**** - now it's invaded my lungs!

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

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

x

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 .
Jean

I have replied on facebook. I am so annoyed and upset for you.

julie xxx

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…

x

Hi

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

Hi Nicky
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

Love Linda
x

Nicky

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.

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

Hi Nicky,

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.

Alex D

Hi nicky,

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.

Jillxx

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!!!

Take care,

Sadie Xx Xx

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.

Nicky,
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 royalmarsden.nhs.uk/radiotherapy .

Hi Nicky,
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

Hi Nicky,

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.

Best wishes,
J x

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

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.

Hi Nicky
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.
Take Care
Nicky xxx

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