Hi Fiona,
Once the cells are in the rest of the body, there is little point in removing the original tumour so If you are diagnosed as stage iv from the beginning, it is unusual to have surgery.
Jenny
Hi Fiona and everyone…I was diagnosed with stage 4 from the beginning, in 2003. I have bone mets and my primary has been ‘‘useful’’ in guaging how well my treatments work.
It used to be said (a few years ago) that a mastectomy could perhaps cause further spread but you do hear of more masts being carried out on stage 4 patients now than when I was first diagnosed.
Belinda…x
I was dx in June with secondaries in pleura, on aorta, in bones and liver.
Originally in 1999. then 2003.
I have had 3 Epirubicin and am now on 3 Docetaxol.
I would love to meet up if you do it again. I live in Sussex - I can get up to London - where do you meet?
gill
Thanks for all the comments, I was also advised that leaving my breast lump in place would provide a useful guage as to the success of any treatment.
I am awaiting blood tests to confirm whether I am pre/post menopause following chemo and will then start hormone treatments
Fiona
Hi Gill
just to come back to you - we usually meet at St pauls - for no other reason than its quite central for those coming from north stations from hertfordshire or from waterloo…would love to meet you in person…maybe we can organise one soonish do look out for it…everyone at london meets is always happy to meet ‘new’ people in person and its quite informal…
hope you are doing ok
cathy
Great I can do St Pauls - do we have climb the tower?
I will look out for your dates.
gill
Hi everyone. I too have mets and primary dx all at the same time- in August 08. I have not had surgery (they said no point as it had already spread) and I am on Femara which the onc hopes will control all the tumours at once. I feel fine at the moment. Saw the specialist this Tuesday and they didn’t schedule in any tests to see how it was going - the onc said they would not do any until I felt some more symptoms. Otherwise I would just spend my time waiting for, and worrying about, whether the situation had got worse. Fair enough, I guess - if there are no tests I can fool myself into believing nothing’s wrong! (Consultant shrink said it is patients who are in denial about cancer who live the longest- apparently they’ve done studies. So good old denial is an excellent coping mechanism, apparently) I didn’t know the odds were so poor until just now when I read the thread - everyone at the hospital has just said it’s impossible to say how because everyone is different.
Hi kittybuttoon and everyone else I was dx with mets at 1st dx in march 07 I have them in my liver, pleura, and lymph glands. I have a lump in my breast as well and on my clavicle in neck. I the lump in my neck was removed originally so that they could carry out histology to determine where the primary cancer was. I didn’t have any lumps in breast at that time.
I had 6 cycles of FEC and now on Arimidex and Zoladex. The lump in my neck has grown back although not so big and I was also told that this could be a guage to see how well the treatment is working. So far my mets are stable, I havn’t had any further tests , have to have a ct scan in Nov as it has been 6 months since last one. So everytime I see onc they just do a blood test and ask me how I am. I was told that they wouldn’t change anything until I start to feel ill again.
Kiitty do you just have mets in your liver?
Not just the liver - I have bone mets, too, Caroline. They treated my spine with radiotherapy which was brilliant -the pain has gradually faded away over about four weeks. Apart from a bit of residual backache, I feel fine.
For you and me both, they seem to think that our conditions are going to vary so much, that they will not change treatment until something hurts.
They seemed hopeful enough about the Femara (which I think is an aromatase inhibitor like your Arimidex?) containing the tumour. The onc said they were hoping for a remission this way- but they don’t seem inclined to check whether it is working, which leads me to believe they are not very confident. However, that is just what I have read into the situation, so it may not be that way at all.
I am trying to cope with the worry, but it’s a bit hard, isn’t it? I am trying to get out a bit more and take my mind off it, and not dwell too much on little remarks by the onc and the nurse. I keep telling myself that nobody knows how it will go. How are you managing today?
Hello Kitty
It is very hard It took me over a year to come to terms with the fact that I have a terminal disease and I felt somewhat cheated that I was dx with stage 4 at the beginning. I felt that I hadn’t been given a fair chance (if you know what I mean)
I ahve had a few problems along the way I have had both my lungs drained (at different times) of fluid and have had the lining of my lungs stuck together. I was also admitted last year as an emergency with fluid around my heart which was also drained off.
The last time I was in hospital was in May this year when they drained my right lung and I have felt a lot better since then.
I have decided not to waste the time left and just get on and do things thats the way I have been dealing with it at the moment
Hi
I wrote a huge reply to you and then the computer just switched itself off and it disappeared!!! probably a good job as if you see I’ve posted, I’d get a cup of tea first and put your feet up. I tend to write long replies which is not helped by being on steroids for 4 days every week which make me hyperactive!!
I’m so sorry that you’ve joined us. We are very supportive so please post any question/concern/rant or worry and I’m sure someone will help you. We’re very bad at using at abbreviations and I know when I firsts tarted to use this site I was always asking what does this mean so just ask if it doesn’t make sense.
You’ve really been thrown in at the deep end and I’m not surprised you’re struggling. I was diagnosed in april 05 with a large tumour and large lymph node so I knew my prognosis was poor and sadly that is how it has turned out.I first developed skin mets (the medical word for secondaries - metastases). Then in august )^ I developed a new cancerous lymph node in my other side. I’d struggled all summer with poor breathing and being unable to lift my left leg but all the scans in may 06 showed nothing. In sept 06, the scans showed whole lung involvement in my lungs but in my lymph system, bony ones in spine and left hip and a 3cm one in my liver but away from any blood vessel or bile ducts and have been on almost continous chemo ever since. I’m hormone negative so don’t have that option. I waas told then I might only live 3 months which when pushed he said if I was lucky I might get to 2 years so have achieved that which others with better prognosis than me have not. Breast cancer is so unpredictable. I’m so sorry you found out via the forums about the seriousness of liver spread through the forums but there area lot of women who post who have lived years with liver mets so don’t despair.
I think some oncs like to drip feed the info as it is such a shock and if he gave you the stats what does that really mean - you could fall either side, you just don’t know. I would think about what you want to know and how you would cope if you ask your prognosis now. For me, I’ve always wanted to know but know many people who don’t. You have to do what is right for you.
For me, knowing that I had a poor prognosis meant that I’ve had the time to create special memories for my family and do things like memory boxes which other people have not had the time to do. Sorry to be so morbid. We’ve had a lot of support from charities and been able to have really good fun at places that we’d never have done otherwise. I enjoy my life and although it is far from normal for a 46yr old, my perspectives have changed and so, yes I now use a mobility scooter but it means I can keep up with the family and the kids love it cos it seems to collect static and they like to ‘shock’ me!!! I think I cope by being an ostrich at times and other times a realist.
This site is brilliant and is the reason I think why I’m still here as you learn so much of other people’s treatment and their oncs opinions. The ask the nurse service is brilliant too as are the days BCC organise. I’ve made ‘real’ friends there as well as the cyber friends, I’d already made. There is also live chat for us secondaries girls on a tuesday night. It can be a bit emotional but very helpful as there is a nurse who is online then as well. Maybe give it a few weeks first or maybe you want to join us sooner.
The pain after rads is awful isn’t it - I thoiught I’d made a huge mistake a week after having it done but it has made a real difference to my pain and mobility. I hope you are having biphosphonates (some people here call them bish bosh) for your bones. That helps with pain as well.
Must go - got to see son’s teacher - He has been very naughty and lying about his homework.
Please keep posting and ask anything - we won’t laugh at you - we’ve all been new at one stage to this site and often it is the little things that we daren’t ask but really worry about.
So sorry, you’ve joined us but I’m sure yiu will be very much welcomed and supported
kate
Kate, you are so nice to write such a welcome! I must get some of those steroids if they make people as energetic as you! You know, I have been really puzzling over what bish bosh is - and now I know. I am having some of that every month. They gave me morphine to take after the rads but although I didn’t need it, the pain was shocking so I just thought it hadn’t worked. However, now I have just got back from a walk to my sister’s and am feeling very proud of myself for making the effort. Rather envied her stilettos, but somehow I think they might have been causing her even more pain than I am in.
I didn’t know about the online chat. My husband is always out on a Tuesday so I will look forward to settling down for that.
Hope your son is not in too much trouble, Kate
Kitty xxx