How I hate the blame culture, and the fact that well-meaning friends are always cutting out the latest articles on miracle breast cancer cures!! My dear mum died of Bc when she was 72, hormone-bases and was on Tamoxifen. She was given a lumpectomy and told she had excellent prognosis, but died while still on Tamoxifen. She was a paragon of virtue…never smoked, drank and walked everywhere. BUT, she didn’t breast-feed us lot, so I guess in some circles that was ‘her fault’ and why she got BC.
I, too have never smoked or drink alcohol, except very rare social ocassions. I had all 3 children early; breast-fed them for ages. and was fit and healthy, if a little overweight. Ahhh! There is my sin! If I had been thinner I wouldn’t have got it!! Mine is triple neg, and I am a lot younger than my mum, with a very poor prognosis. When I asked about reconstruction, I was basically told it wasn’t worth it!1 Thanks…oh and by the way, said my lovely surgeon, as he delivered the final blow, in front of a packed audience…it might help if you lose a little weight! My BMI hovers between 26-28. I am unable to walk due to severe spinal problems, so excercise is difficult for me; luckily I love to swim, but why don’t they give us a break? It is NOT our fault, we are just bloomin’ unlucky, so we don’t need any more guilt trips.
Best wishes to you all in the same c**p boat,
Jax
All this blame stuff seems to assume that all of us with bc don’t have feelings! When i am told this or that gave me bc, it makes me feel terrible- sometimes depressed but sometimes very angry. What gives some one the right to speak to us in this way especially when they have no experience or knowledge of bc.
Rachy xx
Hi all,
I always find this topic and all the different views interesting. If there is anything to add then, here is my slant on it all…
I am very average, started my periods at a very average nearly thirteen. Didn’t have sex until I was nearly seventeen…so hadn’t taken the pill particularly young and didn’t take it that long after. Only had two sexual relationships,(2nd one still, just about surviving after this bc pants)!! I do drink alchohol…not to the extreme, may be once a week…not binging either and I didn’t start that young…very average again. I have smoked on and off over the years, but again not heavily and only occasionally socially now…(actually since my diagnosis, before bc hadn’t puffed at all for about 3 years)…I had my first child at nearly 26, had three over nine years and breast fed them all…the youngest 'til he was a year old, the other 2 up to 7 and 9 months. There is no family history…I was told I was just unlucky, the 1 in 9 or what ever the heck it is. I am not over weight, although I do have butter and eat meat…so if the chemo didn’t mess my veins up enough then the fat will do a good job on my arteries! I do exercise, but not often enough!! So, there we are…yes I have had times when I have thought, why me…what did I do…what could I have done to prevent it…but I don’t think that really. I am currently at a stage where I do not want to spend my time trying to work it out, I have other issues which are far more self absorbing, like my self esteem and body image to deal with. My choice? Perhaps.
None of us chose this path of bc but we can chose( to a certain degree) how we deal with it. I believe we do ‘deal’ with it in our own and very personal ways. If it makes one person feel better believing that they are ‘fighting’ then that is not bad, it is only a terminology. I tend not to use fight…it is too pressured for me, but I do take each day and deal with it my way.
I was dx Jan 06, er+ pr+ grade 2, Mastectomy, chemo and rads, still on tamoxifen.
We live in a scary world, full of blame at the moment…
Scarlet.
One myth that I would like to investigate is the one where the health professionals tell you that a “few” weeks makes no difference to your outcome. I am not a scientist or doctor but if you live in an area where you go from lump to treatment in a week compared to one where it takes two months to get through the system is there a difference in prognosis?
Sorry - heavy, but to me much more interesting than the myths of why we have this bloody disease in the first place. Just lets learn how to stop women going through this in the future and make sure they have the best possible outcome by giving an instance response to symptoms.
Anne xx
Hi Anne
I’m interested in this too. My tumour grew from under 2cm to 4.5 cm in the month before I had surgery. It even grew from when I had the MRI scan (Thursday) and the operation (the following Tuesday). Surely it would have been better to take it out when it was smaller. And if I’d had to wait any longer for surgery I just can’t begin to think how much it would have grown by! I just don’t buy the theory that “a few weeks” aren’t important - surely speed is of the essence when it comes to treatment,. I don’t understand either why they can’t give Tamoxifen while we’re waiting for surgery - at least that would be something!
P
Hi
This happened to me too, went to gp in October, did not have op until January. Every test seemed to take two weeks and yes doctor said to me a few weeks wont matter. According to MRI and ultrasound in December, they were fairly certain no lymph nodes were affected but after op 19/24 were, Makes you wonder… Also changed from grade 2 to grade 3.
I think the whole business needs to speed up drastically.
Linda
I would call that a delayed diagnosis and I’d be writing letters asking WHY. Definitely …
Too many women on these forums reporting montsh to diagnoses and be fobbed off and then not taking it further. This just perpetuates the poor practice and “oh it doesn’t matter” behavious. It damned well DOES matter.
My delayed diagnosis is currently with the PHSO … very easy step, not complicated and rattle a few GP/consultant cages.
How do they know how much delay is in fact needed before it makes a difference? Surely it must vary so much between different cancers?
Heaven forbid that any studies have been carried out to ascertain this ‘reassuring’ fact.
Results of many tests (MRI, CT, mammaogram) are usually available a few minutes after completion. It’s only NHS bureaucracy, admin and this ‘Consultant is all-powerful. Only He can utter results unto patients’ attitude that hold things up. Rationing by any other name!
X
S
Hi
They have to have offer a date within 3 months of first appointment. I know this because, they had to offer to operate on me on Christmas eve to fulfil that criteria. I had to sign a form saying i declined the offer. I have two children and did not want to spend christmas in hospital for sake of a week which the consultant assured me didnt matter.
I will never know and cannot complain because they had offered me an earlier date and i had declined.
I agree about the tests and its not only the results that take ages, they seem to only perform them on certain days.
linda
I have recently had an MRI scan and was told to call after 7 days …this I duly did after a few calls i was told that it was reported on late as someone had been on holiday, it was reported but i could not be told the result as it was not typed up!
i am going on holiday now and awiting the 'phone call which has not been made to tell me the result…This can’t be OK
nora
Some quick thoughts:
I have heard from someone who does the tests that one of the reasons why there are delays is that the UK tests for being qualified to do the cancer tests are quite hard and if staff fail they are not allowed to retake the test, so the testing staff all concentrate on passing one test, whereas in the rest of Europe testing staff usually have one test they focus on and a second they can do if the situation requires. The UK situation can cause problems: for example, the BRCA tester for a major city was in treatment herself for breast cancer and there was nobody to run the BRCA test for her or other people during that period.
The comments that the surgeon made about reconstruction and obesity were poorly made. Unfortunately, surgeons as a group seem to be completely lacking in people skills. At the same time, it is true that even the U.S. reconstruction guidelines, which are not guided by penny pinching, exclude people with high BMIs from various forms of reconstruction, so your weight may be limiting the options that are medically possible in your case.
Finally, I have noticed in this thread that people again are concentrating on diet and breast cancer recurrence only, but I would encourage people to think of themselves not just as breast cancer patients but as people. The links between diet and breast cancer survival are a bit tenuous, in part because scientists haven’t broken breast cancer down by type. Recently, however, U.S. scientists found that a healthy diet reduces overall death by 40%in breast cancer survivors, but only by cutting out the deaths caused by diseases that are already known to be related to diet, particularly heart disease.
We tend to forget that breast cancer patients get other disease, even oncologists do. I know someone who gained a great deal of weight while on tamoxifen and started feeling very poorly. Her doctors at first all her problems much be breast-cancer related, but it was diabetes brought on by the weight gain, which she then had to lose for medical reasons. She is now a five year survivor of breast cancer, but now has another serious medical condition. And, of course, many cancer treatments are hard on the heart and bones. So, while using diet (especially without exercise) to “fight” cancer is dubious, adopting a better diet and exercising as possible can help counteract some of the bad effects of treatment and of general ageing.
HiAll
I agree that we need to take care with the language we use and what it says about this illness. We are all in this together and a ‘blame culture’ is not helpful for anyone. Many people I know eat a terrible diet, are overweight etc. etc. but they didn’t get this illness and I did (despite eating a healthy diet etc.) I think it is random.
Having said that I have decided to make a number of changes, simply because it makes me feel less helpless. Changes in thinking patterns, a better diet etc. can’t do any harm can they? However, I do think that some people take it to extremes and in the end may lose quality of life - is the weekly drink or the occasional treat going to make a difference in the long term? Maybe you don’t really live longer by giving EVERYTHING up - it probably just seems longer lol 
In terms of the waiting period I agree. I too was given reassurances that a few weeks makes no difference but I believe that it does for some people and the type and grade of BC should have some bearing on how quickly people go from dx to surgery.
I had mammo in March and was told everything was fine, then recalled after about 6 weeks for u/s scans, then biopsies etc. Had op 12 days ago, then more waiting for results, and now I am still waiting for results of a FISH test to determine whether a need chemo. The waiting is torture. In addition, every time I have had an appointment I have waited around an hour to be seen. I do feel that things could be organised differently.
alex
Hello All
I’ve enjoyed reading this thread and being a gobby sort of girl I had to say something.
Humans tend to stigmatise and point blame at all diseases its not just BC; lung Ca and you smoke, heart attack or diabetes - well your over weight. I work predominatley with adults aged from 16-91 yrs with respiratory problems asthma/COPD. The COPD patients are all smokers or ex-smokers and used to hate coming to see me or the docs because they feel they are to blame, I try to dispel this everytime i see a patient, I try to encourage them to form a working partnership with me in handling their illnes quickly and well.
These patients do not get medical attention quickly enought for the most part and will not present at their GP with even the most mundane of probs because they think they are going to be ‘told off’. No one should be told off.
I realise that no-one is to blame for this - we are not to blame for having BC - no one holds the crystal ball and says look at 40 I’m going to get BC so I wont drink/party/smoke/take the pill/eat meat in my 20’s. Life is for living and some of our life choices will be good others not so good.
Blame, guilt, stigma and all those negative emotions that come with those words will not help us battle/fight/kick box (to you pixie)/live with our Dx and Rx. Its total and utter sh*t thay we have this b*gger, it just plain bad luck and that after all happens to everyone. Its cr*p that our loved ones have to suffer with us. But I’m not going to let any one even attempt to pull a guilt trip on me. My life may well be far to short to have guilt over something i have had absolutely no control.
There said my peace - thanks for listening Rachyel xxx
I first had bc back in 1986 and had a recurrence in 2005, I have never smoked and I don’t drink that much. What I am aware of is that I had gone through very stressful times before diagnoses on both occasions.
I mentioned this to my GP and while there is no proof he said that at times of stress our immune systems are probably not working as effectively as normal and therefore we are more vulnerable to disease.
We all have different believes but I really do think stress was a factor for me.
Jan
I always think stress was a factor in my case too, as I had a very stressful 5 years leading up to this including anti social neighbour problems; a major escape of water at my house rendering it unfit for habitation over an 18 month period (this happened just as I was about to sell it); moving 450 miles and having to take on the role of being my late dad’s carer meaning my career completely stalled; my dad dying in care from dementia, followed by my BC diagnosis almost 12 months to the day later. As well as this my husband also had a very stressful tribunal case against his former employers which collapsed on a legal technicality.
The oncology team said whilst there was no hard and fast evidence, they were always very interested to hear of stories like mine as they find many patients mention stress leading up to finding out they had cancer.
Hi
Love your email Rachyel so true and so hard to do… It is in our nature to look for reasons even where there arent any.
Re stress, i was stressed in months leading up to diagnosis but then i could have had the cancer for quite some time. So was the cancer exaserbating the stress or was the stress feeding the cancer? I am not going to dwell on it.
All the best
Linda
I asked the surgeon if he could give me any idea as to how long the cancer might have been there and he said he estimated around 6 months. I don’t dwell on the stress element now either as I currently lead a pretty hassle free life. I no longer have elderly parents to worry about, have no kids to concern me and I enjoy the work I’m doing in our business, plus the course I’m on. I also live by the seaside and walk a lot which I find helps my mood and feelings of wellbeing greatly. However, I’m realistic enough to know this could come back again, but at the moment I’m just getting on with the process of having a life.
I feel that stress played a large part in my cancer. I was looking after my daughter for about a year with epilepsy.It was very hard and I didn’t look after myself and was very stressed continually. When she finally stabilized on medication and I started to get on with my life again…bang, cancer diagnosis. Apart from stress I don’t fit any of the risk categories.
Many people I’ve talked to have had similar experiences with developing illness after a prolonged period of stress
I know that lots of people believe that their breast cancer may have been caused by stress. However, there have been dozens, if not hundreds, of studies about stress and breast cancer and overall there is simply not evidence that stess is a contributory factor. A study which asks people retrospectively if they were sressed prior to their diagnosis is methodologically flawed…you would have to ask people who didn’t have breast cancer whether they had been stressed for the survey to have any validity.
There has actually been one study which showed that people who were stressed after breast cancer were less likely to get a recurrence than those not stressed!
Stess is in any case a very difficult condition to define and very subjective. Some kinds of stress can be beneficial, other kinds not.
I think the idea that stress causes breast cancer is another myth…and it certainly drives me bonkers!
Jane
I believe what they are looking at in terms of stress and cancer is to do with stress making you participate more in all sorts of unhealthy things i.e. smoking, drinking, bad diet, substance abuse etc. Certainly, when I was flooded out of my home in London I can honestly say my diet was lousy as we were living in hotels and temporary housing for long periods (I piled a load of weight on during this unfortunate period). I was also still a smoker at that point, albeit a very light one; this changed to anything up to 20 a day and I was probably drinking more than usual. When I moved home to look after my dad I was on my own with him and the only respite I got was standing in the back garden for 10 minutes having a fag.
However, I don’t believe in beating myself up over unhealthy stuff I’ve done in the past as I feel it’s better to focus on the present and just to try to have a life however short it might be.