UK's cancer survival rates

Thank you all for a very interesting discussion.

Salopets - I too had lobular cancer. I’m very pleased to hear that someone with lobular cancer was caught early. Unfortunately, mine was in 15 lymph nodes by the time I was able to put myself into the system at age 50. I had recognised changes at 46 but my GPs refused me further investigation saying I had nothing to worry about. I tried three times for referral and failed. What has become very apparent to me is that some GPs appear to only consider breast lumps when it comes to breast cancer, when my symptoms were armpit swelling, thickening and lumps. I’m actively taking my misdiagnosis further. I recently met with an independent expert who said most of his misdiagnosed cases are lobular or inflammatory. As you so rightly say, lobular does not form a definite lump. Neither does inflammatory. Both these cancers are more common in younger women and should you be under 50 with no NHS screening in place, there is a much higher possibility that your cancer goes unnoticed for years like mind did. If GPs are to remain the gatekeepers they have to be up-to-date with their training and realise there is much more to breast cancer than breast lumps. I personally think no woman should be refused access to further investigation should she notice changes in her breast or armpit area that are of concern to her. We are our own best advocates. No amount of breast cancer awareness is of any benefit if we are not able to get past the gatekeepers.

Whilst I realise women with early stage breast cancer can have recurrences, the higher the stage of the cancer, the more likelihood of recurrence. Had my cancer been caught at an earlier stage I would not have suffered the same amount of psychological and emotional stress. I may not even have needed chemotherapy. I have involved the NHS in great expense, and continue to do so, which I have no doubt could have been avoided had I received better care at GP level.

Good point, msmolly, about survival and mortality rates.

There are plenty of people around who are alive after 5 years, who either have bc or will develop secondaries after this arbitrary point in time.

I’m neither a medical researcher not a statistician, but I do like to examine the words people use…

…So, again, I think we should be very careful not to equate the term ‘spending on cancer services’ (which I imagine could be interpreted, if one had a mind to, to include anything from resurfacing the oncologists’ car park to extending the operating hours of a radiotherapy department) with ‘spending on cancer drugs’ (which I hope normally means drugs that tackle cancer, but I suppose could be also applied to the painkillers and steroids that can prescribed alongside them).

I also think it’s interesting that, in addition to increasing spending on cancer drugs, Harpal Kumal also cites reducing radiotherapy waiting times and better training for surgeons as areas that need to be improved for meaningful progress to be made. It’s refreshing as it is usually drugs, or the lack of them, that generally seem to be the focus of publicity and discussion.

Does anyone know if surgeons themselves are agitating for better training for performing cancer surgery? (And what, by implication, are the shortcomings of the training they do get?) And if they are, are they starting to receive it?

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I agree Bahons - the language of cancer is fascinating - and I am intrigued by the way terms are manipulated - particularly by media, charities and Government.
My surgeon told me that there is a shortage of surgeons who are capable of performing sentinel node biopsies. She has had to forego other forms of surgery to focus solely on breasts because of demand and, perhaps, skill shortages. Apparently being limited to one area of practice is not good for professional development if you are a surgeon.
I am surprised by the large numbers of women who have to keep going back under the knife because they have failed to get clear margins. Is that due to poor surgical training or just the way lumpectomies are?

I had to have two re-excisions due to failure to get clear margins. When they do surgery for lip cancer, they have a microscope in the theatre so they can check as they do the slices to see if they’ve got it all.I asked if they couldn’t have a similar system for WLE - so they can check the margins while they’re doing the axillary surgery. and take a bit more if necessary. Too complicated, they say. But I found it really stressful to have serial operations.

Yes, it must be very upsetting and demoralising to have to have repeat surgery. Not to mention the delays to subsequent treatment and the costs incurred.

I didn’t have any such problems with my lumpectomy, but my ‘keyhole’ oopherectomy many years previously (when the technique was relatively new, to my surgeon, I think) was a disaster as a piece of ovarian tissue got ‘lost’ inside. This was what was surmised after another oopherectomy failed to find any more ovarian tissue and my oestrogen levels remained far too high (for someone who allegedly had no ovaries!)

What you say about a shortage of surgeons who can do sentinel node biopsies is very worrying, msmolly. What’s the good of an so-called advance in techniques if there aren’t enough people around capable of performing it? And it’s not that new. I remember asking my surgeon about it 5 years ago when I had the lumpectomy and being told they knew about it, but didn’t do it (presumably because no-one had been trained).

Sentinel node biopsies are thought to reduce the risk of lymphoedema, (a lifelong burden on patient and NHS alike) so not making funds available to enable surgeons to carry these out is short termism at its very worst, resulting in greatly increased expenditure in the long run

As you say, the language of cancer, the presentation of cancer, the politics of cancer, ‘cancerspeak’, etc is fascinating. My own pet hate is ‘the all clear’ (no such animal), so beloved of journalists. Closely followed by ‘do the trick’ (my suggestion that ‘beating back the flames’ might be a better analogy hasn’t always gone down well).

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i was very lucky to have had sentinel node biopsies both sides, though they still took 9 nodes from one side and 3 nodes from the other, luckily both lots clear. i think the problem with early detection for younger women is that the traditional mammogram cannot always pick up DCIS as the cells are probably too small, and in younger women the breast tissue is so dense, hopefully in the near future (the Cancer Reform Strategy reckon by 2012) we shall have digital mammography which is much clearer than traditional, for all women with a strong family history of cancer this will be so much better.
lots of love
Alisonxxx

Does anyone know if there is always an area of DCIS round an IDC?My path report mentioned this and went on to say there was a 5mm clear margin.Does this mean that the margin was round the whole area including the DCIS or just round the tumour?This is probably in the wrong place but not sure where to put it.I have wondered for a while.

I had 1mm of DCIS around my IDC - I don’t know if it is common or not. I suspect Horace that the clear margins refer to the area beyond the DCIS.

On the issue of SNBs there seem to be a lot of women who are still having “sampling”.
I had isolated tumour cells in my sentinel node and was asked by my surgeon if I would participate in a trial where they were leaving nodes in and just relying on chemo to zap anything.
I wasn’t keen - nor were half of the multi-disciplinary team who said I should go for full axillary clearance.
The trial (name escapes me) is stuggling to find out if not performing full clearances when women have isolated tumour cells or micro-mets increases risk of recurrence. They cannot recruit enough women that are prepared to take the risk of not having a clearance it seems.
This is also the problem with trying to evaluate if chemo is of any use at all in Stage 1 ER+ women. Most ER+ women who have chemo will go on to have hormone therapy and persuading large numbers of ER+ women to have chemo and no hormone therapy is next to impossible.

Blackheath - very interesting point about using technology in the theatre to check for clear margins. Apart from the emotional cost to the patient the financial cost to the NHS of theatre time being taken up unnecessarily is something they should be exploring.

Hi Val…I had to have re-excision a week ago, due to the finding of DCIS at the very edges of the IDC margins. It was in 2 separate places, so I can only think that, if you didn’t have a re-excision, then your margins included the DCIS. So that it was 5mm margins from the DCIS. But don’t take my word for it, still getting used to everything myself!
Happy mums day
helenx

I’m always interested in reports about whether cancer treatment is better in other countries. About a year ago I met a woman who had moved back to Scotland from France as she wasn’t happy about the quality of care she was receiving there; she told me the treatment she was getting in Scotland was far superior. I also have a friend in Madrid whose mother died from liver cancer and she said the care her mother received wasn’t great, plus there was no real support system for the family. When her mother was at home they had to pay a lot of money for nurses and carers to assist her elderly father. She told me a lot of health stuff in countries like Spain is seen to be the responsibility of the family and she was amazed at level of support I received when my late dad developed dementia.

My sister is in the M East and she gets treated via an American style system provided by her employers. She told me employees have to wait ages to be seen about anything (she has gynae problems) and she thinks the NHS is better. An American friend tells me you are only fine in the US if you can afford the right level of insurance. I guess all health services wherever they are have their problems. I couldn’t fault my NHS treatment here in Scotland, but in the 20 years I spent in London I would not have been without BUPA coverage as I was not confident in the NHS there.

My experience of GP referral is very good. When I was 46 I found a lump and went to my GP. I had a mammogram the next day, which showed a fluid filled cyst. I was told I had lots of cysts, which is why I wasn’t worried when called for second stage screening…

Molly - I had isolated cells in the sentinal node and my surgeon told me not to worry about them. He said that they were just cells that had migrated there during surgery. I just had four nodes removed and I’m not having chemo, just rads. Now you’ve got me thinking.

Going back to the Harpal Kumal quote about healthy lifesyle - I have a healthy lifestyle, had my children in my 20s, breast fed etc, etc and I still got bc. I agree that we should be encouraging people to live healthily, but’s not the b-all and end-all.

Yes, I wonder if the comments at the end about lifestyle were added at the behest of someone else (I smell a bit of PC here!) …obviously a healthy lifestyle makes sense, but as you you say, salopets, it’s no guarantee at all.

Interesting points, Cherub. I have heard that in Spain close family can be asked to carry out nursing tasks that UK residents (except those with rellies in Stafford Hospital perhaps) would expect to be performed by medical or ancillary staff.

I think language barriers can also play a part. Even if you speak the language fairly well, it can sometimes be hard to cope with something of this magnitude in another tongue. And then there’s different admin and funding, etc. Plus, some people may prefer to be ‘home’ with their loved ones closer by. I have to say that I haven’t actually heard of any Brit in my area who has chosen to do so, but there may well be some.

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Salopets - I was only offered chemo because with vascular invasion and Grade 3 I was just over the 7% cut off mark. Onc wasn’t keen to give it to me but I thought I’d give it a go. As it transpired I went through hell and after 3 FEC and 1 Tax he pulled me off of it. I don’t regret trying the chemo but I do mourn the loss of my 19 cancer-free lymph nodes.

Yes this healthy lifestyle thing is beginning to get on my wick and I am growing bored of the suggestion that we somehow have brought cancer upon ourselves through lifestyle choices. Just because I didn’t breed like a rat from age 16 and breast feed furiously I got cancer? Nonsense. I am fit and strong and healthy and always have been - until this. I am a veggy who has always eaten her greens and troughed down huge amounts of fresh fruit and veg. In fact everyone I have known who has developed this cancer has been healthy, active, slim.
The obesity + inertia = cancer thing is just too glib for my liking.

I’m not fit and wasn’t when I got breast cancer and this may have contributed to my getting bc as did not having children probably and probably high alcohol consuption too. I don’t blame myself though.

I don’t think the baby should be thrown out with the bath water. No one is to ‘blame’ for getting cancer but so called healthy lifestyle does make a difference statisticaly.

Like…yes smoking definitely does increase risk of lung cancer…which isn’t to say that everyone who smokes gets lung cancer nor that people who don’t smoke don’t get it.

I get really irritated when people say: ‘I didn’t do this that or the other and I still got breast cancer’ (as though saying therefore the risk factor is wrong.)

Jane

When I went for the diagnosis…one of the things that really stuck with me was, that the bcn said ‘don’t blame yourself for this, some women do’. It had never even entered my head to blame myself, and that phrase took me by surprise! As far as I was concerned and still am, I had no input into what happened to me, as far as I know and as far as the professionals know! Doctors do their best, but they are still learning too!!
helenx

When I was diagnosed I was left on my own with the Consultant whilst the BC nurse went off to find my husband (long story, but I’d been told 4 weeks before I didn’t have cancer as my results were clear). He said to me “don’t ask yourself why you got this, or whether you did anything that could have given you this. We will probably never be able to tell you”. He then followed it up by saying he needed me to focus on the fact he had removed the cancer to the best of his ability as a surgeon and that thought stayed with me during my treatment.

I agree that we shouldn’t blame ourselves and I never have, but some people will always question what they have/have not done and wondered whether it would have made a difference if they’s acted differently. Jane, I’m not saying that the risk factors are wrong, what I am saying is that not enough is known about why we get bc. I don’t suppose any of us ever thought we would get bc and, as cherub said, we will never know why we got it.

Sorry to be an “irritant” JaneRA but I am becoming increasingly aware of a media-driven blame game in all cancers - particularly female cancers. Copious articles on Jade Goody’s cancer being the result of promiscuous youth and all that crap.

It feels just like the beginning of the 80s when my friends and colleagues were dropping like flies from HIV/AIDS. Yes having unprotected sex resulted in them contracting the virus but to the great unwashed it was just another excuse to put the boot in to gay men.

I read an article the other day claiming that the upsurge in breast cancer was because women were too busy pursuing careers to breed “when they should”.
That may be an accurate as a risk factor - but the agenda tied onto it stinks.

You’re not an irritant msmolly…!

But what annoys me is when people say: ‘I never did x, y, z’ or ‘I did x, y, z’ when clearly the thing they never did or did is established at the moment as a risk factor. Its like no one gets any kind of science these days.

Cervical cancer is associated with unprotected heterosexual penetrative sex…so it is probably the case that the more willies near a cervix the more likely to get cervical cancer which is not the same as bad articles on promiscuity.

Risk factors are not causes and the two get muddled.

And yes I remember the 1980s too and the way gay men were treated.

I agree that the causes of breast cancer are not understood but there are some risk factors which tell something. I think this is quite a good link :About us | Cancer Research UK

Jane

I think it is a perfectly reasonable for anyone dealing with a cancer diagnosis to explore possible causes and consider if they were wholly or partly responsible. Actually I would think it a little odd if some serious thinking time weren’t dedicated to it.
Certainly it is galling, if you have been a health conscious individual, to still get whacked with the cancer stick.
There are plenty of women who use this forum who did all the “right things” to keep risk at bay - had children before 30, breastfed, kept themselves slim and fit, were moderate consumers of alcohol, never took the pill and blah blah blah. And yet …

HPV’s role in cervical cancer is unquestionable - what I find utterly distasteful is the media inference that this young woman only had herself to blame for her untimely death because of her presumed sexual behaviour. It may be scientfically accurate to apportion blame based on her lifestyle. But it is also vile.