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

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

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

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.

Phew Nicky - that sounds a lot more positive :slight_smile: 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.
Nicky xx

Hi Nicky,

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.

Alex

Hi Alex
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

Nicky just read your news and really hope the new treatments works hunny

take care xx