Allowing for all the caveats we know with BC, unpredictability, grade, nodes blah,blah. This little piece ever so slightly raised my spirits.When first diagnosed, I remember my surgeon saying to me,"If you can manage the first 2-3 years without a recurrance, your chances significantly improve.( This is not to put a damper on those who experience a recurrence- I have a friend who had a recurrence in scar tissue 2 years post diagnosis, and is NED 12 years later).
When I visit this site I always feel that recurrence is inevitable at some point, but perhaps this site can give you a skewed perspective for many reasons( -and yes I am aware of 2/3rd node pos will get a revisitation etc etc),but any little titbit of “hope” works for me. Go on, someone rain on my parade!
lifeandhealth.guardian.co.uk/wellbeing/story/0,2265058,00.html
I’m not going to rain on your parade Cherryred - hope does it for me as well. Thanks for posting the link
janeyb
x
Hiya
I’m not going to rain on your parade either (pi**ed off with the rain today). I have always been (and still am) positive and believe that a little hope goes a long way. I DO NOT think that recurrence is inevitable, we can all fall either side of the statistics and we never know which side. Don’t let anybody burst your bubble, we’ll be ok.
Julie x
Julie,
So well said. Do you think we should start a group: Bubble’s anonyomous- is that how you spell it?
janeyb
x
Hi Cherryred
I wonder if you are expecting me to ‘rain on your parade’ ? I guess I may have a reputation for doing so…but honestly I just see myself as a frank speaking realist…and I think we need a few of them around cancer world.
And so being realistic…neither I or anyone else on this site as far as I can remember has ever said that recurrence is inevitable…no its not. Accurate statistics are not available on recurrence but probably between a half and a third of those with primary breast cancer do subsequently get recurrence. That means an awful lot don’t. Always remember too that breast cancer is a diverse disease not a level playing field and some have much higher chance of recurrence than others. We also do talk about the unpredictability of breast cancer quite a lot…some things about breast cancer though are more predictable most of the time than perhaps we care to think.
Yes it is true that going 2/3 years without recurrence is a good sign…partiuclarly if you are triple negative…but breast cancer can recur many years later (those who are er+ and pr+ may get a good response to hormonals for 5 plus years and then get recurrence when they stop working.)
I love ‘titbits of hope’ but once you have a recurrence the issue of hope becomes slightly different…more complex…not just about hoping you never get the b*** disease again. I have quoted many times these words from Jerome Groopman and make no apology for doing so again:
‘Many of us confuse hope with optimsim, a prevailing attitude that “things turn out for the best.”…Hope does not arise from being told to ‘think positively’ or from hearing an overly rosy forecast. Hope unlike optimsim is rooted in unalloyed reality…true hope has no room for delusion’.
best wishes
Jane
Hi Cherryred
Thanks for posting that - you have cheered up myself and I suspect a great many more people !! I think articles like this help - especially for people going through chemo now so that they can see a light at the end of the tunnel.
Love to all
Alise x
I have been told that local recurrence is more likely if you do not have axillary clearance when there are positive nodes. I find this very upsetting since I was offered no choice - given SNB, nodes positive, chemo and finally radiotherapy. Only now has one doctor mentioned that local recurrence is more likely in this scenario. This, I also understand, means more likelihood of distant metastases. I feel so angry and let down that surgeons are able to play God like this. I am also not happy that I now end up in his ‘care’. Not very reassuring.
Sarcath
Ladies, you are marvellous- I like the “bubble’s” anonymous idea!.Lol.
Sarcath -If you are doomed -so am I, and I guess a few thousand others too. SNB was very new and not widely available when I was diagnosed so I was subject to “node sampling” with 2/8 positive nodes. I was offered no further surgery AND I had a positive margin with DICS- I was paralysed with fear at the time and trusted that “they” knew what they were doing! and if the Royal Marsden didn’t know what they were doing, God help me! I can’t undo my treatment, (or lack of it) ,which is one of the reasons I ferret around for bits of hope/optomisim-call it what you will.
JaneRA- Yes, I anticipated you would rain on my parade! but I’ve grown used to your factual posts over time and can see they are helpful to many on these boards-they do provide a balance and encourage debate.
Keep well ladies
Cherry
What worries me too though is that I have no idea how many positive nodes - 2 taken in SNB, both positive. I could have had or have 20 positive ones!
I guess you would be fine at the Marsden! They should know. I find it very disconcerting having doctors not all singing from the same hymn sheet! There should be standard guidelines for everyone.
Sarcath
If we dont live without hope false or otherwise i feel i might as well stop “fighting” the battle against breast cancer now!!! And I need hope, I class myself as grade 3 triple neg as Im only slightly pr+ and they are only giving me tamoxifen because it might work not because it does on my results
My chances weren’t great.I had a 2.4cm,triple neg with vascular invasion and a pos node, but I’ve always thought some of us come out the best side of the stats and I’ve as much chance of being lucky as anyone else! I’m 4+ years down the line and counting!
Josie x
Hi Cherry red
I regularly post on the secondaries board,
Actually I never thought recurrence was inevitable - just thought it was possible, and was well aware of the fact. Alot of people come out on the right side of statistics and good on them, I wouldn’t wish this on anyone…definitely if you have a primary cancer it doesn’t help waiting for recurrence or distant recurrence and tailoring your behaviour for it - you deal with it when it happens,
The more people who dont have to go through secondaries - the better for everyone - no one with secondaries wants to rain on anyones parade.
Cathy
I think I’m getting myself into deep doo doo here. Cathy, before I had BC, I could not begin to contemplate what it was actually “like” having BC. The reality is far worse than I could ever have imagined. I can only think that having a secondary diagnosis is like that too. My pessimistic personality coupled with my own diagnosis leads me to believe that a recurrence for ME may well be inevitable, though of course I live in hope that it isn’t.I have periods when I don’t think about it much, and then other times when it is more to the fore front of my mind. I posted the link because when I find articles like that it lifts my spirits and hoped it would too for other women on here -heaven knows we could all do with a boost, whatever our circumstances.I was referring to less than favourable “statistics” raining on my parade -not women with secondaries.
Sarcath - I have to say, I sometimes think that about the node business too -were there more further up that were positive? Onc told me that BC tends to runs a well worn path and only in 1% of cases does the cancer “jump” nodes instead of moving through them sequentially.I try to put this out of my head since I can’t change any of it ( easier said than done) -but that is why these little articles help (me) to redress the balance.-
Still like the idea of the “bubble” club though!
Cherry
I too worry about nodes as I only had node sampling[6 taken all clear] but what if the 7th??I’m triple neg and any bit of hope is fine by me.I try to temper it with realism but sometimes I just want to relax into hope for a few days.Then with the next backache I plunge back to terror.I’ll enjoy watching the 'bubble club’but will wait a few years[I hope-see!]before joining.Love and luck,Valxx
Right - assertive Janeyb here. I think the time has come, to instigate, formally, “The Bubble Club”. I am it’s Chairman- until I am deposed - formally. We need to get a few base rules here -maybe, our constitution. I hereby propose, that those of us, who invest in hope and not positive thinking, want to support each other vis a vis really , really, good news stories - becuase, they will certainly save our sanity. I also propose, that the “Bubble Club” should convene a “Bubble Conference”-location to be decided - any offer gratefully received. Anybody want to be “Secretary of the Bubble Club”?
Janeyb
x
My son had cancer when he was a baby. It was treated, then it recurred and he had chemo, radiotherapy, surgery, the works. I spent the vast part of his childhood looking over my shoulder, so to speak, in case the cancer came back. I never relaxed, I questioned every single thing the doctors and basically missed out on his childhood at the expense of worrying about what ifs. I had a massive breakdown 10 years ago because of the stress, most of it caused by me crossing so many bridges in advance. None of us know what is around the corner so please please make the most of today. I know it is so hard to do but worrying won’t and can’t change a thing.
PS - I would be the secretary, but I am rubbish at admin - got thrown out of shorthand class at school!!
Cathy
xxx
PPS
I meant to say, my son is now 16 and very well, Thank God (or whoever you thank) - he is very cheeky, though
Well I’m not sure what to make of recurrence stats now as I told my male geek freinds on my email discussion list earlier today only to be told about the wife of one of my fellow programmers.
In short it goes like this:
dx with stage-one breast cancer in Christmas Eve 1995. had lumpectomy and was told 99.5% cure rate with chemo and radiation
She did both and was clear for 7 years.
almost exactly 7 years later she finds lump on sternum. It’s a stage 4 and they’re told it’s terminal. Told there’s only a 1% chance it’s localised.
They’re in the US and had to spend a lot of energy to find a surgeon who would operate on the sternum at those odds. Eventually convinced one and a team of 3 did some very complex surgery on the sternum, and she also has bilateral mastectomy and lymph clearance.
She then had max dose of chemo and rads, and she still gets a monthly bone builder drug that’s supposed to help bone build faster than the cancer.
So she had 7 years clear when she had a prognosis of 99.5 and 6 years since where she’s had a prognosis of 1% and under going treatment to keep it in check.
Now I don’t know if you ladies see this as good or bad but I see it as good as she’s living and loving her life in the meantime and I’m starting to think that’s the most important thing.
My friends feelings on it:
“When life kicks you down, just get back up and continue on”
Amen to that I say. Numbers are just numbers at the end of the day, just a guide.
Angie
I shall upset some people here I know, apologies in advance. What constitutes “good” news for me , at the moment, are the stories which help me believe it is still possible to walk away from my disease , eg “hopeful research”, women with “poor” prognosis who are NED years after diagnosis,etc etc. I am very well aware that if I move into the secondary diagnosis arena ( which I have already said for ME, may well be inevitable), then my view of “good” news will very likely shift - no progression, fantastic response to a treatment etc. Numbers are, as Angie rightly says, just numbers and I have no quibble with that -and yes it is good that Angie your american friend is still living and loving her life, but frankly if I had been given such a "positive " prognosis I would be completely gutted if I had a recurrence after 7 years (and yes I do know we-and particularly those of us with e+ tumours can get recurrences years later)-and to me that is not good news -it serves to dampen my mood. That’s just the way I feel and I can’t help feeling what I feel ,but I completely respect that others will feel differently too.
JaneyB - I would happily join the bubble club, though you may not see much of me , as obviously I spend a great deal of time with my head in the sand! lol
Cathy - the news about your son is REALLY good news!
Cherry
Hey Cherry!I’m the resident ostrich come and join me in my sand bank where you try very hard to think that maybe one day it will all be ok.Janeyb hope to see you in April and you can sell me the ‘bubble club’!