3.11 Some of the women affected by under-reporting
of their smear tests were content to give their evidence in public and
for their names to be published. Others were willing to give their evidence
in public but they wanted their identities to remain confidential. The
Committee made orders protecting the identities of those women who requested
this protection. In their cases they were each given a number and this
was how they were identified throughout the hearing. To enable the reader
to appreciate the impact of cervical cancer on the patient the Committee
has included in the report details of the experiences and the condition
of some of the women affected. As these details include very personal
information the Committee has chosen not to identify any of these women
by name in the report.
3.12 Witness A was 31 years old when she appeared before
the Committee. She was diagnosed as having cervical cancer when she
was approximately 26 years old. At this time she was married, a mother
of three children and she was working as a nurse. She and her husband
hoped to have one more child. On 6 December 1994 she consulted her general
practitioner as she was experiencing heavy painful periods, bleeding
between periods and bleeding after intercourse. She was concerned that
these were signs of cervical cancer. A cervical smear test was taken
and on 7 December was reported as " abnormal squamous cells present
showing changes of a high-grade squamous intraepithelial lesion (CIN
2 or 3)." She was told by her general practitioner that her smear
test result showed she had a pre-cancerous condition. Because witness
A thought her condition was deteriorating she attempted to obtain an
appointment with a gynaecologist. She said that she had difficulty obtaining
an early appointment as she was told that she was a non-urgent case.
She attributed this to her 7 December smear test report. She ultimately
saw a gynaecologist on 20 February 1995; at this time a colposcopy
was performed and she also had laser treatment to remove some cancerous
cells. On 23 February she received a phone call from the gynaecologist;
she was told she had cervical cancer and that she would need a hysterectomy.
She said this news came as a tremendous blow to her as she and her husband
were planning to have another child.
3.13 She subsequently underwent a hysterectomy and
also had 36 lymph nodes removed. Her ovaries were left, owing to her
young age. Her left leg was partially paralysed and has been permanently
damaged as a result of the operation. Six weeks after the hysterectomy
she went for a follow up examination. At this time she was informed
that the cancer had spread into her lymph nodes, that her prognosis
was not good, and that without further treatment her survival rate was
50/50. She was given six weeks of external beam radiotherapy followed
by internal beam radiotherapy; this treatment resulted in the destruction
of her ovaries.
3.14 Witness A regularly had cervical smear tests.
Apart from the smear test report of 7 December 1994 which had been reported
as CIN 2 or 3, her other smear tests had all been reported as normal.
She retrieved four of her smear tests. They had all been read by Dr
Bottrill of Gisborne Laboratories Limited. Another smear test, that
Medlab Hamilton had reported as normal in 1991, has not been reviewed,
and, therefore, the status of this smear test is unknown. The tests
were sent to a laboratory in Auckland for review. A review of witness
A’s smear tests showed:
(i) A smear in November 1990 reported by Dr Bottrill
as low-grade with a management recommendation that a repeat smear
was required. Four independent pathologists who reviewed the smear
test reported it as high-grade. A cytology review panel comprising
five laboratories also read the smear test; four of the five laboratories
reported it as high-grade, the other reported it as normal.
(ii) A smear test in December 1990 reported by
Dr Bottrill as normal. The four independent pathologists read it
as high-grade. All the laboratories in the cytology review panel
reported it as high-grade.
(iii) A smear test in May 1992 reported by Dr Bottrill
as normal. The four independent pathologists reported it as high-grade.
Four of the five laboratories in the cytology review panel reported
it as high-grade; the other read it as normal.
(iv) A smear test in December 1994 reported by
Dr Bottrill as high-grade CIN 2 or 3. Three of the four independent
pathologists reported it as invasive carcinoma, one reported it
as suggestive of carcinoma, and when the cytology review panel reviewed
it, five out of five laboratories reported it as invasive carcinoma.
3.15 Had any of witness A’s smear tests in 1990 or
1992 been recognised then as displaying a high-grade abnormality, her
disease may have been detected at a pre-cancerous or early cancerous
phase. Her treatment options would have been less invasive and associated
with lesser morbidity. It may be that the abnormality could have been
removed from her cervix, and her uterus and ovaries left intact. When
she gave evidence to the Committee she was a 31 year old woman
who had lost her uterus and her ovaries, she had a permanently damaged
left leg, and she was going to require hormonal therapy for a large
part of the remainder of her life.
3.16 Witness B is a married woman aged 39 years, she
has four children aged 17, 15, 12 and 11. Since 1989 she had regularly
had cervical smear tests. She has been registered on the National Cervical
Screening Register since 1992. In April 1996 she went to her GP because
she felt unwell and she was experiencing a constant unpleasant discharge
from her vagina. In August 1996 she returned to her general practitioner
as she was experiencing incontinence. On 4 October 1996 a smear
test was taken and reported by the Gisborne hospital laboratory as "
atypical glandular cells of uncertain significance present. Repeat smear
six months." She was advised that she did not have cancer and she
was not to worry. Because the problem she was experiencing in the vaginal
area did not clear up, she was referred to a gynaecologist, this resulted
in a dilatation and curettage in order to sample the endometrial lining
of the body of the uterus and cautery of the cervix on 10 March 1997.
3.17 Witness B’s smear history is as follows:
(i) Smear test November 1989 reported by Dr Bottrill
as normal; test not available for re-examination
(ii) Smear test April 1989 reported by Dr Bottrill
as normal; test not available for re-examination
(iii) Smear test January 1992 reported by Dr Bottrill
as normal; on re-examination reported by Douglass Hanly Moir Pathology
as high-grade
(iv) Smear test April 1995 reported by Dr Bottrill
as normal; on re-examination reported by Douglass Hanly Moir Pathology
as high-grade
3.18 On 21 March 1997 witness B learnt that the
biopsy results showed she had cervical cancer. On 16 April 1997 she
had a radical hysterectomy and a bilateral pelvic lymph node dissection
with conservation of her ovaries. Subsequently on 4 October 1999 she
was advised that her smear test of January 1992, which had been originally
read as normal had been re-read by Douglass Hanly Moir Pathology as
high-grade/CIN 3. On 1 March 2000 witness B received a letter from
the Health Funding Authority advising her that her smear tests of January
1992 and April 1995 had been re-read as high-grade. Her general
practitioner wrote to her advising that it was likely that between 1992
to 1997 there were pre-cancerous abnormalities on her cervix:
"It appears that your original
smear test in 1992 was misread and had this been read correctly
at the time it is possible you may not have developed a cancer of
the cervix and may not have required a radical hysterectomy. However,
at that time you probably would have required some form of treatment
such as a cone biopsy to treat the CIN 3 which is likely to have
been present then."
3.19 Witness C gave evidence to the Committee during
the public hearings which ran from April until May 2000. At that time
she was 53 years of age; married with five children. When the committee
resumed its hearings in July she had died; her death can be attributed
to cervical cancer. Witness C had smears taken in 1975, 1995 and 1996.
Her smear test result for 1995 was reported by Dr Bottrill as normal.
Her smear test result for 1996 was reported by the Gisborne hospital
laboratory as normal. In March 1999 she visited her general practitioner
as she had pain in her pelvis and legs, she felt very unwell and she
had some vaginal bleeding. Between March and June the vaginal bleeding
increased. By 14 July she was bleeding heavily. On 14 July an attempt
was made to take a smear but this was abandoned, as the smear taker
was not able to access her cervix. On 18 August 1999 she saw a
gynaecologist who performed a colposcopy and biopsy. A scan was also
taken; this showed a tumour in her uterus. The gynaecologist advised
her that she might have cancer. On 25 August 1999 she described
herself as having terrible pain in the region of her stomach and her
stomach was swelling. She managed to continue to go to work with the
assistance of medication to relieve her pain.
3.20 On 26 August 1999 witness C was admitted
to hospital for an operation. On the morning of the operation she was
told that she had cancer of the cervix and the operation was abandoned;
she was to have radiotherapy instead. On 2 September 1999 she had
another biopsy; at this time she was told that Dr Bottrill had
misread her smear in 1995, that he had read it as normal when it was
high-grade, and that if he had read it correctly she could have been
treated at that time. As the re-examination of smear tests the Health
Funding Authority had carried out was only confined to smear tests read
at Gisborne Laboratories the status of the 1996 smear read at Gisborne
hospital laboratory is unknown. The Committee heard from more than one
expert witness that once cervical cancer is present smear tests become
very inaccurate and for that reason they are not used to diagnose cervical
cancer. By 1996 witness C’s condition may have advanced to the point
where a smear test was no longer reliable; equally it is possible that
the 1996 test was also misread. If the smear test was misread the misreading
may be explainable as being a false negative which can occur in any
laboratory or it may be an indication of unacceptable under-reporting
from another laboratory. Unless the 1996 smear is re-examined or until
a cancer audit of her case is carried out the answer to this question
will not be known.
3.21 On 6 September 1999 witness C and her husband
went to Palmerston North where for six weeks she had radiotherapy. She
felt tired and sick. Once the tumour had shrunk, two smaller tumours
were found behind it. One was on her bladder, the other on the top of
her bowel. In November 1999 she received caesium rod treatment. In the
last week of February 2000 it was discovered that she was passing faeces
through her vagina, she was running a high temperature and she was experiencing
a lot of pain. Because of the ongoing pain she went into hospital in
March 2000 and she had a colostomy. She told the Committee that she
now felt useless as she was, "unable to be there", for her
family, that she had been forced to stop working which had placed a
heavy financial burden on her family and that one of her daughters had
been obliged to return to the family home to help care for her:
"Since my operation in March
2000 it has been even harder. I now have a bag that I have to clean
and empty out. It just gets too much, but I suppose when I get used
to it I will be all right. Each week I have to come into Gisborne
Hospital for a check up. I continue to have good days and bad days.
On the bad days I find it very hard to get out of bed. I have a lot
of feelings that I cannot put into words. I feel anger and frustration
– why me, why did this happen to my family?
3.22 Witness D was 39 years old when she gave evidence.
She is the mother of four children aged 19, 11, 5 and 3. She first had
a smear on 26 August 1994, which was read by Dr Bottrill as normal.
In August 1996 while she was in labour and due to give birth to her
youngest child an internal examination of her pelvic region gave the
midwife concerns about her health. Two days after her son was born she
had a colposcopy and biopsy. Two days later, at a time when her son
was only four days old, she was told that she had cervical cancer. On
23 September she was to have a radical hysterectomy, however, when
the surgeon operated and saw the extent of her cancer, which had spread
into her pelvic walls, he removed only one lymph node. She was told
that radiotherapy and caesium rod treatment was the only way she could
hope to improve. In October 1996 she had eight weeks of radiotherapy
treatment and caesium rod treatment at Palmerston North Hospital. She
returned home on 6 December 1996. The treatment made her feel very
tired, nauseous and she had diarrhoea. She was unable to look after
her children. At that time her children were 16 years old, 8 years old,
2½ and 5 months of age; all of them wanted and needed her attention.
3.23 In October 1997 Witness D’s marriage broke up.
She said her husband left because he could not cope. In November 1997
she was advised that there was some hope that she would be all right.
However, in January 1998 she felt a small lump at the edge of her vagina
and when a colposcopy and biopsy was formed she was told that she was
terminally ill, that there was nothing more that could be done for her,
and she should get her affairs in order. But, she insisted on exploring
the possibility of further treatment and so she was referred to a specialist
at Waikato Hospital. The specialist advised her that her only chance
was to undergo a total pelvic clearance. The pelvic clearance was performed
on 24 March 1998; witness D’s cervix, ovaries, vagina and bladder were
removed. From that time on she had to use a urostomy bag. While she
was in hospital her children were placed in the care of Presbyterian
Support Services.
3.24 On March 1999 she received a request from a member
of the Cancer Society to have her smear test re-read. The smear was
re-read on 21 April 1999 by Medlab Hamilton and was reported as
high-grade. Later the smear was re-read by Douglass Hanly Moir Pathology
who also reported it as high-grade. In November 1999 witness D was admitted
to hospital with severe stomach pains caused by the adhesions and scar
tissue from the pelvic clearance. On a second visit in November 1999
a routine chest x-ray discovered a lump in her lung. On 17 December
1999 a tumour was found in her lung and that, together with an infected
lymph node, was removed. She was advised that the lump in her lung was
a secondary cancer to the cervical cancer. She told the Committee that
the damage to her children and herself has been far reaching.
3.25 The Committee also heard evidence from the daughter
of witness E, who had died on February 1999 of cervical cancer at the
age of 42. She was a married woman with four children. Witness E had
been a nurse and her daughter described her as very health conscious.
In 1997 she was told that she had cervical cancer. This bewildered her
as she had regularly had smears every two to three years. Her smear
test reports for 1988, 1991, 1993 and 1996 were provided to the Committee.
Dr Bottrill had read the smear tests of August 1988, September 1991
and November 1993 and he had reported them all as normal. The smear
test of September 1996 had been read at the Gisborne hospital laboratory
and reported as " specimen is satisfactory although evaluation
is limited by scant squamous epithelial cells. There is no evidence
of cellular abnormality. Please repeat the smear in six months."
At the time her smear was taken in September 1996 her general practitioner
recorded in witness E’s medical file that she was having "period
problems and discharge." Witness E made a return visit her general
practitioner in March 1997 and at that time her file shows the condition
she had described in September was still present. Her general practitioner
referred her to a gynaecologist. In April 1997 witness E was seen by
a gynaecologist who described her in his report as experiencing pelvic
pain, heavy bleeding during her periods, some inter-menstrual bleeding
and constipation.
3.26 Between 1997 and her death in February 1999 witness
E had a number of invasive medical interventions to relieve the various
symptoms she was experiencing. Her symptoms included heavy bleeding,
pelvic pain and vaginal discharge. An operation report of 29 December
1997 describes her cervix as being " completely replaced by necrotic
tissue and proliferating tumour." To relieve this she underwent
an embolisation of the blood vessels supplying the tumour. On 27 January
1998 she was admitted to hospital with severe vaginal bleeding. Another
embolisation was performed. On 31 March 1998 a medical report describes
her as having:
" a necrotic mass at the top
of the vagina from which foul smelling discharge drains copiously.
…The odour is of concern to …[witness E] as is her need for higher
doses of morphine which she equates with increasing pain."
3.27 In November 1998 during a visit to Christchurch
she became seriously ill from renal failure; this was seen as a consequence
of an extension of her pelvic malignancy. She had a nephrostomy and
this meant her left kidney no longer functioned. By January 1999 she
had developed a rectovaginal fistula and on 28 January 1999 to
remedy the fistula she had a colostomy.
3.28 Witness F was 27 years of age when she gave evidence.
She had been married for 7 years. She and her husband had no children
but they had planned to have a family. However, on 1 February 2000
she had undergone a radical hysterectomy as she had early, (stage 1B),
carcinoma of the cervix. She had registered on the National Cervical
Screening Register in 1993. She had a regular history of smears:
In January 1991 and August 1991 smear tests
were reported as normal by Dr Bottrill; these tests were subsequently
re-read by Douglass Hanly Moir Pathology as normal.
In June 1992 a smear test was reported as normal
by Dr Bottrill; this test was subsequently read by Douglass Hanly
Moir Pathology and reported as "abnormal squamous cells present,
a high-grade lesion cannot be excluded."
In May 1993 a smear test was reported by Medical
Diagnostics of Palmerston North as "scanty evidence of human
papilloma virus present; specimen satisfactory for evaluation but
limited by no endocervical component; outside normal limits, repeat
in three months". This smear test was re-read by Medlab Central
of Palmerston North in March 2000 and reported as showing evidence
of human papilloma virus and no dysplasia detected.
In January 1994 a smear test was reported as normal
by the Gisborne hospital laboratory. This smear test has not been
re-examined.
In June 1996 a smear test was reported as normal
by the Gisborne hospital laboratory. This smear test was re-read in
March 2000 by Medlab Central; it was reported as normal.
In October 1997 a smear test was reported as normal
by Medlab Central. The Committee was told that this smear had been
misplaced and so it was not re-examined.
In June 1999 a smear test was reported by Medlab
Hamilton as high-grade CIN3. This diagnosis led to a histological
examination in August 1999. Witness F’s histology was diagnosed by
Medlab Central as CIN 3. When it was re-read at National Women’s hospital
in December 1999 the histology was diagnosed as squamous cell carcinoma
stage 1B.
3.29 Witness F had a radical hysterectomy and pelvic
node dissection. Her ovaries were conserved. This experience has had
a traumatic impact on witness F and her husband. For her, there has
been the physical pain that accompanies cervical cancer and its treatment.
For her husband there has been the disruption to his family life and
future plans and the reminder of the consequences of this disease as
his cousin died of cervical cancer. Witness F and her husband had delayed
starting a family until they were financially secure. They are now making
inquiries about having children through a surrogacy programme. Their
marriage is under strain. Witness F told the Committee "I worry
because [my husband] is still able to have his own biological children
and I do not know what this will do to our relationship."
