I log on here from time to time - ever since my wife was diagnosed five years ago. She is, thank God, fit and healthy after a lumpectomy, chemo’, radio’ and herceptin.
I just wanted to put my tuppence in as these forums are populated by intelligent, well informed women. Much like my wife. Here is something that really sticks in my memory - I used to come home from work and find my wife crying helplessly having just read an internet article forecasting her imminent demise.
Whilst this is not something to be taken lightly and I am only too well aware of the pain and anguish caused - please remember that looking on sites that offer news/statistical information on survival rates will cause you more upset than benefit.
As with all news stories bad news is more attention grabbing. Youth helps old lady across road is not as exciting as youth kicks old lady across road.
As an information junkie myself, I fully understand the need to Google every word that your oncologist says to you - but this can be taken out of context and cause undue anxiety.
Anyway was just a thought - I think these forums offer well balanced and intelligent information from people who understand the emotional as well as clinical effects. I really think that anyone looking to educate themselves about this, is better reading and posting here than looking at random sites.
This is probaly the most challenging thing you have faced and maybe ever will face, Good luck God speed and it if you are a statistic hungry woman, it is worth noting that according to Cancer Research
—The researchers estimate that 72% diagnosed with invasive breast cancer will live for at least 10 years after their diagnosis. Projected 20 year survival rates are also improved, researchers predict that 64% recently diagnosed with breast cancer will live for at least 20 years. — The odds/stats are very much in your favour
I’m having a day of posting in the wrong forums. I thought Barry’s messgae was in current issues, so my original reply was more appropriate there…so have just deleted my first post.
I think we’re all different so when we get a diagnosis of breast cancer…some of us know our way round internet sites and some don’t, some understand statistics, others don’t. Some are information seekers, some not.
best wishes to anyone newly diagnosed…yes some great information on this site and on many others too!
Thanks Barry for taking the time and caring about us. I am one of those who initially trawled the internet, and the drip drip drip of information seemed like a load to heavy to bear a year ago. I am not that clever nor do I always understand statistics. I try to present a happy daft smiling face to the world because that’s what I want and how I like to be perceived. That is not to say that I don’t have my down times. I am working very hard to put bc to that back of my mind, as a lady who had secondries said to me if you think about it and get too down it’s got you anyway. At the time I despaired of ever being bubbly happy and active like that lady was.Jane I am not a happy smiling survivor but I am trying to be. Thanks Barry love Eileen
Barry, I think it’s lovely that you have taken the time to post to us all and for one would like to thank you. My mastectomy is in 2 days AT LAST and like a lot of people I have been searching the net for information, just to feel more in control. But I think it is very important to be careful at just what it is we take on board and what we discard as attention grabing news.
Hi Barry. Yes, thanks for your thoughtful posting, and I’m glad things are going well for you and your wife. Call me picky though, but having suggested that we don’t go looking at statistics, you end up quoting some!! To be honest, I don’t think those figures are all that helpful as there are just so many variables, and in ten or twenty years time there are bound to be yet more improvements in treatment - look at the changes over the last twenty years. I think the outlook is brighter than the figures you have quoted suggest. Let’s hope so, anyway. Best wishes. Sarah.
Thank you Barry for posting. I find I always look forward to men posting, either because they themselves have breast cancer, or, as occurs more often, they have intimate knowledge of this disease from partners. Statistics can be confusing and can be frightening…The reality is that even in the future if statistics showed a 99…9%
survival rate that would mean 0.1 % wouldn’t survive. This isn’t meant to be negative, we all hope that we we are going to fall on the right side of statistics, but not all women do. My survival rate at the moment is 74% in ten years. Yes, I’m holding on to that with dear life. but those statistis mean I have a 26% chance of not surviving.
That knowledge allows me to make future plans which perhaps I wouldn’t have made pre BC diagnosis.
I agree with Sarah, there are so many variables, and should the research and knowledge continue to accelerate the outlook may be brighter, but until this disease is forever cured or eradicated, then most women like me and all those who post on this site will remain in the realm of uncertainty.
My best wishes to you and your wife.
Trish
I’m wth seabird. It’s great that the men in our lives connect with the problem enough to have something to ‘say’ to other women also going through it - I’m trying to spare my own fella because his mum died of the condition when I was pregnant, 17 years ago, and it wasn’t a happy period. But then Barry tacks on a series of statistics that I think would have been more empathetic to have left out: “please remember that looking on sites that offer news/statistical information on survival rates will cause you more upset than benefit”. I have a seventy something percent chance of being alive in ten years? Goody, goody. Not. I don’t think about the figures. What the hell! Global warming or nuclear holocaust could fry us all before the stats have a chance to prove their point. I don’t think about that either. Humans have always lived, and must continue to live, as though life has meaning in itself. And also as if being human is something at least slightly more than physical functionality. We’re all going to pop our clogs at some point - hopefully later rather than sooner - but doing it with dignity and leaving a lot of ourselves behind with people we’ve touched is more important than when and why.
I too am with the others on this. It was very nice of Barry to try and cheer people up but I am afraid it did not cheer me up at all.!! My individual stats were 98% survival in 10 years and reading his stats just upset me. Everyone’s prognosis / stats are different and quite meaningless too I think! My 10 yeas survival may be 98% but its not much use if you are in the 2% is it??!
Love to all
( And no offence to Barry who I know was trying to help!)
I read this thread when it first arrived and felt pretty much like everyone else and just wondered if I could stick my two pennworth in. Before DX i was looking at cancer research stats for my dx and it came in at 85 to 89% so when onc gave me 94% I asked why the difference and he said there are always new treatment programmes and trials coming to an end and new info almost daily so most published stats are out of date by the time they reach the public domain.
Alise, I’ve been looking out for you and was wondering how you were doing, you sounded quite low last time. I am just coming to the end of my rads and am planning getting back to work on the 1st April providing my 31st March appointment at the Bobby Moore unit gives me the all clear, remmission or NED whatever its called.
Hope you are doing ok. You gave me some lovely advice and when I was feeling low about my proramme made me feel so much better and just wanted to say thank you.
Heres to being on the right side of the stats. Love to all Shonagh xx
Nice to hear from you! I am so glad your treatment is nearly at an end. Did you manage to get through the radiotherap without any problems? I managed to get second degree burns - but that’s another story . . . . . . .!!
I am feeling a bit better - up and down really. I have noticed though that for the first time ever i the last few days bc has not been the first thing I have thought of when I woke up. I have just come back from my Gp as I was having twinging pains under my arm where I had the node clearance but she said all was fine she thinks its just the nerves knitting back together again!
17 rads down 2 to go. I am on the last two of my 4 electron boosts. My skin has held up fine so far. I followed the advice from the ladies on the rads thread and used the aqueous cream for two weeks before the rads started so not sure if that helped or not. I have been given hydrocortisone(spelling ??) cream to use for the next week or so after the boosts. The skin still feels ok but I’ve got a bit of a pain in my rib that feels like I’ve been punched but honestly its all been more than bearable although I’m glad I’ve got a couple of days off before the last two as I seem to be very tired all afternoon these days.
Good to hear you are feeling a bit better, sorry to hear you are getting some discomfort from your under arm. Did you go to your rads physio session. They gave a a talk about lymphodema and the does and donts of armpit care that quite frankly scared the pants off me. They did day to keep any eye out for swelling so just take care of yourself and make sure its not an infection. I cant believe I’m not allowed to wax or epilady my armpit again!!!
Its all happened so quickly (3 months from core biopsy to end of rads) for me I hope I’m not going to wake up one day and freak out. My main issue has been that now that I appear to be clear everyone has just carried on and quite frankly feel quite abandonded by what I thought of as good friends. I know I will never say anything to them, I’m useless at confrontation so have decided to just get on with it and let them carry on as normal. I know I’ve got support in here.
I’ll keep an eye out and say hello and let you know if i’m coping with the real world or not.
Love Shonagh xx
Thank you Barry for posting this. In fact, when I was dx in November it was my husband who wanted to know the stats. Stats can be taken two ways. I was given 87% and my rather negative teen son said “that means there is a 13% chance you will die”. I don’t think I would have asked my stats myself.
However I do think that I spent too much time and energy on the net scaring myself with various possible complications and drawbacks. Nevertheless it was great to be able to get some information at a time I felt so lost. But on the whole I think it is important to keep things in perspective and whilst BC is dominating my life at present, there IS a world elsewhere and I will look forward to rediscovering it when my chemo and rads are done!
“That knowledge allows me to make future plans which perhaps I wouldn’t have made pre BC diagnosis.”
At inital diagnosis in October 2003 I had survival stats of 40-50% at 5 years and 18% at 10 years. Not good. I understood what they meant and I hoped as we all do to be on the good side of whatever our own stats are. But given mine were a bit ropey I started to make decisions I wouldn’t have made otherwise: I was 54 and decided to take early retirement (did so a couple of years after diagnosis.) I loved my job and had always looked forward to a long retirement from age 60 but thought I 'd like to bring that forward just in case. (I know about the buses but actually staitiscally we all have a very small chance of the bus coming along) I also decided to move out of London (something I’d also wanted to do at 60 plus) It wasn’t about being negative or ‘expecting to die’ but about being utterly relaistic as far as I was concerned…nothing to lose if I was the good side of the stats and quite a lot to gain if I wasn’t.
Well I got a regional recurrence…it looks now with a bit of luck as though I’ll fall on the good side of the stats and make 5 years (yes I’ll go into those ‘magic’ and misleading 5 year stats of 80% survival but here’s the sting…I’m very very unlikely to make 10 years…I’m pretty certain not to be in that 18%…though I’ll throw a massive party if I am).
I know that many people find talking about their chances in this way is very upsetting and frightening. For me its a liberation…an acknowledgement of reality which guides how I try to live my life.
Barry…my odds never were in my favour…but they could hve been worse and I have been very lucky (as well as very unlucky if that makes sense) and I’m still here to tell the tale…good news stories are sometimes complicated and messy and not like fairy tales.
I think this is an important discussion though as I said in my last post it might be better in the current issues thread. I have known my poorer than average stats since diagnosis and it drove me mad when people quoted the kind of figures you have Barry…cause they just didn’t apply to me,…and the people who quoted them at me were just denying my reality. Some people want to know their stats and some don’t but average stats are not the same as stats for particular kinds of breast cancer.
Words of clarity and wonderful good sense as always Jane! You always write such straight and helpful postings. Hope things are going OK for you at the moment, and that you make that 10th party! Sarah.
Hi Jane,
I’m new here and I loved your post - I, too, find your attitude liberating though a similar response in me has shocked and upset some of those close to me (son and husband, for example, so I keep it to myself). Thanks for being a voice that is so easy to relate to.
But about the stats thing - I’m not interested but, thinking about it, it’s a natural interest for partners and others who are close. I’d forgotten, when commenting to Barry, that probably the first thing my own husband did when I broke the news was check the stats online. I raised my eyebrows at the time, but it’s surely an antidote to feelings of powerlessness. I can respond by having my hair cut off in advance of possibly losing it and doing the exercises etc. and he can assemble the figures and feel a measure of control in doing so. As long as he doesn’t pass them on to me…
best wishes to all, Marie-Louise
As a first time poster I thought this part of the forum was for those newly diagnosed, which
is when I feel sure that most people might seek information on breast cancer.
On reflection, perhaps it is all well posting here, but having never gone through this personally -
only as a spectator it may be that thoughts - however well intentioned - should remain unposted.
Those statistics are assuming all the recommended treatment is completed?
I have just come back from results appt, had mast/recon 1 March.
Grade 2, ER+, HER2- (don’t know about PR, don’t know ‘stage’), tumour 3.1cm, 27 nodes removed, 2 of them with microscopic traces of cancer.
Recommended chemo (Anthracycline; > 4 cycles, > 2 agents
followed by radiotherapy + Tamoxifen. I am 51 and pre-menopausal.
Stats on my printout:
No additional therapy 62% alive in 10 years
Hormone only 62 = 9% in 10 years
Chemo only 62 + 10% in 10 years
Combined 17% in 10 years
Radiotherapy not included in these stats, no idea why.
And they’re only averages anyway. How on earth are we equipped to make decisions?
I never quite got my head around stats - dx triple negative and was told after treatment that I had a 20% chance of recurrence, 5yrs, 10yrs wasn’t mentioned at all and to be honest at the time just wanted to concentrate on treatment. Now I’d like to know what this means for me but for some strange reason can’t bring myself to ask my Onc - was determined to ask at my last appt three weeks ago but chickened out.
Firstly Barry, I know you mean well and I understand that, as a partner, you are concerned. I genuinely think that, generally - and I mean generally - men tend to look for figures or statistics to make some ‘sense’ of things. I’m not being flippant, but I do think men can accept more ‘scientific’ reasons for things and, for example, my partner can understand how hypnotherapy helped me, because he can see there could be a link with the subconscious brain. On the other hand he struggles to see how reflexology helps also because he can’t relate to in any scientific manner.
The figures you quote may well come from the Cancer Research website, but in what concept? What type of breast cancer was it to do with? What age group etc? Almost no 2 women are totally alike and so it becomes no more than a generalisation for most to post those figures. I’ll risk being flippant again - those adverts we see for something like wrinkle cream - 89% (or something like it) of women saw an improvement in 2 weeks…the important bit is ‘of 47 surveyed’!..Now if it was of 10,000 I may look at the cream!
Please have a look at the family/friends/partners forum…I’m know there are others there struggling to help their partners and you may find some help there. I wish I could have persuaded my partner to ‘let off steam’ on there at the time, but I didn’t realise he needed to. I see in you an ‘anger and/or frustration’ that I only realised was in my partner when we where able to talk after the treatment was over - he felt so helpless and hated it. None of us have gone through this personally before, but you will find the help and support you need here. I wish you both well.
The second thing is - those of you that mention your own stats…especially Palomino - how did you get that? Did you ask? I think I got a path report but is it something that will be at my GP’s/Onc/Breast Clinic?
Hi Caz,
My onc toe-stepped at the beginning of the interview to try and guage how much he thought I might want to know. I asked for figures and asked him to break then down for me, showing the benefit of each, chemo, rads, and hormone. As my lymph nodes were clear but there was evidence of vascular invasionI I felt it was important for me to make a fully informed descision about whether to go with chemo or not. he was more than happy to discuss these and even explain about the computer programme they use to ascertain figures. Hope this helps.
Trish
PS No, it wasn’t something my GP or BC nurse were aware of.