5 year survival rates - cheer me up!!

I was diagnosed in March 09 with breast cancer whioch had spread into my lymph nodes - 15 of the 20 were cancerous when they took them out. Having had surgery,chemo,radio and now hormone treatment I have a 66% 5 year survival rate, and when I badgered my breast care nurser for her experienced gut feeling as to my prospects, her response was ‘not good’.

Somehow the idea that I have a 1 in 3 chance of not being here in 3.75 years doesn’t fill me with glee. I’m told these are ‘only’ statistics and I shouldn’t take them too seriously - but I can’t help it. I’m hoping if there’s lots of people out there who been quoted something similar but are still around 10 years later that I might see things a bit brighter - as it is my mind goes walk about to all sorts of horrid things like funerals, secondaries and where they will strike, how my husband of 32 years will cope - really cheerful stuff!!

I’m not helped - and nor is he - by the news we had this week that my brother in law who had breast cancer 4 years ago is now confirmed with secondary bone and lung cancer and about to chemo again.

Hello broomsticklady

It sounds like you’re having a pretty tough time at the moment.

If you would like to talk things through with a member of our staff on our free helpline please give them a call, they are there to offer emotional support as well as practical information. The number is 0808 800 600 and the lines are open Monday to Friday 9 to 5 and Saturday 9 to 2.

best wishes
June, moderator

Dear Broomsticklady
I’m so sorry to hear you’re feeling like this right now and it’s also so hard that your breast care nurse told you what her gut feeling was BUT it’s only her gut feeling and she can’t tell you the answer. There are plenty of women who’ve been in a similar situation to you who are doing well.

It’s a very scarey time and although I was diagnosed coming up for 3 years soon, I still worry - the worry does get less over time honestly and also gets easier at least that’s how I feel about it all. I had a very aggressive cancer which had spread to my lymph nodes too and was grade 3 and HER2 positive i.e. fast growing as well. I don’t like to count my chickens or anything but I’m still here 3 years later doing well.

Hope my post helps you to feel a little bit more positive.
Ruby xx

Hi BSL. I sympathise - it’s horrid thinking about it and feeling helpless. My 5 year rate is 18% - but after months of worrying about it and just making myself miserable, I have decided to do everything I can to be on the long thin end of the survival graph, and have made some fairly radical changes. I have been reading voraciously over the last month or so, specifically about diet, and believe there is a lot we can do to improve our chances and beat the odds.

It is thought that about 60% of cancers are caused by diet and lifestyle factors (the remained being genetic and environmental, about which we can do little). We can change the 60%, and it is not that difficult. I now follow a very rigid anti-cancer diet - I feel healthier, my skin is amazing, and for the last couple weeks have been sleeping better than I have done in years. The difference is quite remarkable. I have also lost weight (very important for me), and feel remarkably positive about my future, under the circumstances. The best thing is, every time I prepare a meal I think I am doing something to help myself, and that really helps keep my spirits up.

Hi Broomsticklady,

I hope I can cheer you up :). I am a bit appalled at your bc nurse telling you your prospects were not good. So many of these statistics are based on figures that are well out of date. Given that we have several drugs now available to treat hormone positive cancers and herceptin for HER2 positive ones the statics are so much better now. Then they are also average figures and none of us are ‘average’. Someone with very good prognosis can have it recur very quickly, and others with really bad prognosis can survive much longer than expected. My bc was dx 20 years ago now. It was also - like Ruby’s, very agressive type and came back with new tumours several times, and spread extensively to my bones in 2002. If I had asked what my survival time was at the beginning I think the knowledge of that alone would have helped me into my grave!!! So although my story isn’t perhaps all you want to here I would say despite everything I have a decent quality of life not overcome with thoughts of dying all the time. I hope as time goes on for you cancer will take a back seat and life can get back to some sort of normality for you.

Dawn
xx

Lies, damned lies & statistics! I think you can believe what you want to believe. When I was dx three years ago, I went online and the Cancer Research UK website gave my 10 year chances as 20 - 42%, which appalled me. I asked at the hospital - there they pulled out a dogeared piece of paper and declared 60%. On adjuvant online it says 79%. I choose to believe the last one.

I don’t think they really know. I’m always being told stories about people that survive for years. I do joke sometimes that I’m given 5 years free prescriptions, but I’m determined to live way beyond that! Love and luck to us all, Jilly

I’ve also had 15 lymph nodes with cancer. I know my prognosis from a legal point of view as I was four years misdiagnosed (GPs refused to refer saying I had nothing to worry about)and am actively taking matters further. I hadn’t realised I had such a poor prognosis until I delved deeper. However, I’ve had 5 years of good health and although I cannot say I don’t think about it, it does get easier with time. I try not to take too much notice of the prognosis figures. No-one really knows who will go on and develop secondaries.

Wishing you all well.

Jeannie

Hello bslady
I just wanted to reiterate what others have said - we are all on a statistical curve and have to believe that we are on the ‘tail end’ of that. breast Cancer is a disease that doesn’t read the text books and is unpredictable in how it develops - for each prognosis there are a range of possible outcomes and I don’t know of any research that has led to real and correct predictions about outcome, based on initial presentation.
some of us have done better than expected, and some worse.
If you asked for my advice I would say that the most important thing is to be able to look back and feel that you have made the most of every day. I think that goes for everyone, with or without a diagnosis - so many people let life happen to them rather than being in the driving seat.
for myself, I had a very positive prognosis and didn’t believe it (based on instinct) - when I had a recurrence after 12 years, I could look at my ‘new’ life since bc and see the lessons I had learned.
best bet is to be good to yourself and have as good a life as you can
wishing you only good things
monica xx

I was actually diagnosed with secondaries from the very beginning, seven years ago, 2003. I feel well and haven’t had a day in bed since then…Take Care…x

Hi,

It’s funny isn’t it how once diagnosed with breast cancer how obsessed we are with life and living yet prior to this we never give it a second thought. Each day we jump in a car or walk to the shops, work etc. and never give it a moments thought, that actually we are 20 times more likely to die from an accident than from breast cancer (statistics from 2007). The poor people shot in Cumbria this week never for one moment on waking up that day thought, ‘I could die today’.

Worrying about the outcome of things well never change that outcome, all it will do is take your mind and time away from other things that you could be doing and enjoying. I am a great believer in fate, I have had three car accidents in my life and each one potentially fatal and each one I have walked away from.

Unfortunately life has no guarantees and neither has the oncologist. All we can do is accept what we have been given and enjoy what we have.

Patricia

Hi Broomsticklady,
I do know how you feel, but mine is a ‘sort of’ good news story too. I was diagnosed in 2007, with large triple neg tumour, 14/20 nodes and heavy vascular invasion. Had mast, chemo and rads, but as triple neg, no further treatment available.
When I tried to have reconstructive surgery, I was basically told it would not be worth it,as chances of me surviving 2 years were zilch. Charming fellow I had at the time! I tried agian twice, and was turned down. Well, now 3 years later, still only one boob, but thankfully no secondaries, so I have been the ‘odd’ statistic! I am unfortunately now wheelchair bound, due to chemo/bone issues…long story…, so now have difficulty as most of reconstructive solutions involve core strength muscles, so disability prevents recon. BUT, I now have a superb, wonderful new surgeon, who has offered other possibilites to me, and so I am not so down in the doldrums as I was.
I, too, live with the fear that it could come back any day, any time, but life is too short for all of us, as the Cumbria massacre has shown only too cruelly.
I just try to pack as much in to my days, my life, as I possibly can; my priorities are my fantastic husband, family and grand kids, and then its writing, poetry, jewellery and craft making and anything else I can possibly think of! I can’t do the physical challenges of life any more (I was all set to do 20 mile Ribbon Walk when spine first went in March 2008) and I get very jealous at times of people who can, but then I know my mind can do marathons, and frequently does with its ideas and plans keeping me awake at night!
OK, so I am a bit of a nutter, and I just happen to have BC, which makes me even more determined to stay as insane as I can possibly manage!
Good luck to you all. Please know that we do all get down and depressed about this disease, and in truth the fears never really leave me, even in the good times. It is just a way of life now, isn’t it?
Best wishes,
Jax

Thanks for all the advice - I’m a bit overwhelmed by how much there is so thank you all. I’m probably not helped by the fact I’ve suffered from severe clinical depression for years, so have a very negative view to lots of things anyway - CBT did me no good and I was in the middle of some cognitive analytical therapy when I was dxed, which was helping - it told me why I am as I am, rather than ignoring that aspect and concentrating on improving things as CBT did.

It sounds a bit crazy having said that but I have like most people 2 sides to my persona - the black as pitch bit which is taking over when I’m on my own and my ‘public’ face which is life and soul of the party when I have an ‘audience’ as my psycholgist puts it. So I can seem very cheerful and ‘normal’ but aligned with that is the negative me who takes over when my mind is idle - woe is me!!

Good to hear such good news, Jax, i am so happy for you.I am coming up to two years NED. Sorry i havn’t been in touch for so long but i am surviving and have such a wonderful man by my side. Makes you realise the important things in life after bc.

rachy xx

Broomsticklady, I know how you feel. I too have suffered from depression and bi polar for several years, and it does make life a little more ‘livelier’ to have the two sides of your personality struggling against each other. I am a naturally optimistic character, yet when the demon depression strikes, it is hard to see anything positive, isn’t it? I wish you all the best.
Rach, lovely to hear from you!! Sorry that i haven’t been in touch; been going through it a bit!! Hopefully we can get together with Judy soon. I will be in touch, Hon.
But we all carry on with the next days battles and joys, don’t we??!! How simple life semed before BC!
Jax