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).
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
For those with an interest in stats, the government released some official ones yesterday - statistics.gov.uk/pdfdir/ukcan0707.pdf
Margaret
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
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 <script type=“text/javascript”>eval(unescape(‘%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%73%65%63%6f%6e%64%61%72%79%74%61%73%6b%66%6f%72%63%65%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%22%3e%73%65%63%6f%6e%64%61%72%79%74%61%73%6b%66%6f%72%63%65%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script>
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
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
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
And is “early breast cancer” the same as “primary breast cancer” or is it merely a subset of it. How early is early?
mousy
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
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
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.
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
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
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
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
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
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.
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.
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.