark waiting room prob having radio therapy will get plan and appts at Norfolk &Norwich University Hospital next week what's a gamma/cyber knife? have large mass at right front of forehead with swelling presented with bad headaches and weakness onleft side was clumsy kept dropping things left fingers co-ord not good - desperate for advice so frightened :o( xx My GP diagnosed me with Anxiety in Feb but i was rushed by 999 by my work manager a couple of days ago and ct scan showed mass where i had pointed headache out to my GP he said don't be ridiculous you haven't got a brain tumour! grrrr i knew it and he was clueless delayed by 2 months still leaning to the left a bit drunk they should have done full scan after breast cancer treatment ended wish i had insisted or even paid for one x
Sorry I cant help with this one but maybe you could speak to your BCN or even your consultants secretary to see what the timescales of getting a consultation with the neuro surgeon are and how this affects your overall treatment plan? Hoping it all gets sorted quickly so you can get the ball rolling.
Hi. Just wanted to say they have decided to refer me to a Neuro surgeon who I am to see tomorrow. I am now starting to get concerned about time scales as it will be three weeks since my seizure soon. Does anyone have any info about how long it should take to get treatment plans under NHS. I am unfortunately not covered by private but surely in serious cases this should not affect how well I am treated. Just starting to have a bit of a panic about it all and wondering how quickly things could be growing up there. Any info would be appreciated. Olives
So sorry to hear of your brain mets diagnosis. You may want to check out the blog of Anne Morgellyn called the Topic of Cancer. She was treated for a brain met over 4 years ago. Wishing you all the very best.
Hi. Thanks for all info. I have another full body CT scan today and see Onc again. It is good to hear about people who are still around a year plus after diagnosis, gives me some hope. It's just such a shock when you have only just finished treatment and feeling fine and then have a seizure. I just wanted to be around for my kids for a few more years. So glad you are doing ok and finally got your choice of treatment. Will update when have more info.
So sorry to hear about your diagnosis of brain mets, a very scary time I'm sure for you and your family. I just wanted to add to what has been said already, and written previously by Lemongrove. I'm not sure if cyberknife is now funded for brain mets but I could be wrong and I don't know enough about the various treatments (so I could get things wrong here) but I do know you can get stereotactic radiotherapy for them as well as whole brain radio therapy (WBRT) I know of a lady who I have met via this forum who has had both, stereotactic for some smaller mets and also WBRT afterwards when this treatment wasn't suitable for a larger met. Also, Lapatinib is a HER+ treatment (tablet) that does get to the brain whereas Herceptin doesn't. I'm sorry that I don't know more and can't really help but it may be worth researching these two avenues to be able to ask your oncology team about. Good luck with your treatment.
ps apologies to everyone if I've got my info wrong and please correct me!
Olives I have no personal experience of brain mets....but over the last few weeks I have come into contact with 2 ladies discussing their brain mets. One had brain mets diagnosed following a fit about 15months ago...had whole brain radiotherapy and was on chemotherapy........she spoke about getting her driving licence back and her guilt about commuting weekly (by train and through London)to the other side of the country to provide childcare for her daughters children(she wanted to reduce her commitment! ). The other lady was at a secondary BCC day. Again she was more than a year on from her brain met diagnosis. She had had cyberknife treatment and was on chemotherapy....again one of her concerns was getting her driving licence back......More and more people are surviving longer with brain mets...it appears that it is not the death sentence it once was...good luck.xx
Welcome to the forums, this must be a very difficult time for you but you have come to the right place for support from our experienced users who I’m sure will be along to support you soon.
In the meantime maybe you would like to talk things through with a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open again in the morning and normal hours are Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.