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Article from today's Telegraph

65 REPLIES 65
Molennium
Member

Re: Article from today's Telegraph

The medics use the term 'early breast cancer' to refer to lumps under 2 cm or DCIS which have not spread to the lymph nodes i.e. stage 1 cancer. This can be found at any time with or without screening. My 'early breast cancer' was only diagnosed six months after I found the lump and was still 'early breast cancer'. It was low grade so spread is likely to be slower.

There's an awful lot of luck in it,

Mole

ForumMember
Member

Re: Article from today's Telegraph

Hi all, I have not read the telegraph article but I am so glad we have this site.

Before being diagnosed with early breast cancer (Aug 08), I was not aware that there were so many types of bc, stages grades etc., I am an information addict by nature, All knowledge is Power (who said that?) I feel that I have to learn as much about this crappy disease as possilbe. They say that early diagnosis of breast cancer means a good chance of responding to treatment. Interpreting the terminology used is very important when dealing with both the diagnoses and living with this disease. Despite the screening for bc in the UK being pathetic, I suppose too much info would deter some women coming forward for screening in the first place. However, if 50% of women diagnosed with early breast cancer go on to develop secondary disease, then I have to ask myself, how far have we come in terms of treating it?

I am aware of the statistics and lies thing, but based on this evidence it would appear that we have not moved forward in terms of treatment (still in the dark ages comes to mind). If a 'cure' cannot be found for bc then I feel that all efforts should be directed to preventing this disease from ever developing in the first place. Education Education Education (some politician said this, can't remember who). Never a true word when it comes to information on breast cancer I think. Strawberry Teas and Pink Days sound lovely on the surface, but sadly I feel that this tends to mask the reality of what is still a deadly disease and kills too many women each year.

Sorry for sounding off, or if I am sounding bitter, but in the early days of my diagnoses, I was comforted by terms such as 'early breast cancer' no spread etc., etc., etc., although I have not had a diagnoses of secondary disease as yet (fingers and everything crossed), I now tend to think in terms of when rather than if it will return.

love and hugs to all.

scarlet
Member

Re: Article from today's Telegraph

Hi Liz
I had wide spread dcis and lcis, the mastectomy was the only way of being sure that the cancer was gone, I had what my nurse called a 'busy boob'. All was dicovered when I had the lumpectomy. Originally , I had a mammogram, followed by a scan, then an aspiration of the tiny lump, which could be felt and a couple of core biopsies of the dark area showing up in the scan. It was the dark area that turnned out to be the cancer and the tiny lump was nothing. When they opened me up they discovered that the lump was 4cm and couldn't get a clear margin on that. All the different things added up and when the results all came back with the dcis and lcis it really was the only option. Funny I haven't gone over it for ages and somehow it does feel right writing it out, when I am feeling low and thinking about it all it doesn't seem to make as much sense. I know that I trusted the advice and treatment that I was given at the time, it's just dangerous when you start to compare on finding new things out about all this, don't you think? My onc always tells me not to go on the net!! ( I'm such a rebel!! ) I didn't have the node clearance, originally they said I would, but my onc said that Rads would sort it out so I had them treated when I had my rads, 25 sessions, on scar, armpit back and collar bone.
Any way I hope you are well, and thanks Jane, I think that you are right, and as mine was classed as a grade 2 I feel that I was lucky that it was found.

All the best
Scarlet. xx

ForumMember
Member

Re: Article from today's Telegraph

Scary thought that some people go through cancer treatment for an inert tumour but then they can't tell which ones if left untreated will not be harmful I guess.

Love Ali

lizziecee
Member

Re: Article from today's Telegraph

Brilliant explanation Jane, and most probably right. Thanks for your insight.
Liz.

JaneRA
Member

Re: Article from today's Telegraph

Not sure about the guru bit but here's a go at an answer.

Someone rightly pointed out earlier in this thread that there isn't one breast cancer but many breast cancerS. I think this is the key to what the Telegraph doctor may have been saying. Some doctors argue that there are many grade 1 tumours and low grade DCIS which if left untouched would not cause any ill effects or harm because they are almost benign and unlikely to spread. I've also seen it argued that one of the reasons for the apparent rise in numbers of diagnosed breast cancer cases is because so many more of these low grade cancers are being identified through more sophisticated screening. Some doctors would argue that such cancers may be 'over treated'. Its a controversial area but I guess this is what the doctor is talking about when he refers to biologically inert tumours.

Might be completely wrong! But food for thought.

Jane

lizziecee
Member

Re: Article from today's Telegraph

Hi Scarlet,

thanks for your response - it is so good to be able to come on here and talk to people who have bc, because nobody, even our nearest and dearest, can quite understand how we feel.

I was interested in your remark that you first had a lumpectomy with sampling (which is exactly what I had - they took 8 nodes, 3 cancerous) and 1/4 were affected. Did you mean 1 node out of 4 sampled were cancerous? If so, I am surprised that your doctors advised mastectomy, as I had 3 affected and still mastectomy was never mentioned, although chemo reared its' ugly head for the first time. I thought I was going to get away with just rads. I did have to have another surgery after the lumpectomy, for total axillary node removal, the aftermath of which was very painful. I can remember going into the bc clinic one day for a check up and I had my arm as if it was in a sling. My lovely, exceptionally supportive bc nurse Jacky said: "Liz, if you don't do those exercises I gave you, you will end up with a permanently bent and shortened arm". Quite frightened the life out of me. It sure made me "walk the wall" with my right arm, and everything is fine now.

I can't find the "profiles" section of this forum, so don't know what your history is. How big was your tumour? Perhaps this is the reason your doctors advised mastectomy.

I trust your doctors gave you their very best advice in advising a mastectomy, as I have to also believe mine did for a lumpectomy. Did you also have DCIS? I only found out I had associated DCIS from my pathology report, and guess it was not widespread otherwise they would have advised a mastectomy. As you so rightly said: "remember the pregnant women". Good advice.

Still waiting to hear from our gurus, JaneRA, Mole and ChristineMH re the biologically inert question.

Take care,
Liz.

scarlet
Member

Re: Article from today's Telegraph

hi liz
Thanks for your comments, it's all so complex and individual this carry on! I do remember my nurse and onc saying and stressing over and over again that no two breast cancers are the same. They used the analogy of a room full of pregnant women, all pregnant and all going to have a baby, but no pregnancy or baby will be the same - even in the same woman. This did and still helps me when I get all caught up in the 'ifs' and 'buts' of other peoples stories. I don't really regret having the mastectomy, I'm glad that I lived to tell the tale, but I wonder - sometimes - if there was any thing else or something else that could or should have been done. At my hospital they said that it was their policy to remove the breast when the cancer was that size, I had a lumpectomy first with sampling, 1/4 affected so they advised mastectomy, FEC and rads. Funny when I was diagnosed they said it was a very small and 'boring' little cancer, very average and not likley to cause problems. I really think that they don't know and most of what they advise and say is based on what has gone before - that's fair enough, but the further into this illness/journey that I get, more questions seem to come up.
I know that when my treatment was decided - and I did play a part in that - I had to not only make a decision to act on the advice that I was given but to also trust the advice and the team that were giving it. I did, but at the time I didn't understand the impact mentally of breast cancer. I don't know...I'm sure that I would do it again, but I just wish there had been another way.
I'm sure that you did what was right for you and that is what counts, remember the pregnant women, we are all different and all on our own journey, but thankfully we can be open and honest on here. Still waiting for someone to enlighten me with the biologically inert question.
All the best
Scarlet xx.

lizziecee
Member

Re: Article from today's Telegraph

Hi Scarlet - I worry about my past decision to gor for a lumpectomy, but for the opposite reason to you! I was offered either a WLE and radiotherapy, or a mastectomy. I chose the WLE and sample lymph node removal, figuring that if I needed a mastectomy I could always go back. Not that I knew anything about bc, lymph nodes etc. at that time. The bc nurse had to show me a diagram of where they were. I had 4/18 nodes positive, so ended up with FEC chemo as well as rx. Talk about being entirely naive. It was then a shock to find out from my pathology report, which I had to ask for, but freely given, that I also had DCIS, as well as a 2 cm invasive tumour,yet neither the surgeon nor Oncologist mentioned it to me, after my two surgeries. When I queried the surgeon if they had removed all the DCIS along with the tumour, he assured me he had.

I was quite happy with my decision until this past week, when my oldest friend's sister, who was dx 12 yrs ago, phoned to say her sister has the same kind of bc in her other breast. It was a rare type, with pus oozing from the nipple. She had a mastectomy and immediate recon. I think she was 45 yrs when dx. Then this week, my hairdresser told me she has cancer again, found at the 5 yrly mammo, in the same breast where she had a 6 cm tumour, but it is a different type. She is having a mastectomy 20 August. My hairdresser lost her mother, grandmother, 3 aunts and 2 sisters to bc, so obviously she has the inherited form. She said to me that she felt she made the right decision not to have a mastectomy initially, as being 48 when dx, retaining her breast was important to her self esteem. She is however, happy to have the mastectomy now.

These two instances have really made me wonder whether I made the right decision to go with a lumpectomy, but as my friend's sister had a right breast mastectomy, this has made no difference to another primary in the left breast, although I guess it may have prevented a recurrence in the right one. Neither my hairdresser nor my friend's sister (whom I know quite well but live some 300 miles from her) want to discuss their bc, and indeed I don't believe they even know what type they had. I do respect their wishes, but I am the kind that needs to understand my health problems, so I have to be very careful in what I say to them, as they seem frightened by knowledge.

I am 4 and a half yrs from dx, and hope I continue to do well, but being a realist, know there is always a possibility of a recurrence, or indeed metastases. I wish I knew the real stats on recurrence.

I wouldn't beat yourself up about your decision to have a mastectomy, you did what you thought was the best solution at the time.

Will be interested to see if any of our "gurus" can answer the "biologically inert" question! I've just looked "inert" up in the dictionary and it shows three definitions: 1: having no inherent ability to move or to resist motion. 2: inactive,lazy,sluggish. 3. having only a limited ability to react chemically, unreactive. I am no wiser! Does this mean less aggressive? Wish these medics would use words we lay folks can understand.

Take care,
Liz.

scarlet
Member

Re: Article from today's Telegraph

hi all
O.K I read the article in the Telegraph and like many of you agree with what has already been said. I also think that 'chronic' is not a term or word that I would use, on my own personal journey I have felt disfigured at best and close to death at worst. I do have a question though, does any one know what Chan meant when he said that some breast cancers were biologically inert? I think it may mean that they would not have impacted on the persons life had they not been detected...but how do they which ones are biologically inert?
When I find myself thinking, 'I wish it had never happened', I know in my heart that the 'it' I mean is the mastectomy. I , like many of you was not ill, I did have a tiny lump...which turned out to be nothing, but whilst checking that lump they found a 4cm tumor, buried deep in my boob, (and I'm only a 36A)!! I have had first class treatment and fantastic support but still at 2 in the morning the one thing I wonder is did I really need that mastectomy?
Sorry to harp on, I just wondered really.
All the best to you all
Scarlet xx

Julie49
Member

Re: Article from today's Telegraph

I'd like to second Silverlady's comments regarding the original article.
Obviously I'm grateful for the treatment I'm receiving - it's shrinking my tumour and as such could be said to be managing the disease, but not in a way that's comparable to the management of my chronic asthma.
The treatment is horrible (and it's still early days for me - just chemo so far, to be followed by surgery, radiation and tamoxifen) and much though I want a long life, I wasn't planning one like this.
Since chemo started in April I've carried on working but haven't been able to manage much else. There just haven't been enough good days. Replacing a disease with a treatment regime with such extreme side effects isn't what I'd describe as management.
Sorry for the moan!
J

JaneRA
Member

Re: Article from today's Telegraph

Thanks moderator. Look forward to getting a response from your statistics dept. I think the 50% figure is quoted in NICE guidelines on treating secondary breast cancer. If you consider the 50% figure to be unreliable then why do you include it on your website without a disclaimer or explanation?

While on the subject of stats: on your own stats page you quote a figure of 172,000 women living in the UK who have been diagnosed with breast cancer over the past 10 years. I know annual figures of breast cancer diagnosis are rising annually with around 44,000+ each year now, but that still sounds like quite a low figure left and rather a lot of women dead. What is the source of this 172,000 estimate?

best wishes

Jane

Moderator
Community Manager

Re: Article from today's Telegraph

Hi forum members

I am posting this on behalf of the secondary task force at Breast Cancer Care. Hopefully it clarifies the present situation on statistics for secondary breast cancer.

Best wishes

Joe

Moderator

Breast Cancer Care

It is frequently quoted that around 50% of women with operable primary breast cancer will go onto develop secondary breast cancer. Finding a reliable primary source of that statistic is problematic. From discussions we have had with clinicians in breast cancer, they tell us it is often referred to as ‘historical data’, which means information which is has been established some time ago in an old text book. We appreciate the frustration this adds to what we don’t know about secondary breast cancer, and are striving to improve the collection of data on secondary breast cancer. In response to your request we are contacting a statistics department to ask for their assistance and will post their response when we get it.

Dora

Secondary Taskforce

longden
Member

Re: Article from today's Telegraph

I certainly would like to see the wall as i see it taken down between primary breast cancer patients and those that have recurrence,secondarys.I had primary breast cancer and treatment for grade 3 lobular breast cancer,but i notice the tentative nature the possibility of it coming back is dealt with in a number of situations,publications.,even websites.There are so many boxes for every subject,which is understandable,but I personally see us all in one big box,and think things should be more open and accessible ,I am an information freak,the more info the better,never used to be but now know that this disease could come back any day and would rather be totally prepared and informed....i am .still scared,but i keep smiling and try to get on with my life,but am aware I could one day pop off this lovely earth as a result of it coming back.....am not a pessimist am a realist....,which is why i found the article patronising to tell us fear is stopping us getting on with our lives....Lo...xxxx

silverlady
Member

Re: Article from today's Telegraph

I'm sure modern treatments are better than anything available to previous generations, but that doesn't mean modern treatments are perfect by a long shot! Cancer treatment still consists of cutting, burning and poisoning our bodies in the hopes that the cancer will die while we survive.

Elsewhere I've heard the claim that secondaries will be treated like a chronic illness, like diabetes (the diabetes comparison was theirs, not mine). I'll be lucky to manage another five years of increasingly desperate attempts at treatment and irreversible physical decline. If "management" is the best they can offer me, then dragging it out for 20 years isn't so appealing really.

Sorry Doc, I don't want to be managed as a chronic patient and I can't get excited about the notion. Come back when you've found a cure, THEN I'll get excited.

JaneRA
Member

Re: Article from today's Telegraph

Some doctors would call Stage 1 and 2 'early' stage breast cancer. I was daignosed at stage 3 (locally advanced) and I think more attention should be given to stage 3ers...most of whom I suspect end up being stage 4 (which I now am..the 'good' end as my onc says.)

NICE is currently drawing up new guidelines for bc treatment and interestingly it intends to have two lots of guidelines: one for 'early' breast cancer ie. stage 1 and stage 2, and one for advanced breast cancer, incorporating stage 3 and stage 4. I used to think this was was rather odd, but since I have got my own regional recurrence (at stage 4 but not secondary..) I am inclined to think the distinction is the right one clinically.

Jane

Fuschia
Member

Re: Article from today's Telegraph

Early stage breast cancer is when it is confined to the breast and the axillary nodes. Not sure what the phrase 'primary breast cancer' means, 'primary' to me means where the cancer starts. Sometimes people have cancer where there is no detectable primary.

F
xxx

mousy
Member

Re: Article from today's Telegraph

And is "early breast cancer" the same as "primary breast cancer" or is it merely a subset of it. How early is early?

mousy

JaneRA
Member

Re: Article from today's Telegraph

Thank you Lucy for posting a response on behalf of the Secondary taskforce.

It really annoys me when criticisms and differences of opinion are responded to with an apology about 'upsetting' Forum members. Being 'upset' is not the point...those of us who objected to the position taken by BCC in the Daily Telegraph article were commenting on the position and policy of the organisation and its failure to honestly explain survival statistics. Yes some of us felt angry and would like the specific points we made about the article clearly and directly addressed.

Perahps the Secondary Taskforce spokesperson could confirm that yes 50% of those diagnosed with early breast cancer go on to develop secondary breast cancer. If this is not the case then please let us know.

I have just browsed the 16 page Press Pack for breaat cancer awareness month in October and I see there is not a specific mention of secondary breast cancer. The pack has quotes from men and women with primary breast cancer, a piece about Headstrong and the Younger Womens initiatives, plenty about that old favourite the Fashion Show, but nothing about the Secondary Taskforce (apologies if I've missed it in my quick scroll through.). This lack hardly instills confidence that BCC really does want more attention focused on issues relevant to those living with Stage 4 breast cancer.

Jane

Molennium
Member

Re: Article from today's Telegraph

As well as collecting data on who has secondary breast cancer I would like them to collect data on time from diagnosis of secondary breast cancer to death from secondary breast cancer so we can all know how treatments are working and what effect they have on lengthening life. I'd also like to see more on quality of life issues - I don't know why surgeons are so insensitive to the effects cancer treatments have on patients but they certainly don't seem to have much of a clue.

Mole

mitch2
Member

Re: Article from today's Telegraph

The article also did not take any account of the trauma of having breast cancer. We do not just go to the hospital, get a few drugs, then it is over.
Also it should have said "some" breast cancers are chronic. Not all breast cancers are the same, as some of you have already mentioned.

David

Moderator
Community Manager

Re: Article from today's Telegraph

Hello forum members

I am posting this on behalf of the secondary taskforce team at Breast Cancer Care

Best wishes

Lucy

Moderator

Thank-you for sharing your views on this article. We really appreciate the opinions and issues of as wide a range as possible of people with breast cancer to inform the work we do with the media. We are extremely sorry that the piece in the Daily Telegraph on Monday 23 July has upset a number of Forum members.

When asked to provide a comment for this already commissioned piece we ensured we made the dangers of labelling all breast cancer as a ‘chronic disease’ clear which is reflected in the final quote by our clinical nurse specialist in the penultimate paragraph.

We are extremely aware of the lack of attention that secondary breast cancer receives from the media and are working hard to address this both around BCAM and throughout the year. One of the current priorities of Breast Cancer Care’s Secondary Taskforce is to highlight the lack of accurate information about the number of people in the UK with secondary breast cancer as we don’t currently know. The charity is campaigning for all cancer registries to urgently collect this information, in order to help with the appropriate planning of services within all hospitals and we are planning much more public-facing work on the issue.

Anyone who is interested in finding out more about the Taskforce should email

devagirl
Member

Re: Article from today's Telegraph

I so agree with Catkin

altho my prognosis was good, since I was dx 11 months ago I have had a massive haematoma after the op which had to be packed daily for 6 months and now i have oedema which is driving me mad. I too have lost the "carefree assurance" that I took for granted..have just returned from holiday and altho i enjoyed most of it, quite often i was overcome with despair at it all. I am now 52 and I wonder if I will see 53, my daughters graduation, another holiday. If I do, will I see 60, my daughters marriage or grandchildren? I do try to be positive most of the time and I suppose articles like this would bouy me up on the surface but the truth is there when you lie awake at 2am, I'm afraid.

Incidentally, I have pretty bad asthma, which is deemed to be chronic, but have never had a sleepless night worrying about whether I will survive it, thats for sure. To me, it is ludicrous to call thois disease "chronic" - I only wish it was.

Laine

margaretw
Member

Re: Article from today's Telegraph

For those with an interest in stats, the government released some official ones yesterday - http://www.statistics.gov.uk/pdfdir/ukcan0707.pdf

Margaret

Molennium
Member

Re: Article from today's Telegraph

I wrote yesterday to Mr Robert Carpenter giving my views of a couple of articles he's been quoted in which have appeared in the Telegraph recently - I think he must be wanting to publicise the work he's doing at Barts. I haven't had a reply from him - don't expect to really as he's obviously jolly happy doing lots of surgery with no likelihood of stopping giving the huge increase in breast cancer diagnosis over the past ten years.

Mole

belinda
Member

Re: Article from today's Telegraph

Thank you Cecelia, I would be interested to hear his response if you do hear back from Dr Chan.
Jennywren has also asked BCC for their views (in this thread).

lizziecee
Member

Re: Article from today's Telegraph

JaneRA

Sincere thanks for your post and support. I am a long time member of the National Association for Colitis & Crohn's from whom I have received a lot of information and help. Their press officer rang me this week to ask if I will do an interview with our local paper on the difficulties in living with Crohn's. She mentioned a new forum on their website, directed at young people 16-29 yrs. It is called IBDandME, which they are trying to promote. If your friend's son is interested he can join the forum by filling out a simple form on their website. You don't have to be a member of NACC to do this. The URL is: www.nacc.org.uk They also have a Smiley's People organisation, with branches throughout England, which gets kids together socially and does a lot of fundraising for research into Crohn's. NACC costs £10 pa to join, and for this we get regular newsletters and a "Can't Wait" card for us to use in shops, bars, restaurants, etc. when we can't find a public toilet. It has been invaluable to me on occasions, and I have never been refused the use of employee toilets. I even get upgraded on long haul flights, as I need an aisle seat near the toilet, and often this type of seat is not available at check-in.
I hope your friend's son's Crohn's is not intractable - some patients only get one or two inflammatory episodes, others like me, unfortunately get flares very regularly.
Liz.

catkin19
Member

Re: Article from today's Telegraph

i have what is considered a good prognosis, technically i'm "cured"...............and i'm still terrified. i'm only 50 and i don't want to be chronically ill, or die. the only way i can keep the fear at bay is to think, well, i *am* going to die........but not today. i'm having to work really hard to feel in any way "positive"................i don't like the physical changes, feeling tired and miserable and overweight................i've gone back to work to try and grab at some sense of normality, but it's been so hard that i've several times been on the verge of giving up.........however, one of my friends was in hospital last year with a flare-up of inflammatory bowel disease, we were in and out of the same hospital like Cox and Box and spent the summer visiting each other in different wards. it put things a bit in perspective for me, she was terribly ill and at one point nearly died..................and although having BC was awful i was inundated with support, which just wasn't there for her. let's face it, having any kind of illness is bloody awful, painful, frustrating, distressing and frightening.....................and we're all on that moving pavement and one day will have to step off, but if you think about it too much you just go mad. i took my health for granted most of my life....................that carefree assurance is gone now for ever, i can't bound about like i used to..........but i can still do most of the things i enjoy, i just have to do them more slowly and less often!............

CeceliaL
Member

Re: Article from today's Telegraph

Hi Liz and Jane RA

I do apologise from the bottom of my heart for any upset I caused by mentioning Crohns as a comparison to breast cancer in the discussion re. chronic illness. I am obviously ill informed on the subject, I have a friend who has it but has got it very much under control so I am not qualified to talk about it.

Again, sincere apologies

Cecelia. x

JaneRA
Member

Re: Article from today's Telegraph

Hi Liz

I thought of you when I saw the earlier post about Crohns and wanted to say something about the unfortunate comparison. Thanks so much for your informative and forthright post. You are absolutely right. I was at a party last Sunday and talking to a woman whose 15 year old son has Crohns. His life is heavily restricted and miserable..he is struggling to come to terms with this awful disease at an age when he should be enjoying his youth and freedom.

Jane

lizziecee
Member

Re: Article from today's Telegraph

Cecelial - I was upset by your remark " chronic disease could be considered Crohn's or something relatively controllable", sounded very dismissive. Do you have any idea how difficult it is to "control" it? I would guess not, unless you know someone who has had 37 yrs of intractable Crohn's. That seemed a rather patronising remark to some of us who have breast cancer and Crohn's. Do you actually know anyone with Crohn's, and have listened to their problems? I know it is still a taboo subject in England - nobody wants to hear about bowel problems. Cancer, in whatever form, is a relatively easy subject to discuss compared to IBD.

I got Crohn's at 24 yrs of age, very frightening when you only weigh 5 stones, and have diarrohea 20 times a day, and consequent severe malnutrition, with a tube in your stomach to get essential nutrition. I was given a 50% chance of coming through the laparotomy and my parents drove some 500 miles through the night the day after I was operated on. The early meds of steroids, over some 30 yrs, have played havoc with my bones and I am now on weekly self injected chemo to put my Crohn's into temporary remission, as well as bisphosphonates and Calcichew/Vit D tablets to strengthen my bones.None of these meds are without serious side effect.s.

This is not like asthma, (with all due respect to quackers) where known drugs can control the situation, but a trial and error complex problem. My gastro said I have "empirical problems", which I had to look up in the dictionary as I didn't understand what he said. Hubby said: "he doesn't know what to do, is flying by the seat of his pants". Luckily I am married to a bright man. However, there is some hope on the not too distant horizon - medics in the US are already doing leukapharesis for Crohn's as well as stem cell transplants - they found recently, quite by accident, that autologous stem cell transplants given to patients for leukaemia CURED their Crohn's - not ammeliorated it, or put it into remission., but cured. Music to my ears. So this is an exciting developement for me.

To me, my long term Crohn's problems are no different than being dx with mets from bc. My bone marrow is in a mess,with enlarged red cells, my haemoglobin too low but my current treatment is to continue with cytotoxic methotrexate.because there is nothing else available. At least with bc, there are numerous alternatives meds.. My gastro said two weeks ago: "Liz, you have to decide whether you want quality or quantity of life. How do I choose? My breast cancer surgeon said to me 4 years ago, when dx with bc: "You will most probably die of Crohn's than bc". I think that puts my bc disease in perspective. I now have a recently found stricture of my small intestine and my gastro says it is life threatening if it bursts. I am currently having tests to see how far the narrowing has become, and dreading each mouthful of food I take.

I have found dealing with Crohn's so much more difficult than breast cancer - and I had 4 months of hospital prescribed Frutijuice, not one morsel of solid foods, when on FEC chemo.

There is so much knowledge around about bc, but very little about Crohn's, which is still classified as an orphan disease by the National Institutes of Health in the US. My gasto said that people like me, with panCrohn's Colitis (ulcers and crypt abscesses through the whole gastro tract, from mouth to anus) according to a Mayo Clinic survey have as diminished quality of life as stage IV terminal cancer patients. I live with the constant fear of recurrent severe rectal haemorrhages (have been hospitalised more times than I can remember with these), live daily with constant diarrhoea and abdominal pain, and that my stricture will burst. So, tell me please, how much more difficult it is to live with breast cancer? I have to live with both. I know breast cancer kills daily, but so does Crohn's, although in less than significant numbers. The numbers do not mean that we are not at as much risk of dying a dreadful death from bleeding, as bc patients with mets. We probably don't even get onto any stats.

Quackers - I am with you - if I die from Crohn's, which I probably will, the fact that I had invasive breast cancer, with local spread to my nodes, will count for nothing in the statistics.

Mole - I was actually seen on a Saturday morning in my breast care centre in Plymouth - for suspected IBC, which turned out to be Mondor's disease. Really surprised at such good treatment, and I think I live in the back of beyond here in Cornwall.

Sorry for the rant - but I don't know anyone I can talk to positively about bc and Crohn's - I met a lovely young Scottish woman 35 yrs old on an American Crohn's site, 4 yrs ago - she went onto get a pancreatic tumour and died this past February. Crohn's is an insidious disease that no-one wants to know about.

Liz.

CeceliaL
Member

Re: Article from today's Telegraph

Dear All

I was really interested to read all the responses to this article, and I'm going to see what I can do about passing the thread along to Dr Chan.

Wishing you all the very best.

Cecelia. x

chalee
Member

Re: Article from today's Telegraph

I find the honesty of the comments on this thread extremely refreshing. So often I've held back from discussing scary topics which have bothered me for fear of upsetting other forum users. It's a huge relief to know so many of you can acknowledge that it is important to be able to tell it like it is.

Would anyone know how to email this entire thread to Dr Chan? I would like to read his comments.

funnyface
Community Champion

Re: Article from today's Telegraph

No one should ever have to feel guilty of living with fear. Fear is real!! I don't think anyone can say they are cured of this disease. How do you know you are until your dead and it hasn't come back. Many women are dx with mets years later, when they thought they were cured. A chronic illness!! If it is a chronic illness then why are we labeled terminal? Funnyface

longden
Member

Re: Article from today's Telegraph

Only somebody who has never experienced the shock of a cancer diagnosis can say that we are not getting on with our lives because of fear.Its a bloody scary thing,and although thank God,the treatment is so much better than in days gone by,this disease is still a killer.Im not going to feel guilty about being scared,I am scared.....but I am getting on with my life as best as I can.....found some of the comments in the article patronising ,and i refuse to feel guilty for having feelings of fear L.

JaneRA
Member

Re: Article from today's Telegraph

Another statistic:

10% of newly diagnosed breast cancer patients are diagnosed at Stage 4. (so roughly 4400 in the UK each year.)

Jane

belinda
Member

Re: Article from today's Telegraph

For Holeybones, yes exactly, it would make a significant difference.

Jennywren
Member

Re: Article from today's Telegraph

BCC:

It would be great if we could hear your point of view regarding this discussion, the newspaper article and the stats cited in ''New voice for advanced breast cancer patients.''

Jenny.

Holeybones
Member

Re: Article from today's Telegraph

Had a thought, if "it is estimated that about half of people with EARLY stage breast cancer will go on to develop the advanced stage of the disease" then that means those diagnosed immediately at Stage 4 are added on top?

Definitely sounds more of a killer disease than a chronic one!

Holey.

Holeybones
Member

Re: Article from today's Telegraph

Thanks Belinda, I've now found it and also the original source of the statistic which was:

"NICE. Guidance on the use of trastuzumab for the treatment of advanced breast cancer. March 2002"

So it has been known for about 5 years but BCC has done little to publicise it? Why? Shouldn't it be pointed out at least once a year?

Holey

Fuschia
Member

Re: Article from today's Telegraph

Does anyone get The Telegraph, has there been any responses in the Letters page to the article?

quackers
Member

Re: Article from today's Telegraph

I too was extremely frustrated over this article, has anything we have said in these pages and BCC questionnaires been read and noted, sadly this is the latest of a long line of press releases full of meaningless and contradictory statistics which doesn't appear to bear any resemblance to my disease.

I was diagnosed at 46 with primary grade 3 triple negative and 11 months later with secondary breast cancer to my bones, a local recurrence 18 months ago and a 2nd local recurrence in the last month, despite all this if I can hang on until the 7th November this year I will be a success statistic having survived 5 years and will be part of the 80%, of course I am already part of the unsuccessful 50% that developed advanced stage of the disease. I also suffer from another "chronic" disease, asthma, if I was to die during an asthma attack (a situation that happens to 4 people every day in the UK) then of course I could be considered to have been cured of BC having died of something else.

Statistics can be made to suit every occasion and viewpoint but I feel that the representatives of BCC should check their data and at least use the same percentages as they print on this website, unless of course they are the inaccurate ones.

belinda
Member

Re: Article from today's Telegraph

Hi Holeybones, if you go to the homepage, click on Breast Cancer News, then go to page 3.
''New voice for advanced breast cancer patients.'' Release 8.05.06
Here's the actual text..
Whilst the number of people currently living with secondary breast cancer in the UK is not recorded it is estimated that about half of people with early stage breast cancer will go on to develop the advanced stage of the disease

Holeybones
Member

Re: Article from today's Telegraph

Unfortunately, despite Belinda's instructions, I couldn't find on this website, the statistic that 50% of breast cancer patients eventually dying of their disease. Perhaps the moderator can give us a hyperlink? While I know the statistic is correct (because it was quoted by NICE a few years ago) I can't be sure of accurately phrasing it.

I think it should also be added to to the Statistics and Facts section, because there is little point in giving out incomplete information.

So, if 50% eventually die from breast cancer, how can an oncologist (see an earlier post) say that the majority survive? Unless we are back to 5 year survival statistics again of course (but so many health professionals fail to finish their sentence with saying it is a 5 year statistic. Neither do they mention you only have to be alive to count, rather than alive and well. I'm yet another who contributed to the improving 5 year statistic but isn't well (at Stage 4).

There are too many half truths given out in order to keep patients "uplifted" and "positive". However, many need to make important decisions and arrangements post diagnosis and being kept ignorant is not helpful. Breast cancer is increasingly hitting women with young children (a mixture of it affecting more young women and also women delaying having children) who need to know the bald facts so they can make arrangements for their children.

People also need to be made aware of how exactly women die from breast cancer and BCC is not very effective in putting this across. A Secondaries Taskforce has been in place for over a year but no sign of it generating much publicity. Most members of the public think the worst that can happen to you is a mastectomy or losing your hair and BCC should be educating them otherwise. I suffered neither a mastectomy nor much hair loss during my primary treatment and found that most people felt I had a milder somewhat trivial form of the disease. Even now when I'm Stage 4 and terminal, people look at me in disbelief and say things like "But you look so well". Others pat me on the hand and say "They can do wonderful things these days".

Sometimes I want to SCREAM!

Molennium
Member

Re: Article from today's Telegraph

Just to let you know the telegraph article is three pages long and you can read the lot if you go to

http://www.telegraph.co.uk/health/main.jhtml?xml=/health/2007/07/23/hbreast123.xml&page=1

I do find it very patronising. I was treated at Barts and they have the idea that they can help you pick up the threads of your life. Personally i couldn't discharge myself fast enough given the length of time hanging round waiting way past my appointment time.

I'd also like to ask Chan why they take off the breasts of women with cancers that are completely inert and won't ever kill them. Could it be that they need to get their act together in research terms to stop the unnecessary surgery, or would it put surgeons and doctors and nurses out of work?

I'm sure they'd find other bits to operate on as they do in the United States.

Mole

Molennium
Member

Re: Article from today's Telegraph

As far as I am concerned, treatments for breast cancer however mild stink. The best treatment is surgery. I didn't want to have part of my breast cut off. I still think I look mutilated and my operation was partial mastectomy in Dec 2003.

I also absolutely loathe hospitals which are now dirty and run as far as I can tell entirely for the benefit of their staff at least if you are of working age and want to continue working. They don't hold appointments on time, out of normal working hours or at weekends. Unless of course you stump up for private medicine or live in a nice posh area, preferably outside London.

They'd have to do a lot better than they do now for me to be happy about having my particular chronic disease. Also you have to give false optimism all the time.

One book I read said you don't have to worry about cancer now because about half of people who get it survive it for more than five years. How fantastic. Whilst that was talking about all cancers and breast cancer takes longer to run its course than most, I don't think that's particularly reassuring. I wrote to the publishers of this particular book but got no reply. It's called Cancer at your fingertips I believe. I'd rather not have it at my fingertips, in fact I'd rather not touch it with a barge pole.

Mole

JaneRA
Member

Re: Article from today's Telegraph

Well I'm all for hard facts and the figure tucked away in Breast Cancer News is that half of women with early breast cancer will go on to develop advanced disease.

I've reread this article several times since it appeared and each time feel renewed friustration. I agree that media headlines about 'killer disaeses' are unhelpful. I also don't like 'Pink October' and the commercialisation of cancer with goes with big corporate breast cancer charities running strawberry tea bonanzas and fashion shows of happy survivors. But I'm fed up with spokespersons from charities and random doctors pretending to speak for women with breast cancer. We have our own, very diverse voices.

I don't like the patronising tone of the BCC spokeswoman who implies that women aren't 'getting on with their lives' for 'fear' of recurrence of breast cancere. I am not ashamed of my fear. I'll tell you what I'm frightened of. I'm frightened that i'm going to die sometime not too far away..perhaps before I'm 60..when I'd rather set my hopes on 85. I'm scared my disease (now a regional recurrence) is going to progress into other parts of my body. I'm scared I'm going to be tired and unwell for the rest of my life, as I try one treatment after another. I'm scared I'm going to become very ill, in pain, be dependent and a have a drawn out and unpleasant death. I make no apology for being frightened.

I also live with hope...hope that the good luck I've had this far...getting 3.5 years from initial diagnosis with 'not very chronic' cancer will continue..hope that I'll continue to have sunny happy days and laughter, hope that the process of dying with this disaese might indeed be delayed or halted...hope even that 'death may not be the worse thing.' Fear has walked alongside me for a while now..some days and weeks its very prominant..as at the moment as at the end of the 13th cycle of chemo I've endured...I wait to know in a few weeks if its worked at all. Some days and weeks the fear is just a shadowy companion and cancer isn't quite real in my life. But don't belittle my fear, or any woman's fear who's had cancer.

Breast cancer wasn't a central part of my life when I was diagnosed at the very average post menopausal age of 53. None in my family but like any woman I knew women who'd had breast cancer and I've just written down the names of those women and what happened to them. In October 2003 I knew 12 women who had breast cancer. 'Knew' in the sense that they were either friends, or the mothers of friends, or very close friends of my very close friends. A broader sweep of my aquainatances would have doubled or trebled that number. And I've not included Ruth Picaride whose Observer colums I knew well...she survived about a year after diagnosis and died in her early 30s.

So what of the 12 I knew?:

4 had died ( 2 of the mothers aged approx 60 and 72 and two of the friends of friends. (age 45 and 50ish)

2 had secondaries and have since died (freinds, both aged 50ish)

1 had primary bc and she's dead too (friend aged 40)

5 of those women still live: 3 have had a second primary..including one of the mothers now in her late 70s, 20 plus years after intial diagnosis..only this time aggressive her2 and is been a struggle to get herceptin becasue she's 70+)

1 woman has lived 18 years since her original diagnosi (5 since regional recurrence)

I woman remains out of the 12. still in remission, about 10 years after diagnosis.

Another interesting thing about my 12 friends is that 10 of them survived over 5 years and so they all appaear in the triumphant 80%+ plus survival statistics.

This is all anecdote...just a story of my freinds with breast cancer at the time of my diagnosis. I bet though that if you try a similar exercise you'll get similar results.

I am not in the biisness of frightening people but I am weary of the myths and metaphors and half truths and damn lies and statistics, and the cheery fluff, which obscure the living truth and tragedies and reality of this disaese...a nasty diasese among other nasty and nastier diseases of the 21st century.

Jane
Jane

belinda
Member

Re: Article from today's Telegraph

Another 40 something who's hopping mad.
Like Jenny I have often decided not to post hard facts but am also dismayed to see BCC comments in this newspaper article. Page 2 of the article mentions 70-80% will survive. If anyone wants to know the truer picture it's tucked away here on this website. (I won't post it here.) On the homepage click on ''Breast Cancer News'', scroll down to page 3 of News Releases for 'New voice for advanced breast care patients.'
70-80% is a stat so often used and quoted but the stat is including women like myself and Jenny, yes still alive but with metastases.

Jennywren
Member

Re: Article from today's Telegraph

Also hopping mad. Not glad to see comments from BCC endorsing this article. I would be delighted to be considered 'chronic' but my hospital still classify me as 'terminal'. I was diagnosed stage IV from the beginning, two years ago last Friday. I can't tell you the number of women I have known, met, who used this board, during the last two years, who are now dead, the most recent being only last week. Many of us do not post the reality of this disease here for fear of scaring the newly diagnosed. There may be many new treatments in the pipeline but they are not emerging quickly enough for many of us. You're likelihood of developing secondaries is not linked to age, hormone status or any of the other factors mentioned here. I know women with every history quoted who all have 'terminal' breast cancer.

So I believe down-grading breast cancer to the status of chronic is extremely premature, and though I would love it to be the truth, it just is not so.

Hoping (but doubting) to see my 50th birthday.

Jenny
(aged 47).

Jeannie
Member

Re: Article from today's Telegraph

Taking the positive side of Mr Chan’s comments, I feel that we should recognise that treatments are getting better. This is very helpful to our psyche. Yes, our perceptions of cancer have been formed by our mother’s generation and that most women over 45 – 50 still perceive breast cancer as a potential killer. But it is treatable. The general public needs to be educated to this in order to dispel the damaging perception that breast cancer spells instant doom, because it doesn’t.

Most of us know that approximately 43,000 women will get breast cancer yearly and approximately 35 women a day die from breast cancer. However, I only knew the figures after being diagnosed with the disease. Prior to that I had no idea. I don’t think I am alone in not knowing this.

Therefore if I put myself back into my “thought mode” before having the disease I did not know that so many ‘young’ women (ie under age 50) got BC and I most certainly did not know the death rates. I also did not know that approx 8,000 younger women would get breast cancer because my GP told me it was rare in women under 50. This again is how most of the general public have been educated in seeing breast cancer – a disease for the over 50s. I now know differently. Some younger women are still finding early diagnosis difficult to get addressed – I know this from my own campaign efforts.

To consider down-grading breast cancer to a chronic disease from a killer disease would undermine the perception of the seriousness of breast cancer and would be a catastrophic move. What we need to be aware of, and most of women with breast cancer are, is that treatments are getting better and women are living longer but we are not at a stage where we should alter the view of it by the general public with headlines down-grading breast cancer on a scale from killer to chronic.

Regards to all.

Jeannie