Women diagnosed with ductal carcinoma in situ (DCIS) need clear
communication and tailored support to enable them to understand this
complex breast condition, which has divided the medical profession when
it comes to its perception and prognosis. That is the key finding of a
study published in the April issue of the Journal of Advanced Nursing.
Research carried out at the University of the West of England, Bristol,
UK, looked at how 45 women felt when they were diagnosed with DCIS and
how their experiences changed over time. It found that many of the women
were very confused about whether or not they had cancer and that medical
staff often added to this confusion by providing conflicting messages.
“DCIS is a non-invasive condition where the cancer cells are contained
in the ducts of the breast” explains lead author Dr Fiona Kennedy, now a
research fellow at Sheffield Hallam University. “It currently makes up
20 per cent of breast cancers detected by UK screening programmes.
“However, uncertainty surrounds whether it will progress into invasive
breast cancer and this has created two factions in the medical
profession. Some view DCIS as a carcinoma in situ, emphasising that the
majority of cases have a high risk of progression and need treatment to
reduce the incidence of invasive breast cancer. Others view DCIS as a
pre-cancerous condition.
“DCIS patients have an excellent prognosis, but treatment is
controversial because it is similar to treatment for invasive breast
cancer, including mastectomy and possibly radiotherapy and hormone
treatment.
“This can be confusing for women diagnosed with DCIS. On the one hand
they are being reassured that the condition is not life-threatening, yet
on the other hand clinicians are recommending extensive, invasive
treatment.”
The women, who were recruited from nine UK breast clinics, ranged from
34 to 84 years-of-age with an average age of 59. Seventy-six per cent
had been diagnosed following screening and the rest had presented with
symptoms. Some women had more than one surgical procedure, including
wide local excision to remove the affected breast tissue (56%) or breast
removal (44%).
Twenty-seven of the women took part in follow-up interviews nine to 13
months after diagnosis. All had completed their treatment and, during
surgery, five had been diagnosed with DCIS in numerous sites (multifocal
disease) or invasive breast cancer.
Key findings of the study, funded by the charity Breast Cancer Campaign,
included:
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Many women felt confused and conflicted by their diagnosis. Some were
told it was cancer, some were told it wasn’t cancer and some medical
staff used the terms DCIS, pre-cancer and early breast cancer. As one
women said: “Sometimes they refer to it as breast cancer and then when
I went to oncology last week they said it’s not breast cancer it’s
pre-cancer…”
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Women spoke about the contradictions of being told it was pre-cancer
or non- cancerous, their perceptions of what this meant and then being
recommended extensive, invasive treatment. One woman’s surgeon said he
didn’t know why she was so worried when she didn’t have cancer. “Well
if I haven’t got cancer why am I having radiotherapy and why have you
taken a 9cm by 6cm by 3cm chunk out of my breast?” she replied.
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Some women were more affected than others by their condition,
especially if they had more extensive surgery. Many experienced mixed
and fluctuating emotions. As one woman said: “At worst I feel
mutilated and angry and upset…At best I feel relieved that it was
nothing more.”
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One of the most enduring emotions was one of on-going risk, which
ranged from fleeting concerns to significant, intrusive thoughts. They
worried about DCIS reoccurring, or developing invasive breast cancer,
and felt vulnerable and uncertain about the future.
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Body image was also a big issue and impacted on the women’s confidence
and sexuality. “I felt that I wasn’t perfect in that area…I felt very
exposed” said one woman. “I don’t know how I can go into a
relationship and that makes me angry” said another after
reconstructive surgery.
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Women who were confused about their own diagnosis found telling others
very challenging. “I wanted them to know that there was a cancer in
the title…you need to justify why you’re having such major surgery”
said one. “If I said I’ve got breast cancer she [mum] would have been
hysterical” said another, adding that she chose instead to describe is
as “a really, really, really tiny area of pre-cancerous cells”.
“It was clear from our research that women’s perceptions and experiences
of DCIS shifted and developed over time during the diagnosis, treatment
and post-treatment phases” says Dr Kennedy. “Confusion about their
medical condition was also very common as they received mixed messages
about their diagnosis and whether it was or wasn’t cancer.
“One of the key recommendations of this study is that clinicians should
think carefully about the language they use to describe DCIS and that
further work is needed to explore the potential for the development of
clear, coherent and flexible communication guidelines. There is also a
need for appropriate and tailored help, support and information to meet
the specific and evolving needs of women diagnosed with DCIS.”
Baroness Delyth Morgan, Chief Executive of the Breast Cancer Campaign,
has welcomed the findings. “A diagnosis of DCIS can leave women confused
about their treatment options as currently even clinicians don’t know
which cases will progress to invasive breast cancer” she says. “For now
we must give clearer messages to patients about what their diagnosis
means and the potential risks to them if it is left untreated. Improving
awareness of DCIS when women attend routine breast screening
appointments is a key part of this process.”
The paper can be viewed free online at: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2648.2011.05788.x/pdf
