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Diagnosed at weekend with secondary brain mets

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Re: Diagnosed at weekend with secondary brain mets

Hello Lulu,

 

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).

 

Wendy

x

Re: Diagnosed at weekend with secondary brain mets

Hi wendy (and others)

Can you tell me a bit more about your treatment/diagnosis etc.

Originally i had ER+ bc in right breast in 2006. I was then dx with triple neg bc in the left in 2009. Then had recurrence in left chest muscle in 2011. Followed by a solitary lung met in 2013 and a couple of mediastinal lymph nodes.

Was on a trial of drug called ganetespib which didnt work and tumour grew from 2cm to 3.4cm between oct 13 and jan 14.

I had normal brain ct scan in oct last year before starting the trial.

I had another normal brain ct after developing a severe headache with vomiting and visual disturbances on 31st of jan but was put down to a migraine (previously had migraine but nothing like this) but i am wondering in this was the start of it.

I went on taxotere for the lung met which after 3 cycles was now measuring over 7cm including new satellite lesions and was just reeling from this news when i developed wording searching difficulties last monday. And was diagnosed on wed with brain mets.

Hadnt started new chemo for lung mets yet was due to start this week.

Brain met is a solitary lesion in left frontal lobe measuring 2.7cm. And apparently resectable but think the unstable lung mets is going to be the problem.

The chemo they are suggesting is capecitebine. Which does cross the blood brain barrier so that is good news but we dont know if it will actually work on the ever increasing lung met.

Really just have too many questions at the mo.

Btw we dont have cyber knife or gamma knife here but they can do radiosurgery and stereotatic rads.

Lulu xx

Re: Diagnosed at weekend with secondary brain mets

Hi Wendy

 

To send a private message you can either use the messages tab at the top right of this page (the envelope icon) or you can click on the user's name you are wanting to message and then follow the instructions from there.

 

Take care,

Jo, Moderator

Re: Diagnosed at weekend with secondary brain mets

Sorry, just realised who Sheila is, she recommended the Anne Morgellyn 's blog.

Re: Diagnosed at weekend with secondary brain mets

Hi Daysie,

 

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 ??

 

Wendy

 

 

 

 

 

Re: Diagnosed at weekend with secondary brain mets

Hi Sheila

 

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

Re: Diagnosed at weekend with secondary brain mets

Hello Sheila,
Thank you for reminding me about this blog/lady. I meant to look it up earlier but forgot. Very helpful and inspiring !
Wendy

Re: Diagnosed at weekend with secondary brain mets

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

Re: Diagnosed at weekend with secondary brain mets

Hello Daysie,

 

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

affective.

 

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 ?

 

Keep positive!

Wendy

Re: Diagnosed at weekend with secondary brain mets

Hi Daysie. So sorry you have received this diagnosis and totally understand how you are feeling. As you will have seen from my thread, I was diagnosed with secondary brain tumour after suffering seizures in February and was devastated as I had only finished 18 sessions of herceptin in January and thinking all was fine. The waiting for advice and treatment plan is the worst time. Gamma Knife is a type of targeted radiotherapy. If the tumour cannot be removed by actual surgery then targeted radiotherapy can be used to effectively blast the tumour so that it is destroyed. There is loads of information on line. Sometimes you can also have Cyber a Knife which is similar. The worst time for me was when I first found out I had a tumour and my thoughts are with you. I hope that you will soon have a treatment plan in place. I have had wonderful advice from a Macmillan nurse so might be worth contacting them if no has already put you in touch. Olives

Re: Diagnosed at weekend with secondary brain mets

Hi,daysie,so sorry to hear your news. Sending a smack around the head to your GP and a huge hug to you.
Helen xxxxxxxxx

Re: Diagnosed at weekend with secondary brain mets

Hi Daysie,

 

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.

 

Verity xx

Re: Diagnosed at weekend with secondary brain mets

Hello Daysie what a horrendous story! I'm sorry I can't personally help with your situation as my mets aren't brain but there are ladies on here who can and I'm sure will respond soon. If you feel up to it you may like to look at The Sunday Times reform campaign to tell of your experience, there is a thread on the forum for it. Sending you best wishes and hope you get some good advice soon.
Tracy xx

Re: Diagnosed at weekend with secondary brain mets

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

 

 

 

 

Re: Diagnosed at weekend with secondary brain mets

Difficult question for anyone to answer as everyone's case is different and only your oncology team will have the best answers.
As stated in my earlier posting on here, I have had it all and, through choice, would have just had gamma knife but, for me, to have the best possible chance of living longer I was advised to have WBRT which appears to have had a good result for me. Unfortunately, I am having problems with nausea and sickness which can be a side effect of WBRT but my medical team are working hard to eradicate this.
With regard to lap/cap combo I have been told that I have reached the end of the road with this, but it gave me good results for a year although others, I know, have been on it a lot longer.
Take advice from your medical team, they have your best interests at heart and will advise you accordingly. Yes, I do wish I could have just had the gamma knife but I'm happy knowing I've given myself the best possible outlook.
Hope this helps you. Take care.
Liz x

Re: Diagnosed at weekend with secondary brain mets

Just wanted to update on my progress. Had a craniotomy two weeks ago which went well. They were able to remove all tumour and some surrounding brain tissue. Recovering at home now. I have been told I will need radiotherapy next but there seems to be a big debate over whether this should be whole brain radiotherapy or targeted such as cyber knife. I know there are lots of comments on posts about targeted radiotherapy and wonder if anyone has any advice on what might be best. After this I will have chemo and Lap/Cap has been mentioned which I know others have referred to and something called TDMI. Does anyone know what this is like and whether it passes through blood brain barrier to brain? Everyone on the forum has been so kind and helpful and it made a real difference when I was first diagnosed to have the support so thanks to all.
nicky08
Community Champion

Re: Diagnosed at weekend with secondary brain mets

Hi Olives

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.

Nicky x

Re: Diagnosed at weekend with secondary brain mets

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

nicky08
Community Champion

Re: Diagnosed at weekend with secondary brain mets

Bumping up for Wensteed

Re: Diagnosed at weekend with secondary brain mets

Hi all. Had ct scan and mri yesterday and follow up with Onc. Good news in that ct scan of body shows no spread of cancer to lungs, liver, bones, etc. Also good news in that mri showed no further spread in brain. However all a bit confusing now as Onc says no longer sure mets spread from breast cancer but could be new primary. My own thought is that it is a met from breast cancer rather than a new primary. Apparently they will have to discuss my case on Friday at an Onc Nuerosurgeon meeting to decide how to proceed. Now talk of possible brain biopsy or surgery or gamma knife in Sheffield so back in the waiting room for rest of week. The thought of brain surgery is scaring me a lot and doesn't help just having to wait around at home. All help on here is appreciated. Just also wanted to say I am a bit of a FB negative so don't have an account (although may look at setting one up now) so do appreciate people still posting on here. Thanks, Sarah

Re: Diagnosed at weekend with secondary brain mets

Dear 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.

 

 

Sue XX

nicky08
Community Champion

Re: Diagnosed at weekend with secondary brain mets

Hi Olives, hope the scan goes OK today and you get some idea of what your treatment plan will be. Whatever mets we have I think most of us feel more able to cope once a plan is in place.
Yes, Liz, it was you, of course 😉 But I didn't want to name names, so I hope you don't mind me mentioning your case. Hope you are recovering well from recent procedures, PM me if you want, rather than replying on the open forum. Hope to see you soon.
Nicky x

Re: Diagnosed at weekend with secondary brain mets

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.

Re: Diagnosed at weekend with secondary brain mets

Hi Olives
I think I might be the lady Nicky is talking about as we have met through this forum and meet for a cuppa and chat.
I was diagnosed with brain mets March 2013 and put on Lapatanib/Capecitabine combo which shrunk the brain mets for a while. In the meantime, I was constantly battling for funding for stereotactic radio but having no joy. As I was feeling quite well I did not want WBRT which was being offered to me. In October I suffered a full blown seizure and was hospitalised with the scan showing that the mets had grown and the largest was now 2.5cm. As a result of this I was granted Gamma Knife which was carried out at the Cromwell Hospital in London. Sadly, the larger met had grown too big in volume for this treatment but the other two mets were blasted successfully.
In December I had the tumour removed by operation but even though the surgeon was pretty confident all the tumour had been removed, he couldn't guarantee a recurrence and advised WBRT which I had 10 sessions of in January. I am recovering slowly from it all as it's been a hectic 3 months but my onc has faith in me and is keeping me on the lap/cape combo as it seems to be working elsewhere in the body and I am also regularly monitored with ct scans.
Yes, brain mets are scary but not as bad as it used to be and I often meet with a lady in our hospital who had WBRT 2 years ago and she is still doing ok, which gives me a lot of hope.
If you just have the one brain met, then ask your onc about Lap/Cape combo and push for stereotactic radio as it really is a good treatment and nowhere near as invasive as the other options.
Good luck.
Liz x

nicky08
Community Champion

Re: Diagnosed at weekend with secondary brain mets

Hi Olives

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.

Nicky x

ps apologies to everyone if I've got my info wrong and please correct me!

 

Re: Diagnosed at weekend with secondary brain mets

Hi again, I do wonder if you might be suitable for cyber knife if you have a small number of mets Olives. My understanding is with cyber knife you can be re-zapped as it were in the future but you can only have whole brain rads the one set of how ever many number of treatments are suitable. Very best wishes. X

Re: Diagnosed at weekend with secondary brain mets

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 

Re: Diagnosed at weekend with secondary brain mets

Hi Belinda. Thanks for your response. Have read some of Lemongroves posts. Really hoping things are going well for her at the moment. I am waiting for more test results, MRI and body ct. only finished herceptin five weeks ago and was feeling fine. It is all such a shock. Friends and family are rallying round but just want to fine out what treatment I can get. All the waiting is so difficult. Thanks anyway for post and bumping.

Re: Diagnosed at weekend with secondary brain mets

What a shock for you Olives. There is a lady called Lemongrove who has experience but I haven't seen her here for a while. Have you looked at the option of having cyber knife? I am not an expert but if you have one met it might be an option. I will try and find some of Lemongrove's posts for you, will bump them up for you. Do give BCC a ring too. My very best wishes. X

Re: Diagnosed at weekend with secondary brain mets

Hello Olives

 

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.

 

Best wishes

June, moderator

Diagnosed at weekend with secondary brain mets

Diagnosed with primary breast cancer 18 months ago. Had surgery, chemo, herceptin. Just getting back to normal then had seizure at weekend. CT scan has shown 1.8cm lesion in temporal lobe. Have MRI tomorrow and all over CT scan Monday and apt with Onc. Just in shock and scared going to die. I am 45 and have two kids 14 and 10. Partner is being supportive as poss. Just wondered if anyone out there can give advice or any positive info?