I don’t have brain mets but was curious as to how they would potentially be handled by my local hospital. Spoke to my Macmillan nurse this afternoon, and it appears all brain mets, regardless of primary, appear to be treated initially - and finally? - by WBRT. I was a bit shocked by this, in view of comments above. Food for thought if I get a brain met diagnosis - need to be prepared for ‘discussion’ methinks.
Hi Broomsticklady. Well me thinks the Macmillan Nurse you spoke to needs to go back to school. It is not set in stone that patients with brain mets automatically receive WBRT, it all depends on how the cancer presents, and the approach of the Oncology team looking afer the patient. If someone had very large brain mets, or very diffuse mets, then they probably would be offered WBRT, but if the patient only has a few small mets they may well be offered other treatments. I am treated at Charing Cross Hospital, which is a teaching hospital (part of Imperial College), and they don’t automatically treat brain mets with WBRT. In my case they immediately applied and got funding for Lapatanib (because unlike Herceptin it can cross the blood brain barrier), and I will take this and Capecitabine until/if the brain mets progress. If things progress then I will receive stereotactic RT, and if more small brain mets pop-up they will do stereotactic again. Hopefully this will delay the time when I might require WBRT. No doubt your Macmillan nurse will say this is an unusual approach, but I know that at least one Professor at the Royal Marsden is taking the same approach (and as I have met patients from both Charing Cross and the Royal Marsden who have survived with brain mets for over three years, they must be doing something right - given that the average survival rate is less than 12 months)
The sad fact is that there is a postcode lottery in this country, and a wide variation in how patients are treated. It is also a fact that Patients with secodary BC in Britain are treated much less aggressively than patients in other European countries. This is why patients must do their research, be more assertive, and prepared to go elsewhere if they are not getting the best possible treatment available.
Finally received my lapatanib tablets today after much fighting from my breast cancer nurse with the oncology pharmacy! Was granted funding for this two weeks ago and should have started them last week but the pharmacy hadn’t put in the order! Wouldn’t mind too much if we were talking about indigestion tablets but these are for brain mets for goodness sake and a week is a long time for me. The pharmacy even messed up my capecitabine order as well- unbelievable, but deep breaths in and out- no stress!!
Thought I only had to take one of these a day and couldn’t believe it when I read five a day - with the cape tablets,steroid,vitamin, will be rattling soon! Now I have everything crossed that this treatment will keep me stable and allow me to enjoy life as I’m doing at present. Thankfully, the mets are not causing me any discomfort and I will be monitored with scans regularly and when/ if there is progression then I will travel the road of radiotherapy.
Hope you are still keeping stable Lemongrove.
Best wishes to all other ladies unfortunate enough to be posting here.
Liz x
The point I was making Lemongrove is that it seems some hospitals just go straight to WBRT without considering the alternatives - which may have been OK 10 years ago but isn’t now!! Without research such as you have done and comparing differnt hospitals people will probably do as they are told, cos oncs know best, adn ought to be more informed upfront. I don’t have brain mets, just bones currently but am trying to keep au fait with what goes on elsewhere cos I think I have a comparitively ‘backward’ onc dept.
Liz - don’t worry - I counted my morning pills - 31 of the little (or not so little) B’s if I take them all into account - first bone pill, 30 mins later most of the rest, then 6 cap when I eat!! Rattle rattle!
Nina
Nina, yes, I appreciate that is what you were saying. I just wanted to echo the point. I have learned that it is essential to do my homework, and be firm in stating my preference. I know for sure that if I had accepted the treatment regime offered when I was first diagnosed with secondary cancer, and not gone to a London teaching hospital I would be dead by now. My local hospital even rations plasters!.
Liz, I do hope the Lapatanib/Capecitabine combo works well for you, and look forward to swapping notes. I will get the results of my MRI on the 15th April, so keeping my fingers crossed that it is doing it’s job. My instinct tells me it must be working, because it’s now four months since brain mets were discovered, so if the treatment wasn’t working, the mets would probably be causing symptoms by now -because brain mets grow quickly due to a rich blood supply.
One good bit of news is that I have now seen the eye specialist, and she concluded that the spot at the back of my eye is a calcium deposit, not a metastases - so very relieved.
Hi Lemongrove,
so pleased to hear about your eye problem being a calcium deposit. I was there when yofirst discussing it on the Ward - no privacy there…and yes, it sounds as if the brain mets are under control. I’m glad you get the results so soon after seeing the Prof. As waiting is horrible.
i’m back for Zometa on April 22 - any chance we will overlap?
i am going along steadily without my body brace, but no limbo dancing! I have also stopped the Paracetemols as I’m not in pain. Just sore sometimes in my bones/joints. But if that is Lectrozol doing its work, that’s fine by me.
Worrying news about the cuts in the Cancer Drug fund. I know they were focussing of the Bowel Cancer brothers and sisters, but we secondary breast ladies must be at risk too. As you say, it’s a bit of a lottery which is so unfair.
X Susan
Thanks Susan, and glad to hear you are doing so well.
I seem to have had two lots of good news recently, The plastic surgery I had at Christmas has worked very well, and at last sorted out my long term seroma, and the spot behind my eye is just a calcium deposit. Consequently, as good news usually comes in three’s, I’m hoping that when I see the Prof on April the 15th it will also be good - fingers crossed.
Assuming everything is OK on the 15th, I will stay on Lap/Cap, and will not be at Charing X again until May. However if it isn’t I will probably be around on the 22nd having stereotactic RT. Will let you know.
Sorry ladies, just posting to vent my feelings as been feeling rather flat since yesterday when I visited the surgery for a blood test, asked my doctor for calmurid cream for my hands and feet from effects of capecitabine and was taken aback when she asked me why I had refused WBRT, especially in my circumstances! Informed her I had not refused anything but wanted to see how I respond to cape/lap combo especially as I’m feeling ok at mo and will consider radio in future when needed. She also made the comment that I am ‘fiercely independent’; my name is mentioned at their monthly meetings due to the seriousness of my illness and the nurses can’t understand why I have no need for them at present. I was made to feel that I don’t understand how ill I am but I DO. I am not a stupid person burying her head in the sand, just a strong,positive lady trying to live my life as well as I can for however long I have left - surely that’s not a bad thing? It’s hard enough anyway trying to keep the dark clouds at bay without a qualified medical practitioner making the clouds stormy. Maybe my doctor would prefer it if I was making more use of her budget. LOL! Thank goodness my onc is more optimistic otherwise I would be seriously depressed! Rant over, thanks ladies.
On a lighter note - pleased you’ve had two lots of good news Lemongrove, fingers crossed for the third.
Liz x
Liz. I’m so sorry you have been upset like that. You have enough on your plate without someone who clearly doesn’t understand your perspective inferring that you are un-compliant.
To be honest I would be inclined to write a letter saying that you have considered the comments made, and would like to assure your GP that you are merely following a treatment regiime recommended by and agreed with your Oncologist. I would also add the barb that, if they feel your treatment regime is wrong/inappropriate they should take it up with your Oncologist.
The thing is your Oncologist is in charge of your treatment, and your GP in charge of your day to day care. GP’s are not specialists and have no right questioning the treatment you and your Oncologist have agreed upon - they should just be there to support you.
It also sounds like your GP doesn’t know about research which has shown that Lapatanib and Capecitabine are equally effective as WBRT (in terms of survival).
The other thing your GP doesn’t seem to grasp is that people with secondary BC have to eek out treatments/use them in a strategic way, because there are only so many weapons in the armoury. Eventually you and I probably will have WBRT, but while there are other weapons we can use, we will use them.
Try and put it behind you. Good bless Liz
Excellent advice Lemongrove x
Thank you Lemongrove for your kind words and sound advice. Much appreciated and duly noted.
Liz x
Nnnie that’s awful! Lemongrove good advice as usual. Take care lovely ladies xx
Hi There,
As usual it seems that Lemongrove has been coming up trumps and giving well reserached advice. I thought I would pop back in and add to this thread as I think it is a good one to read for anyone dealting with the WBRT/Gammaknife issue.
I will not have news on how my Gammaknife treatment went until my two month review at the end of April - but a bit more information might be helpful for everyone - although my situation is complicated because I do have private health insurance (it is a long story) and that may be a factor in some of these matters (though of course it shouldn’t be).
I have been having NHS treatment up until Gammaknife at the BUPA Cromwell and was encouraged to go private for the Gammaknife treatment because of speed and because there was no guarantee a funding app would be approved if I chose the NHS route. The very reputable hospital where I am being treated did say that they would apply for funding for me to go Gammaknife with 8 tumours located and did not say at the time there was a possibility I may be refused (although another party within the same hospital said Gammaknife was usually only recommended for 3 tumours or less).
Of course in these situations (as I have found in general throughout my treatment) one is told different things by different people (even within the same department). I am sure I am not the only person to have had this experience.
In any event - what I think it is very important for people to know and was not made clear to me at the time - was that one of the main reasons for having WBRT recommended was that it would knock out any small tumours that could not be seen on the MRI.
However, when I got to the Gammaknife unit I found that their MRI scanner was substantially more sensitive working on 1.5 mm intervals and not 5mm (NHS). 22 tumours were located and treated in one session and I was told a lady the day before had had 39 done in one session.
I had no side effects apart from the expected mild headache after, but this was far outweighed by the side effects of the Tegretol I was put on as one tumour was next to my motor cortex.
Of course I will report back on the effectiveness on the treatment and it is possible that some very small tumours may have been missed but as Gammaknife can be repeated these can hopefully be picked off as and when they appear.
I know you will be interested in the result so I will report back in a week or so - but for the moment I thought you would all like to know the number that can be treated as long as approval is obtained.
I also made it clear at my private consultation that my possible 6 months prognosis from my main hospital was due to the concerns over the brain tumours as all other tumours in my body were being controlled well by Herceptin. This may have also affected decision making - I am afraid I am not knowledgeable on the internal workings of private or NHS medicine - but at least you all know what is possible.
Good luck to everyone
jane 2013
Sorry - just to clarify my comment above. It was made clear that WBRT could knock out unseen tumours but not made clear to me that a more sensitive machine as used in Gammaknife WILL locate all tumours unless they are obsolutely tiny.
Jane thank you so much for reporting back and adding such helpful information.
Actually since last posting I have had the opportunity of speaking with one of the senior radiologists at Charing Cross Hospital. I said I hoped to have stereotactic RT for my brain metatases, and he said that unless a patient has numerous dispersed mets, or very large mets, Charing Cross Hospital tend to use stereotactic in preference to WBRT these days, because they have found it works equally well, and has fewer side effects. He said when someone has brain mets stereotactic RT allows them to treat them like mole hills - as each pops up they bash it down.
I did ask if stereotactic RT delivered on a modified Linac machine is as accurate as that delivered by either Gammaknife or Cyberknife, and he said that stereotactic delivered on a modified Linac is not as good as CK or GK for small mets. He said that the cone they use to shape RT beams on the Linac only narrows it down to about 8mm, so there would be some overlap onto healthy tissue with any met smaller than 8mm. Consequently as my mets are small, I have asked the Prof to refer me to the Marsden for Cyberknife. Jane is correct that NHS funding for stereotactic is tricky, and I had a problem getting funding in the past for CK back in 2010. My PCT refused to fund it and my treatment was paid for by a Charity called the Victoria Foundation). However, a lady who posts on here by the name of Joanna, lives in my area, and has just received funding for CK at the Marsden, so it’s possible the new Commissioners are currently funding it … we shall see.
I understand the stats suggest that around 40% of patients with Her2 BC eventually end up with brain mets, as apparently the brain is one of the few areas Herceptin cannot reach (due to the blood brain barrier), and it also has a rich blood supply, If that is true then hopefully this thread will provide a source of information for this group.
Hi Lemongrove and everybody,
I am pleased to be able to tell everyone that my gammaknife seems to have been a success.
All 22 tumours have shrunk in size and my Prof at The Cromwell said that is unusual for a tumour to make a resurgence once this has occurred (estimated 15% chance of that). I was also told before making the decision to go for Gammaknife that WBRT doesn’t work in 15% of cases - so this seems to roughly correspond. My Prof told me before treatment that tumours that are small (my largest was about 0.6 cm cubed) very rarely need further treatment as they are getting 3x the dose that they would with WBRT.
As has been mentioned before -The Marsden told me I could only have WBRT once due to radiation limits for the whole brain but gammaknife can be repeated numerous times despite being 3x stronger on the actual tumours as the radiation dose is targeted
This also limits side effects as healthy tissue is not touched. One of these is cognitive impairment which I was told (at The Marsden) there was for WBRT in 50% of cases (to varying degrees and difficult to assess as whether caused by WBRT, progression of brain tumours or general aging of patient over time for older patients). I was told this is usually limited to things like the occasional forgeting of a word in the middle of a sentence etc. but would relate to the mental faculties of the patient before treatment i.e. only a very small perceptible deterioration in the vast majority of cases and a smart person will stay smart!
The lady in the papers who was fighting for her son not to have WBRT was doing so because, the impact on childrens cognition I was told (for a reason not gone into), is more severe.
They have spotted three areas that might be new tumours but as the MRI scanner used for Gammaknife is so sensitive these would only be about a mm or so in size so we are waiting for a follow up in two months to see if these also need treatment.
I have not experienced any hair loss - so for me it seems that I definitely made the right choice going for Gammaknife over WBRT. If I had gone NHS, The Marsden would have applied for funding for it from the local authority where I live as they only have Cyberknife there.
Something that I would like to add, that may also be of help and I did not know about until my recent follow up but I think is significant, is that brain tumours do not generally spawn new brain tumours (I was told this by Prof at the Cromwell). They are normally found at the end of capillaries and are caused by the cancer in other parts of the body coming into the brain.
This explained to me why, both at The Marsden and The Cromwell, watching the progress of a tumour for a few months (if small presumably) is not an unsafe thing to do. I expect most people (like me) would assume that leaving a brain tumour untreated would not only increase the risk of it growing (and cognitive impairment as a result of that) but of more tumours spreading from it around the brain.
This also explained to me why, having WBRT and Gammaknife does not guarantee new tumours will not form. I had assumed that blasting the whole brain with WBRT and removing all tumours present would eliminate the risk of brain tumours spreading from each other. As it “doesn’t work quite like that” anyway - it seems to me there is even more reason to opt for Gammaknife over WBRT if possible.
I was put on the converyor belt for WBRT at The Royal Marsden (25 sessions as opposed to one session of Gammaknife to treat 22 tumours), until I was encouraged by my own research and this forum to explore the Gammaknife option. So I think that this is the standard treatment plan - and as I have said above - the moral of the story is to question and explore. Once I had expressed my concerns the RM where very happy to apply for Gammaknife on my behalf even though they recommended WBRT to be the optimum choice at the time due to the possibility of small undetected tumours. So I am please to say I did not have the response that I was somehow being excessively independent/difficult/silly which unfortunately seems to be some of the experiences above when WBRT is questioned.
I hope this information is as useful to others in the same way that I have found this forum (particularly Lemongrove) extremely helpful.
Good luck once again everyone.
Jane
Sorry - on refletion 25 sessions may have referred to my breat radiotherapy - and WBRT was ten daily sessions - F
Hi Jane
Thank you for a very informative post and I am glad that your treatment has yielded good results. Long may it stay that way.
I am due to have a scan on Friday with the results on Tuesday. If there is progression, I feel quite confident with regard to discussing my next treatment plan with my onc, mainly due to all the information I have received on this site.
Here’s hoping for a ‘stable’ result.
Liz x
Jane, I’m so delighted to read this. It’s great news for you, and encouraging news for others. Hopefully people with brain mets may realise that WBRT is not the only treatment option. It’s also very interesting to learn that brain mets rarely spawn other brain mets. This makes stereotactic RT all the more sensible, because if mets can be knocked out permanently, and there is no futher spread from other parts of the body, it offers a chance of longer survival. Even if there are a few that have slipped under, the radar (so to speak), there is still the option of having these treated with either GK or CK again.
Nannie, good luck with your scans, and next consultation. Just remember that if you want to have stereotactic, don’t allow anyone to fob you off or say you won’t get funding. Even if you can’t get funding for CK or GK you can still have stereotactic using an adapted Linac Machine. It’s not as good for small mets, but there is rarely an issue about funding. If necessary, just get your GP to refer you to the Marsden, Mount Vernon, or Barts. All referrals have to go through GP’s now anyway (even if the Consultant requests them), so you would just be taking a short-cut.
Hi girls.
Just a brief message to say good luck to Liz for Friday.
thinking of you. Sending you lots of positive energy and hugs.
Valia x