Spudgirl, sorry to hear yo have 'been in the wars'..its such a drag when things get in the way of starting treatment. I hope you are feling a little b etter and things can get underway soon. Fingers crossed the biopsies give you the best results possible.x
Thank you all! Although I would not wish anyone being in the same situation, it is comforting to know there are, and that we are all doing similar things and it means I have some people to bounce ideas off/keep me on track and share my fears.
I bought a notebook last last week and I have suggested we all write things in it about some of the fun/daft stuff we have done, I'm telling my daughter it's just so we don't forget this stuff, I'm not selling it to her as any sort of memory thing for when I'm gone as that would be too depressing,
It it all still feels a bit unreal though,
I was diagnosed in May but still have had no treatment apart from taking Alendronic Acid for the bone met. And I've had chemo delayed 3 times. First time was because I was talking to Christies about trials, (it's not happening for a few reasons) second time because my Onc said he wanted to try to get more scans before chemo and I looked stable enough at the time, then it got delayed again when the scan results came back as he then said he wanted to try to get biopsies before chemo.
The scans showed, as well as the lung met and bone met I knew about, I also have one just above my collarbone, several small ones dotted in my lung, and something suspicious in my bladder and poss stomach.
Tomorrow and Tuesday I will have biopsies in the areas they can reach, in the small hope that they may have changed from TN to ones with receptors and that I am being giving the most appropriate treatment. It's s very small hope, but you never know!
The fly in the ointment at the mo though is I ended up in A&E on Wed with pneumonia. I am on antibiotics but I can still feel the fluid around my ribs when I lie down, so I'm worried biopsies might get postponed while I still have the pneumonia.
Anyhoooo, that's another story and not the point of my original post in here.
Thanks again all, I'll probably be asking lots more as I go along.
I'm liking your cure too Carolyn!!
In all seriousness tho, they really are making great strides all the time in managing this disease and hopefully many of us have many years ahead of us.
I know exactly how you feel. My daughter is a bit older than yours, 19, but I remember coming out of the hospital, on the day I was diagnosed with secondaries, and thinking I'm never going to see her married, have children etc etc and the tears, at the thought of that, just flowed.
I'm now trying to live much more 'in the moment', not always succeeding, but trying to bring myself back to the present when my mind wanders to those dark places, which it does often.
This forum is such a positive place, hope you're managing to grab some of it to help you through.
I was diagnosed with secondary BC in lungs and liver in 2014.
Was told average life span 3 years. Then in the letter covering our consultation onc added but I expect much longer than that for KB. So now I'm 2 years on, with 11 year old son, and lovely husband, and a great life we built together. I work full time, and my dilemma is am I wasting precious time sitting in a job I don't need anymore, but it helps me focus on something other than Cancer. Today I was thinking its time to quit work. Let go of my comfort and start to exercise more, eat healthy, and do more for me. Then I read your post- and my answer is,I block out the worry by keeping busy. Scan is once a year - due in November, and I know I'll fall apart if there has been any spread. On letrozole so hoping for the best. Had 6 months of chemo- in 2014 which seemed to work. I tell God I need to stay till son is grown up.
I try to keep life as normal as possible. But it's not easy.
I don't have kids (my primary diagnosis came along just around the time I was thinking about it) so others are better placed to advise. But I wanted to comment on the 'how long have I got?' bit as I've really struggled with getting my head round that.
I'm pretty sure your onc was just quoting the average life expectancy rather than tailoring it to you. There are so many factors affecting survival rates and some ladies on here have coped with SBC for years. And treatments are improving all the time so hopefully that average will start moving upwards. Nobody really knows how long they've got (and the proverbial bus could throw any calculations out anyway!)
So I'd suggest focusing on looking after yourself and enjoying every minute with your daughter. I'm trying to treat my SBC as a wake up call to make the most of every day - I don't always succeed but I'm determined not to let this disease spoil however much time I have left.
i totally get how you feel and my daughter is 24!!!
The feelings of dread not being here for your children i think is the worst part of all this disease throws at us, whatever age they are. I know it is even more difficult when they are so young.
You were brave to get a prognosis..i have never asked. I got SBC in 2014 in my skin which has now spread tp pleura and bone.|I also changed from er+ to TN. I was hospitalised recently with pleural effusions and was visited by acute oncology nurses which frightened the life ot of me. One of them said, in not so many words, you could have 2 months or 20 but it will get you....that really hit home. Even now i cant bear the thought of not being here and missing out on my daughters life. Perhaps you could try making a memory box for her or writing a letter??
All we can try and do is be here for them while we can, spend happy times try not to dwell on what might be and keep hoping for new treatments too come along soon. if only i was better at taking my own advice!!
Anytime you want to talk we are all here for you.xx
Hi there, I had BC twice, the second time in 2013 - it was TN. I now have secondaries in my breastbone and lung, just waiting for scan results to see if it's anywhere else. Onc has given me prognosis of 2 to 3 years, could be more, could be less (usual guff I suppose)
The biggest issue I have is my 11 year old daughter, she knows I have cancer and it isn't curable, but she has no idea of timescale. I am married and of course she will have her dad when I'm gone, and she loves him to bits, and she has cousins, aunties, uncles etc, but my heart just breaks for her and I just can't get past thinking about it,
anyone else on here in same position? How are you dealing with it?