Well, the email got results. Not just the one we were hoping for.
On receiving my email, Dr H acted on it immmediately which has affirmed my faith in him as my oncologist. Even though Middlemore radiology staff had still not reported on my scan – they were a little busy when I went on Tuesday…but still…. – he was able to access the scan itself and pull it up and compare it to the December scan, and see that it had grown significantly.
That was enough for him to be able to ring me and tell me that he believed it was definitely a liver metastases. We didn’t go into treatment options on the phone but this is what I do know from our conversation on Friday afternoon.
That he believes that it is metastatic
That because it is metastatic we are looking at control rather than cure.
That he doesn’t blame Middlemore for not picking it up in August because on the August scan it just looks like a tiny smudge or an enlarged blood vessel. It is only when compared to December and March scans that you realise that that spot was the start of something.
That the fact that my CA 15-3 marker, while above normal, is only 60 is good news because once it is a liver met, markers can jump very high even though they have been lower at initial diagnosis. The fact it is lower probably signifies slower growing/ less aggressive.
That we dont know whether Herceptin treatment has slowed down the growth or not. He said with ordinary chemo treatment, it either works or it doesn’t but with things like herceptin which are the targetted therapies there still needs to be more research/study done to know whether they can have a partial effect.
That while I was on the phone to him he was also putting a message through to his scheduler to make an appointment to discuss treatment options. (This was about 4pm on Friday so I didn’t expect to know until today when appointment would be – the scheduler has just rung me (9am Monday) and given me an appointment on the 30th March.
It’s been hard telling everyone – and everyone goes how are you feeling?
…and the truth is I actually feel fine (apart from the residual fatigue and aches and pains I’ve had all along) and psychologically I actually feel better in some ways – now that we know there is something definite we can start dealing with it rather than the maybe, maybe not fog we have been swimming in lately. I have always said the waiting the not knowing is the bit that does my head in.
Yeah we are dealing with control vs cure but that is all it is – I’m not terminal although one day I might be. It means I am probably not ever going to acheive remission long enough to be considered cured but as I have said in other posts you can acheive control for a long time these days.
Officially I was in remission 5 months the first time and 10 months the second time lets go for 15 or 20 months next time LOL
How is the family handling the news. About the same as me actually. Ever since I got diagnosed with IBC we have known it was a possibility so it hasn’t come as a huge shock to us. It is not something we wanted to happen, it is not the way I want to live my life but given the nature of IBC it was always a possibility regardless of how much we hoped otherwise.
OH is stressed but when I commented that I wondered whether I would need another spiral notebook ( I take one to all my appointments in which I write any questions for that appointment – and the answers) – I was referring to having so many questions and treatment that I used up the pages in this one. – His response was “I hope so ” when I looked at him for explanation he explained that he hoped I had several notebooks over many years of appointments/treatment.
OD was here when I got the call so was the first one to find out and after using a couple of expletives said “oh well life goes on” and then looked at me to see if I had taken offense. I reassured her that I knew what she meant. Life does indeed go on. Their lives and my life. Our lives may be changed and constrained by “Gertrude” but she isn’t what defines us. She went home and tweeted “F*** Gertrude… that is all”
MD’s reaction has been much the same – on Facebook she wrote ” Battle number 3 – here we come 😦 ” – I commented “and we will win AGAIN” and she was “yes we will Mum”
YD – well we had the ‘talk’ that the cancer has come back and that I will need to change to a new medicine to make it go away again. That if the medicine makes me sick I might not be able to go out with her every weekend like usual. That we would make a list of things she wanted to do and that by the time she came home for the whole weekend for her birthday (April) we would know a bit more about my new medicine and how it was going to make me feel and we would talk about who was going to take her to Australia etc. With her autistic tendencies/intellectual understanding we tend to give her time frames etc she can relate to – and we also don’t tell her any negative stuff she doesn’t need to know. I spent most of the weekend with her shopping and generally having fun one on one time with her – stocking up on clothes etc that she might need over the next few months. We prefer to do that shopping than get her staff at her residential service house to do it.
So there it is – I won’t know much more until my appointment but will keep you all posted when I find out – and now I’ve got to go and get ready for Uni – Life does indeed go on 🙂