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Secondary Breast Cancer Brain Met treatment options

27 REPLIES 27

Re: Secondary Breast Cancer Brain Met treatment options

Hi Lulu,

 

Sorry, I've not been keeping up with the posting and just noticed I hadn't responded to your question on Triple Negative and BRACA 1 testing.  Yes, my Surgeon referred me to Oxford to have the BRACA 1

genetic test, but I was actually negative.  I had also read that Triple Negative was more closely associated to BRACA gene.So at least that's one less thing I have to worry about. 

 

For some strange reason, although my primary BC was TN, and the secondary lymph met is TN, they still do not know if my brain met is TN. I have been chasing the results since my surgery in March. 

 

I was a bit alarmed to read that TN can be the harder BC to treat and it can be more resistive to chemo, so I'm concerned they identify the Brain Met and use the right drug to keep it from recurring.

 

What chemo drugs have you been on that work best for TN ?

 

Thanks

wendy

Re: Secondary Breast Cancer Brain Met treatment options

Hi Wendy

Just seen you also have TNBC too..... Your very similar to mine with lung and lymph node mets.

Do you happen to know if your TNBC is basal like? Most are but mine isnt so think thats maybe why its not responding to normally effective treatment. Im a brca 2 carrier too.

TNBC was pretty much confirmed in lymph node 99% certain - R Hilar node... Unconfirmed in R paratracheal node and unconfirmed in R upped lobe met.

Just wondering but prob not a major in the grand scheme..... But do please stay in touch.

Hi 1954.... Sorry you have to go through more treatment but its so reassuring you have had a year between diagnosis.... Although im certain its been devastating for you having to have to go through this again.

My daughter had special needs and is expecting her first baby in october and i just want to be able to meet my grandchild.

Btw im 45 and just wondered if either you or wendy have had genetic testing as TNBC is more common in BRCA carriers especially those under age 50.

Lulu xx

Re: Secondary Breast Cancer Brain Met treatment options

Thank you so much Mildred, that info was all I wanted. Just to know that you have come through it is enough. I had 6 cycles of docetaxel last year so have recovered from that and been feeling well, hair grown back as well. Prepared for the tiredness. Hope this treatment will zap the invaders.best wishes to you X

Re: Secondary Breast Cancer Brain Met treatment options

Hi 1954
I had WBRT last October - 5 fractions. I had no problems with the treatment. My hair fell out 2 weeks later & I started feeling very tired. It's hard to say how I've been since as I've been on 18 weeks of paclitaxol which comes with its own side effects. I see the oncologist for scan results on 14th April. My cancer is quite widespread so I'm expecting mixed results.
Mildred1602

Re: Secondary Breast Cancer Brain Met treatment options

Hi 1954,

That must be horrible to deal with when you had the one brain met dealt with successfully and then to get

more. Did you have any chemo after the one was dealt with ?   I have only just started researching sterotatic radiotherapy (Gamma Knife/Cyber Knife) for myself and don't know what all the options are, but my brain met was too large for that treatment (4cm). However, I was able to have brain surgery two weeks ago that successfully removed all the tumour. I will however ask for chemo that crosses the brain/blood barrier to ensure any stray cells are destroyed (taking no chances now).

 

I can only suggest you challenge the options given to you and make sure you get a 2nd opinion (which is what I did). I have had some helpful email exchanges with Ian Sabin (Gamma Knife expert) who  may be able to give you his opinion.

 

Or if you want to go down the surgery route, ask for a 2nd opinion of a Neuro Surgeon.

 

Good luck with your decisions and eventual treatment plan.

 

Wendy

x

Re: Secondary Breast Cancer Brain Met treatment options

Hi,1954,so sorry to hear you are joining this site. I'm sorry I have no advice but one of the lovely ladies will be along that can give you some help and advice.
All I can do is send you a huge hug xxxxx

Re: Secondary Breast Cancer Brain Met treatment options

Hi all, I am new to this site. I start WBRT next week and am terrified. Found out last year I had a solitary met that was treated successfully with steriotactic radiotherapy . Now one year later there are 2 more small ones in a different place. Because "more than one"' the option is for WBRT, 5 fractions. I have read nothing that is encouraging about this treatment . Would like to hear from anyone who has been through this and are doing well. Btw, I have triple neg BC diagnosed 5 years ago.

Re: Secondary Breast Cancer Brain Met treatment options

I'm updating my posting in case there are any ladies with brain mets who will find this useful. I have now had brain surgery to remove my brain met (4cm, including a cyst).  The Gamma Knife was unfortunately not suitable as the tumour was too big, however, the 3-hr operation on Friday was very successful, and remarkably I'm already home and feeling absolutely fine, just a bit more tired than normal. The Neuro Surgeon is confident he has removed "all" the tumour, but as I will be on chemo at some point in the near future for the lung met (unconfirmed) and lymph met (confirmed triple neg BC) I am going to ask for a chemo that crosses the brain/blood barrier to ensure any stray cells are zapped !  I am also going to ensure my cancer team discuss other options like the Cyber Knife to sort out the lymph/lung, as I have heard good reports on this treatment option.  So I hope any other ladies here who have brain mets are encouraged by this update, and are not afraid to ask for 2nd opinions as brain surgery could be an option and is definitely a better option in my case than just going with radiotherapy that had no guarantee of stopping the tumour growing or coming back. Wendy

Re: Secondary Breast Cancer Brain Met treatment options

Thanks June ! Wensteed

Re: Secondary Breast Cancer Brain Met treatment options

Thanks June.  PM sent.  Olives

Re: Secondary Breast Cancer Brain Met treatment options

Hello Olives

 

You can send a PM (private message) to any users if you want to, this is dne by clicking on their name and then selecting 'Send a Private Message' on the right of the screen.  You can then exchange email addresses if you wish.

 

Best wishes

June, moderator

Re: Secondary Breast Cancer Brain Met treatment options

Hi Wensteed. I am new to forum as well as only started to post when I had seizure after 16 Feb. It's weird how similar our situation is. Perhaps a moderator could advise how we could email directly without putting our e mail address on the forum for all to see?

Re: Secondary Breast Cancer Brain Met treatment options

Hi Olives,
Yes, I was diagnosed on Feb 13th (2 years almost to the week after the primary breast cancer) after an MRI scan my Oncologist requested when I bought my 6 monthly appointment forward. Otherwise non of my mets would have been identified. I visited my GP "three times" between Nov - Feb and he told me I was depressed and put me on anti-depressants when I told him my symptoms. He should have taken it more seriously with my history of breast cancer. I live in Berkshire, which is a shame as its a bit far to meet up with you. But keeping in touch on this forum has been really helpful to me. I'm seeing NeuroSurgeon today so hope to get a date for surgery asap to get things moving and start on chemo soon after. BTW, although I try to refrain from medication, another GP gave me diazapam, and I take a "very small" dose (half a tablet) a night to help me sleep and a beta blocker in the morning to calm my anxiety. It works wonders to keep me sane 🙂 I'm not sure how the forum works as I'm new to it but if you want to email me outside the forum you are most welcome, just let me know how it works. Wensteedx

Re: Secondary Breast Cancer Brain Met treatment options

Hi Wensteed.  Just to say sorry for any previous typos. Obviously posting at 3.00 am was not such a good idea.  Olives.  Also tumour is in left temporal lobe and they have said could be in hospital for 5 days but won't commit to anything else.

Re: Secondary Breast Cancer Brain Met treatment options

Hi Wensteed.  As you can probably tell from time of message I am not sleeping much at moment!  My tumours 2cm at last scan.  They haven't mentioned chemo wafers but I think I will query when I go in.  They just seem focussed on removing it at present. I presume they will then test and find out exactly what it is.  My primary breast cancer was HER and ER positive so I had herceptin as well as chemo and I think that is why at present they can see no other spread in body as I only finished treatment on 8 January this year.  It was only five weeks later I had seizures collapsed and they found tumour but as I now know the herceptin cannot cross blood brain barrier nor can the chemo I had so I think this is why it grew.  Just wish they had done CT scan on regular basis rather than waited for symptoms.  When I know exactly what it was I will be wanting to consider whether cyberknfe, chemo tablets that can pass to brain in any way, which I have seen on posts here, or re starting herceptin are options.  I think I have to get surgery done first then re discus with oncologist next really but I have done research so 2rr think I am armed with quite a bit of info now.  I am having my treatment at Coventry University Hospital and live about half an hour from the there.  Where are you?  We seem to have been diagnosed around same time in Feb.  I am just hoping my opinion not cancer cancelled for any reason now and want it done. Thinking of you as I know how you are feeling.  Olives

Re: Secondary Breast Cancer Brain Met treatment options

Hello Olives,

 

That's great news they say they can remove all plus a margin ! Must be very reassuring for you. Do you mind me asking how big your brain met is and its location ?  I will be interested to hear if you have radiotherapy or chemo after the surgery. I've heard most chemos don't get into the brain as they can't cross the blood/brain barrier, but there is one that can and I've heard of implants they can leave in the brain that delivery chemo directly. Not sure if any of these have been mentioned to you ?  Did the Neuro Surgeon give you any indication on recovery time after the op ? As I have other mets in my lymph and lung I'm keen to get started on Chemo asap but not sure how long this will be delayed after an op. I wish you all the best with the op next week ! Also, what area are you in the UK ? Wensteed

Re: Secondary Breast Cancer Brain Met treatment options

Hi Wensteed.  I saw Neuro surgeon on Thursday.  He said that he believed he could remove my tumour in total with a small margin as well.  He said he didn't know about any other treatments I might need as he was only involved in the surgery side rather than oncologist side.  The upshot is I am booked in for a craniotomy next Weds.   They will then test tumour and find out exactly what it is and I will then be chasing oncologist to see what else I may need.  To be honest I thought they would want to operate and if this is best option to remove as much as possible then I will go with their advice.  I am not looking forward to it but am quite calm at moment.  Just want it over and done with and see where we go from there.  Hope you are able to come to a decision soon.   Olives.

Re: Secondary Breast Cancer Brain Met treatment options

Hello Olives,

 

I've had a change of treatment option presented to me (just when I had got used to the idea of pursuing the Gamma Knife!).  Now they are offering me brain surgery to remove all?/most of the tumour, followed by radiotherapy.  Apparantely the tumour is now too big (4cm) for the Gamma Knife, but I'm not letting that deter me from asking a gamma knife expert for his opinion.  I see the Neurosurgeon next week to discuss the brain surgery (which is very scary to me) and will keep you posted.  Let me know how you get on and what treatment option you decide. W

Re: Secondary Breast Cancer Brain Met treatment options

Hi Wensteed.  So glad to hear things are moving on for you.  Especially thanks for the link.  I have read it and found it very informative.  I feel in a good place for my apt with Neuro surgeon today and am armed with many questions.  Olives

Re: Secondary Breast Cancer Brain Met treatment options

Hi Olives,

 

I've now been referred by my Oncologist to the Manor Hospital Oxford for discussion on the Gamma Knife. So I hope that they agree they can use it as the more I read about it the more I want it rather than the standard radiotherapy.  I read an interesting article by Mr Ian Sabin - Consultant Neurosurgeon at St Barts that secondary breast cancer + mets with a combination of the right chemo drug and Gamma Knife for the brain met/s has excellent results;

http://www.totalhealth.co.uk/clinical-experts/mr-ian-sabin/when-treatment-gamma-knife%C2%AE-radiosur...

 

I hope to start chemo soon to resolve the lymph and lung, but also want to ensure they use the right chemo drug. I was told my breast cancer type (triple negative) can be quite resistive to certain chemo drugs.

 

I hope this helps and I will let you know more as I find out.

Wensteed

 

 

 

Re: Secondary Breast Cancer Brain Met treatment options

Hi Wensteed. I'm never too sure how to reply to others concerns as each of us is unique. I was diagnosed with secondary bone mets Dec 2011 different treatment options didn't stop progression to bone marrow & some lymph glands in my body. Then in Sept 2013 the cancer spread escalated. I was told it had spread to brain, liver & lungs. My treatment option for the brain was WBRT as the cancer was sitting in the meningeal layer of the brain - so not one solid lump. So I guess one question for your oncologist is what type of brain tumour do you have. This would determine treatment options available to you. I'm now on week 13 of 18 of Paclitaxol chemo to tackle rest of tumours. This chemo also crosses the brain/blood barrier so is also tackling my brain. Mid point scans were positive. The last 6 months have been tough - hair loss, nausea, extreme tiredness, anaemia - but the end of this treatment option is in sight. I have big decisions on what to do next as I've had all the main treatments. I find a little reading of forums, cancer sites etc help me prepare for meeting with oncologist & I always go with a list of questions plus my husband. Thinking of you & good luck with finding the right treatment for you Ingrid

Re: Secondary Breast Cancer Brain Met treatment options

Hi Wensteed. I had two seizures on 16th Feb. They did a ct scan and there it was. I had had no symptoms before and had only finished herceptin on 8th Jan. I find it hard to believe there is a tumour there as I don't feel I'll. I feel like I am waiting ages for someone to recommend treatment but unfortunately I am nhs and was told all the secretaries go home early on Friday so you won't find out till Monday! I have some savings and am wondering if I should look to self fund. Just no idea what to do and worried it is still growing. My kids are 9 and 13 and I really wanted to make 50 for them. I hope you are able to make an informed decision soon. Let me know what you decide as it may assist me with my decision. My friends and family have been brilliant but no one can understand how you feel unless they have experienced the same. I am thinking of you and wishing you the best. Sarah

Re: Secondary Breast Cancer Brain Met treatment options

Hello Olives,

 

I understand completely how difficult the waiting for treatment feels. Since my Brain Met diagnosis in 2nd week in Feb I've been living in a nightmare existence (fear, anguish, confusion).  I desperately want treatment to start asap, but also fear that I won't get the right one if I don't make more informed decisions.  I'm still not entirely sure whether the cyber knife (is this the same as gamma knife?) is a more accurate procedure than targeted radiotherapy.  I just want to know that when they zap the tumour they get it all !   After being told end 2012 I was `all-clear" from breast cancer, its been a real shock to discover that the cancer has now spread to my brain, lung and lymph 😞 so understandably I'm very scepitcal which treatments will be effective or not. Mercifully I have had very little symptoms from the brain tumour (it was a miracle I actually got it diagnosed !) and steriods are keeping it stable. I'm seeing my Oncologist next week to have a face to face discussion to get all the facts between radiotherapy versus cyber knife, and if I'm not satisfied I want to get a second opinion. It appears to me that the fact I have secondary in my lymph and lung has ruled out brain surgery or biopsy on the brain tumour. I hope you are managing ok mentally with all this ... for me its been very hard and I'm only surviving now with the love of friends and family and medication from my GP !

Re: Secondary Breast Cancer Brain Met treatment options

Hi Wensteed

In the last 3 months I have had gamma knife, brain surgery and 10 sessions of WBRT. Out of the three I, personally, would opt for gamma even with the discomfort of having the frame screwed to your head. It is certainly the least invasive of the treatments with minimal side effects.
I had 3 brain mets and fought for funding for many months but was constantly refused and it was only when I had a seizure and they discovered by ct scan that the mets had grown that funding was granted. Sadly, when I went to the Cromwell for this, one met had grown too big but they were able to blast the other two.
Being a rather positive and strong person, I handle my treatments well but, I have to admit, that after the op and WBRT I am finding recovery quite hard and have realised that it is going to take more time for the side effects to diminish than expected.
Push for stereo radio but also ask about Capecitabine/Lapatanib combo which kept my brain mets stable for 8 months and it worked well on my liver mets.
Hope this helps and good luck.
Liz x

Re: Secondary Breast Cancer Brain Met treatment options

Hello Wensteed. I suffered two seizures two weeks ago when they did ct scan and found one lesion in my brain 1.8cm. Have had MRI and full body ct which haven't shown anything else. As a result I was told my case would have to be discussed today by multi team. All sorts of options were referred to by my Onc but the position seems to be a full discussion between all areas is needed to know how best to proceed. Has your case been considered like this do you know? Sorry to hear you have had the same bad news as me. My main issue now is all the waiting around in limbo with no treatment plan.
nicky08
Community Champion

Re: Secondary Breast Cancer Brain Met treatment options

Hi Wensteed
Sorry to hear of your recent diagnosis. Although I don't have brain mets I do have bone and liver mets so do understand to some extent how you must be feeling right now.
There has been a recent post from a user called Olives in the living with SBC part of this forum asking a similar question. I did post on that, but don't understand enough of the treatment options to be of much help. Also another post in the same section from a user called Lemongrove explains a bit more about the funding issues. I will 'bump' both threads up to the top so that they are easy to see and hopefully they will be of use to you as well as someone else coming along to give a bit more info. Good Luck with your treatment and come back on here to get more support or questions answered.
Nicky

Re: Secondary Breast Cancer Brain Met treatment options

Hello Wensteed

 

Welcome to the forums, this must be very difficult for you.  I’m sure other users 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 Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.

 

Best wishes

June, moderator

Secondary Breast Cancer Brain Met treatment options

I've just been diagnosed with secondary breast cancer, with a Brain Met plus a spot on a lymph node and lung. I am concerned that my cancer team are not giving me the best treatment option for the brain met based on availability of the cyber knife and the fact I have secondary. I would like some advice from anyone who has had the cyber knife treatment.  My fear is that I could potentially manage/treat the lymph node/lung with chemo but if they don't give me the best treatment for the brain met it will all be in vain 😞   Please can anyone give me some advice on whether the cyber knife is definitely the better option or if I should accept the normal brain radiotherapy, which they are suggesting. Does it have any side effects/disadvantages or poorer result than the cyber knife ? Thank you.