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Gynaecological Cancer

Posted by on Tuesday, October 5, 2010, 1:54
This news item was posted in Cancer, G, Gynaecological category and has 2 Comments so far.

1. Introduction

This interim report is about women’s experiences of symptoms before they were diagnosed with a gynaecological cancer and their experiences leading up to and being told they have cancer. The interviews took place in the women’s’ own homes at the beginning of 2006 and within approximately six weeks of being given their diagnosis. The interviews were transcribed word for word, anonymised and analysed with the researcher identifying key points and issues from each interview.

Nine women who had been diagnosed with a gynaecological cancer were interviewed. Of these, seven had ovarian cancer, and two had cervical cancer.
2. Symptoms
Symptoms experienced

Gynaecological Cancer
Gynaecological Cancer

The majority of women reported experiencing a range of physical symptoms that they now relate to their diagnosis of cancer. These are listed below:

* Back pain
* Tiredness
* Vaginal bleeding
* Abdominal pain
* Abdominal swelling
* Abdominal pain or discomfort
* Loss of appetite and/or weight loss
* Swollen legs and feet
* Change of bowel habits (constipation or diarrhoea)
* Breathlessness
* Vaginal discharge

All of the seven women diagnosed with ovarian cancer had experienced one or more of the symptoms described above. The main symptom that caused the women to consult with their GP or go to hospital was heavy or persistent vaginal bleeding (three women), abdominal pain (two women), swollen legs, feet and abdomen (one woman), and breathlessness (one woman).

The two women with cervical cancer were diagnosed following an abnormal smear test, and had not had any cancer-related symptoms.
Routes to diagnosis

The route to diagnosis for the two women who were diagnosed with cervical cancer was similar. Both had had a routine smear, or been at the doctors for another reason and asked if they would like a smear. They both had an abnormal smear, which was then further investigated.

The route to diagnosis for those women diagnosed with ovarian cancer was more complex, and differed according to the main symptom. The three women who had vaginal bleeding as their main symptom, all consulted their GP. Two were referred more or less straightaway to the hospital for further tests. The third had more or less continual vaginal bleeding for several months and was being treated by her GP. However, during a very heavy episode of bleeding, her family contacted the out-of-hours doctor and was told to go into hospital. Once the women had been referred or admitted to hospital, they had the tests, and were told the diagnosis.

The two women who had abdominal pain or discomfort as their main symptom reported a different experience to those with vaginal bleeding. Both women consulted their GPs but the abdominal pain was diagnosed as constipation in one woman and possible irritable bowel syndrome in the other (she was sent for further tests). For both women the pain got worse. They both consulted their GPs again and one of them was then sent to hospital for further tests. The other was diagnosed as having ‘wind.’ In the end she was so uncomfortable that she finally decided to go to the hospital herself.

One woman has a very swollen stomach, legs and feet and consulted her GP. She was sent into hospital for observation as it was thought she might have a thrombosis (blood clot) in her leg. However, once she was admitted they started doing many different tests.

Finally one woman became breathless, went to see her GP who arranged for her to have an x-ray which showed ‘fluid on the lung.’ She was then admitted to hospital.
Delaying in going to see a doctor

Most of the women that were interviewed went to see a GP relatively soon as their symptoms started. This lack of delay could be due to the relatively acute nature of the symptoms (e.g. heavy or persistent vaginal bleeding, abdominal pain). However one woman did put off going to her doctor, because she was worrying about her husband who was also unwell.
Symptoms and the role of family and friends

Several women talked about their partners noticing their symptoms. The role of family and friends in noticing symptoms or persuading the women to see their GP was not raised as an issue in most of the interviews. However, one woman did comment that:

“I’m not a ‘doctor botherer’. I would rather have my head hanging off by a thread than go and see a doctor [laughs]. Erm, so it was my husband, and another friend who happens to be a nurse, who nagged me.”

Waiting for diagnosis

For the women with ovarian cancer the length of time spent having tests and then waiting for a diagnosis varied and there was no consistent pattern. All of the women had acute symptoms prior to diagnosis, but some of these symptoms (e.g. abdominal pain, breathlessness) could be symptoms of many different diseases and disorders. Most of the women with ovarian cancer spent some time in hospital as an in-patient having tests prior to diagnosis. Even as an in-patient, two women reported waiting for 10-12 days before being told a diagnosis. Of those who had tests done as an out-patient, one reported having to wait several weeks after the test before finding out the results, having to ring up and feel that she was ‘chasing’ them to get the results. However, for all of the women, the longest they had to wait for results after being referred or admitted to hospital was about four weeks.

Neither of the two women who had cervical cancer talked about delays in diagnosis. Both were told that they had an abnormal smear, went for further tests, and were then told their diagnosis.
3. Being told you have cancer
Hearing it for the first time

The women were told that they had got cancer in a different ways. Most were told their diagnosis face to face in hospital, or by their GP, and were relatively satisfied about the way in which they were told. However, some of the women and their relatives felt that the doctors were not telling them everything, especially at the time of having tests. This made them feel uneasy and increased their anxiety about waiting for results:

“I said to [my husband], “Certain questions I’ve asked I’ve seen them look at each other, and certain looks” and I said to [my husband] “I just feel that there’s a little bit more here than what they’re telling me, you know?”. They weren’t doing it intentionally and they were really good with me, you know what I mean.”

Several women said that they appreciated being told the facts in a straightforward manner:

“From the very first meeting they were in no doubt whatsoever that it was the whole truth and nothing but the truth.”

Two were told over the phone. For both these women, being told over the phone caused additional anxiety and confusion. One of these women felt that although the manner of the doctor was fine, she would have preferred being told face to face.

“Erm, I would have preferred to have met him face to face because, although he has a very good command of English, I have had difficulty in understanding him, er and you get to the stage you don’t want to ask people to repeat it five times over. So in a way, but I got the gist of his message very clearly on the phone.”

So although this woman understood that she had cancer, she was confused about the type of cancer she had (uterine or ovarian), and wasn’t quite sure what she had heard on the phone.

The other woman had to ring up herself after having her tests. She had waited for someone to ring but no-one had done so. She finally got through to a cancer nurse on a ward, who told her:

“That I had to have chemo, but she never told me it was ovarian cancer.”

For this woman, she was told what treatment she was to have before she had even been told her diagnosis. She was also told that the consultant would write to her, but she never received a letter.
Understanding what is being said to you

Several women commented on not understanding all the information that they had been given at the time of diagnosis, and not remembering words used to describe their cancer. As one woman put it:

“.. I just think sometimes the way doctors speak, yae din’nae understand, yae din’nae take in, especially when it’s something like that, yer only, it’s like, yer minds like a sieve, yer only taking bits and other bits are just falling through and it’s probably the main bits, and so, ah don’t know like, I’m no blaming nae’body like ..”

Two of the women were not clear at the beginning about what type or cancer they had. One woman wasn’t quite sure when she was first told whether it was definitely ovarian cancer:

“I got a letter in to go to see [consultant] in the oncology and I went there and I saw one of his associates and he told me, um…ya ken I don’t think he said mentioned ovarian cancer to me but he said that em, I was gonna get chemo and he explained that there would be three types of chemo… the only time I saw ovarian cancer written down was when they gave the forms for my wig.”

Another woman was initially told that she had cancer of the uterus and then later told that she had cancer of the ovaries. This caused her some confusion.

“Ah they did a total hysterectomy er, uterus, fallopian tubes, lymph nodes, ovaries, And discovered as it turned out that the cancer wasn’t in the uterus, it was actually in the ovary, so it’s a bit of puzzlement there. Weren’t terribly sure what had happened that he’d diagnosed the uterine cancer.”

Other women reported being told the stage of their cancer, but not understanding what this meant, or hearing cancer-related words that they did not understand.
Impact of being told you have cancer

The women expressed a wide range of reactions to being told that they had cancer, from shock to relief. For some it was a huge shock, especially one woman who went for a cervical smear:

“Quite honestly I mean I’ve never been near a doctor for I don’t know how long before all this and then something just happened and through the testing and everything and that’s how it just came as a such a huge bombshell.”

For others, the diagnosis of cancer was something that they had already discussed or thought about beforehand:

‘We’d already both sort of talked this through and talked it over, ‘What happens if?’, ‘What do we do if?’

However, even though it was not necessarily a surprise getting the news, this woman and her husband both talked about it being “the worst day or our lives”.

One woman, who had had received several different explanations for her symptoms (including it being wind), felt relief on hearing her diagnosis:

“To tell the truth it was a relief. Because I thought, well there’s something wrong. That was my initial, I wasn’t, I never cried, I never, it was just right there is something, it’s not my imagination, it’s not my nerves, it’s not wind, you know it’s something and I knew that they were, when the other doctor, had said you’ll get chemotherapy I knew when they were saying that, then I thought that’s it I’m going to be okay. So I just felt quite positive then. I still feel positive.”

Hearing more about your cancer after further tests

Hearing that you have a gynaecological cancer is not a single event. Many of those who are told they have cancer have to then undergo further tests or surgery to confirm the stage the cancer has reached and its exact location. For example, one woman who had gone in with breathlessness was told that they had found cancer cells in some fluid they had removed from her lung, but needed to do further tests to find out where the primary cancer was.

Going for further tests was a particularly distressing time for both the woman and her husband, and not much information or support was given to them during this time. For this couple, it was a time when they were thinking the worst, and any event, or way a person spoke, was significant for them. For example, the woman saw an x-ray which distressed her and asked a nurse to find out about it but, “she never came back, so I presumed it was something that I shouldn’t have seen”.

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