I was given arimidex after exemestane didn't work. I was on tamox for 3 years then they switched me to exemestane andit came back after a year on exemestane. But my onc had no problem putting me on arimidex. Hope you're feeling a bit happier now. love Mo x
Hello Lulu, thanks for your comments.
I have asked for the radiologists report relating to the October 2011 scans before doing anything else, as I want to find out where the mistake was made. If the report clearly mentions the two tumours then the Onc is at fault for not reading the report/looking at scans, and I will definitely ask GP (whoever that turns out to be), to refer me to the Marsden.
I also don't want to transfer yet because I want to get the rads, and whole body CT out of the way, as I don't want any further delay.
I also know there are a number of endocrine therapies, but was under the impression that they cannot be given after Exemestane, because it's effects are irreversible, but others have said it is possible, so that is reassuring. Thanks again.
Hi Lemongrove so sorry to hear you latest news.
Only just read this but if you don't feel confident in your team then it's time for a change.... The communication appears poor at best.... You can ask to get a copy of all letters..... So when they write to your gp you will get a copy too.
As for getting a new gp is there any other docs at the practice that you like? If you don't know the others maybe next time you make an appt you can see different ones till you land on one you feel happy with.
Glad your sounding a wee bit chirpier.... If the femara isn't working have you tried aromasin, arimidex and tamoxifen? If one treatment stops working that usually means its time to try another.... Good luck with the rads.
Thanks Linda, so nice of you to post when you're feeling so raw yourself. I do hope you're picking up now, and getting the treatment sorted out. All this stuff is a bu*mer isn't it? At the very least we want to feel we have competent medics managing things-but I just don't feel that at the moment.
Will get rads out of the way, and then look into what's been going on.
Oh Lesley, im so sorry to hear your recent news,ive only just seen this thread ,so am semding massive hugs to you pet,(((((o))))), you know where i am if you want to chat or rant or just scream, am thinking of you and hope that the rads in May blast the buggers to bits, im so sorry you are going through all this s**t ,hope you get some answers soon.
Am here for you, Love and massive hugs
Hi Elinda, thanks for the Info. I had forgotten that they would have discussed it. Makes it all the more incredible really. When I saw the radio-oncologist to discuss rads, he said he was surprised that the prof had said the scans showed NED in Oct 2011, because the tumours in C2 and T12 were clearly visible - so what on earth has been going on?
Have requested a copy of the radiographers report for the bone and ct scan I had in Occtober 2011, and will take it from there. Wont do anything at the moment as I'm starting rads on the 3rd May.
The Prof is a brilliant person, but I think he is spinning too many plates-and I'm one of the plates that has come crashing down.
Sorry LG, Sending big hugs. It is horrible to receive bad news and more so when you must have been feeling so positive. I don't understand how they have not mentioned the spread and I don't know what the options are for treating these.
You have been such a help and inspiration as well as a tireless campaigner on behalf of others and I hope that there are treatment possibilities that can zap these as with your previous mets. You seem to have had such a positive response once, is it possible to do this again on the new mets? (sorry, I am probably being naive as clearly you know far more about the cyberknife or other options than anyone else here.)
It is hard when a trusted and valued medical advisor is no longer around and I hope the replacement turns out to be as valuable and might even have new knowledge and options for you xx
Yes definitely would have been discussed at team meeting particularly if there was some query over T12 back in 2010. From what I understand the usual process is a joint approach with radiologists, Oncs and surgeons all reviewing. They might of course have decided between them in 2010 that on balance it looked unlikely that what was there was a tumour (particularly if you had no symptoms and it was tiny). I would have still expected that they would have told you though although I know some doctors aren't forthcoming with info.
The fact you had scans again in 2011 means that those results would also have been looked at/discussed and compared. It's possible there was no change at that point and so they decided on balance again that it unlikely to be cancer - you'll know more when you get those reports.
So one scenario is that the tumours have only become obviously apparant with your recent scans.
I don't know about treatment possibilities but I'm sure other women will and might be worth talking through with helpline?
take care, Elinda xx
Just adding to what everyone else is saying. It's bad enough getting rotten news from results but it must be devastating to get good news and then have it revised downwards. You have every right to be feeling down. Glad you are feeling a bit better about it today and hoping that continues.
Sometimes BC just tortures the soul.
Hi Caroline, no not Brighton. I just see them when I need to get the seroma drained (as they did the MX). I'm virtually on first name terms with them at Brighton now because I've been going since January 2010 (ha,ha).
Yes, I'm very depressed about not getting a horse, but hope the rads/Exemestane will sort things out.'
Elinda, you have just mentioned something I hadn't thought of. You're dead right that they must have mentioned it at team meetings, because the radio-onc said they have been concerned there might be a tumour at T12 since Dec 2010, so the Prof must have known. The question is why wasn't it mentioned?
Just sending you a big hug. I really feel for you - remember reading how you were thinking of getting a new horse just the other day and everything sounded so posative. Hopefully there are other treatments available and a transfer to the Marsden sounds a good idea as you must've lost all confidence in your present BC team. Not sure if I'm allowed to ask this on here but are you still with Brighton?
Hope things start to look up for you soon
Only just read your post and sorry to hear all this. What a blow and not surprised you feel angry with your consultant. If he didn't read scans or discuss in team meeting then this would be clinical negligence.
Re your GP, I'm not in the same situation as you but do have some understanding of how you feel about losing your GP. My GP had seen me through lots of serious health issues over the past 4 years and then she went on maternity leave. I'd developed a really good relationship with her and felt very down when I went to a couple of other GPs in the practice one of whom gave me appalling advice.
But then I struck gold with a trainee GP who not only is very thorough but most importantly is much more up to date on treatments than many of the others and willing to take time with her patients. She also has the most amazing way of dealing with people as though they are equals.
I only hope that you will find a new GP that you feel so happy with.
So sending you a big hug.
Thank you again for all your support. This forum has been a real boon for me, and don't know what I would do without it. The problem with having BC and particularly secondary BC, is that it is so isolating. Unless you have it, you really can't understand all the stuff that goes with it. I can't even communicate my feelings to my family and friends - even though I know how much they love and care for me. This forum has also put me in touch with a fantastic bunch of ladies who I meet up with from time to time, and we always have a great laugh - and best of all because we're all in the same situation, the elephant is never in the corner, and we can say what we like. The forum is also a terrific source of information - and it also allows me to contribute from time to time. So thanks BCC.
Anyway, feeling a bit better today. Have now requested a copies or the radiographers reports for the scans I had in Oct 2011. If they mention the two tumours, it meaans the Prof not only didn't look at the scans, but didn't read the radiographers report properly. If that is the case, I will be launching a formal complaint, and asking my GP (whoever that may be now), to refer me to the Marsden.
Luckily Lucinda (one of our support group) goes there, and has given me the name of her consultant who is very good.
Thanks again for all your support.
Just wanted to say really the same as all others who have posted, you have helped and supported so many, hopefully we can all help you through this time, thank you Lemongrove xx
I can't believe I missed seeing your post yesterday but can see you have had loads of support from others on the forum. I think you must be feeling especially low after being given such positive news last November, which it seems/was incorrect. Just one thought. I went to see another onc in my team (funnily enough to ask about cyber knife) last November and, almost in passing, I was told I had 2 other tumours on my spine that I had no idea about and had never been mentioned before. I was a bit gob smacked to say the least and asked how long they'd been there. After checking back over all my scans I was told they had shown up after FEC had finished but it was the chemo that had shown them up, they had been tiny and undetectable before the chemo. They have been there from the start but no one had thought to say as they must have assumed I knew about them, I only thought I had 2 areas that had shown up on the initial bone scan. However they have been completely stable for 4 years, as have all my areas of bone mets. So, I'm trying to say it may be worth going right back to the beginning with your scans to find out if these new areas are actually new, or have they not been reported on before? Either way I wish you all the luck with the CT scan and hope you can get some answers to your questions either from your existing team or a completely different one.
Lemongrove, I have lurked and lurked on this thread hoping useful to say will strike me. It hasn't. You have been, and continue to be, an inspriation to so many, and your tireless campaigning for access to the best treatment for others as well as yourself has been a wonder to behold. I have rejoiced in your moments of rejoicing - such as the arrival of your grandaughter. Now I can only rage with your raging, and hope with/for you for your tomorrows.
Lemongrove - I just want you to know how upset I feel for you.Please don't loose heart - there are alternatives to the treatment you have already had. I do sympathize with you - it is very hard to face a direct challenge to mortality when everyone else seems to be carrying on with their jobs holidays and just normal everyday activities.
You have a great talent for being informative, supportive, kind and objective all at the same time.
In your position I too would be wanting a second opinion - and a read of my medical notes!
Hi Lesley so sorry to hear your news it amazes me how they can miss these thing my onc never saw my nodes until I pushed for cyberknife like u know why don't u get a second opion that may help can understand how down u feel but just remember how strong u are u fought before you can do it again get y strong head on and off u go big hug love Laura
I just want to echo what others have already said. You have been an inspiration in terms of your continous endeavours to source information and new treatments which will ultimately assist us all on here. This rotten, rotten bc (not really the words I want to use, but hopefully you get my drift) is so unkind.
I do hope that you get support, treatment and the care you deserve. Take care. Jayne.
Lemongrove, I always read your posts, I love your politics and your approach to life. I am so sorry you've been feeling down. I think you have avery right to be pi**ed off, how could they have made that mistake! And not telling you they'd suspected the change from 2010! I am furious on your behalf. It is sad that GPs like yours are leaving - too many GPs just have ££ signs in their eyes. You fighting spirit is great - but you are absolutely entitled to a moan too, and with good reason. Take heart, Mo xxx
I so know how you feel! Today was a good day as I was treated with kindness and empathy by medical staff, last week was just the opposite - don´t they realise we feel like they have our lives in their hands?????
I found this site and it is really helpful I think.......I hope it helps you
So sorry that you have found yourself in this position. Failures in your care plus the departure of your GP at the same time is hard.
Similar to you, I had EC for my primary treatment and then tamoxifen followed by femera, neither of which were effective for me, and have tumours on my spine (and a few other areas). However, since then I have responded well to Gemcitabine/Carboplatin and later to Abraxane/Xeloda, and I am now on long term Xeloda, so there are more options.
A second opinion and an oncologist you can trust should be your next move in my opinion, but please accept all the best wishes and encouragement from all our posts here to let you know that there is a future, and we are all rooting for you.
Just want to send best wishes Lemongrove - and thanks for all the support and help you have given to your fellow forumites. Cyber Hugs and love - Diana x
Lemongrove you are one of the most helpful members here, even if I haven't had to ask you myself, I see how you care about us all, I have read how you have helped women, especially those with SBC and how passionate you are about treatments and how you have driven the Cyberknife issue.
Seeing you say you are down is most upsetting because you always hold others up when they are down and give them practical solutions. There is nothing I can say to help you, but I want to remind you about that fight, drive and passion you have, even if it takes a knock now and again, it will be back......and stronger.
Sending you MIGHTY cyber (((HUGS))) in abundance.
Thank you all for your support and encouragement. I really, really appreciate it. It makes such a difference to know that there are people out there who understand how all this cr*p feels.
One of the friends I have made on this sight (Linda), kindly rang me this morning. My daughter and I (plus my little baby grandaughter, Poppy), went to Harry Edwards Healing Sanctuary for healing, and then stopped for a cream tea on the way back, so I'm beginning to feel less sad now.
When I woke up this morning I was thinking very black thoughts (one way tickets to Switzerland thoughts),so thank you all for your care.
I'm so sorry to hear about your news & the mismanagement of your care. We tend to put our complete faith into our medical teams & presume they are constantly on the ball with our treatment etc, however this clearly is not always the case & you are rightly feeling confused & angry about everything.
I don't have any magic words to say LG but I wanted to let you know that I'm thinking of you & hoping you get some answers quickly & also a new treatment plan. You mention that FEC & Femara have stopped working & are unsure what is still available to you - LOTS & LOTS!!!! I'm currently on my 4th chemo & have been on 3 hormone tablets & when I saw my onc 2 weeks ago we discussed what options I still have left & there are plenty, so please don't give up hope!
You are such a knowledgable person, who constantly offers words of support & encouragement to others when they are feeling low. Stay strong LG & keep fighting!
I've often read your amazing posts of advice to others on here.
I am gutted to read that your scans showed changes last Autumn and you've only just been made aware of this. Nobody would ever believe such mismanagement can occur, you must be feeling so down and frustrated. Why this has got to happen in this day and age is beyond a joke, thousands of us are implicitly trusting our doctors to manage our care with no short-cuts or mistakes.
I'm sorry I've got no words of advice for you, I just wanted to write that my thoughts are with you, you have amazing knowledge and I'm sure you will find the strength to march on forwards and not dwell on the what ifs and if onlys.
I'm sorry you've had such bad news, and hope all the cyber support makes you feel a little less alone. Remember that there are lots of hormonal treatments and chemo that you have not tried yet.
Oh no! so sorry to hear about the spread, completely understand why your feeling so low its bad enough going through the whole scan anxiety thing without them telling you incorrect information, why didn't they see the new tumors???? sounds crazy to me, I mean what is the point in scanning if they are not going to bother looking at the images properly, of course your going to lose confidence in your specialist, sorry but this has made me so angry. I also understand the 'Lost and alone' feelings, you know your such a strong lady, you've given me and others such good advice on numerous occasions especially when I was first dx, you will come through this and you know we are all here holding your hand offering our support and understanding you are never alone.
When I was first dx my GP was a newly qualified lady Dr who was just fantastic (she used to ring me every week after I was dx just too make sure I was ok) after 8 months she left the surgery and all the other GP's at the surgery are men! its such a shame your GP is leaving, can you get recommended to another GP by say one of your friends?
I'm waiting for a scan have been now for 6 months still don't know what if any the effect of the rads has had on my lung mets, I've rung the hospital about this, seen my GP about this, spoken with my Oncs secretary about this and still no appointment date they just don't seem that worried :0(
Sending you love and light to you
You are NOT alone. We are all here. The news you've had is very disappointing. You should definitely pursue more 2nd opinions. It probably seems overwhelming at the moment as you had been thinking that you were NED but once you've had time to absorb what you've heard gather your strength, gird your loins and get into that fighting mode that we all know you have!
Meantime, you know you can get help, advice and support here.
I am sorry to read that you are feeling so low, the helpline is open if you need a listening ear, it may help a little to talk things through with someone (0808 800 6000)
Lemongrove, my heart goes out to you. Its bad enough having this dreadful disease without all the other stuff that you are having to go through. I can't solve these issues but I can tell you that whilst you feel alone you are not and there is tremendous support for you on this site - given the support and knowledge you have given us over the past couple of years.
You mentioned getting a second opinion, I would do that, given your disapointment with your consultant - you need to check that the radiologist is in fact correct and has read the scans correctly. You probably don't remember but I was on the other end of misdiagnosis, in that I was told that I had bone mets when in fact after a second opinion I didn't it was 'just' arthiritis. I do think (as you know) these scans are very hard to interpret and they need to compare with previous scans to identify changes etc before they can be sure. A second opinion would also give you the confidence you need to start any new treatment/regime that they suggest. Take care and lots of hugs xxxx
I am so sorry that you are in the position that you are. You must feel very frustrasted, angry and frightened but you are not alone. There are many of us out here in BCC cyber space whom you have given very good advice and support to, you have given so many of us hope and confidance. Now it's my turn to send a hug to you and let you know that WE all care about you.
I know you'll rise to this next challenge, but whilst you're a lit low have a hug from me.xxxxxx
You are SO entitled to have a moan. This is a blip and I know you will take charge of the situation and get a plan of action in place. Meanwhile give that baby lots of cuddles. Hugs xx
Sorry things are uncertain for you at this time. I'm a newbie but thought I'd send a big (hug) anyway.
(1) Was told in November 2011 that my scans showed NED, and so thought I was winning (even planned to have reconstruction). But that information was incorrect. In fact the cancer had spread to my spine (C2 and T12).
(2) Disappointed with Consultant. Was he being dishonest, or did he just not have the time to read the radiographers report/look at the scans himself? Also as it turns out they have suspected C at T12 since December 2010, why have they not changed my treatment?
(3) MY wonderful GP is giving up medicine (she doesn't agree with GP commissioning, and didn't go into medicine to be an accountant/ration treatment). I'm worried because I don't know who will take over, and if they will care about their patients as much as she did (she even used to phone every now and then to check on me).
(4) So I now have two tumours in the spine which are resistant to FEC and Femera (so don't know what the treatents are left), have a Consultant I'm no longer confident in, and will be losing a GP who has beed so encouraging and supportive.
Just feel utterly lost and alone.
Sorry to moan.