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Radiotherapy for breast cancer brain mets - worried

Jane2013
Member

Re: Radiotherapy for breast cancer brain mets - worried

P.S. I was also told that injections via the spinal column (to get pat the blood brain barrier) were not appropraite in my case as my mets where intracerebral as apposed to intra-cranial I think it is (I am also doing more academic reading as well as chatting to you) and I wold also suffer hair loss with gamma knife - it would just be in patches rather than all over
Best
J
Jane2013
Member

Re: Radiotherapy for breast cancer brain mets - worried

Thanks Lemongrove, you are being a real help on info.
As I said - I have delayed for a week and my nurse agreed today about getting me further info as to why they think WBRT is a better option for me than a chemical solution at this stage. I know they have to apply for funding for gamma knife so I presume there will be a delay if I opt for that. (Should check of course).
I know a big part of their reasoning is that as we know I have eight small tumours already a WBRT blast will arrest these and anything forming but yet too small to see and it does seem that they are multiplying quite quickly so there are likely to be some undetectable tumours - but they have also said (as you have) that this will not necessarily prevent new tumours forming after that and I may need a second blast.
I suppose what I am worried about is time running out and the quicker these eight are stopped the better. They seem to think any cognitive impairment would be tiny and that stats do not really support that it is WBRT (instead of aging or the affects of the tumours) that causes this impairment i.e. there is a correlation but not necessarily a cause and effect relationship.
If you have read up a lot on this (and it is not too much of an inconvenience as you have helped me so much already). Do you know of WBRT cognitive impairment being significant and whether symptoms abate when the tumour is arrested?
There is a bit of me thinking - better keep these eight as small as possible rather than let them grow and treat them when they are causing symptoms. If they will remain the same size in the brain (and just stop growing as opposed to shrinking) and symptoms relate to size (like headaches and nausea) then the longer I leave it the worse the symptoms I will have to live with on a daily basis will be. Or am I getting it wrong and it is the act of the tumour growing rather than size that causes symptoms?
I am sure there are lots of angles that you are aware of that I haven't even thought of so any advice is gratefully received.
Lots of good wishes and thanks again
Jane 2013
Lemongrove
Member

Re: Radiotherapy for breast cancer brain mets - worried

Jane even if you have diffuse mets you can still have stereotactic rads. It's true that docs don't usually treat more than three mets in one go, but if a patient has more than three mets, they just give them another cycle of treatment.
Similarly, the fact that you might have some hidden brain mets that could pop up later doesn't really matter, because your docs could just treat them with stereotactic as and when they arise.

Really only you can weigh-up whether it is best for you to have WBRT first or stereotactic first. But there are a couple of points you might like to consider. (1) Just because WBRT treats the whole brain, there is no guarantee that your mets will not regrow. That's why your doc mentioned possibly offering you stereotactic. at a later date after WBRT. (2) WBRT carries the risk of unpleasant side effects (brain swelling, steroid induced weight gain, cognitive impairment, hair loss), whereas stereotactic has very few SE's. Consequently, if you delay the point that you have WBRT you will also delay the associated SE's.

I have 5 brain mets, and this is my approach to treatment> I am currently taking the Lapatanib and Capecitabine combo (my doc had to apply for funding approval for Lap, but there was no problem getting it, and it was available within two weeks). My docs are also carrying out regulare MRI's to monitor things, because I am not prepared to rely on Lap/Cap alone. If it appears the mets are not responding to Lap/Cap, I will then have stereotactic rads (Linac rather than Gamma-knife, because Charing Cross Hospital have it already, and it will save having to be referred to the Cromwel, and applying for fundingl). I have no qualms about having stereotactic RT, because I have already had Cyberknife stereotactic RT for skull mets in Oct 2010, so know how well it works. If more mets pop-up after I have had Linac, I will then have more stereotactic RT. Obviously if the mets appear to be spreading quicky, or becoming too big for stereotactic, I will then have WBRT - but again having more stereotactic if things regrow.

Jane2013
Member

Re: Radiotherapy for breast cancer brain mets - worried

Sorry - I know I should be using the term WBRT. I am not sure if 3N3's lady friend had this as opposed to gamma-knife? would be nice to know - especially if she has not noticed any appreciable deterioration in her cognition in this time.
Many thanks

Jane 2013
Jane2013
Member

Re: Radiotherapy for breast cancer brain mets - worried

Thanks again for everyone's responses.
I would very much like to hear from anyone who has had all over brain radiotherapy about loss of hair but more importantly, loss of cognition i.e. how severe it was and how they dealt with it etc.
I was shocked to be told at the radiotherapy pre-meeting that 50% of people notice an impairment who have this all over treatment (and it was aknowledged that gamma-knife cuts this risk down completely as nothing but the tumour is targeted) - but I can aslo see that in my case - with small but numerous tumours it could be the best option. The registrar said he had looked for stats (as I had phoned ahead and asked for them) on cognition, but said it was very difficult to assess the impact as tumour growth impacts on cognition as well. He did think that the effects would be small - a bit of short term memory loss and possibly noticeable slower thinking but nothing major.
The 5 brain mets in November have doubled in size in two months, and an additional 3 have formed as of scans a few weeks ago - so I now have 8 in all.
All over brain has been recommended because of this number and the probability there are other little blighters too small to see about to make an appearance. Gamma - knife is also proposed as well for anything that isn't knocked out by the first round of all over.
I had a detailed conversation with the radiotherapy unit on Friday who wanted to go ahead with treatment from this Monday. I put the brakes on for a week - as I hadn't had detail up until that point and wanted to check with people who had direct experience of this treatment first.
I am also asking to see the chemo dept on Wed when I have herceptin to discuss the options you proposed Lemongrove - as this hasn't been discussed in detail yet - but radio seems to have been favoured as first line of attack.
Thanks once again everyone.
Due to the number of tumours I will probably take the risk - but it would be nice to know that any loss of mental performance is far outweighed by the benefits of preventing deterioration in cognition through tumour growth.
Best

Jane 2013
Lemongrove
Member

Re: Radiotherapy for breast cancer brain mets - worried

Just bumping for this lady. Is there anyone else who can add something. Where is Alesta these days? Think she had WBRT recently.

Lemongrove
Member

Re: Radiotherapy for breast cancer brain mets - worried

3network3, yes I also know someone who has been living with brain mets for 3 years ( I met her at Charing Cross Hospital yesterday). She has had the lapatanib and Capecitabine combination, and then had stereotactic radiotherapy ( Linac instead of Gamma-knife). It has not as yet been necessary for her to have whole brain RT).

3network3
Member

Re: Radiotherapy for breast cancer brain mets - worried

Jane, I know of a lady I visit regularly who has secondary breats cancer to the brain (and lungs and bones), which was diagnosed three years ago! She had to give up her driving licence because of the brain mets, she had radiotherapy for them with no lasting ill effect. Her brain mets totally disappeared and last year she got her driving licence back again!!! She is also on Herceptin by the way. Very intersting to read about the combo Lemongrove is speaking of! I will tell her of this next time I see her.

Best wishes and hugs,

3N3 xx

Jane2013
Member

Re: Radiotherapy for breast cancer brain mets - worried

Hi Lemongrove - I sent a pm back to you too (there seems to be no "sent items" on this site so I hope it got there). Thanks very much. Your info has been really helpful.
J2013
Lemongrove
Member

Re: Radiotherapy for breast cancer brain mets - worried

Jane Have sent you a pm. When you see your specialist, you could discuss a change of medication, because as you say, Herceptin doesn't cross the blood brain barrier. Also , as your brain mets are growing, Tamoxifen doesn't seen to be working either. You could ask to be switched to a combination of Lapatanib and Capecitabine, which are thought to cross the BBB, and in studies have achieved survival rates equal to WBRT. Your Oncologist will have to get funding for Lapatanib, but there doesn't seem to be a problem about this providing it is given in conjuntion with Capacetibine

Another thing you could discuss if you have fewer than 3 brain mets and they are under 3.5cm is gamma-knife stereotactic radiotherapy (which is regarded as the gold standard for brain mets). This form of RT is so accurate that healthy tissue is preserved (so hardly any SE's, and s they can give it at a much higher dose than WBRT, less chance of recurrence). Again your docs will have to get funding approval, but most PCT's fund Gamma-knife for brain mets.

WBRT SE's usually include hair loss, and you may be prescribed steroids as the brain can swell after treatment (and steroids can cause weight gain. Sometimes there is intellectual impairment but I believe it depends on where the mets are located within the brain.

Try to remember that brain mets do not not necessarily equal a short survival. There are two reason that brain mets are regarded as serious and neither really apply to you. Firstly, they usually happen after systemic cancer has got out of control and become very extensive (and in fact most people with brain mets die of their systemic disease rather than brain mets), but if your systemic disease is limited and well controlled this is unlikely to be the case with you. The second reason they are considered serious is because the blood brain barrier makes treatment difficult. But again with combo drugs like LapCap, and RT optionns such as stereotactic RT, and WBRT, this is not quite as hopeless as sometimes thought.

Hope this has given you a few ideas to discuss with your doctor, and which will hopefully allow you to avoid WBRT for as long as possible.

Jane2013
Member

Re: Radiotherapy for breast cancer brain mets - worried

Thank you very much for your support Verity and Jane - it has been a bit of a roller coaster year!
I am seeing the specialist brain department very soon (an appointment will be given Monday) but I find if I don't have a list of questions and a bit of research when I go in I can leave without getting all the answers I need and a question pops into my mind at a later date. I am trying to be as fully informed as possible when I go in so I can get a really accurate response.
Good luk to everyone else on the site too.

Best

Jane
VerityC
Member

Re: Radiotherapy for breast cancer brain mets - worried

Jane,
I see another Jane was posting at the same time as me - and with very good info. I hope you can find reassurance very soon.

Verity xx

VerityC
Member

Re: Radiotherapy for breast cancer brain mets - worried

Good morning Jane,
I can not answer your question, I am sorry, but I wanted to say "Hi" and hopefully boost this so others see it. I see that you posted at 3 a.m. - at least that is what my screen is telling me; I imagine you are very worried.
Have your oncology team given you any advice? I do worry about information on the internet and it is often wrong, or it seems to me, gives the worst case scenario, which can very easily terrify!
I do hope that someone comes along soon to help you. I wish you all the very best .
Verity xx

Alto
Member

Re: Radiotherapy for breast cancer brain mets - worried

Hi Jane2013,

Welcome to the BCC forums. I'm afraid I can't be of any help to you regarding the rads as I only had them to the breast, but I just wanted to bump your post as sometimes new posts get a bit lost on this site. They're going to be rewriting the forum software soon, but until then...

Have you thought about calling the BCC helpline? All the info is here http://www.breastcancercare.org.uk/breast-cancer-services/ask-us-your-questions/helpline?utm_source=...

Or you could email one of the BCC nurses http://www.breastcancercare.org.uk/breast-cancer-services/ask-us-your-questions/ask-nurse?utm_source...

I'm sure someone with the right experience will spot this soon and be able to offer you some useful help and support - they're a great lot on here!

All the very best,

(Another) Jane xxx
Jane2013
Member

Radiotherapy for breast cancer brain mets - worried

Hi,
I was diagnosed last Jan (2012) with Stage 1 breast cancer HER2+ but after an irregular liver function test result I was givan a CT scan in April which found large tumours in my liver and also axial skeleton. In November two small brain tumours were located after an MRI.
Latest ct scans and MRI done in the last few weeks show Herceptin and Tamoxifen keeping all tumours stable and or shrinking (alot in the case of my liver which is great news) but the only area where the tumours are increasing (though still currently small) is my brain - probably as the blood brain barrier is stopping the herceptin getting through.
It s being recommended that I have the 5 day general radiotherapy to my head- but this is the scariest thing I have faced so far. I am very much a "head" type. My interests are cultural/intellectual and my work has always involved a lot of brain work - financial/legal/management type stuff. I am also single - arranging all my own affairs.
I am really worried about the side effects - Wikipedia lists dementia and other damage. I prepared myself for a deterioration physically, but though I would still be able to think, read a book and generally keep my marbles. I seem to have come through the chemo-brain often associated with breast cancer OK.
I would love feedback from anyone who knows about/or has gone through this - in terms of statistics on frequency and/or experience of the side effects. I don't think I can say no as all the papers I have read seem to say I will only last six to 8 months if I do, but I am really worried about personality changes and basically - the risk of losing my mind to some degree.
This is the first time since my diagnosis in Jan 2012 I have felt the need to contact a forum for advice and support so, as yoiu can see, this one has me really worried. Any feedback would be really appreciated as would any advice on where to get really detailed information on this.
Thanks