I’ve been wanting to type this little rant of mine out for so long but before now have chickened out but what the heck.
I’m so fed up with this rotten disease being trivialised and I see so much evidence of this here on this site. Not the secondary forums, thank God no…just elsewhere. I’ve been using this site since early 2004 and things have changed over the years. We have never had access to such a volume of information but where’s all the serious info gone? The hard facts. Just on the homepage today I’m reading candles could cause cancer but eating popcorn might protect me from developing it. Sorry but I’m fed up with this stuff, I don’t believe it should be given precious space here. I’ve never read so many posts from those with primaries questionning the need for surgery, hormonal treatments, chemo etc. I’m the first to take control of my treatment but I fear all the trivialisation of breast cancer has down played just what a killer disease this is. Are those newly diagnosed now being routinely ‘protected’ from knowing the harsh facts? No-one wants to be scared rigid, I don’t want to scare anyone rigid, a cancer diagnosis is such a shock and it takes time to get your head round it all but to make such important perhaps life saving decisions about treatment we should be fully informed. Breast cancer kills thousands each year. Yesterday, on this site, I read bone metastases were the best secondaries to get as they were easily treatable. Now I’ve had a long run with bone mets but I’m aware I’m very much an exception and any secondary diagnosis is devastating be it liver, bone, elsewhere. A mets diagnosis = terminal. Most of us die within a few years. Of course there are always those who live longer (guess I’m one of them) but it’s a terminal diagnosis. Whichever point we are at from our diagnosis we can all choose to opt for complementary, conventional, both or no treatment at all but the trivialisation of this disease is not doing any of us any favours.
And I have chickened out as I’ve posted this in secondaries. Apologies.
Rant over…off to eat popcorn and balance my chakras!
Hear hear, Belinda.
Having lost my mum to breast cancer I am only too happy to take whatever treatments are offered. I want to be around to see my children grow up.
Breast cancer is a killer and I very much doubt that eating popcorn will protect us from it.
Hope you are keeping well.
Love Rita xxx
Hello Rita, it’s so nice to ‘see’ you here…I’m doing ok, thanks, on Xeloda at the moment, hope I get a bit longer with it yet.
I hope you are well.
I’m sorry to hear you lost your Mum to breast cancer. My Mum died last year from ovarian cancer and of course it was bl**dy awful.
Take Care Rita…Belinda…x.x.
Hi Belinda,
Yes I pretty much feel like you do and have recently posted on the ‘thinking of not taking tamoxifen site’.
It is so difficult to draw a line between not wanting to frighten people and screaming WAKE UP ITS CANCER.
A lot of literature advocates the ‘lets not take it and do it naturally’ approach. It is quite convincing in its tone and you cannot blame people for clutching at straws in the hope of a cure.
However I would urge people to speak to their oncologists, breast care nurses and people on this site before making decisions.
They are people with the science, knowledge and many years of experience. Twenty cases cited in a book in no way matches that.
You are right to rant and I am with you. However these women are just doing what they think is best. All we can do is persuade them to look at the whole picture.
Hi juliet66…you’re right…I think I was so scared of scaring others I chickened out and posted in secondaries…if that makes sense? 
I’m concerned we (media, magazines like Vita, well meaning doctors, BCN’s, fellow patients and others) are in danger of trivialising this disease so much people will not have access to all the necessary information so they can then make the best decision for them. Of course that may be no treatment at all.
Thinking of you after reading of Anneth’s death here…I still miss my very good friend who died of bc 3 years ago this month. And all the others I’ve met along the mets road. Take Care…x.x
Hi Belinda
I really understand where you are coming from. I for one was so grateful to receive all the treatment I had and in fact said that if I had to have more chemotherapy or 2 years of herceptin instead of one - please please give it to me. I knew the seriousness of just having cancer. I can see how hard it is for you to read comments from people either not wanting to follow through with a treatment plan for various reasons or making comments like if you’re going to get mets, then bone is the best - as you say no matter what kind of mets, it’s terminal and nobody knows how long they’re going to live with it.
By the way I love popcorn - the cinema type and also I eat about half a pack of corn thins each day - because I have a wheat/gluten intolerance so took up eating those instead wishful thinking
xx
Hi Ruby…thanks for your posting…keep eating the popcorn…(in front of a wide screen telly preferably. I will be the one in the next seat eating a Magnum!)…x
Belinda
You are not alone on this, I have nearly bitten through my tongue and have flat hands from sitting on them for so long.
My other great rant is the airtime that has been given to swine flu - which has caused some 30 or so deaths in the last few months, 30 people die from breast cancer every day, and perhaps if the statistic was presented in that way a little more notice would be given to our plight and perhaps some headway would be made in getting some more treatments and one day a cure for mets.
In the meantime I am taking anything they offer me to keep my liver mets at bay for as many years as possible.
Not a big fan of popcorn, but Magnums are a whole different story!
Fiona
uh, I guess you are referring to my thread on tamoxifen - if you read my original post then you’ll see that I am also concerned about how my ocd may be affected by my taking tamox. - of course I may sail through but I don’t know that yet (and I will give it a try) I was expressing my fears,rather than saying I’m just not going to bother with taking it - ocd is pretty shit, ok it won’t kill me unless I’m driven to it by the hell is can create (truly I’ve been there before) - I was just weighing up things for me…not in any way dismissing the excellent drug that it is for many people. I certainly think things like crystals and homeopathy are complete tosh. I know how shit cancer is too -my little brother died of it at home,I was there. Just wanted to say that I’m not being casual about this in any way.
Hi belinda
I totally agree. It doesn’t help when there are articles titled “You need not take cancer lying down” (The Times a few weeks ago) about about how the outlook for the 250,000 people annually diagnosed with cancer in the UK has “never been better”. I would beg to differ, but then my perspective is probably skewed having been Stage IV from the start.
When I think of what I knew about breast cancer when first diagnosed (I did do lots of research)and compare this to what I have really learnt this past year through my own experiences and those of others in my real and virtual worlds, it bears no comparison. Of course we need to be well-informed and proactive about our treatment options, but I do think that when first diagnosed we’re mostly dealing with the shock of a life-threatening diagnosis and harsh and seemingly-barbaric treatment plans, so we strive to consider options which could minimise the impact the treatment will have on our lives.
Whether women are being “protected” from the reality I do not know, but, certainly breast cancer is presented as a very “treatable” form of cancer by the medical community. Interestingly, research of women with secondararies has shown that most women felt they were not warned of their likelihood of developing secondaries and the secondary diagnosis came as a shock when they thought they had been “cured”. Are we being shielded from truth and, do people really want to know? Some research suggests that the percentage of recurrence/seconandaries is much higher than is generally accepted, and yet women deny the possibilty this may happen to them. I guess we all need hope to get through our treatment, but this shouldn’t mean that we underestimate this disease.
When I’s first dx my own oncologist told me that bone mets would be the least of my problems (my bone scan was clear) but I guess with the state of my liver & lungs, relatively speaking he was probably right. I have read that when it comes to survival rates with mets that “distant” mets like bones are deemed, generally, to have longer survival rates than spread to major organs. However, it is irresponsible to dismiss bone mets as easily “treatable” when we know how painful and debilitating/disabling they can be.
I do love popcorn but I don’t think I could eat it daily!
xxx
Hi Fiona…yes like you I’m find it so frustrating.
At times if I spoke my mind I’d probably be banned from the forums.
So agree about all the swine flu coverage…so over the top and out of proportion to the actual number of people dying. Whereas breast cancer coverage is mostly pink feather boas and ‘all clears.’
I hope the treatment for your liver mets is going well.
I’m sure I read somewhere 3 Magnums a day slow down cancer growth…milk chocolate only though…that’s very important!
Belinda…x
Hi Chipper…my postings are just a frustrated response to a sea change in the perception of breast cancer over the last few years.
I sincerely hope you make a decision that’s right for YOU re Tamoxifen.
Take Care…x
Hi Ripley…yes like you I was diagnosed stage 4 from the beginning. There’s quite a number of us in this boat. I used to be guilty of trying to reassure others newly diagnosed with mets that all could be well for a long time. I feel really awful about that now. I was, I think, at times offering false hope…but then again I wanted to say there were lots of treatments out there that may work for a while, perhaps a long while. When sixpen died I felt I should/could no longer offer such blanket reassurance so now try and temper my posts…glass half full…half empty…dash of hope.
I think I read you have had some tough times lately? I hope if this is so, my chemo memory, you have some easier times soon…very soon.
Belinda…x
Hi Belinda and everyone
I feel a bit of a fraud coming on here because I don’t have mets and have just been diagnosed with a local recurrence after 12 years of decent health since the first ‘dose’. I’m an optimist soul, I know, but I have always felt in my guts that it would come back and have gone hell for leather working to build up the life that would make sure my kids had a good deal, that I would have achieved things I wanted to and be able to look back with some pleasure etc.
my cancer has mutated from a grade 1 to a grade 3 and has come after a mastectomy and years of reconstructive therapy, hernia repairs etc and, where professionals were bullish last time and assured me that it was very unlikely to come back to a situation where we chuck everything at it. They used to say things like ‘don’t worry, all the ladies feel that it will come back but in your case thats very unlikely’ and now its ‘OK you are bucking the stats’.
I feel that this is the start of something very different and that I am on a different road. I’m 50 now, I don’t want to go back to the high powered job with the long hours and the mad stress, I want to find a new way of going on that takes us forward differently.I’m just appalled at what is happening.
I think what I’m trying to say is that all the crap about ‘this might help and this might hinder’ isn’t really real - and I completely agree that the emphasis on unsubstantiated ‘reports’ just dumbs it all down. I’m not where you all are, in the world of mets and basically, terminal illness - it must just piss you off. I admire you so much for your rant, its almost become a taboo to give voice to the hideousness, but if you don’t face it, from where do you get the courage to keep going?
personally, through bringing up my family, keeping my marriage strong, caring for dying parents and in laws, I have learned to trust my gut instinct which has always been clearer than what doctors, professionals etc could tell us about outcomes and right now, my instincts are telling me that I am moving into your world.
Feel free to tell me to get a grip and/or that I don’t know what I’m talking about, not being in the position that you are, but I was moved by what I read to tell the truth about how I’m feeling about my future - I’m not a defeatist - far from it, and believe it or not, I’m not self pitying, but I see it how I see it.
apologies if you don’t feel its justified, but this is my rant!
best wishes to you all
thanks belinda - I know you wrote a very reasoned and good post on that thread and it all really helps…didn’t want you to think I was having a go back, but just wanted to assure people that I am totally aware of the seriousness of cancer and not being arrogant ! lots of good wishes to you xxchipperxx
daisyleaf - that is a very well written piece xx
Hi daisyleaf…please do rant away. I wish you well, after all this time between diagnosis I hope you find that new way and are able to live life how you want to, plan to. Like yourself I’m an optimist…I wasn’t before my diagnosis which I’ve always found a bit weird but I’ve spent these last few years making moments count.
You’re right to trust your instincts. I’ve had a terrific oncologist and his team know me really well. I’ve always had a large input into my treatment.
Good Luck daisyleaf…with Love…x
Hi again Chipper…no worries…you’re so right to take some time out and really think through your treatment options. Good Luck…x
Hi Chipper Belinda and all…I want to thank you for your honest thoughts on this dreadful disease. I have been getting treatment for bone mets for ten years now…have been through a lot over the past 20 years. I look back…horrific chemo (CHOP) hairloss, mastectomy, bone mets diagnosis 10years later, radiotherapy, more chemo, numerous biphosphonates (Pamidronate, Bondronate, Zolidronate), radiotherapy, MRI CT Ans bone scans, bone biopsys…etc etc. I have taken the lot. I am on various painkillers and take MST (morphine) Gabapentine and more. I will take whatever is needed to treat this bu**er of a disease. I have never forgotton the feeling of despair, anger, bewilderment and being overwhellmed by all the jargon. I found out last week that if you have ever been on Biphosphonates and need a tooth extraction it can cause “necrosis of the jaw”. I was on the web looking at what this all entailed only to be told I by a young nurse at the end of the phone that I shouldn’t really be doing this!!! It is my body deary!!! Anyway tooth was extracted yesterday, it was horrific, was in the dentist chair for almost an hour…he looked exhausted poor lad…so was I. I too have lost friends and family from this dreadful illness but I also want to pass on to those newly diagnosed that you can get through this. I never dreamed I would still be here…it has been a bumpy ride…but it is so good to get stuff off your chest and also to give some hope to those who feel they have none. I was told that I had a 50% chance of surviving 2 years…but still here…and dealing with it daily. I do think it is most important to LISTEN TO YOUR BODY and to be kind to yourself. Trying to do too much when you should be resting or having a sleep to repair and recharge your batteries. Sorry I have ranted on too much. Best wishes to all of you, love Scottishlass.
Hi scottishlass, it’s been good to see your postings, know you have only just joined us here but it was a real boost, for me, to read of another mets patient further down the road from me…(6 years passed diagnosis.)
I know of a couple of friends who stopped bisphosphonates for a time before and after their dental extractions…like you they found out about osteonecrosis themselves…one dentist dismissed a friend’s worries but luckily she decided to seek advice before treatment. I also know a friend who has osteonecrosis, horrible condition.
Hope you’re recovering well. Like you I’m surprised I’m still here.
Good Luck…and Love…x
Hi Belinda, Thank you for replying to my posting earlier today. I am new to the site and I enjoy reading all the different threads. It makes me realise how far I have come through this long journey. I really am positive and enjoy life. What surprises me is that I always looked upon myself as a bit sensitive and shy and a bit scared of life ( before BC I mean). I do not know where all this strengh came from but I know I am LESS stressed and I am having a good life. I had to give up my work and miss the girls I worked with in the Blood Transfusion Service but we keep in touch and had a reunion on Wednesday as one of our group was over from Cyprus where she now lives. It was a great afternoon and we have always looked after and supported each other through life’s journey. Since I left work in 1999 a few much yonger girls have been dianosed with Cancer and have NOT made it. I cannot get my head round that at all. But I continue to feel positive but know that things could change at any day. When I got dianosed with bone mets I felt terribly alone and knew no-one who had mets. That is why it is so comforting to know that I can communicate with similar people on this site. Keep in touch and send a private message anytime. Have just managed a tuna sandwich so fingers crossed all with be well after the extraction. Were you ever told about the tooth extraction problem? It was all news to me and quite upset me at the time. Take care, Scothhishlass