Hello everyone, my mother was recently diagnosed with stage 4 and mets to brain (single lesion) which was removed surgically, she has now been advised to get WBR or wait and watch…!!! can some one pls help us in making this decision, has anyone everbeen in a similar situation before…? we r so confused and stuck, really really dont know what route to take…she is er and pr +ve and her2 -ve, so cannot have herceptin…! what is one to do…???
This forum is an amazing source of information but you may find that as far as brain mets are concerned that information is a little more limited than it is in other areas of secondary breast cancer.
I believe that the chance of a local recurrence of the tumour after surgery (ie it starting to grow back on the same place) is fairly low - I think I read 13% somewhere, so that’s good:-) There is of course the chance of more mets growing elsewhere, only your consultant can have an idea of how high the chances of that happening are.
WBR can only be done once so maybe if you opt for the wait and see approach it could be used to zap any regrowth (if it has occurred) and/or any other mets that might have appeared. It may be that your mum doesn’t have any regrowth or new mets on which case she could avoid the unpleasantness of WBR altogether.
As i said your mum’s consultant will have a much better idea of her chances of regrowth/ recurrence -It must vary from person to person.
You should also ask him about gamma knife/cyberknife It is really difficult to get funding for it on the nhs but it does have good results. I think it might be worth pushing to at least have a gamma/cyber knife consult (someone who actually does gamma/cyber knife might be better placed to help you apply for nhs funding) I am almost positive it can be used after surgery and I do know that unlike WBR it can be repeated if necessary. I had gamma knife for brain mets in May of this year and experienced almost no side effects.
I do hope that some of this helps. Good luck with your mum’s treatment
Big hug
Mx
Ps
Just saw the time you posted
I hope you work shifts because otherwise you are staying up much to late worrying about your mum- you can’t be any good to her without your sleep you know.
- that’s what I would have said to my own daughter so I am saying it to you on you mum’s behalf :-))))
HI there,
I don’t often post anymore ( used be on here for hours at a time!!) but your question caught my eye - there is a trial for people with lung cancer …so very very different situation …but its about whether or not WBR helps or hinders particular people with particular situations with lung cancer . Its called Quartz trial and is funded by MRC. There are no results yet but just the fact that they are asking the question - is WBR better or worse than other care in terms of quality of life - gives you a hint about the potential impact of WBR and how its good to be pretty sure it will help and that you want it and its side effects before setting out.
I’ve also learnt that some Drs are really desperate to offer anything to patients and find it hard to offer nothing. so they suggest things that we should be much clearer about saying no to if we don’t fancy it. I wonder if the doctor is one of those who won’t “give up” or one who understands the balance of length of life versus quality of life.
Reading this it sounds negative, its not meant to be sorry, its just about choice for me, for each woman to choose and not feel bamboozled…oooo I’ve never tried to spell that word before!!
all the best
Hi, I dont have any experience of brain mets and am still undergoing treatment myself at the moment, due for rads soon. There is one lady on these forums that might be able to advise you she goes by the name of Lemongrove and has had brain mets herself, she may answer you on this thread however I am sure she would not mind if you pm’d her she is very approachable and helpful.
Hope this helps
Love and light’
Sarahlousie xxx
Hi
I am currently halfway through WBR. I read up on effects etc and certainly would rather go with cyber or gamma knife, as the SEs are so much less! If your Mum only had one single lesion she should be eligible (again ask Dr Lemongrove! she is a font of knowledge on these procedures)
I am currently fine with WBR, no SEs yet…not even tiredness, but have been warned that they usually hit (big style) later. Still I am off work until after Christmas, so after treatment finishes, will have lots of ‘home days’ watching Christmas films and dozing if necessary.
I did read up on SEs and frightened myself…some are not nice, but due to the nature of my cancer, WBR was deemed to be the only answer, for me, as mine seems to seed itself with lots of small dots rather than tumours!
I guess whether to wait or not is a horrible choice to make, so much to consider! Also how stable is the cancer everywhere else? mine has just kept on progressing, so I would need as much ‘clearance’ as I can go for, for peace of mind. If you want any information about the treatment itself do get in touch. It might be worth also looking at breastcancer.org there is a brain mets sisters thread that is very informative (and tells you straight about potential side effects!) I am also PR+ and HER -, and was told that I was at lower risk of developing brain mets, but this is such a horrible sneaky disease, there are no guarantees!
Take care and love to your Mum
xx
Hi tilly cat thanku so much for your response, yes am awake at night as the thought not taking the right decision is killing me, but your heartfelt post did bring a tear to my eye…so thank u again…my moms radiologist and onc seem to be quite in favour of WBR and say gamma knife is not an option now as there is nothing to treat as such, it can be used at a later stage if tumor comes up…
hi moorcrow thanku for your suggestion wil look in to the Quartz trial…
sarahlouise…thanku very much…will get in touch with lemongrove…
hi nicky65, thanku for your comment and sorry to know that u r going through this dreaded disease and brain mets…hope u come through clean and experience very little if it all any side effects…
wishing u all the very best of health and happiness…xx