dear jane you are in so many our thoughts . you are a inspiration to myself. it was 4 years for me last week and i am triple neg too. i have been reading these forums for 4 years and have only now had the courage to post. keep smilingx
Anniversarys are hard. It is always a looking back time for me and wondering how would life be if I didn't have this c**p disease. Thinking of you and hoping things are ok for wednesday.
24th October the day I had my lumpectomy in 2006.JaneRA is the person I look to for 'tell it how it is'triple neg information.A truly amazing person who would hate to hear me say that[sorry Jane].A slight digression-my prognosis was given for 10year survival not 5 anyone know why some do it that way?
from someone who hasn't yet reached the first anniversary and who is still ungerging treatment for primary BC I would just like to add that your posts have given me great insight, knowledge and strength to deal with the unpredictability of this dreadful media fuelled designer disease
You were one of the first to respond to my first post about 'how to stay positive'' and your measured response ensabled me to start dealing with issues in a more realist way which was right for me. For that and all your other posts I will be forever grateful.
Long may you cancer remain indolent and contine to defy statistics
Very best wishes
I am not quite at the five year mark, it will be 3 years in January since I was diagnosed, I was 37. I had the works at the time, mastectomy, 8 chemos, 4 weeks of radiotherapy, one year of herceptin, ovaries removed, and now I only have to take one little pil a day, tamoxofen. My cancer was HER2 receptive. At the time, about the only thing I could remember, is the doctor saying my prognosis was 'good to moderate' so I have clung on to the 'good' and forgot the 'moderate'. I am doing fine just now and feel pretty much normal most of the time.
Can I ask you though, how do you know if you have secondaries and if you have a pain somewhere are you just being paranoid or should you get every pain you have, within reason, checked out ? I dont like to bother the doctor, and pains come and go, and by the time I get to see a doctor the pain is usually away and I feel like an idiot....
I'm afraid my philosophy for myself is pretty much to just get on with life and hope for the best.
Any advice you can give me would be appreciated and I wish you and all the others on this forum the best of luck.
Today is my 2nd yr aniversary of my mastectomy op. Like Jane I too went through the early dark days imagining that there was no hope, that I would die soon. To my knowledge, I do not have secondaries, YET. I say yet as I am not convinced by stats and an improving recovery rate that we hear all about.
In my case, current testing for secondaries is totally inadequate. My Onc wont give me further scans even though I have lympth node involvment (some do get them on here I know). I am told current testing will not show up mets until they are past the microscopic stage. I understand that, but at some point they get bigger, and l am told to look out for pain or lumps. I know again from here that some people have neither of these symptoms and still get that awful diagonosis.
I recently was talking to a nurse I'd met through a friend. When I explained the 5 yr stats thing she was horrified at how our future is mapped out to us using 5 yrs as a span of time, and I was amazed how out of touch she was (in her defence she is a midwife and not working in general medicine anymore). But still, people untouched by this personally have no idea what that 5 yr prognosis feels like to live with.
Jane I am so pleased you reached yours and the stats worked for you, even though you still have your continuous battle to live with. I am under no illusions though. My friend died earlier this rear just over the 5 yrs, and she had had the best possible prognosis (her onc's words).
So it's a bittersweet celebration, but to all of you with an aniversary to celebrate, I am very happy for you, and hope your remaining time is as pain free and worry free as it can possibly be.
Oh Jane - you are incredible. I admire your strength and you continue to give. I live in fear, I try to put in the back of my mine and when I read your posts and also of other ladies here I am humbled and embarrased about my fears and I'm technically dx at early stage.
You are my hero
It's five years last week for me, too. I started chemo on Halloween 2003. Talk about fright night.
Even though I have been lucky so far, I have found myself thinking back lately to all the people I knew who didn't make it. There are those who I know did not make it and then there are the missing presumed dead, like Jacqui19, who was on taxotere with us. It's harder not knowing what happened to them.
I have always been impressed by your eloquence and your generosity in sharing your knowledge. I was sad when your cancer came back because the triple negative need a leader.
I hope your cancer stays lazy and that they find something works.
On this notable day in pink/black October, you would not wish for praise. You would certainly not wish for pity. But you deserve - and I hope you will accept - recognition as your online voice rings out clear across these forums and beyond, despite your current physical limitations. Long may it continue to do so on behalf of us all and of those who are sadly no longer with us, until breast cancer is a thing of the past.
Very best wishes
Hi Jane,It's coming up to my five year anniversary as well.I don't have to tell you how lucky I feel to still be NED.My triple neg prognosis wasn't a good one but somehow I seem to be keeping on the right side of the statistics.Sadly I look back to the friends I have lost to this horrid desease and to the day when a cure can be found for it.I know there are many of us here on the site who have turned to your wise words to keep us going,and may I take this opportunity to thank you for being around - and here's to the next five years!!
Your words are very much from the heart and reading them i can feel that heart aching
I am only 3 years since dx and i am lucky to have a good prognosis though recently had a set back with
a dx of kidney cancer. Again i have been " lucky" in that it was found at an early stage.
I have no words of wisdom just had to tell you my heart aches too for all of you women
with a secondary dx. God willing you have many more times of pleasure enjoyment and laughter.
I too am reflecting my five years since diagnosis - for me it was Monday, my brother's birthday - not a date I'll forget either way. I too had thought I'd 'got away with it' but, despite a very good prognosis, BC has turned around and bit me on the bum and I now have secondaries. I guess they were right to say I'd still be here after 5 years but not in the way I'd like to be. Your words are always well researched, meant and read - please keep them coming. I hope we have many more posts from you over the years and I hope you are doing well.
Your comments as always are very honest, and real. I too like you are triple negative (in operable with regional spread). My nightmare only started in March but I have always found great strength from your comments as I know other have too. I trust they will continue for many years to come - as one polititician said there are lies , damn lies and statistics. I take each day as it comes some are good some not so, but I do try and cherish each one. If we get anything from our predicament it is an appreciation of many things the rest of the world takes for granted.
Congrats on the Five years take Care and keep writing
what a beautiful, thought provoking, sensitive post.
Only when I read your posts do I wish I had paid more attention during my educational years. I was always too busy trying to get out of the gate to get on with my life.
The life that will be robbed by a cancer I have no control over, did not invite into my body but is doing a very impressive job of shutting it down. Sometimes it feels it is travellng in slow motion and other times it is a bit like that bloody bus we talk about, coming at full speed and from nowhere.
Take care Jane and I hope we will both be around to read your post regarding your tenth anniversary.
It’s five years today since I was diagnosed. The days and dates match this year..so it was then another Wednesday, another sunny Wednesday.
That moment at about 6.05pm was the worst of the my life and remains so. In the hazy desperate days that followed as I realised I didn’t just have ‘breast cancer’ but a poor prognosis I couldn’t envisage living 5 years and didn’t expect to. It’s funny how you adjust. I had ten months of treatment and then 2 and a half years NED...hoping that maybe I had fallen the right side of the statistics. Hadn’t. Didn’t. But the cancer I’d got was slower, more indolent than its aggressive label back then presumed. I am now in those arbitrary 80% statistics that get reeled off to us, but not with any sense of ‘victory’ or triumph. I won’t live, will die. I would not have believed back then that getting 5 years was better than two, that living with uncertainty could be managed..no choice but to. ..that I could and would and do live with continuous treatment.The whole thing has been ghastly and very hard..there are no bonuses, none whatsoever with having terminal cancer, but there are times of pleasure and enjoyment and laughter...and that’s the most and the least I can hope for. This is for all those I have known who didn’t make five years and for those they loved.