Jackster, to answer your question, I think that in the main I would like the media to stop using words like cured, beaten, won the battle, just a year out of my life etc, because the media are the opinion formers. I don’t think the medical profession use words like cured, beaten, won the battle etc (most are far too litigation savvy to tell patients they are cured). As for patients, I appreciate that people have their own coping strategies. It would be good if they could confront their demons, but that often is not possible or takes time. What cancer patients shouldn’t do in my opinion, is collude in the deception though, just to keep family/friends/colleagues happy. I can’t think of any other potentially life threatening disease where people actually pretend that everything is hunky-dory, and wonder if that’s because cancer is still taboo.
It’s such a shame that the media seem to have this view that the reality is too negative to talk about, because if they opened up to the reality they would discover a whole range of experiences, and human emotions. Personally I find listening to the stories of strong women who know the score, faced up to it, and manage to enjoy life anyway, inspiring - and these messages may help the less strong to gain strength.
Excellent comment there LG. Sums it up for me perfectly!
Laurie x
I do know what you are saying, Lemon Grove. I am working hard to convince my family that I am NOT cured, and it is NOT over, even if for the time being I am not diagnosed with secondaries. BUT (you knew that was coming, didn’t you?) I think it may be part of the human condition for us and/or our loved ones to try to deny our mortality, even up to the point of death in some instances. My friend who is suffering from MS tells me that her family constantly dismiss her symptoms and try to play them down, even though she can see that she is worsening before their eyes, and actually really needs emotionally for them to honour her illness rather than dismiss it. When my mother was diagnosed with stage four lung cancer four years ago, her slightly deaf husband mis-heard the doctor, and thought that she could (and would) be cured, and they spent most of the next year in that completely ridiculous (to her daughters) place, even though we kept trying to get them to understand and cope with the reality. Same with my sister’s husband’s pancreatic cancer, also stage four. They were going to “beat this thing”. Or not, as the case was.
I know that breast cancer IS different. Because nowadays so many women do continue to live long lives with BC, it is easier for the fiction of immortality to be cast over the illness. I think that leukemia and lymphoma are a bit the same; there are so many people who recover or go into remission that it is assumed that if you get it, no big deal. But it is a big deal, men and women still die of breast cancer in far too great a number for any complacency. I have always been impressed that Jenni Murray usually mentions the women who haven’t been as lucky as she has been when she talks about her cancer.
Part of the reason that it is important for us to make the story clear, is that there is so much more work that needs to be done, and it’ll be expensive. Like the cyberknife (I’ll go over and bump it, after this waffle). And I too find the words and stories of women with secondary breast cancer worth reading. I’m still scared of dying, and I’m still scared of developing secondaries, but you all have made my fears more bearable. Many of us primaries who have crashed this conversation (I blame this ridiculous forum, where you don’t know what catagory you’re crashing, all you see is the thread name–roll on Springtime and a new design) have learned a lot from your articulate arguments. One of the reasons it is helpful for me as a primary to read the seconday threads is that it gives me a language to use with friends and family. ‘Last month Val wrote that…’, ‘Lemongrove says…’, ‘A woman I know with secondaries in her liver and bones says…’, ‘When Claire was dying she told us…’. It helps make it a reality, not just for me, but for my friends and family who need to understand. Thank you, and, when you can, keep writing (that includes you, Tawny, try not to let our insensitivity get you down–some of us are a bit bull-in-a-china-shopish, but we don’t mean to be)
Quail I understand that people use denial as a coping mechanism, but with affection and respect, I think we have to ask why they need to do this (and in my humble view, the reasons are more complex than being just part of the human condition) . A couple of peope have made the point that BC is actually very high profile, and not marginalised at all (and of course all the pink fluffy stuff is very high profile), but the trouble is this approach doesn’t address the realities of BC, it trivialises it, and fosters ignorance when we need to raise awareness.
Maybe in our modern society we expect answers/cures, and because the cure for BC (and other cancers), remain ellusive, BC is a bogey-man of diseases. But like all bogey-men, once confronted they lose their impact. It seems to me (and maybe as a secondary person my view is slightly skewed), that the media sway from one extreme to the other. They either portray BC as curable, and describe people winning the battle etc, or else portray those with secondary BC as people who didn’t win the battle after all, and are now trying to resist the inevitable (which will probably be a nasty and sticky death). The truth is that nobody (whether they have a primary or secondary diagnosis) can say they are cured, or have won the battle, and neither are those with secondary cancer people who didn’t win the battle. All of us with BC are in the same boat, in that we have to deal with a great uncertainty. Someone with a seemingly innocent primary can have cancer sweep through their body in four months (and there is nothing they or their medical team can do about it, because some cancers do not respond to treatment), while. conversely, people with secondary BC, can and do live relatively normal lives for many years (and do not have nasty deaths, as most are heavily sedated). The high profile pink stuff is OK to raise funds, but there needs to be some education about what BC actually means.
itv.com/presscentre/pressreleases/programmepressreleases/bernienolanongmtv/default.html
i have posted a link as to when Bernie was on the this morning programme and the interview she gave then - it seems quite sensible and balanced I think. The only mention I can find about a ‘year out of my life’ is when in one interview she mentions being down is from the mirror newspaper and getting an email from someone who was 10 years down the line and this person had said ’ its only a year out of your life’ its not something Bernie said. The headlines about being ‘cured’ are clearly newstories I can’t find any thing where Bernie has said that herself. The press/newspapers seem to want to cling onto the positive stories and unfortunately for celebs they are often misquoted or misrepresented too.
MIRROR QUOTE 'There was one particular email that came when we were a bit down. This woman had had the same cancer as me 10 years ago and said, You can get over it. Its one year of your life and it will go by really quickly.’
XX
Key features wrote: “Let’s face it, everyone with or without cancer has a terminal diagnosis…unless you believe in resurrection. Average life expectancy is 78 for men and 82 for women. Personally, at this rate I’ll be happy to make it into my 60s.”
Key features, this is the most insensitive and frankly offensive post you’ve come up with yet!
I am 41 years old and have been in treatment for BC constantly and with no break since I was 31. Although I currently have no known organ involvement, I have tumours behind my sternum, my whole breastbone is “moth-eaten” and I have node involvement right up to my neck. The last 2 chemos (over the last 8 months), have not worked and my tumours are currently growing at the rate of around 1cm per month. I won’t find out if my current treatment is working or not until January. The chances of me making it into my 60s are extremely slim. This is a relatively positive experience of secondary breast cancer and I regard myself as one of the “lucky” ones.
Your views are crude, rude and your tone is flippant and arrogant. I really hope that one day, you won’t have to eat your words. In the meantime, please try to have a little more humanity for those of us who are suffering physically and/or emotionally as a result of our diagnosis and prognosis. Please try to understand that many of the views that you disagree with are based on a great deal more experience of this situation than you may ever have and, as such, should be respected, regardless of whether you agree with them or are able to understand them or not.
Tawny, I really hope you won’t be chased off a thread that you’ve found useful and interesting by a small number of ignorant and insensitive posters.
Angelfalls, perfectly put. Thank you. I hope you get some more heartening news come January. x
Thank you, Tawny. Take care. xx
I’m 40. I have a diagnosis of cancer. I’m in the middle of chemo. I feel as if I’ll be lucky to make it to 60. How is expressing this insensitive and offensive?! Yes, I am at a different stage of my cancer journey, but that’s hardly my fault. Anyway, I’m certainly not feeling like people are wishing me well - it almost feels as if some would like me to get secondaries to know what it feels like. I’ll know where to come for a “told you so”. It’s clear I’m not welcome. So I’ll bow out.
I wish eveyone all the best with their ongoing treatment and Angelfalls I hope you get some more positive results from your future chemo.
No one on earth would wish you ill, Keyfeatures. Perhaps it is your style of writing that can come across as being rather blunt. This is the trouble when we are all ‘strangers’. I found some of your posts insensitive, it’s true but I would hate that to be translated as wishing someone bad luck or ill health. We probably need to learn to agree to disagree on some points of view. I very much hope that your treatment goes well and that your life will be long and happy. The BC experience is not easy for any of us and that is probably why our emotions are high when we think (and I stress ‘think’) our conditions are being trivialised. Good luck.
Key features, Perhaps I can direct you more explicitly, then, to: “Let’s face it, everyone with or without cancer has a terminal diagnosis…unless you believe in resurrection.”
If that doesn’t trivialise a secondaries diagnosis, then I don’t know what does. You are, by now, aware that you have posted this crass statement on a board for people with secondaries, whose aim is to find information and support.
If you cannot understand that it is insensitive and offensive to express this sentiment here, then I feel it probably is best for you to “bow out” of this particular discussion.
As for the rest of your post, it only continues to offend; the mere suggestion that anyone with secondaries would want another living being to go through what s/he has to endure just illustrates how little you’ve taken on board from the whole of this thread.
I am not getting into this arguement but would like to reply to Lemongrove. I do read the secondary threads ( I am a primary lady) and take much encouragement from them. I realise my cancer may come back, I believe it probably will, but as Grade 1 Stage 1 I thought I would have a few years yet. Your comment about a seemingly innocent primary can have cancer sweep through through their body in four months worried me .
Have you stats for this? I do realise that you have a lot of knowledge on this blasted disease that I don’t. I am 9 months on from diagnosis and so far so good. One day who knows…?
Foxyferret, just because cancer can progress very rapidly doesn’t mean it will. The point I was making was that the media should not portray people with primary BC as being cured or of winning the battle etc, and neither should they describe those with secondary BC as having lost the battle, or as having no hope - it’s just not that simple. People with primary cancer live each day with uncertainty the same as those who have secondary cancer. Of course, most people with stage 1 BC survive, but that is not always the case, and sometimes there are people with secondary cancer who live for years and outlive those who were initially diagnosed with primary cancer.
Safronseed, On This Morning (28<sup>th</sup> October 2010), Bernie stated that she was “cancer free” after undergoing a mastectomy, chemotherapy, and taking Herceptin. Also, on the Graham Norton Radio Show (3<sup>rd</sup> February 2012), Bernie announced that she was “completely free of cancer”.
Nobody wants to rub salt in the wound because the poor lady has enough to contend with. I just feel the way she depicted her original diagnosis, was wrong, and perpetuated the simplification and trivialisation of a complex and serious disease.
Lemongrove - I so agree with you.
Perhaps the medical profession play a part in this. My surgeon said that my cancer is curable but that if it spreads (or already has) it would be ‘not curable but treatable’. I wouldn’t have seen the problem with using the language the surgeon used with me. (as i have come to understand more about BC and my risk of recurrence and spread, I will never describe myself as cured though, and I can’t imagine ever feeling ‘free from cancer’ - but that is personal choice that may be at odds with what my surgeon would say)
Sika, I do believe some doctors need to be careful about the language they use. I think when they are dealing with someone with an early stage cancer, they shouldn’t say they can offer a cure, because that provides legitimacy for innacurate information, which then tends to get bandied about. Also, it could undermine trust and confidence if the patient later suffers a recurrence. I also think it is wrong when those diagnosed with secondary cancer are told there is now no cure - because the fact is, there never was a cure. My feeling is that anyone who has been diagnosed with BC is in the same boat really, in that none of us know for sure how our cancer will behave, and as such, have the sword of damocles hanging over our head. Fortunately most of those diagnosed with a stage 1 cancer will survive, but that cannot be guaranteed. Consequently ,I would prefer it if, when dealing with someone with a stage 1 primary cancer, doctors said something like, ‘your cancer is confined to the breast, and by removing it we believe we can contain it - in which case the prognosis is very good, and with treatment the statistics suggest your cancer is unlikely to return’. Similarly when dealing with a person with secondary cancer, they shouldn’t say your cancer is now no longer curable (because it never was), but say something like ’ unfortunately your cancer has now spread to your system and is therefore no longer containable -but we have treatments which may slow progression, and in some cases halt progression.
Truth is the key.
Doctors do tell you that you are ‘cancer free’ after you have had a mastectomy as they have cut it all away and if at that moment in time your CT scans are clear. My view is that there is nothing wrong in being told that- it does give you a boost and hope for the future. They always (in my experience anyhow) also add that it may return and that is why you have the 6 monthly check ups and a ‘hot line’ to them if you experience any pain/changes or worries. What they don’t say is that it will never ‘come back’ I understand that and we all have different coping mechanisms for dealing with this uncertainty. So Bernie if Bernie did say she was ‘cancer free’ she was probably reporting what she had been told and what she understood from her medics to be right at that time. We all know how unpredicatable this nasy disease I would never say I am cured - I don’t even say NED - I tend to stick to ‘I am being treated for breast cancer’.
Saffronseed, if doctors do tell patients they are cancer free, they shouldn’t because the patient may well have remaining cells which are undetectable. The best any doctor can say is that there is currently no evidence of disease. As for Bernie, she did say on the Graham Norton Radio show , that she was completely free of cancer - and that may have created a misleading view of and played down the seriousness of cancer. What she should have said in my view, is that there is currently no evidence of disease, (and hopefully it won’t come back - although it could).
This is just my view, and you are perfectly entitled to disagree, but I think it is important that we do not collude in the deception. The media are always looking to entertain, and we shouldn’t allow something as serious as BC to be used for that purpose.
I have read this thread with interest ,my surgeon said in the letter sent with the pathology results from my surgery
" It is never possible to say that you are “cured” of breast cancer"
Jill xxxx