The HER2 status is still negative! That would have been a major issue if it'd changed! I had a biopsy last May and my oncology team needed to send for the sample from the orthopedic hospital to test it. I asked for the results so many times. If it had changed and I had been denied herceptin due time delays I would have been furious!
I didn't need to ask about cyberknife, I could see for myself how many widely dispersed spots I had! At least they are still tiny I am still hopeful that Xeloda will do its stuff! Nothing else has so surely I am due a change of luck!
Take care xx
That all sounds a lot more positive. Its amazing what a difference good communication can make to us. What is the result of your HER2 status?
Xeloda works for a lot of people with secondary BC.
Phew Nicky - that sounds a lot more positive 🙂 Glad you had an in-depth conversation, and a more detailed explanation, with your oncologist. Hope Xeloda does wonders for you and beats those little uggers into submission.
It sounds like a positive meeting and the main thing is that you are happy with the outcome. Just two little comments though.
(1) With regard to them wanting to wait for symptoms before doing a bone scan: At my hospital, they do bone and CT scans routinely every six months,so there is no reason why you shouldn't have scans routinely, if that is what you want.
(2) While your liver mets might be too dispersed for Cyberknife, you might be a candidate for TomoTherapy, so they could refer you to a specialist in stereotactic radiotherapy for evaluation - again, that is if you think stereotactic radiotherapy is something you would like.
But I am really pleased that you're feeling happier about things.
Well…..I am still with the same oncologist, don’t shoot me down please? My GP had complained quite vociferously on Monday and got me an appointment for Tuesday. I had the best appointment I have ever had with him, only 2 other people waiting and we were within the hour of the appointment. He was very nice, but had quite obviously listened to my GP’s complaints, because he answered all of our questions/issues before we asked them. Even left with next appt for scan and follow up…with him!! And…big and… I have been waiting for HER2 results for over a year and he even presented me with them before I asked! The upshot is the liver mets have grown…..before 10% of the liver was covered with tiny dots, now it’s about 20%, no single one is more than 1cm, which is good., but means cyberknife wouldn’t be an option as they are scattered all over the place. My liver isn’t enlarged at all, he did an extensive check of my neck, shoulders, abdomen etc, something else I realise I have never had before.
The lung progression isn’t really as much of a concern, as I had anticipated. I have 3 lymph nodes infected, which means it’s reached my lungs but the nodes have been doing their job! There isn't any evidence of progression in the lung itself. Perhaps this is why oncologists like to report information themselves not through a third party!
My bones look as if they’ve stabilised! although he did comment that it was harder to determine this on a CT scan, but as I haven't currently got any bone pain (even my neck is fine) he said that he wouldn't do a bone scan, until I felt there was any change. He doesn’t think the breathlessness can be due to lung problems as all the scan is showing is 3 enlarged nodes, probably more due to general fitness (or lack of it!)He sent me away for a blood test incase I was anaemic.
He has changed me onto Xeloda, due to start next week and changed Zometa to 3 weekly. I do now feel quite positive about things, particularly I can now go back to work in September as planned.
I thank you all for the excellent advice that you gave me. I had listened and actually instructed my GP to demand I change oncologist. He came straight back to me with the opinion that the oncologist I had was very good, but accepted that there were issues that needed addressing. He obviously had expressed exactly what my issues are, as my appointment yesterday was exactly what I should have had all along. It is a shame that I had to chase up appropriate treatment, but hope that this is now the way forward!
Thanks again for all your care and support xx
hi nicky, really sorry to hear it has now appeared in your lungs. It is a b...... of a disease!. Firstly Nicky i think your care has not been acceptable, you need continuation of care with the same doctor when at all possible, and waiting for that length of time for results is Not exceptable. I am ashamed to say that I am a nurse working in the NHS where standards of care seem to vary greatly,some fantastic, and some s... !.
My sister has recently been rediagnosed with secondarys to her bones and lung pleura. We have also lost confidence in her team after having a hard lump in her tram flap reconstruction which 3 doctors have seen, and all said it was fat necrosis.NO scans, nothing, despite my repeated asking of "how do you know it is fat necrosis and not cancer". PLastic surgeon told me to "Susshh, it is fat necrosis because it came just after her op". finally got them to take a sample and GRADE 3 cancer - 4.8cm by 2.5 invading chest wall and spread. NOT HAPPY !. she has had this lump for 18 months.Anyway, to cut a long story short, I will be putting in a complaint. my sister needs to concentrate on her treatment. ask your g.p for a second opinion. We went to the Marsden, professor said weekly taxol for lung problem and chest wall reoccurance was the most suitable treatment which she has started at our local hospital. He wrote to our local oncologist. She is also getting zometa monthly for bones. scan after 3 cycles and tumor markers monthly.
nicky,from my experience, those that shout loudest and have some knowledge seem to get further. GET someone to complain on your behalf. ask your G.P to refer you for a 2nd opinion, and get some new treatment started. I beleive the taxanes are the gold standard for mets to lung, liver. What treatments have you had already ?
take care, hugs claire x
Nicky, I'm so sorry to hear your rotten news, you must be just bowled over. I hate the way people think they're dealing with this disease then get the rug pulled from under them all over again.
Sounds like you've had a nightmare with your onc and treatment in general - you need that change of consultant, so that you can have confidence in your team, great that your GP is so supportive. The prof sounds like a good alternative.
Good luck - I'll be checking your posts and thinking of you xxx
That definitely is cr@p news and I'm so sorry that you're now having to deal with lung mets. I don't know (or have forgotten and can't find) your exact (mis)treatment from your current team but I'd go along with the others have said on here and get a referral to a centre of excellence. You shouldn't have to do this but it sounds like you have been so let down that you need to. Sending big hugs and really hope one of the chemo's already mentioned on here will do the trick and get rid of all the little buggers.
Nicky, just to add, if you decide to go to another hospital, all you have to do is ask your GP to deal with the referral, so please don't worry that you will have to deal with your current hospital.
I know that there are many very good hospitals that are probably closer to you, but the reason I mentioned the Marsden, Mount Vernon and Barts is because they have Cyberknife, and I think that could be very useful for your visceral mets. As I said in my pm, let me know if you want the names of the doctors who set up Cyberknife in these hospitals.
Oh Nicky,you've been treated apallingly and it's terrible you're having to battle to get adequate treatment when you're going through such turmoil as it is. I hope you get another team and quickly and get the support and help you need.
I was diagnosed in Feb 08 with secondaries in both lungs and around collarbone(primary and primary recurrence in 02 and 07 respectively)and I was treated with 22 weekly doses of taxol with fortnightly Avastin and since Nov 08 all PET scans(6monthly now)have been clear of active diseaseand since then I've been on Arimidex and Zoladex and keeping well at the moment. I wish you the same success.
I find it sickening that your GP had to chase it up but good that you've got him fighting your corner but he shouldn't have to!
With every best wish and positive vibe to get sorted out and feeling secure with your team as soon as possible. An official complaint should be lodged - get someone to do it on your behalf.
Love Anne xx
Like the others, I think you have been treated very badly and have every right to ask for a referral to another oncologist. Have you thought about contacting the Christie in Manchester - I am very pleased with the treatment I have been receiving there for the past three years, first with primary and now with bone mets.
I havnt posted for ages but keep popping in every now and again, I am incensed that you have been treated so badly by your onc team, I just cant believe that you never see you oncologist, I am so mad that I dont even know what to say, I am so sorry that you have now got mets on your lungs you must be so frightned, having them on bones is bad enough, I am sending you all the hugs you can cope with, just push me off when you have had enough XXX I think Lemongrove is right you should think seriously about getting a referral, having read some of her posts she has a wealth of knowledge and gives good advice.
My heart goes out to you.
With all my love Roz xxxxx
On the Telegraph website an advertisement for cyberknife at the Marsden keeps appearing, with info about how to be referred. This is the site in case it is of any use http://www.royalmarsden.nhs.uk/radiotherapy .
Nicky I read your other post about the treatment you have received, and now I'm getting worried for you. I know that Clatterbridge is in Cheshire, but I really think you would be wise to get a referral to either Mount Vernon or The Royal Marsden, because they both have a wealth of experience dealing with metastatic cancer, and more importantly, they both have Cyberknife stereotactic radiotherapy, which could possibly be used on your visceral metastases. Mount Vernon is in Middleses, and The Marsden is in London and Surrey (but the Cyberknife is located in London).
I know it's a bit of a jaunt from Cheshire, but other than receiving treatment it wouldn't be all the time, and some hospitals in London provide overnight accomodation for those undergoing treatment.
Hope you don't mind but I will pray for you.
Hi. PANTS basically. But there is hope. I am tnbc, numerous lung mets found in feb. Now on weekly taxol with avastin with good results. All mets shrunk or gone after 3 mths. On number 15 now. More scans after number 18. It is hard going, but clever. Avastin is not nhs funded but there a special government pot of money that can be applied for. Ask if it is a possibility for you.
I cried nd sobbed for days, hugged my children nd planned my funeral when i first found out. But life is more normal nd positive now. Loving life nd living each day whilst planning lots more!!!!
Sadie Xx Xx
I was diagnosed with secondary to my left lung in the pluera, I had 6 x docetaxol chemo and all ct scans show normal. It wasn't easy but it has worked. Good luck.
I am so sorry to hear your news. You have been treated dreadfully. Next steps, sack oncologist, check out chemo's available, and then choose the most effective.
I am going to pm you as I have a question that you may want to ask.
Hi Nicky so sorry for u I've got lung mets im tn and am on 6 carboplatin / tax which after 2 reduced them by 80 percent I hope u get some gd news sn Laura
I'm very sorry to hear about your results, over which no one has any real influence, but even more sorry to hear about how the CT results were dealt with.
My wife is being treated in the Karl Olga hospital in Stuttgart, Germany. When she has a CT, Dr H brings her in after about 30 minutes and tells her what's going on. THERE IS NO REASON TO MAKE PEOPLE WAIT!!! And this has been at a time when the CT department has been shunted to and fro because of building work. It's purely an attitude thing. The Karl Olga haven't got anything particularly special that the NHS hasn't got - just a doctor who told us that a secondary diagnosis is enough and he doesn't see why patients have to wait a minute longer than necessary to find out what's going on.
I can't offer any advice but wanted you to know that we're all thinking of you. It really is crap - both the disease and the way we are sometimes treated.
I wish you all the very best and hope that you get to see another consultant
So sorry to hear the news, you really have been through it. Youve got to get another onc team. I'm under Proff C at Clatterbridge and I nearly always see him (although I do travel to the main hospital at Clatterbridge from Lymm) I rang Clatterbridge last Friday asking to see him next week when I have Herceptin. I've had a cough for a few months and it's not going away so I've got to get it checked out.
Thinking of you, ring me if you want to talk.
Love Sue x
Nicky I am really sorry about the news you have had and can't believe the treatment you have received from your team, who are after all supposed to be caring for you. I think you should clearly say that you have lost confidence in your team and you demand a second opinion and a move to a different oncology team - its bad enough having this dreadful disease without being treated like dirt.
Good on you for perserving and getting your scan results but you now need to save all your energy for fighting the disease and need a team who are helping you do this - rather than having to fight to get the treatment you need and deserve.
I can't help in respect of chemo treatment but I am sure there will be ladies on here who will give you advice and suggestions and treatment regimes that you can take to your new oncolgy and get moving on a treatment plan asap.
It seems you have your GP fighting your corner with you which will help - you need to get an appointment next week and demand some explanations as to what has gone wrong and what are they going to do to put things right....
HI Nickie, so sorry to hear your recent CT scan was showing lung mets, I have just completed my chemo treatment , I had primary and secs dx at same time, I too was devastated. I have had 6 tax/carboplatin/herceptin , today my CT results have come back with very good results, I had multiple mets in both lungs now I have only one ! and its so small its unmeasurable,and my primary BC and lymph nodes are pretty clear , so please don't loose heart, I know you have had some problems as I read on another thread, but hopefully next week will bring you better news even if it's only that you have a new Onc, sending you a big hug .
I am so sorry , its pure s**t what u have been through . I really feel for u xx . You have been treated appalingly keep talking on here , though i am not in a position to offer advice but i will listen
FondestThoughts and a massive cyber hug
Finally got my scan results and definately NOT what I wanted to hear! ... IT's now in my lungs!! I am alternating between sobbing hysterically and losing it with frustration at how pissed off I am with my consultant and the team. A doctor from my GP practice phoned to say that my CT scan results had been sent to him (so finally somebody at Clatterbridge does what they said they'd do, bizarrely it was another oncologist's secretary, not mine, which actually says it all). He reported that the liver mets have grown and new ones appeared in my lungs, He was lovely and listened to my ranting/sobbing, I asked how I go about changing consultant. He said he'd phone Clatterbridge on Monday morning and explain how unhappy we are. What has made my husband and I so cross, is that the CT report has managed to get filed away without anybody flagging up serious progression and attempting to do anything about it. That shouldn't happen! If I hadn't made a fuss about the length of time before getting results, I would still be in the dark and having unnecessary treatment. I was told there were no appts until 31st August, so god knows when a decision will be made about what treatment I have to change to.
Those of you with lung mets, which chemo was tried first with you? I guess chemo is on the cards, as I have tried all AI's without success. It makes me wonder if my hormone status results have changed, as surely they shouldn't all fail!
Perhaps I should ask everyone on here, which chemo they have had if they've been in my situation, then go to the hospital and demand I am given that one. You lot know far more about relevant treatments than my oncology team anyway. I trust you all to have my best intrests at heart, how terrible is it, that I can't say the same about my consultant!
Thanks for listening! xx