This is an interesting thread, sorry I missed it before, but I try not to be on here too much.
I passed my five year mark in May, and even celebrated ‘five years clear’ with a works lunch out. Which was great fun, as I’d won some breast shaped biscuits in a raffle the previous Christmas and shared them around and we all had a good laugh. Turned out it was premature as I got a bone secs diagnosis in June, after months of hip pain that I should have recognised as serious. (How embarrassing is that!)
Before the secs diagnosis, I really had managed to get to the point where I wasn’t thinking about cancer every day, had even slipped back into the old pre-cancer mentality of not consciously trying to make the most of every day.
I too would be interested in something (meet up?) for those of us who are 4 or 5 years plus, as my feeling is that the longer we live with this disease (especially those of us with secondaries), the less time we have left. That really hit home recently when I came up to the one year post secs diagnosis. If I only had a reasonable expectation of 5 years with secondaries, then, good grief, a fifth of that has gone already. I can’t believe how quickly the days are rushing by, it’s now nearly August, we’re racing inexorably towards the end of 2009. Do others feel the same? That time is just slipping away from us.
I was unexpectedly sick on Tuesday night and then spent the whole of yesterday in bed. Inevitably hubby and I thought the worst but I’m sure it’s just a bug. I feel loads better today. But isn’t it horrible that with every little thing we get, we quite naturally fear the worst?
Liverbird – I have scans coming up soon too and it is really scary, isn’t it? I feel so lucky so far that it’s just bone mets but can’t help feeling that my luck is going to run out soon ….
Hi everyone. I’m also sorry I missed this first time round. Just would like to add my best wishes to everyone 4/5ish years from dx. I’m six and a half years from surgery and I’m glad to hear from you all. In the wider world it’s all forgotten about by now but the insecurities are still with me. Good luck to you all. x
hi all
just saw this post. i will be 4 years in sept since diagnosis. unfotunately was diagnosed with renal cancer last year just when i felt i was moving forward. i am only now beginning to see the light at the end of the tunnel after a nephrectomy followed by a clear ct scan. i do have my down days where i fear what if but try really hard to focus on the positives in my life. i have been able to go back to work and though still have terrible fatigue, i rest when i can. cancer is always at the back of my mind, and as a nurse i deal with it every day. i am lucky in that i see a clinical psychologist every 3 weeks who has helped me deal with my thoughts and fears as well as the sudden passing of my dear mum late last year. it would be great to attend a workshop and meet other ladies in the same position, albeit a fortunate one. im sure other ladies coming up to the 5 year mark fear that “left out in the cold” scenario with no check ups and no tamoxifen. best wishes to all of you
annie
i have not heard from you for ages, but saying that i don’t use the site as often as i did 4 years ago.
it will be 4 years for me too this October,so far so good.
i am happy with my diep and my life is good,working part time i never went back to the old 6 days a week job, my life’s too important to be stuck in work for hours, away from the people i love.
For me i have never been off the check up routine, my oncologist still sees me every 6 months, i had thought that by now i would be on 12monthly check ups,i don’t mind though as its peace of mind as he always gives me a good check up,so i feel better that nothings going on.
i do try to get on with my life but it never goes away that fear of it all flaring up again, every ache and pain i get makes me a little scared.
i guess we will always have the fear of a recurrence unfortunately.
I am up to my six year mark next month and have been discharged from the breast care clinic. I have had no recurrence of my breast cancer (fingers crossed), but I did have a completely unrelated cancer on my tongue two years ago (such a shock, although I do believe that if you have had one cancer you are slightly more at risk of getting another). Before my second cancer I had pretty much weaned myself off the site, but now I am much more aware of how tenuous things can be and have found great comfort in reading and joining in with posts again.
I would be very interested in a session for people who are four or more years down the line, because I think we would have so much to share with each other.
I am just short of my 5 year anniversary and so far so good!
I feel that I have turned a corner recently after a rough patch last year when things came to head after watching my best friend loose her fight for life against BC. I had some counseling and went on a ‘Living with Cancer’ course which seemed to make a big difference as I now seem to be more in control.
I expected to fall off the Hospital list but was told that whilst 5 years is ‘significant’ I will be called for appointments (every 4 months including mammogram so far)for 10 years so on it all goes!
I now seem to have more good things happen than bad and long may it last but I will never be the person I was or loose that ‘riding my luck’ feeling either
The only people who can understand how we feel is us, we are members of a club no one wants to join!
I thing your idea of support group for those 4 or 5 years post DX is great. i am 4 years since dx and i find that the issues don’t go away, they just change. E.G. long term effects of being on hormone traetment- Lymphodeama,Tiredness and tired of feeling crap!! In some ways i have moved on massively, in others i feel right back at square one.
i actually can’t remember life before BC.
I am so pleased to have read all your comments and pretty much agree with all of them.
I am 5 and a half years from diagnosis and although life has been good to me during those years (daughters both married, two lovely grandchildren etc) I still live with that fear that my luck will run out. I still dread the yearly mammos (I start worrying months and months before they are due) and am hell to be around while I wait for the results and nobody seems to understand why I am so scared.
I never look forward to anything that is too far ahead as it seems still to be tempting fete. I do just take each day as it comes as far as possible. I do wonder whether I will ever feel completely at ease again.
I think five years is some sort of landmark that we all aim for and when it comes there is a certain sense of ‘well, what now?’. I agree that it would be good to have some sort of support day or our own section on the forums.
3 years post-dx and coming up 3 years post-end of treatment. coped really well and was very positive etc etc at the time…but last year as someone else said i had a minor cancer of a different type and completely fell to bits. i’ve now managed to reduce it from sheer panic to just background anxiety which is progress i guess, but it was also a lot of work. i can’t stop “monitoring” myself for symptoms all the time and the fear just seems to move around from one part of my body to another. my work colleagues were also absolutely horrible to me which was more distressing than going through all the treatment. i did the Moonwalk this year and thought that in a way it’s a bit like going through treatment and living with the aftermath…all the support and razzamatazz is at the beginning when you’re full of energy, but it’s actually later when you’re cold and tired and sore and have been slogging along for hours that you need it more… however…i have a very loving and supportive partner, we’ve had some great holidays and enjoy our home…illness really lets you know who your true friends are, one or two people are definitely off the list but the good ones have stuck around…i guess maybe we’ll always have to live with the fear but that makes us heroes i think!
I am now 4 years post my second diagnosis of BC - recurrence in the same boob. I was never fearful after my priamry dx, as my mum is still with us some 20 years post dx and my sister has also been well following her surgery. I just got on with life, caried on working, even re-married. I felt that life was too short for ‘average’, if you know what I mean, but apart from that I was fine.
But since I was dx in 2005 with local recurrence, my views have changed. I don’t post very much on here any more, but I belong to a local support group and sadly have lost two good friends to this disease. The fear never goes away completely , and every time I have another appointment I worry again. I’ve had a few ‘problems’ along the line, some more scans and regular b/t etc. so obviously I am worried. But, overall, I think I have learned to live with it all now. I get on with life, albeit a bit slower and more careful because of lymphoedema, but overall try and not let the fear of a further recurrence overwhelm me.
But I never say to anyone that I am ‘over’ BC, because that is not how I feel and it is not something my consultant will say either. I am just grateful for every year that goes by without any further problems.
Hi
I’m 4 years since original dx of grade 3 triple neg 2.9cm tumour. no nodes and had just 3 removed with sentinel node biopsy - lumpectomy with clear margins. 6 months chemo and rads.
This week I was told i had a recurrence after my annual mammogram picked up a change. Its in the very same place but only 1.2cm and i have had an ultrasound done where radiographer said he also saw a lymph node on mammogram but couldnt detect it on ultrasound due to the scar tissue. I then had biopsy and have to go back on Tues for results. What will that tell me, will I then know if any nodes are affected? I’ve been told I’ll now have mastectomy and all lymph nodes removed in few weeks.If there is a cancerous node, does this mean will have to go through chemo again? And what are the chances of the nodes being cancerous if tumour is only 1.2cms? Its strange that with a 3cm one last time I had clear nodes.
Bev x