Hi ladies
I was diagnosed at beginning of month with Invasive Ductal BC grade 3 and then told within a week secondary BC due to cancer spreading in my neck and all my lymph glands (although all the ones in my armpit are clear). I am also triple negative
Went for scan and had not spread any further. Me and hubby felt really positive. But then on Friday went to see Oncologist for first time and after pushing him he said the worse case scenario would be that I won’t be here in a month - but I can’t even remember the better case scenario just that things aren’t long term
He said we could try and attack things all guns blazing or the simple route. I told him I want to feel as good as I can. He has suggested Taxol and Avastin to start Wednesday
My lovely husband wasn’t at the meeting with the Onc so is seeing him next week - he just so believes everything can get better.
What am I meant to do? I’m beside myself
Hello Linda, so sorry to hear your news, its so shocking isn’t it and its hard to get our heads around it. Did you get offered a Breast care Nurse, sometimes they can really help to talk things through with after an appointment cos we all leave appointments not sure about something! . Also the secondaries threads on here are great so you may want to jump on there. Good for you for feeling you want to feel as well as you can, seems thats something you can be clear about …and other things will come to you, its just so much to take in. Other women on here in similar situations may be able to help you better than I can, very best wishes Nicola
Thank you Nicola. I know I’m not on my own and this website is a godsend. I’ll speak to the BCN tomorrow but in the meantime read the positive messages others have put
xx
Firstly, I want to say how sorry I am to read about your awful news. Secondy, I would like to say that I’m very confused by your Oncologists prognosis. If you don’t mind me asking, has your cancer spread to visceral organs ? If it hasn’t then I cannot understand why he/she thinks you might only have a month to live. Even if someone has metastases in the liver or lungs, they can live for years. I met someone last Thursday, who was diagnosed with metastatic bowel cancer in the liver and lungs nine years ago.
Maybe I’m missing an important point, and someone else will explain things for you.
Hi Linda
Sorry to hear of your diagnosis, all of us on here can identify with how you are feeling. As lemongrove has just said, I can’t understand the month comment. Nobody knows how long any of us have! It depends on so many factors. When I was first diagnosed with secondaries I was told by a registrar that I probably had on average 2 years. After coming on here I soon realized that that was rubbish and am cross I was told this. as well as making many good friends on this forum one of the main benefits of coming on here has been making me aware of many people living with secondaries for many years, their support and encouragement has given me the belief that I am living with secondary cancer NOT dying of cancer! And will continue to do so for many years!
Please do take comfort from all the positive stories…nobody knows when your expiry date is!
Take care Nicola xx
Hi there
so sorry you’ve been having such a tough time of it being diagnosed with primary bc is hard enough without the secondary dx thrown in. Firstly, I’d like to ‘invite’ you over to the ‘triple neg recurrence/ secondaries’ thread in the ‘living with secondary bc’ section. We are a friendly bunch, all having a tough time of it but supporting each other along the way 
secondly, I have to agree with lemongrove- I was shocked + confused to read of the possible 1 month prognosis!? If your organs are clear, I find it very hard to believe that you could have such a limited time left. I would really try + put it out of your head. I had a really negative experience with my onc last sept after being diagnosed with mets to skin + chest wall. She said I probably wouldn’t see Xmas + organ spread would be immediate etc. Well we are nearly in April+ I’m feeling well. In fact were just on our way home from a lovely weekend away in Edinburgh. Whilst there has been progression to lymp nodes at collarbone , my organs are clear (*touches wood*) + the chemo I am on for the nodes is working well. A scan a fortnight ago showed about 70% shrinkage after just 3 cycles.
Your onc has no absolutely NO idea how you will respond to chemo + how things will go. Please be as positive as you can + believe the treatments will work.
All the best
Tina xx
Dear linda999,
I am pleased to see you have already had so much support from other forum members and that you are going to speak to a BCN tomorrow.
You could also give our Helpline a call to talk things over. They will be open tomorrow at 9.00am. The number is 0808 800 6000.
Very best wishes
Janet
BCC Facilitator
Hi Linda,
Sorry to read your diagnoses, but welcome to the forum.
I completely agree with what everyone else has said, so won’t repeat.
Only other thing I can add is that I have bone and liver secondaries and I’m coming up to my 2nd year. Taxol and Avastin were my first combination of treatment ( + zometa for bone). It did a fantastic job for me and I found the side effects tolerable.
Hope they work for you too. And repeat for emphasis: - do not believe the one month nonsense.
Take care xx
Thank you to all of you. I have not been able to reply as some little critter seems to have got into my laptop.
I just wanted to tell you that me and hubby went back to ONC (I went on my own initially) and lo and behold I got it wrong. There was no mention of one month (don’t ask I can only assume my head had overloaded at this stage) He has still said that worst case scenario would be 3 months plus but a better case scenario would be a few years. He aslo added like you said that he cannot say anything for certain. I just told him I’m a fighter and it will be great when I prove his predictions wrong!
He has however said that on my pension forms (trying for ill health retirement) etc he will put that I will ‘probably/possibly die’ within 12 months - is he just trying to help me
ps I had my first lot of Taxol and Avastin yesterday (plus cold cap)- so fingers crossed
I feel so more positive today:)
Hi Linda
I was told in October 2009 that I may have less than 12 months to live - spread to my bones, lungs and liver!!! But here I am, yes, still on chemo but doing okay and very determined to keep all treatment options open and live each day as best as I can.
My GP and my Onc signed all my necessary documentation saying that I probably had less than 12 months to live and this has enabled me to take early retirement on favourable terms and recieve lump sum payouts that have helped us a great deal as I had a good salary coming in before all this started and two children hoping to go to Uni!! Need I say any more??
So, take all the help you can get at this stage. None of us know ‘how long we have got’ except those of us with cancer, as the saying goes, can ‘see the bus coming!’.
I try to make sure I do something nice each day, can be anything as long as you enjoy it: lunch with friends, reading a good book, having a lovely walk, just make sure you ‘live’ each day. We all know on here what it feels like to have this awful diagnosis but, whilst it won’t feel like it at the moment, it does get better as more time passes.
My very best wishes to you and your family, Sue x
Brilliant news linda !! So glad ur feeling positive + your onc has clarified things a little. You have lots of treatment options available to you so hang on in there! Best of luck with the taxol+ avastin combo- hope you have a great response
tina x
sue/tina
Thanks for your reply, its great to know you’re out there - although sad we have to meet like this.
I think I’ll change my username from Linda to the nickname I’ve always had - Smiler