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 ?
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.
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
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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
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.
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
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
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.
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
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
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;
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.
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 !
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.
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.