hi eveyone,
i totally aggree what hav ebeen said, i was dx with ibc grade three in sept 2010, i had chemo first then mx recon and then rads, and while i was having the treatment i was on this forum and the american forum armed myself with alot of knowledge about what can happen so when i was dx with lung mets i was quite calm about and i intend to fight all the way. my onc do not use the word cure and she is a lovely onc and very positive the way she talks to you and she have gave me alot of hope despite the secodries.
I personally don’t have a problem with ‘all-clear’ and ‘cured’. If it means living a few more NED years feeling more carefree then whatever it takes. There’s no such thing as false hope as far as I’m concerned. Yes, you might get a recurrence further down the line, but the less you can worry about that in the meantime the better. You might also die from something else. If I am unfortunate enough to get secondaries I hope I find the strength to deal with that diagnosis. It’s a club no one wants to join. In the meantime, I’ll consider myself ‘cured’. HOwever, whilst there is no way secondary breast cancer makes me think ‘loser’, I do feel every life shortened by cancer is a ‘loss’. We need to be pushing for everyone to get every possible treatment to extend their life, and quality of life, so they can live longer and better with secondary cancer.
My feeling is that you can only really say you’re a BC “survivor” or that you’re “cured” or that you’ve “beaten” BC once you’ve died from something else… And the practicalities of that may be a little bit tricky!
That might sound harsh, but that is the sad reality of BC - it ain’t pretty, pink or fluffy. And knowing the reality makes it much easier to face up to a recurrence or secondaries IF it happens; living in denial doesn’t do anyone any favours.
Well done everyone bernie made light of her cancer she got a boob cos who she is unlike some of us unf not allowed one
Keyfeatures, I respect your point of view (ignorance is bliss and all that), but I personally do have a problem with newspapers and the like using phrases such as all clear and cured, because I fear they foster complacency amongst society at large, when in fact they should be raising awareness. I believe that if we (the human race), are ever we are going to find a cure for cancer, then research funding has to be top of the political agenda.
I am with Keyfeatures with this debate. And I don’t think that it is a case of ignorance is bliss (and all that). In my case it is living in the NOW and right NOW I am okay. If cancer comes back, then I will deal with it then. What I don’t want to do is live today with the shadow of tomorrow blocking out the sunshine of my life now.
This thread has already scared the bejezzus out of someone just starting out on her treatment after being diagnosed. All she could see was the 40% chance of it coming back.
Bernie Nolan is determined to continue fighting against it. She has said that treatment so far has been sucessful and that there is no longer any sign of the cancer in her brain. Wonderful positive news!!
People with secondary cancer do live long and active lives. It’s not a death sentence and I think we should be careful what we say in here. People are starting their journeys dealing with cancer every single day - don’t let there first dip into this forum be one that scares them away.
And just for the record…I consider myself to be cured, all clear, better, whatever. Until proved otherwise. And if it comes back, I won’t consider myself to be a loser.
Supertrouper, if regarding your cancer as cured is a comfort to you, and helps you to face the future there is nothing wrong in that ( I sincerely hope your cancer is cured). My concern is with the use of words such as cured and beaten by the press etc, because in my view it encourages complacency when what we require is action.
Sometimes facts are scary, but I don’t think ignoring them, less they terrify us or blight our lives is the answer, I have secondary cancer, and understand the facts of that all too well - but I still have sunshine in my life (as do many of the other secondary ladies on this forum). When a secondary diagnosis happens, yes it is terrifying at first, but I think most of the secondary peeps I know manage to accept the reality and still enjoy life. Ignorance is bliss, when tis folly to be wise - but in the case of BC it is not folly to be wise.
Have to say i agree with Lemongrove and the others on this in that nothing pees me off more than constantly reading the words Cured and All Clear banded about in the press, like another poster said above the only time we know for sure if we are cured is when we get to a ripe old age and die of something else.
My onc has never used the word cured ,and has always been honest with me from the start, im glad that he has been ,i would have been more angry when i was dx again if i had been lied too, i dont want false statements, i want to know the realities of this desease , i dont live with a cloud hanging over me , i live life to the full like most people on here with hope that the treatments will keep the bugger away and not come back, but im a realist too and if it does come back i will deal with it again.
Also dont like the word battle, or survivor , as they also imply to loose or win, and am sick to death of people telling me youve beat it once so you can beat it again, or that BC is the best sort of cancer to have because they can just whip off your boobs and your cured!!! Or the other popular saying " they can cure that" nowadays", NO they cant, and i think it does a huge injustice to those liveing with secondries or reocurrences to make light of this desease as it does cause complacency.
It is a difficult balance on a cancer forum as we all read and see a lot of the realities of this damned desease, it cant be avioded but nor should it be , ignorence is definatly bliss sometimes. but not at the expense of others who know personaly that they wont be cured.
So the bottom line for me is, im living with BC , i may be one of the lucky ones and be cured ,i may not, it may come back to bite me a 3rd time, or i may just get hit by that bus , who knows, but one things for sure, i may have cancer but it certainly doesnt have me, and whatever happens or doesnt happen in the future, i intend to have a blast along the way!!
Linda x
Soupertrouper, I find your viewpoint on secondaries highly offensive. If we are not allowed to be honest here, then where? Over the last two years I have lost 5 friends to this illness - wonderful, vibrant women who all campaigned vigorously for better treatment and support. We all, after the first period of shock and sorrow, try and find our own niche and live our lives to the best of our abilities. I agree with your sentiments about living in the moment, no one understands that more than a person whose life WILL be cut short by cancer. This notion of ‘fighting against it’ simply implies that those of us who have a spread, or other bad news, are ‘failures’. That we haven’t tried hard enough or perhaps we weren’t being ‘positive’. This is an example of how the language used around cancer can be viewed as offensive. I don’t think I will be posting on theses forums anymore if this glib view of what it like to live with secondaries is representative of posters to this site.
I don’t think there is complacency in society about cancer, or breast cancer. It’s one disease that receives a massive amount of attention and funding - and breast cancer gets way more attention than any other type of cancer as far as I can tell. There are lots of other issues that need attention too.
I realise that breast cancer might feel like the most important thing in the world when we have it, but really it isn’t. There are wars, environmental issues, road traffic accidents, viruses such as HIV and hepatitis etc etc etc. Personally, I don’t want to think about breast cancer every moment of the day, or have it as the top political issue either. I also don’t think it’s necessary for everyone to know the ins and outs of the different types of breast cancer, the prognosis for each stage and the like. That’s why we have medical specialists. They are also trained in how to give out information (such as survival statistics), and I think they are better placed to carry out this informative role than the media, or indeed, internet forums. It’s not a case of ignorance is bliss, it’s a case of balance. I have a friend in her 30s just diagnosed with rheumatoid arthritis. My mother also got this disease at 30. Another friend of mine was murdered by her father (who was suffering with mental illness) along with the rest of her family aged 12. Another was killed in the Lockerbie disaster aged 18. Then there is my friend who is debating whether to have gender re-assignment surgery. I also know a couple of people with multiple sclerosis. My husband was an asylum-seeker suffering PTSD, smuggled into the country under a lorry, fleeing a country where personal freedom is highly restricted and dissenters face torture and death. Malaria and starvation are also causing many deaths every day.
So for me breast cancer, including secondary breast cancer, is a horrible disease. But it’s certainly not the only disease or issue that needs addressing.
Hi ladies,
When I was dx last year, I was told my prognosis was great, no nodes affected, 9mm and grade 2. If it wasn’t for this forum and the ladies on it, I could have went away and thought I was cured!! However the real world isnt as clear cut. I know that it could come back, I am also aware that sometimes having no nodes affected goes for nothing. Regardless of what my path report said, I would never say I am cured. I appreciate my life so much more now. It annoys me when celebs come out and say they are cured, or its just a year out their life, I believe it gives out the wrong message. I remember six months ago feeling that I wanted to come off this forum because I was reading things that scared me but I quickly realised that for me knowledge is power, I am not being negative I am being real. I drive everyday and believe there is more risk there. I remember at my radiotherapy the nurse who was checking me gave me my full path report as I had never received it and she said a great prognosis the only thing going against me was my age, I am 41! I enjoy my life and will continue to do so but now I will have a fear that I didn’t have before my diagnosis. I hope bernie Nolan and all the other ladies on this forum who have secondaries continue to have many haraisedraised
My comments were never meant to be offensive. I too have lost friends to cancer. The last funeral was just last week, so that’s four this year. My choice of words on my previous post were not the best and I had meant to say that “many” people with secondaries continue to live long and fulfilled lives. I am not that out of touch with reality to think that everyone will.
I am going to step back from this thread now. I apologize to any that I offended.
Hi ladies,
When I was dx last year, I was told my prognosis was great, no nodes affected, 9mm and grade 2. If it wasn’t for this forum and the ladies on it, I could have went away and thought I was cured!! However the real world isnt as clear cut. I know that it could come back, I am also aware that sometimes having no nodes affected goes for nothing. Regardless of what my path report said, I would never say I am cured. I appreciate my life so much more now. It annoys me when celebs come out and say they are cured, or its just a year out their life, I believe it gives out the wrong message. I remember six months ago feeling that I wanted to come off this forum because I was reading things that scared me but I quickly realised that for me knowledge is power, I am not being negative I am being real. I drive everyday and believe there is more risk there. I remember at my radiotherapy the nurse who was checking me gave me my full path report as I had never received it and she said a great prognosis the only thing going against me was my age, I am 41! I enjoy my life and will continue to do so but now I will have a fear that I didn’t have before my diagnosis. I hope bernie Nolan and all the other ladies on this forum who have secondaries continue to have many happy years
Surely the best information comes from our oncologists and treatment team? I’m certainly not getting my information from an article on Kylie or Bernie - and I don’t imagine NICE are either. Would people really think there was no risk of recurrence despite have to go for yearly mammograms for five years?! Why on earth would I be having chemo, radiotherapy and herceptin if there was no risk of recurrence? However, after a certain point the chance of getting a new primary / recurrence is the same as anyone else. If you can’t use words like ‘cured’ then, well we might as well say everyone has cancer (because strictly speaking they do).
I am saddened to hear of Bernie’s secondary diagnosis but pleased with her approach to it and she clearly wants to live a ‘normal’ life that she can which I know is what all of us do either secondary or primary. I do feel to see stark statstics about 40% of those of us who were stage 3 will see a return is not that helpful - It might be statistcally accurate but like another poster I was quite distressed to see it in black and white on a post about Bernie Nolan. Its not about burying my head in the sand or saying I have ‘beaten’ it - Its about trying to get on with my life the best way I can without constanly worrying about the shadow and once the 40% seed was planted I could not stop thinking about it. I have googled (yes I know I shoudln’t) and it has been on my mind constantly - I had managed to put the worry at the back of my mind and think that yes it may come back but then it again it might not. I now have to start again and try and put it back into persepctive with my life. My heart goes out to all you secondary ladies and I am inspired with how you all deal with it and that you live your lives and put up with some horrible treatments and SE in a very positive and matter of fact way - (thats not meant to be patronising) but for us ladies who are ‘awaiting’ the news that it has spread/recoccurance are vunerable too but in a different way.
Hi everyone, it is with trepidation that I walk into this debate, having been burnt many times on this forum when healthy debates turned into nasty free for alls…
I read the Sunday mirror article and it infuriated me. It’s such a myopic view of primary and secondary cancer, and the way it is worded distorts the information as it comes across to the reader. Articles such as this one certainly formed my pre-diagnosis view of breast cancer. I remember being really knocked back when I realised there wasn’t ever going to be an “all clear” for me , because so much from the media had previously seeped in to my subconscious, informing me that cancer was a fight, you could win, you could be told it was cured etc.
Bernie’s cancer hasn’t ‘come back’ , unfortunately it never went away. We all have treatment for primary cancer hoping that it will be cured. And primary breast cancer is curable, and many many ladies will be cured and have no recurrence. The problem is that the medical profession cannot, at present, tell which of us IS actually cured. They can tell you how likely you are to have been cured, based on statistics, but there is no individual test/certainty that you specifically are cured.
When I was first diagnosed and realising that this was the situation, the secondaries threads horrified me. I was in a terrible state of anxiety already and they just sent me into a spin. Seemingly ‘safe’ threads could suddenly morph into threads that made me want to vomit and pumped my anxiety up. I avoided them as much as I could. However, as time has passed and my mind has adjusted to the reality of the situation I found myself in, I have gradually been able to read those threads. The forums are as much of a support for those with mets as for those with a primary diagnosis, and it is a double edged sword to seek solace and support here when you are newly diagnosed as the hard hitting stories you can be exposed to are the payback you need to weigh up against the support of others in the same situation as yourself.
Hi I am sorry but I am with super trooper on this. I am triple negative and just about to have radiotherapy. After I have finished my treatment that’s it for me, no herception etc so my wa of coping with this is to believe myself ‘cured’ as if I spend that time reading about, listending about secondary bc I am probably going to worry myself to death. I want to live my life to the full believing I’ve beaten bc. If it ever comes back then I will deal with it then. This does not mean I am ignorant regarding secondary bc, I am fully aware of secondary bc, but rather selfishly (possibly) Ian not going to worry about it unless I find myself in that position. I believe stress can also trigger cancer so I am not going to stress myself out unless totally necessary. Just because this is what I think does to mean I do not have the greatest respect for anyone living with secondary bc.
people deal with this bl**dy awful disease in many different ways, maybe bernie tries to make light of her situation, as its the only way she can cope.
My daughter told me to look at this site because of all the very useful information when I was diagnosed with secondaries 18 months ago. My initial reaction was to say, ok and the information proved that I was very ignorant about this awful disease but…
I began to read stories about people in much worse cicumstances than me who were suffering bad side effects from their medication and it made me very worried and sad.
Now, I agree with Lemongrove, I may not like the truth, but it is out there. It is much better for me to be informed than miss a vital piece of information that may help me in my fight against cancer.
My heart goes out to Bernie Nolan, but somehow I hope she manages to raise awareness of this disease for all of us.
Please let all of us who post be kind to each other.
Margaret
I agree that some information shared here can help. For example, painting dark nail polish to protect nails during chemo, or what to eat when you have oral thrush. However, I fail to see how sharing survival statistics with people who don’t necessarily want them, is information that helps. For someone with a recently diagnosed primary, that is akin to tell someone with recently diagnosed secondaries their average remaining life expectancy. For me, it’s information that should only be given by a trained medical professional, and at the request of (and with the consent from) the patient.
I totally agree with Tors , her words are pretty much just how I feel, I am 22 months post Dx for stage 4 IBC with lung and bone mets, Treatment has given me an NED status but I know thats as good as it will get, I really hope Bernie nolan gets successful treatment to keep her at least stable and hopefully NED, If nothing else it raises the profile of SBC.