DCIS Incidence
DCIS Incidence Not sure whether this is the most appropriate section to post this - spoilt for choice.
I have often wondered whether the 41000 new cases of breast cancer per year which is frequently quoted includes DCIS.
I asked this question of Cancer Research UK and they have told me that DCIS isn’t included in the 41,000. DCIS (only) incidence is approximately 3,000 per year.
That’s interesting, Daphne When I had my first cancer 7 years ago, the incidence rate was given as 35000 cases a year. When I found the new figure this year after my recurrence I too wondered whether it included DCIS. A rise of 6000 cases a year in 7 years, excluding DCIS, seems truly frightening. In other fields we’d be calling it an epidemic.
I suppose some of it due to ever-rising life expectancy, particularly for women. The more older women there are, the more breast cancer will be diagnosed every year. I think that because the great majority of users of these forums are under 60, we forget that the great majority of cases are in older women.
Kathy
Glad to have found another name she recognises from the old site.
whether figs include DCIS or not I’d be surprised if the 41,000 figure given for cases of breast cancer diagnosed in 2003 excludes DCIS as most doctors treat it as if it is breast cancer.
I find it strange that the incidence of breast cancer has doubled since 1977 - is this because a lot of very small low grade cancers are now being diagnosed that years ago would have been missed, they were not likely to kill people anyway.
My theory is the breast surgeons need the work. In the old days they did mastectomies on all 20,000 women diagnosed. Now they do about mastectomies about 50% of the time, thus they are still performing about 20,000 mastectomies a year. Or am I being unduly cynical?
Mole
Totally off topic But dont know how to deal with it! Very very glad to see you here Mole and Daphne (you too Kathy but I’m not sure if I “know” you… all these new user names GRRRR!)
i hope you both held onto my email addy before the contact buttons went awol as I would hate to lose touch with the most impressive bc mine of information and the equally impressive “campaigner”.
I doubt if I will be posting too much here, although I am very open to change, I am finding it a tad confusing and very hard to read the script with running eyes because of a lack of lashes!
Holler loudly if you need me for anything!
Joan XS
Breakthrough Research conference Back on topic: don’t know about the DCIS figures but think Daphne is probably right.
I also think that one of the reasons for increased numbers of breast cancer diagnoses is the increase in early diagnosis of relatively unaggressive cancers.
Daphne and I were at a Breakthrough Research workshop on Monday. At that workshop someone from the Royal Marsden raised issues about the ‘myth of early detection’ (a subject in itself for another thread) and then in a group Daphne was in talked about research on the ‘natural history’ of DCIS. Daphne…you and I had a brief conversation about this…it would be good to hear more.
Jane
More on DCIS stats Hi Mole, here’s an extract of the email I had from Cancer Research UK
“In your e-mail, you specifically asked about breast cancer incidence figures.  As you correctly stated, around 41,000 new cases of breast cancer are diagnosed every year in the UK. This figure does not include cases of ductal carcinoma in situ (DCIS). Approximately 3,000 cases of DCIS are detected annually in England.”
Interesting that the 41000 is UK, but the 3000 DCIS is just England.
I think we are long overdue an explanation as to why incidence is so high. According to the Office of National statistics, breast cancer incidence has increased by 80% in England between 1971 and 2003 and by 16% in the 10 years to 2003.
OK people living longer and having fewer or no kids is a common explanation of the increased risk of breast cancer, but
It’s not like lots of people were dying below the age of 60 in the 20 - 30 years before 1971 so they didn’t live long enough to get cancer, nor were lots of people breeding like rabbits in the 40s, 50s and 60s (well they certainly weren’t in my family - low libido, sussed out contraception, infertile or representative of many families?) so they were exposed to less oestrogen in their lifetime. Anyway oestrogen makes normal and cancerous breast cells grow, it doesn’t (as far as I’m aware) cause the DNA mutations that create a cancer cell.
It’s all very good the stuff that’s publicised about improved survival rates, but I’d like to see improvements in incidence rates as well.
Joan - nice to find you on here as well. It’s a bit like trying to locate people in fog at the moment.
Can you tell us more, Jane and Daphne? The conference sounded very interesting when you told us about it and it must have covered a number of current issues and hot topics.
Kathy
PS Haven’t changed my name, Joan, still KathyF. New site plus new names is confusing us all.
Research, incidence, etc One of the reasons for increased incidence is usually stated as the effect of the national screening programme, as Jane says, picking up cancer earlier than it would otherwise be found. (which assumes that without screening, many people would have breast cancer, but die of something else before it was ever diagnosed - not sure I agree that has made much of a difference to incidence rates)
I’m just looking at my Office of National statistics incidence graph for England and what it shows is that incidence in 1971 was approximately 66 per 100,000 and had steadily risen to approximately 85 per 100,000 by 1988 when the screening programme was introduced so incidence rates didn’t remain flat from 1971 in the run up to the screening programme. If they had, I wonder if the screening programme would have been introduced. In 2003, it had risen to 120 per 100,000. (Caveat with the 1971 and 1988 figures is that I’m reading it off a graph which just shows an approximation)
The ONS says “earlier detection and improved treatment has meant that survival rates have risen”
But, do we have a common definition of what “earlier detection” means? To me it means it hasn’t spread to lymph nodes.
For those wondering about the Natural History of breast cancer, studying it means that when you find Carcinoma in Situ, you don’t treat it but leave it and observe what happens and whether and how it develops into invasive cancer. (assuming you identify enough people who are content to have it in their bodies and leave it)
The Research conference was organised by Breakthrough Breast Cancer and gathered together about 60 people representing academics/researchers, people affected by breast cancer, the charity to prioritise Breakthrough’s research strategy over the next 10 years. It was a bit strange because a lot of the time was spent discussing funding mechanisms, and funding awards not that much on reaching a consenus as to what research Breakthrough should actually be carrying out. But all credit to Breakthrough for involving patients in the policy making.
Stats and DCIS -Nice to see you back posting Daphne, you are always a wealth of information that we never seem to get from our doctors.
What about those of us dx with invasive ductal and DCIS?
If I hadn’t asked for my path report after the WLE and total axillary removal, I guess I would never have known. Neither the surgeon nor Oncologist told me I also had widespread DCIS, both comedo and cribriform, which I never had an opportunity ask about. The Onc and I had a really big row over whether it is cancer or not. I was of the opinion that when the term carcinoma was used, even though in situ, it is still cancer - he violently disagreed, I ended up in tears and got a new Onc who was a lot more receptive to my valid questions. Just wonder what the stats actually do include.
Liz.
Hi Liz Nice to see you back as well. Like you, I had invasive carcinoma and DCIS so I guess we are in the cancer incidence stats, not the DCIS incidence stats.
Like you I think that carcinoma is cancer, whether it’s in situ or not, though if it never becomes invasive, it’s not life threatening. I’ve been reading Dr Susan Love’s book recently and she regards DCIS as precancer, not actual cancer.
I’ve had further thoughts about Mole’s point on work for surgeons. If you think about it, ironically they probably have more work since breast conservation became commonplace because there are plenty of people like me who have breast conservation surgery first and then a mastectomy as the cancer & DCIS is more widespread than thought. In the old days, we’d have gone straight to mastectomy.
Daphne
DCIS I had invasive cancer as well as focal DCIS, and yes I was told I’d need a mastectomy if the segmental mastectomy didn’t come out with clear margins. I’d already had the lump (supposedly benign) out so I had two surgeries. The old way was to do the pathology while you were under anaesthetic and whip off your breast, you were expected to consent to either operation before knowing if it was cancer or not. It was only because women rebelled and refused surgery that any randomised controlled trials were done, and lots of surgeons operating today opposed them (e.g. Michael Baum). He now apologises for this, but only because the results showed that mastectomy was slightly less effective than quadrantectomy (the alternative trialled).
What to do about DCIS is highly controversial as the current treatment is based on a very small trial of a few women whose DCIS was wrongly diagnosed and who went on to get breast cancer subsequently. I think there were around 480 women whose cases were checked after they got breast cancer. All these would have been women with low grade DCIS but only about 30% of them went on to get DCIS which would suggest that in the case of low grade DCIS maybe 70% of mastectomies are unnecessary.
Mole
Hi all Just thought I’d add a little snippet.
When my aunt was diagnosed, she was told she had intraductal carcinoma, which is the same as dcis apparantly. I’m not quite sure exactly what stage hers was at because she’d left it a year before going to see the doctor (she was 40 years old). She had chemo, mastectomy, radiotherapy and tamoxifen for five years. She was given the all clear, but within months of stopping the tamoxifem she was diagnosed as having cancer in her liver. Unfortunately she passed away a few months later.
I was under the impression that dcis can turn invasive and spread, but they’re not sure in which cases this happens, so I think they err on the side of caution.
Don’t quote me on that though.
In mum’s case she opted for a bilateral mastectomy mainly because of family history as opposed to being given that option to start with.
I know when mum was diagnosed she was told that she was at higher risk of getting dcis in the other breast which was also a reason she opted for mastectomies as opposed to wle & radiotherapy.
Don’t know if this helps your topic or not but thought I’d join in xx
big hugs to all
love
Justine
x
DCIS and Molly the treatment your aunt received included chemotherapy which suggests to me she had invasive cancer which had spread to her lymph nodes - she may have had DCIS as well, but I don’t think she had this alone.
DCIS on its own is extremely unlikely to spread as it is contained in the ducts and has not yet developed the capacity to do so. It is thought to be about 98% curable.
On some occasions there may have been very small areas of invasion within the DCIS which did not show up under the microscope but this is rare.
Mole
DCIS Hi everyone, nice to see some familiar names in here. I must admit, I too thought the huge increase in the incidence rate was due to them including DCIS, if not then it’s even more worrying.
That conference sounds really interesting, will they be publsihing anything?
When I was diagnosed, I had a report from ‘What Doctors Don’t Tell You’ which was saying that many women are diagnosed with DCIS and treated unnecessarily. I went through mental torture while trying to decide what to do, then decided I couldn’t risk it, so went along with the doctors. I haven’t regretted it.
Thanks Mole for the stuff about how they know DCIS will devlop into cancer, I must admit I did wonder how they got their stats.
Nice to be posting properly again and not whinging!
Anne
DCIS - treatment -recurrence I remember when I was diagnosed reading some ‘benchmark’ trial data from America (was it San Diego?) Anyway the results of those trials were as follows:-
Incomplete excision (less than 4mm clear margins) without radiotherapy = risk 50%
Incomplete excisions with radiotherapy= risk 15%
Complete excision with radiotherapy = risk 4%
The risk refers to insitu recurrence and invasive recurrence.
High grade DCIS may be slightly higher as the importance of the grade was not then recognised so the figures were not broken down.
DCIS natural history is slow but needs to be properly managed and if so there is a 50% chance of it coming back as an invasive disease.
Clearly the stats for BC are worrying particularly when you think that in Vietnam, China etc they do not experience Breast Cancer. This may say something about our diet - there is a link with obesity and breast cancer - or our screening and health awareness.
DCIS --Sorry should read - 'DCIS needs to be properly managed and if NOT…
Hi again For Mole, I’m not quite sure what exactly my aunt’s diagnosis was, but on the letters mum and I have had from Addenbrooke’s genetics dept. they just had on there that my aunt was initially diagnosed with intraductal carcinoma. They didn’t put anything else on there so am not quite sure what exactly the stage was or anything. I do know that the lump she had was very large (she had left it a long time before going to the doctor) and she had to have chemo to shrink it before surgery.
I must admit it is a bit confusing. When I checked on the internet what intraductal carcinoma was it just said it was the same as DCIS.
Confusing or what???
kind regards
Justine
x
research conference Anne, Breakthrough is going to publish the findings of the conference early in 2006. Meanwhile, those of us who attended it have been asked if we’d like to volunteer to be interviewed by an Anthropologist who is carrying out research on patient involvement in breast cancer research and our views on the conference.
I’ve got my interview Monday afternoon.
— —Having just undergone treatment for DCIS I would be interested in the information mentioned above from Mole about how they know DCIS will develop into cancer, can you tell me where to find this.