I hope nobody minds me asking this question, but I am a little bit concerned, from what I have read and also after talking to a friend today. Her friend had bc and six years later she has liver secondaries.
My question is (my mum was diagnosed with bc two weeks ago and we are still in shock, and hopeful that she will recover fully) but with what I am reading secondaries seem to be very common. Is this the case. Its just having just got over the shock of my mum having cancer and starting to accept she could well survive this, to now worrying that this is going to be like being on death row waiting for the cancer to reappear. Sorry if I seem silly, but the thought of loosing my mum is tearing me apart.
I have not had a chance to speak on the health line to one of the advisors as I have been working during the times the phone lines are open, hence I keep asking questions. sorry to be a nuisance and thanks for taking the time to read this.
Thanks.
Hi Jules
Breast cancer is a very diverse disease. Some breast cancer spreads quite quickly, some recurs after several or many years, and some never returns.
Believe it or not it is very difficult to get accurate statistics on how many women with primary breast acncer subsequently get secondary disease. It is probbaly somewhere between a third and a half.
Five year survival figures for breast cancer are better than for many other cancers but that still doesn’t give an accurate picture of those who subsequntely develop secondaries.
Statistically women who have no lymph node nvolvment are less likely to get secondaries than those who have cancer in their lymph nodes. But none of the statistics can tell you what will happen to an individuall.
I’d say try to take everything slowly and just try to support your mum during her treatment now. The early days after diagnosis are very scary and eveyone finds their own way of handling the fear of what might happen next. As I said breast cancer isn’t really one disease…its many different kinds of disaese and many people do survive for years and subsequently die of something else.
best wishes
Jane
Hi Jules
I’m starting to do work with a GP surgery in our City on advanced breast cancer and he’s printed off some stats for me. They’re a big practice and currently have 109 patients with primary breast cancer of whom 6 have secondaries so I think you can draw your own conclusions to this.
There are currently two pilot studies going on with the collation of data for secondaries as it’s been told to me by Ann Keen (one of Alan Johnson’s colleagues) that it’s too complex and costly! Plus there are only around 13 secondary breast care nurses in the country.
As Jane says there are many many different types of breast cancer and some will follow a pattern of either coming back as a local or regional recurrence or as a secondary.
I went 10 years before secondaries and I enjoyed my life during that period. I didn’t particularly worry during that time whether or not I’d get it back (but that might be the type of person that I am) I think all it would have done would have been to increase my anxiety and not really enjoyed my life as much as I did.
It’s early days for your mum and takes a while to get things back on an equal footing.
All the best.
Pinkdove
Until recently no - one has kept stats on diagnosis of people with secondary breast cancer. Dr Foster on line has figs for last year for how many were diagnosed with primary cancer and how many with secondaries for each breast clinic in England.
Cancer Research UK has a new way of predicting how long we are all likely to live on average after diagnosis up to twenty years ahead.
I’ve got my own theory that there’s 440000 women diagnosed with b c per year, there are 12000 dying from it, there used to be 15,000. So I imagine of the 44,000 who get it roughly a third will go on to get secondaries that they die from. Well that’s my theory any way. That means two thirds don’t die of breast cancer.
After diagnosis I was convinced I would die of breast cancer despite all assurances to the contrary. Currently I don’t have secondary breast cancer and so far I have lived almost five years since I found out that I had breast cancer. I didn’t have lymph node involvement so my risk is lower than if I had had it, but I still experienced extreme fear after diagnosis because my cancer was misdiagnosed for six months and I’d read all the stuff that says early diagnosis is key to survival. I found the fear very debilitating, as was trying to deal with everyone else’s feelings about the situation. I have become very selfish and look after myself now.
I hope your mum’s treatment goes well and that she recovers soon.
Mole
Hi
I was always told when I was diagnosed that three quarters of breast cancer sufferers survive and a quarter die in the long term. As Mole said alot depends whether it was in the lymph nodes or not and with the different types of breast cancer, some are more ferocious than others. I was diagnosed 3 years ago, had bilateral mastectomies and reconstruction and now on Tamoxifen. Was told I had no lymph node involvement. Was also told that although with my type of breast cancer there was more chance of it being in the second breast as well, that it wasn’t supposedly a quick moving cancer through the body. What you have to tell yourself is that you only hear about the sad stories, there are thousands and thousands of women out there who have had breast cancer, got through it and will never go on to have secondaries, and are out there living very happy healthy lives. There were three of us at work in the same corridor all diagnosed with breast cancer around about the same time and I had a major liver scare a couple of months ago, but it turned out to be a cyst and a hemangioma, but I have decided I am going to stop looking over my shoulder for what might be possibly coming my way.
Julie
I’ve been very confused by the statistics being told different things by different people, though the figure of 1/3 of women going on to develop secondaries seems to be the most common figure given. Your figures were interesting Pinkdove, not least because they are “real”! However, it is obviously only a snapshot at this particular moment and the 109 with breast cancer presumably include people diagnosed many years ago. To get a true reflection of the proportion of people who go on to develop secondaries, they would have to include those ladies who developed secondaries but have since died. I suspect that will be quite a few more than the current 6.
It would also be interesting to know, Mole, whether there are fewer people dying of bc than previously because there are fewer people developing secondaries, or whether those of us with secondaries are now living longer. Suspect it may be a bit of both.
I had nearly five years before developing liver secondaries - won’t say that I didn’t worry at all during that time but it didn’t dominate my life, despite always having a feeling that I hadn’t “finished” with the cancer. Think everyone has to deal with the fear that it might come back in their own way, just as those of us with secondaries have to deal with the fear that the treatments will stop working and no longer control things. The important thing is to find a way to deal with that fear, so that life can continue to be good despite this awful disease. It’s still very early days, Jules, for you and your mum, but hopefully as treatment progresses and things start getting back to some form of normality, you will indeed find a way of dealing with that fear.
Kay x
PS Good to see you posting Julie and to hear you sounding so happy despite your scare a few months ago. Think it’s next weekend you are in Swindon for the Golden Wedding (same weekend as my children are taking me somewhere special as a treat if I remember right) - hope that goes well and you and Chris have a great time away. I went back to work for a few hours this last week - very scary but also actually very good!
Hi Kay
I’ve got the print-out from the GP in question and that’s from 2001 up to February of this year. In 2001 the numbers referred with primaries was 69. I notice in 2006 they had 111 primaries as new referrals and have already got 109 this year and that was only from February. Unfortunately I didn’t think to ask him how many in the other years have gone on to develop secondaries.
He also gave me a print-out (not of the names obviously) but the years people were born and the years are 1938, 1939, 1947, 1951, 1959 and 1968 so quite a range of ages. Five of them have bone mets with only one having lung mets.
The one thing, as you mention though, is that I don’t know how many have died over the years.
It will be interesting to see whether the results of the pilots are made public and whether it will then prompt the government to ensure that all Trusts keep data on secondaries, The other thing that makes me wonder is whether they already keep data on regional and local recurrences?
Those figures are really scary, Pinkdove, in terms of the huge increase in the no of people being given a primary dx. NOt sure I understood correctly the first time though - is that 6 people with secondaries diagnosed this year or a total of 6 in the whole practice?
Also interesting that it is 5 with bone mets and only 1 with lung mets (clearly only a vey small sample though). I was told when diagnosed with liver mets that that was relatively unusual, it mainly being bone mets initially, but that 20 - 25% presented with liver mets initially. Definitely need some real, “planned” statistics don’t we?!!
Do you know exactly what figures these 2 pilot studies are collecting? I do hope that they make them available. I couldn’t find the figures you mentioned, Mole, that Dr Foster published. WIll look again but is there a link you can post?
How are you and your mum doing, Jules? I’m sorry if we have rather taken over your thread - you probably thought you were asking a really straightforward question. I do find the statistics “interesting” but all the time you have to remember that they are just statistics and we are all individuals, who will respond in different ways and are unpredictable! Has your mum’s treatment started yet?
Take care everyone
Kay x
I also am fascinated by statistics.
Couldn’t find the Dr Foster link Mole but your stats on diagnosis and mortality are presumably from the CRUK website which has some interesting graphs, charts and tables on breast cancer incidence and mortality. The latest figures available there are for 2005 when 44,659 people (99% of them women) were diagnosed with breast cancer. In the same year 12,509 died (12,417 were women).
The incidence rate of breast cancer has steadily increased since 1980 (the incidence rate per 100,000 of the population rose by 53% between 1980-2004.) BUT the mortality rate is declining (13,705 women died of bc in 1996). It will be very interesting to see if these trends continue. Some women with metatstic breast acncer are living longer than in the past…I would love to see breakdowns on these figures so we knew more about who is actually surviving…both in terms of site of metasteses and the pathology of tumours…treatments, class, postcode too.
And yes apologies to Jules for rather taking over your thread.
Jane
Hi Kay
Good point! I could really kick myself for not asking more at the time when I had the meeting with the GP but we only had 20 minutes and I wanted to get other points over to him.
I don’t know what stats the pilot studies are going to collect but it will be interesting if we could know them, I also don’t know for how long it will run. Fingers crossed that it’s successful and will be rolled out across the country.
When I saw that 5 out of the 6 had bony involvement it did make me wonder whether that’s the first place that it travels, although obviously not for everyone. I’ve also got it in my spine and liver and it makes me wonder where it travelled to first.
Carol
Don’t kick yourself, Carol!! I’m just so impressed that you have got this GP practice on side and talking to you (and giving you figures!). I just waffle on…
And the questions just go on - if bony mets are the most common first site for spread, why? ANd why sometimes not? And what does that mean for prognosis? Clearly bony mets offers a better prognosis than liver mets but what about someone like me with liver mets only as opposed to someone with bony mets that have then spread further to the liver? I also want to know whether the fact that I have multiple but tiny mets throughout my liver is “worse” than when they believed I had one solitary but very big tumour (apart from the fact that it was then considered operable) - my onc evades that question very skillfully, so my guess is that it indeed is not good news!!
I think my interest in the stats is because it means I can have a better idea of the “reality” for me and what I can truly hope for. I now tend to “ignore” (with all due respect) stories of ladies with bony mets who have survived many many years because I don’t feel my physical situation has much in common with them (though emotionally there is a great deal in common and I do really value all the support from you ladies with bony mets!).
Anyway, much too much waffle again - and must go and start doing something for dinner!
Kay xx
bcna.org.au/content/view/79/95/
Kay, one lady in this publication has had liver mets since 1992. Again, I know this is not the norm, but it goes to show it can happen!
Jenny
x
for Jane RA
Dr Foster guides - see this link which will take you to basildon breast clinic as an example
drfoster.co.uk/guides/ObjectList.aspx?w=30&p=3&obid=128&sub=1
it tells you how many women there were diagnosed in 2006 (I think) with metastatic cancer
same applies to other stats so if you added up the figs you’d get the number diagnosed in the year
Mole
Thanks for both these links, Mole and Jennywren. WIll look at the Dr Foster figures when I have a bit more time. Really like your link, Jenny, as I can obviously “file” that one away as being relevant to me! Having re-read my post, I sound quite “down” about my situation which actually I’m not at all. I search out stories like the one in your link, Jenny, because though I know the stats say the average survival for liver mets is much less that that, I just need the hope that I too could be in that group at that right hand end of the “bell curve”. But I know that it has to be someone with liver mets etc as otherwise I feel I am just deluding myself. I recognise that the odds are against me surviving that long but if even just one person like me has survived for that length of time already, then I feel justified in hoping that I too can do that. And I am a great believer in hope being one of the things that keeps us going and makes life good.
Always easier of course when you are feeling well and symptomless…
Liked your quote (from ?Jerome Groopman?) on another thread, Jane, about hope and not confusing it with optimism. Can’t now find it but found it very thought-provoking when I read it.
Must go to bed - being back at work is hard going, particularly the having to get up in the morning!
Kay x
At the launch of the secondary task force last October I talked to one of the big cheeses at BCC who told me that she had been friends with a woman who had lived with lung mets for fifteen years. Yes, I know this is extremely unlikely, but knowing it is possible gives me hope.
Deirdre
Am I odd? I love good news stories but don’t particularly see them as having relevance to me…they might but they might not. I’m as interested in why those at the left side of the statistical bell curve don’t make it as I am about why those (probably fewer) at the right hand side do.
Why is contemplating a premature death seen as the anathema of ‘hope’.? I agree that hope keeps us going and helps to make daily life manageable, but seeking out minority survivor stories never did it for me.
Thanks so much for the link Mole…really interesting
At another level of course I believe I will live for ever…seems to be part of the human condition…
Jane
Oh what a sad person I must be…8.00am in the morning and searching thorugh the fascinating Dr Foster site.
You can find by clinic the numbers diagnosed with primary bc, the numbers diagnosed under age 45, and the numbers newly diagnosed with metastatic bc. (2006 figures) I checked out about a dozen hopsitals and its fascinating. In some hospitals the numbers with new mets surprisngly low (this may be ‘hopeful’ or it may be figures are wrong???). Examples: Whittington in north London 109 with primary, 4 with mets; Bradford 158 with primary, 3 with mets. By contrast figures more like what I would expect at Royal Free in London (132 with primary and 45 new mets cases; Southampton 346 new primary and 100 mets.) Why these differences???
Inteersting that in most hopsitals I looked at its about 20% aged under 45 diagnsode with primary…in line with charity figures, but a bit less some places and more in others (Whittington 34 out of 109 cases; Newham 17 out of 71 cases. Looked at Newham because of you Mole.)
Anyone else equally sad…or not…do check this link out. Food for thought pinkdove.
Jane
Hi Jane,
I think there may be more closet ‘sad ladies’ than let on. Absolutely fascinating site. I started to see if there was a north /south or urban/rural/divide.
Not conclusive yet but the differences are thought provoking, Highest incidence so far is Melrose Scotland 50% Wonder how we could find out why?
Trish
I’ve heard it said that people in Newham leave their cancers for longer before seeking treatment, this would explain why more are diagnosed at a later stage
Mole
Hi
I am going to come out here as sad accoutant who has made numbers her life’s work
. the numbers at individual hospitals aren not statistically significant, for instance whittington having 4 people with secondaries may be true, but its just part of the whole picture…you need numbers in at least 1000 -2000 before you start seeing a opicture that is considered statistically significant (a sampling of 5% of the population involved). The differences are impossible toaccount for at individual hospitals I would think - as there have been so many reorganistations in the NHS- this could account for alot of blips.
There is definitely a north south divide in mortality - people in south live a bit longer due to lower incidence of cancer and heart disease.
Cathy