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
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 breastcancercare.org.uk/breast-cancer-services/ask-us-your-questions/helpline?utm_source=MM&%3Butm_medium=services&%3Butm_campaign=helpline
Or you could email one of the BCC nurses breastcancercare.org.uk/breast-cancer-services/ask-us-your-questions/ask-nurse?utm_source=MM&%3Butm_medium=services&%3Butm_campaign=ATN
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
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
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
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
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.
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
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
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).
Just bumping for this lady. Is there anyone else who can add something. Where is Alesta these days? Think she had WBRT recently.
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
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
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.
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
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
P.P.S. Lemongrove - that was a very handy bit of information about them being able to treat up to three in one go. I was assuming 8 lesions meant eight gamma knife treatments of several hours which would obviously make them favour WBRT - Now I know it could be a s few as three days treatment.
Than you
J2013
Sorry about the repeated posts. Not sure what happened there but I am a beginner on this site and don’t seem to be able to find a delete buttonm - J
Hi Jane
Please don’t worry about duplicate posts they happen a lot to users due to the site being unstable at the moment and we can delete any we see
Best wishes
Lucy
Jane, a few more things:
(1) Gsmms-knife is not the only form of stereotactic RT (it is just the one preferred for brain mets). In addition to Gamma-knife there is also Linac, Cyberknife, and Tomotherapy (although the latter requires a modification to be used stereotactically). If your hospital has one of these the funding issue shouldn’t be much of a problem. Alternatively your docs could refer you to the Cromwell (for Gamma-knife), the Royal Marsden, Mount Vernon, or Barts (for Cyberknife), and to Addenbrooks for Tomotherapy (but they would have to apply for funding).
(2) My understanding is that WBRT is given over three to five fairly short sessions. If you had stereotactic rads, you would probably also receive three to five sessions, but each session would last longer than WBRT. Also, because your docs would only be treating three to five mets, you would have to return for another three to five sessions to treat the remaining three mets.
(3) Stereotactic RT has two advantages over WBRT. Firstly it is sparing of healthy tissue (so usually fewer side effects - although you may have some patchy hair thinning/loss). Secondly, whereas WBRT can only be used once, Stereotactic RT can usually be used on the same area several times. Consequently if you were to have WBRT first and your brain mets regrew, your docs would probably use stereotacticotactic RT to knock them back. However, if you have stereotactic first, you could theoretically have repeat sessions and keep WBRT in reserve.
I do think you have a difficult decision to make. I personally take the view that since both WBRT and Stereotactic RT are are palliative (i.e, will not cure brian mets), it is a matter of deciding which will hold the mets back for the longest time, and give the best quality of life for the longest time. For me that means opting for stereotactic RT, because (a) it can be used several times, and can knock mets back if they begin to grow, and (b) by delaying the use of WBRT, and it’s associated SE’s quality of life is improved. Having said that, if you have very diffuse mets, WBRT could be the most logical solution, , becaue it will zap them all. But again, stereotactic RT could achieve the same result - it’s just that the treatment would have to be done in stages.
Good luck with whatever course you decide on, and I hope someone who has had WBRT will be along to provide info and allay your fears.
Thank you very much.
I have done done a lot of reading tonight and pretty much agree. From the stats I am finding - it appears that radiotherapy is definitively a good idea and will improve my prognosis - especially given my tumours have doubled in size in two months and are multiplying - unchecked they will cause me cognitive damage for sure and shorten my life I think.
However, especially as they have confirmed this treatment will not prevent new tumours growing, I am happy to go through the inconvenience of repeated cyberknife or gamma knife for several hours over three days to knock out 8 tumours than 10 days of several minutes for WBRT but that still require hours spent on travelling.
Will definitely talk about this tomorrow with them.
Once again thank you - you have really helped me focus on this. They definitely seem to be encouraging me towards the WBRT so it is great to talk to you.
J2013