'Death row'?

‘Death row’?

‘Death row’? I really hope that Ann Marie Rogers is successful in her High Court bid to get herceptin. It is truly awful that people with cancer are having to go to court to get treatments which their doctors recommend.

However I was disturbed to read her statement yetserday to the court that: ‘With my prognosis, waiting for the cancer to return is like waiting on death row.’ She also talks about her ‘constant fear’ of dying of cancer.

Now I’m sure most of us can identify with that fear but I think the anticipation of possible recurrence and death is much more complex than these words portray. Ann Marie Rogers may feel like this, but I think they are inappropriate words (not least because being in prison on ‘death row’ is quite different to the anticipation of a death from cancer) and I think her legal team ill advised her to use them.

All of us with cancer have to learn to live with the possibility of recurrence, and the possibility of dying of cancer. I have few treatment options if I get a recurrence but I don’t describe myself as being on death row. I think that to talk about being on death row does everyone with breast cancer a disservice, particularly those with secondary breast cancer whose stories are rarely publicised and usually hidden.

What does anyone else feel about this?

Jane

Think this is a difficult one Jane I agree that the words used were/are inappropriate and I also do not feel as if I am on “death row” but I think that possibly they were used for dramatic effect more than anything.

If you read some of the comments on the BBC news website in the “Have Your Say” section following the Panorama program you see that many people have the view that Herceptin is pretty ineffective and there are plenty of other treatments around that do not cost so much and which can be used instead with more success.

This is a tricky one coz how do you reach a balance of emphasising the important benefits of Herceptin for those who need it while you have the other camp who believes it should not be provided but instead the money spent on hip replacements.

This is a high profile test case and if the verdict goes in her favour then the repercussions will be very wide spread as it will effect anyone who is unable to access life saving drugs, lets face it, patients with other forms of cancer are also being denied access to new and expensive drugs which could prolong their lives.

If it needs a bit of dramatisation to try and bring the overall message across then maybe that is what has to be done but yes I do agree that having to use this type of wording does do a disservice to all secondary cancer people. All we can hope is that the benefits will ultimately be worthwhile for all.

Siggy.

I agree, Jane Whilst we all have to live with the threat of recurrence, it is going overboard to suggest that she is ‘on death row.’ Her cancer may or may not come back, with or without Herceptin. Obviously she used those words for dramatic effect, but the way she puts it almost portrays Herceptin as a cure for breast cancer, which it isn’t.

I feel that she is using words most likely to grip the stomachs of those hearing them, rather than describing how it really feels to live with the fear. Shock and shake tactics!

That doesnt detract from what she is doing tho, which I think will succeed in kicking the arse of every PCT currently using equally inadequate descriptions for women whose circumstances are ‘NOT EXCEPTIONAL ENOUGH’!!

I am proud of her for taking this on. So many people are losing sleep over this at night that I feel a bit guilty now for having got it myself. The sooner this is sorted out the better, but it does look as tho it may be a few weeks yet before a decision is handed down - yet more wasted time.

Sorry for wandering off the point Jane!

I dont feel as tho I’m on death row either.

herceptin debate —Well, I am not from the UK, but this board happened to be the first one I found when I was diagnosed and I sort of stuck here (have finally found a nice Dutch one now too). This has led to me following the herceptin developments in the UK. Herceptin in the Netherlands became the recommended treatment about a month after the trial results came out, and as far as I can see on the Dutch bulletin boards, most women get it.

About Ann Marie Rogers, I saw her story on the BBC website and I was wondering about one thing. Looking at her pictures, I don’t believe that is a wig she is wearing. So, she probably did not have chemotherapy recently. I don’t understand how her prognosis can be so terrible in that case.

I also read the ‘have your say’ comments. I found a lot of them extremely annoying. A lot of people quote fake ‘facts’ (herceptin 90% ineffective???) and seem to have no clue about cancer treatments whatsoever. Worry about unknown side effects? Do they have any idea what the accepted side effects of the current cancer treatmens are.

Thanks Jane. For bringing this up, I’ve just had a lovely day out and tomorrow evening I’m meeting two friends at my local pub for some lovely grub and a glass or three. We all have secondaries and will have a lovely evening, lots of laughter. Death Row wasn’t appropriate but I do hope she gets the herceptin.
Belinda. x

Death Row My goodness, if all us ladies with mets felt as though we were on Death Row what a miserable existence that would be.

Like Belinda I met 2 friends for lunch at the weekend - lots of fun. Today I have been to work and walked my dog twice. Next week I am going on holiday.

I can’t say I felt that way after my primary diagnosis either although my prognosis was ( correctly as it turns out ) very poor.

I hope that Ms Rogers gets herceptin. I wish her well in her fight.
I suppose she may feel that way but Death Row for me - I think not.

Panda

Hi Jane It was a bad choice of words but I actually thought it was just me (a mettie who refuses to sit on death row) who thought it.

I think perhaps it was a means to an end but I’m sure there could have been a more creative use of words. There was also an implication that without it she would die and with it she wouldn’t - if only that simple?

Someone who is on death row has invariably done something to warrant being there - we certainly don’t need statements in the media implying if you have secondaries you have done something to deserve it and as for the euphenism that we are sitting around waiting for death is absurd.

I wholly accept that no one should have to seek court intervention in order to receive hospital/drug treatment - how very wrong!

Love Twinkle xoxo

Death Row?!! As someone who has a terminal prognosis I suppose I should feel like I am on Death Row but nothing could be further from the truth, and I’m sure that the same goes for the rest of the secondary girls.

This melodramatic description worries me, I thought we were long past the thought that a cancer diagnosis means death. It also looks like Herceptin is being thought of as being a cure, also not the case.

I am totally behind anyone fighting for the right to have any drug therapy that may help them, unfortunately I’m triple negative but hope that if I can hang on long enough there might be a new drug that may help me, but please keep the arguments realistic. This lady’s comments have probably terrified some newly diagnosed patients.

Whatever the prognosis, it is a very negative way of thinking, I’m far too busy making the most of the time I have left and doing as much as I am physically capable of.

I sincerely hope that this lady gets what she wants and then starts to enjoy her life

Ruth xx

Anne Marie Rogers I was reading about her in the Daily Mail and was rather upset at her words especially as my 10 year prognosis is slightly worse than hers.
I think that her statement was done for the dramatic effect of her words and, I agree Jane, that they are inappropriate.

For people who have just been diagnosed or just been told of their prognosis, particularly those who are not in contact with sites like this, it will fuel their fears. (Please don’t take that the wrong way.)

Completely agree I too was very bothered by Ann Roger’s choice of words - and I’ve heard similar words used before (possibly by the same lady) a couple of months ago, with the phrase ‘left to die’ .

If this is how people are being advised to portray themselves as a means to an end of getting the go-ahead for treatment, then so be it, but it isn’t accurate and it isn’t helpful to those of us with breast cancer whatever our individual circumstances may be. The implication of the media message is that without herceptin she is going to die and with it she will live - and we all know (but the general public doesn’t) that this is an inaccurate oversimplification.

Since being diagnosed with breast cancer in mid-November I have spent a lot of time reflecting on my own attitudes towards this illness. I came to the conclusion that I had developed a head-in-the-sand attitude towards bc, which was partly fuelled by what I was told by the various media. If you had asked me, pre diagnosis, what it was I knew about bc I would have said that breast cancer was no longer something that people died from because there were now so many new cures !!!. I know better now, but I do wish that stories about breast cancer were less dramatic and more accurate. Just for an example, in the various snippets recently about Herceptin (other than the Panorama programme) it is never mentioned that Herceptin is not a treatment for those who are HER2 negative - this omission implies that all women with breast cancer could be helped by this new ‘wonder’ drug. I was pleased that Panorama made this clear, but I would have liked to have heard what proportion of women with bc are HER2 positive - does anyone know ?

Like others I wish Ann Rogers well - and really hope that Herceptin will help her, but it would be so much better if people didn’t have to use the media to influence supposedly clinical judgements.

Kate

Hi Kate I agree; it would be much better if we didn’t have to resort to the media, but any port in a storm is the way I felt about it. In fact I was on the radio just the day before yesterday saying the same thing!!! :wink:
(sorry couldn’t resist!)

The proportion of all Breast cancers that are HER2+ve is about 1 in 5 I believe.

Take care
Jen xx

media So…what is the prognosis of Ann Marie Rogers? Does anyone know? Did she have chemotherapy? The point is, if she didn’t, she has a rather difficult case. All the evidence for the effectiveness of herceptin is from trials where it is given after or with chemo. Even though it will probably work without chemo, this has not yet been proven.

I agree with the media portrayal of breast cancer. When my aunt was diagnosed through the breast screening programme (before my own diagnosis), I remember saying to my mum, well, if they caught it *that* early it is no big deal nowadays. I am totally embarassed about that comment now. But if you have no experience with breast cancer whatsoever, that is was you learn from the media: Caught early? Lump out, no problems!
In light of my total ignorance before diagnosis, I could usually forgive people with stupid comments during my treatment. Before my rather steep learning curve I could have easily made them myself.

About the subject; on death row? I know right after treatment I may have felt a bit like that. Maybe also the result of being on this mad rollercoaster for 6 months and getting spit out with still a bad prognosis. So if this woman is just out of treatment I can see why she said that. That is the worst time.
The feeling goes away though, life went back to normal for me amazingly fast.

Critical Illness claims I was diagnosed with lobular (type 2) BC in November 05. I’ve just submitted a CI claim through my scheme at work. I was wondering what experiences anyone’s had with making claims and whether they pay out or not . (I understand all providers are different).

I’m a new user and its really nice to find somewhere where people understand what you’re going through.-

Prognosis Hi Jeanette

The Daily Mail reported that Anne Marie Rogers barrister, Ian Wise, said “without treatment there was a 57 per cent chance of Mrs Roger’s breast returning withingn ten years. If it does return then the chances are it will be fatal”. The report also says that her cousin died of breast cancer at the age of 42 and her mother also died from cancer.

It doesn’t comment on any treatment previously given. However I can empathise with her feelings; as you say, you are on this rollercoaster, you have the surgery and treatment and still get a bad prognosis but you are supposed to carry on.

Panorama I submitted something for Panorama “have your say”, but they haven’t posted it. I was making the point which I feel is very important and overlooked, which is that researchers say that the future of cancer treatment is going to be revolutionary new drugs which target the specific biology of an individual’s cancer. Inevitably we will move away from one cheap size fits all - Tamoxifen being the classic example for breast cancer. Treatments that target a relatively small number of people are going to be expensive. This has to be faced up to and some sensible debate needs to take place about how it is going to be paid for and, whether the public is prepared to pay for expensive targeted drugs which benefit relatively small numbers of people or whether they will have to be funded by some other means.

I’ve also been wryly amused by some of the misogyny of some males who have posted on websites about Herceptin. Here’s a good example from the Panorama site:

“NHS funding is already hugely imbalanced with far more invested in women’s than men’s health. Any body which decides on funding priorities should be 50% male and decisions should be made on the basis of clinical judgements, not a politically correct “women and children first” agenda.”

I don’t think I need to say any more about this post. It speaks for itself.

Re. my previous post Just read in last Saturdays D. Mail, just as I was going to throw it out, under a heading ’ “'We’re not allowed to prescribe breast cancer drug” say Doctors’ that Anne Rogers has ‘now endured …chemotherapy and radiotherapy…’

have your say Thanks Granmum, she must be wearing a wig then I suppose. Sure doesn’t look like one! I was quite puzzled by this.

Her prognosis is similar to mine, allthough I managed to get into the HERA trial. I can definitely understand how she is feeling. Just before I heard I had drawn the one year arm of the HERA trial, I was also really depressed about my prognosis. And then you know about this new medicine that looks really promising, has minimal side effects, and you are just unable get it. All, because people who have no idea what it really, really means to have such a disease are very slow in deciding about it.

And then all these comments in the ‘Have your say’. It angers me that a lot of peope are so sure that it should not be provided, appearing very rational and scientific. But they are secretly sure that this wil never happen to them and they have their facts completely wrong.
I also tried to get a comment in saying that the 90% failure is total nonsense, but it was not posted. And the argument that lawsuits over unknown side effects will happen in the future and the often made comparison to Thalydomide also make no sense whatsoever. That was a drug against morning sickness.

Can you imagine the scenario where a doctor tells you, ‘sure I can fix that morning sickness for you, you will just lose your hair, risk your heart, become infertile get osteoporosis…’ You would tell him to get lost. Yet, this is how cancer treatment works. Sueing over side effects? I would never know which ones were from the herceptin and which ones from everything else.

3 huge international trials with a 10,000 women and a lot of comments say there is not yet enough proof that it works, and then they are then wondering why it is so expensive.

Sorry, just venting a bit. Each time I read that ‘Have your say’ I get angry again, and yet I can’t stop myself.