What a nightmare you face. Totally right decision to see a new Oncologist in RM.
One think I regret in this journey is that I haven't asked to have my treatment there from the early sart. That meant a) misdiagnosed at the first staging ( spine met missed ) and later when I asked for second opinion due to back pain- sadly discovered multi bone mets- Marsden advised my ex- Oncologist for some further immaging but b) he completely ignored it and I ended up with a hip fracture and 2 liver mets from the initial one! All this because I din't want to make a fuss... How wrong I was. At least At RM they won't tell you they haven't received letters from patients before as I have done it already at crucial steps of my tretaments. 😉
Radiologists and Clinical Oncologists these days are doing so many new techniques and it is a case of find the right person for the job.
Keep strong and don't give up. Big hugs.
I saw your update the other day, forgot to add any thing and then it disappeared off the first few pages, as they do! Just to say that I'm glad someone is now listening to you and it will be good to see the Dr who did the original procedure on your skull. At least he will have all the info and know what was going on back then. Also hope you then get follow up advice and more importantly treatment as soon as possible - you've been waiting long enough for them to make decisions etc.
Do keep updating us when you can, it is useful to compare notes or even learn from everyone's experiences and you do provide us all with a lot of info about various treatments.
I do hope that the apoointment on the 8th will get you back on the right lines for diagnosis and treatment.
Srnding love and some of the positive feelings youhave radiatd my way in the past
I hope your appointment with the Harley St Doctor goes well Lemongrove and he can tell you if it's skull or brain mets you are dealing with. And the following Royal Marsden appointment can then sort out, asap, the best plan for treatment. Best Wishes.
Well after the recent fiasco over whether I have brain mets or ingrowing skull mets, I have made an appointment with the Dr who did my Cyberknife for skull mets in 2010. I will be seeing him on the 8th August at Harley Street. I managed to get a copy of all the MRI's I've had since Christmas and will be asking if I have skull mets or brain mets. If it's the latter I will be asking if the treatment I had in 2010, would preclude further treatment for brain mets. In actual fac he has already said it wouldn't as they minimised radiation to the brain, so we will just see.
I also asked my GP to refer me to the Royal Marsden in Chelsea, and have an appointment on the 12th August (I have a great GP and they have been very prompt in getting things organised). Hopefully I will now get some answers and some action.
Ponsmuir (Susan), I titlly agree that it's worth calming down before making decisions, and committing to paper. I think Charing X is on the whole a good hospital, but the Prof has become a bit obstructive. He actually refused to let me have the operation on my ruptured seroma at Christmas, and it was only the Plastics Consultant and Prof persuading him that made him relent. Had it been left up to him, I would have spent the last seven months waiting in everyday for the district nurse to dress the open chest wound or would possibly have died from a massive infection by now. I just think the Prof is concocting ridiculous excuses to avoid offering more expensive treatment. But us secondary peeps have paid out taxes, and deserve to be treated with the same vigour as those with primary BC
It's at times like this we all wish we had that magic wand, not just to get rid of the bloody cancer, but also to take away the frustration, worry and downright despair... I really hope you can get a speedy resolution to this and the treatment that's right for you. But in the meantime, hold on to stable and keep on fighting for what you want and need like only you know how.
No need to apologise, dear Lesley (Lemongrove). It was an unexpected pleasure meeting you at the hospital and chatting while we waited together. You told me that Lap/Cap is keeping you stable which was great news. I was so sorry to see you so upset after your consultation and understood you were rushing off anyway to have your Zometa.
I don't see why you shouldn't ask for a second opinion at the Marsden. But I would advise you to sleep on it a bit before you commit to paper such negative feedback. I understand how angry and upset you feel - but we were both in a very bad way over Christmas/New Year and the hospital pulled out all the stops to sort your serenoma problem at an 'anti social time' and do the surgery. And then it had to heal. So it wasn't all sloppy or mismanaged, they would say.
I am sure you will take this set back in your stride and find a new way forward when you have rested up. And don't forget - you're stable.
I look forward to you giving me the benefit of your wisdom for years to come, as we discussed.
I can only echo what Nicky has said. Totally know where you are coming from as I also feel badly let down by oncologist and I am awaiting a second opinion. What makes your situation worse is that you are so knowlegable and have helped so many of us both with inspiring us and giving us confidence to question treatments. Thoughts are with you.
This is just awful,no wonder you are upset. It seems that oncologists do not like it when we do our homework. They can't stand being challenged. You made the right decision to ask to go to the Marsden instead and I am sure they will take you on and take a fresh look.
I feel a letter of complaint is in order once you have managed to calm down.
You take care.xx
No wonder you are so in such despair. I do think a lot of oncologist really do not understand what we have to deal with on an emotional level as well as the physical side of things. This seems such a waste of time going backwards and forwards between medical professionals. who kow the facts about your case, when all you need is a treatment plan to be already in place. All I can offer is support but, from someone that has also had major problems with conflicting decisions, I do understand just how frustrating this must be for you - let alone downright worrying. Just hoping a suitable solution is decided on very soon to get you out of this limbo and also that the Cape/Lapatinib combo is still working well for you.
Well I'm in utter despair today, and don't have a clue how to proceed now.
As peeps will know from this thread, over the past few weeks Charing Cross Hospital have been saying they have concerns about referring me for more Cyberknife or Gamma-knife because my brain metastses are located close to where I had Cyberknife for skull metastases in 2010 (and treating the same are might cause over-exposure). Because of this I contacted the doctor who treated my skull mets with Cyberknife in 2010), and asked if he felt the treatment I had in 2010 would preclude treating brain metastases in that area. He said he couldn't see any clinical reason because they had minimized radiation to the brain, and that if the NHS wouldn't do it, he would sort it out.
I was naturally very pleased about that, because it supported my view and gave me the option of private treatment as a fall back position. However, I then made the fatal mistake of telling Charing Cross what the doctor had said. As a result they have completely changed the goal posts too justify their position. They are now saying that I don't have five brain metastases at all - what I have are three skull metastases growing into the brain. Consequently, treating the the area growing into the brain would mean treating the skull - and as the skull has already been treated they feel it would be too risky to do it again.
So I'm completely stumped now and don't yet have a clue what to do. I know full well the problem is not skull mets growing into the brain, because I have had numerous scans and none have mentioned skull mets getting bigger. Therefore how can they say I have skull mets growing into the brain without any sign or them actually growing or changing?
I'm now worried that if I go to a private hospital they will contact Charing Cross, and refuse treatment simply on the grounds of what Charing Cross have said. In fact, that seems to be happening already, because I immediately Emailed the doctor who treated me with CK before to take him up on his offer, but when his Secretary rang this morning she said he had said to tell me that he was in contact with the Prof, and was fully aware of the situation. In other words, it sounds like the Prof has already told him that he doesn't agree with treatment and doesn't want to be undermined.
I have also written to my GP to say that in view of the misdiagnosis, sloppy management of my case, delay and muddle, I no longer wish to be treated at Charing Cross and have asked to be referred to the Royal Marsden intead. I have said that I want a second opinion and want the Marsden to look at my case completely afresh. My only hope is that the Marsden agree to take me on, re-evaluate my scans and disagree with the Prof.
I cannot begin to explain how upset and let down I feel about this. They have not carried out any dosimetry and therefore have no evidence to support the view that more treatment would cause over-exposure. What's more, It has taken them almost eight months to reach this unfounded decision - and during that time, I have had to endure months of misdiagnosis, sloppy management, disagreements about approach, terrible advice and dithering -when what was required was prompt action.
I now feel like my life-line has been cut, and my only hope has been taken away. What's worse is that the Prof doesn't seem to understand how resentful I would feel if I had to accept the treatment he is now proposing (i.e, stay on Lapatanib Capecitabine until it fails and then have WBRT). The fact is, if I had to have WBRT, knowing that when my mets were small and potentially controllable, I could have had stereotactic RT and posibly avoided WBRT together, I would be in total despair.
While writing I must apologise to Ponsmuir because I met up with her at Charing X Hospital yesterday, but rushed out without a goodbye. I wasn't being rude, I was just on the verge of tears and didn't want to make a spectacle of myself.
So sorry to hear your latest news Lemongrove. I thought you had probably had your treatment by now. As if any of us have the luxury of waiting the whole of summer for doctors to come to a consensus! I hope you can now have this treatment asap.
"But what is the alternative-do I just lay down and die?"
Get that printed out on to a badge or a mini banner and wave it at them when they filibuster.
I feel the fact that they have never had letters from a patient before suggests that they have been good at their job thus far, but also that they and their patients have been lucky. You may have been the first but you will not bethe last in today's world that questions their treatment.
Keep On Keeping On, Lemongrove, we need you! Very glad to hear that you are stable.
(BTW the room air was blue as I read abut the CK referral fiasco continuing)
Lemongrove. I quite often read your posts and I have to say the knowledge you give to others is amazing. I am relitively new to breast cancer ( dx double whammey this year) so the information you give and the convidence you inspire people to have is great. I hope you have your treatment, which I am sure you will. Please keep us updated.
Best wishes x
Lemongrove, I hope you soon have access to the treatment you need and that it does a wonderful job for you. It is amazing that you can find time with all that you are going through to share your knowledge and experience with others and inspire us all to fight for the treatments we need. I know you have encouraged me to be a more informed and proactive patient. My very best wishes to you x
Lemongrove you are an inspiration. I have just had to fight to get my treatment changed when Letrozole had clearly stopped working. Breast turned from having a lump to being just one huge Solid lump. Shows up on scan as 26mm in real life 5 to 6cm. Tumour markers also went from 70 to 280 and they made me wait around for another four weeks effectively having no useful treatment. Firmly believe they only eventually listened to me when I asked for a second opinion. I do think they were partially reluctant to change from Letrozole to Capcitebine as I believe Invasive Lobular cancer does not always respond well to chemo. I also think because I have secondaries they have given up on me.
I am sure you will be able to get the Gamma-knife just such a shame we have to fight for treatments.
Just thought I would post another update. It's not that I think I'm important, I just hope my struggles might help others who find themselves in a similar sitution.
I'm basically OK and the Lap/Cap combo seems to be holding the brain mets at bay. The Prof who manages my treatment referred me to the Marsden for Cyberknife, but the Marsden declined to see me because they were under the impression that I have five brain mets (and they only treat a maximum of three with CK). This turned out to be very annoying because a new Neuro-Oncologist at Charing Cross has since reviewed my scans and decided in fact I do only have three. Had they decided this before, the Marsden might have seen me.
Anyway when the Marsden declined to see me, I asked to be referred to the Cromwell for Gamma-knife, which is also a form of stereotactic RT, but can treat more metastases (the main difference between Gamma-knife and Cyberknife is that Gamma-knife is only used to treat head and neck cancers whereas CK can treat cancers virtually anywhere in the body). Afer finding out I only have three brain mets, I did think of asking to go back to the Marsden but decided to stick with pushing for a referral to the Cromwell - for two reasons (1) The MRI at the Cromwell is much more sensitive than either Charing Cross or the Marsden, so if they discovered more mets, they could treat them. (2) It's easier to get funding for stereotactic RT for brain mets, than mets elsewhere in the body, and as CK tend to be described as a Whole Body treatment I know that the funders are more approving of Gamma-knife (in fact since NHS England took over specialist funding since 1st April, they only fund stereotatic RT for brain mets and inoperable lung lesions).
Needless to say there has been a lot of dithering over whether I should be referred. Trouble is, while most of the medical team caring for me feel stereotactic is the way to go, there is one ultra-conservative doctor who remains adamant that I should have Whole Brain RT. This is currently a major problem, because the first requirement for specialist funding is that there is consensus amongst the medical team that this is the best treatment. Again this is very annoying, because I actually meet all the other requirements and am confident I would get funding.
Anyway I'm equally adamant that I'm having Gamma-knife, because WBRT offers no survival advantage, and is merely palliative. Sterotactic on the other hand does potentially offer a survival advantage, and if I'm very lucky and there are no other unseen brain mets, it could knock out the existing ones, and solve the problem.
Charing Cross must hate me because I'm so pushy (both the Prof and secondary BC Nurse say they have never received letters from patients before). But what is the alternative? Should I just lay down and die?
Lemongrove, You don't know me, I'm a 'newbie' but I have been reading some of your posts and I can honestly say, I have nothing but admiration for you. After reading about what you have gone through, it has quite frankly left me in total amazement. How you have to sometimes fight to get the best treatment and still come back on here to stand up for our rights and tell people how it is in the real world. I wish you well with your continued recovery.
I have spoken to Chris this evening, as soon as I saw your post, Lemongrove and she will be in touch with Father John.
I will PM you also.
Re our local A&E, I have had good experiences there for myself and others, but the team that would be involved thereafter does not inspire me either. Wishing heartily that neither of us have to be there.
Thank you Lavender. Perhaps you would be so kind as to pass the news to Chris at St Giles so she can inform Father John.
Yes the closure of Charing Cross A&E will be a blow for many cancer patients who are treated there. Frankly, I'm actually quite frightened at the prospect of going to my local Hospital, because i just don't rate the oncology team there. At Charing Cross I'm treated by Professors who also work in Harley Street and the Cromwell, so why would I want to take my chances at a Hospital where I would probably be evaluated by a locum who doesn't even have my notes?
Given there is a crisis in A&E srvices all over the Country, it just doesn't make sense to close them down (particularly excellent ones like Charing Cross).
Thank you so much for posting to update us all, Lemongrove.
You have been through so much, and still come up articulate and campaigning.
There was an article in one paper today about how cuts to A&Es have been shown to have caused
deaths, but doing a rethink doesn't seem to be in the vocabulary.
Carry on recovering!
Lemonogrove, glad to hear you feel better already! Well done girl. And well done to Charing Cross team that look after you so well.
Keep fighting and keep get stronger.
God bless you, Charing Cross ( sorry Torries but you can't be included)
Back in Charing Cross Hospital. Was unwell yesterday with temperature of 40 degrees, and kept falling over. John rang the A&E and they said bring her in straight away (the A&E at Charing Cross are brilliant, and it's disgusting the Tories are closing the unit). Anyway, by the time I arrived I was delirious and couldn't stand up, so they took me through to the resuscitation unit. It appears I have an infection in the scar tissue surrounding the surgery I had at Christmas, and a urinary tract infection. Also although the brain mets have shrunk, the fluid surrounding them has increased (hence falling over). Anyway sent to Ward six south, and Hey presto, my temperature is back to normal, and I'm up and running again today. They're continuing with the anti-biotics, for a few days, and may bring forward my mri to tomorrow. So that's all for now. God bless Charing Cross Hospital, and damn the Tories for what they're doing doing to try destroy it.
Nannie Spiky. My Prof say's fluid is usually a bi-product of Lap treatment, so try not to worry too much.
Lucinda (Linda) have sent you a pm. Try and take it easy, because those long days at the hospital take it out of you.
Only just picked up your posting...been so shattered this week not been on pc much.Sooo pleased to read your good results and really hope you get cyberknife funding,if anyone can you will!!
Found your posting after replying to pm.Really tired today as had to be at RM early for fasting blood test,then go for rads planning followed by clinic getting home at 7pm.
Hope you received my pm. Good to hear that the treatment appears to be working and keeping you stable. Long may it continue.
I also saw the onc today and she has booked me in for a ct scan within the next two weeks to check how things are. I also found out that my brain mets are 1.8 cm and 0.5 cm in size so not very big at all but the concern is also regarding the fluid around the larger met. The good news is that she has given me a letter stating that I am fit to travel so we are able to go ahead and book our cruise. She said it will do me good. Yippee! Fingers crossed that the scan brings me good news too.
Good luck with getting the funding for Cyberknife.
How lovely to hear from you and with news of stability. I also am pleased to hear that you have your "Ready to kick up" spirit intact! Hope you are accepted for Cyber Knife without having to use up your energy.
So pleased to hear positive news, Lesley. I've been thinking of you non stop. Good that the combo is keeping you stable and knowing tour spirit, I am pretty sure you will get your way with the Cyberknife.
Just another update. Went for results of MRI at Charing Cross Hospital yesterday, and it appears the Lapatanib and Capecitabine combination seems to be stopping the brain and spine mets getting any bigger. There was an increased odeoma within the brain, but the Prof thinks this is probably a by product of the treatment.
Originally they planned to give me stereotactic RT using an adapted Linac machine, but having discussed it with their Radiotherapy Department it seems that while Linac is good for larger mets (over 8mm), the cone they use to adapt it means it is not good for small mets (under 8mm). Consequently I have now asked the Prof to refer me to the Royal Marsden for Cyberknife (which is good for small mets).
Unfotunately there could be a problem getting funding for CK, but as I'm a patient rep to our local Clinical Commissing Group (who have replaced the old PCT), I will kick up a hell of a stink if I don't get it (bit of a rum-do when cancer patients have to keep their fingers crossed for treatment funding that can possibly save or extend life).
Keep on keeping on (as they used to say in the 1960's).
Hi Lemongrove - I am so glad I have found this post as I can't find the original one where you posted that you had brain mets. You have been on my mind (no pun intended) and I have been wondering how you are getting on. I so hope that your treatment is successful.
Thanks for taking the time to post again. I read your informative posts with interest. Very good luck to you (and us all!!!).
Love Ann xxx
PS Hi Linda. Hope things are going ok. Will be in touch soon.
I am sorry I have only just found this news of you, I dont post so often now, but I have looked around the site for you every now and then.
Sending love and best wishes for you to have the best possible response to your treatments, and renewed thanks for your campaigning successes and encouragement of others.
Love from Lavender Lassie (from village to the east of you)
Dear Lemongrove, best wishes to you with your new treatment and for a good peaceful recovery. I echo what Punky Flapper said about your encouraging posts. I am far more assertive now with my oncologist,etc. with regard to knowing his reasoning behind decisions he is making for me. Also it is vital to not just accept what is offered if you don't feel reassured and ask about alternatives/extras which could make a big difference for you, but you haven't been made aware of!
Thankyou for encouraging us to push for what really matters, which is more open discussion between patient and medics, and the guts to stand up for yourself to get the best treatments available.
Hi lemongrove, I've not been on for ages and even forgot all my login info! I'm so glad to be able to see you have come out the other end of a most horrid nightmare xxx lots of love to you, golightly, now Katster!
Hi lemongrove, I've not been on for ages and even forgot all my login info! I'm so glad to be able to see you have come out the other end of a most horrid nightmare xxx lots of love to you, golightly, now Katster!
you are truly inspirational and great at encouraging others to seek information about their treatment options and make decisions and not just accept what doctors offer to them.I do admire you for trying to make a difference for those with secondaries by sharing information and pushing everyone to ask for the best treatment possible.And thank you for that.
I really hope that you are feeling better by the day and that your next post will be good news.
Sorry to hear you've had such a rough time, Lemongrove, but glad you are feeling a bit better now. Was going to post earlier but on my kindle, the letters keep overwriting so I give up in frustration! Keep progressing in the right direction.
Welcome back. I am glad I saw your post as I don't come to the site regularly anymore.
I always find your posts very informative and non judgemental. I am sorry you had such a rough time recently but glad you are feeling better.