Allen Lives Interrupted

Women and Gynaecological Cancer
1. Auflage 2018
ISBN: 978-1-925681-55-0
Verlag: Vivid Publishing
Format: EPUB
Kopierschutz: Adobe DRM (»Systemvoraussetzungen)

E-Book, Englisch, 200 Seiten

David Allen and Genevieve Green offer patients and carers insights into the complex journey faced by a woman diagnosed with a gynaecological cancer. With over 50 years of combined experience, they deliver up-to-date information on cancer therapy and research. This book explores a woman's very personal journey through treatment for life-threatening illness: one with implications for both her fertility and her intimate sexual life. Told from the interlocking perspectives of patient, carer and clinician, this is a story of medical progress as well as a story of women living with courage, grace, joy and love when cancer 'interrupts'.

Autoren/Hrsg.

Allen, David

Leseproben

Chapter 1

The First Meeting

“As I heard the doctor speak, outlining the disease and the treatment, I felt like I was starting out on a road on which no one could accompany me.”

—Margaret

How is someone likely to react when told they have cancer? Very often people are unable to put into words what they are feeling. There can be an immediate, visceral bodily reaction which is beyond words. Common immediate responses may be shock, fear, disbelief, panic, anxiety, uncertainty, denial, a feeling of life being tipped upside down. But these are all abstractions and perhaps, as such, can’t really get to the heart of what being diagnosed with a serious illness is like.

Serious illness stops us in our tracks. It brings us face to face with our mortality. In gynaecological cancer, it may also bring us face to face with our sexual being.

Any woman suspected of having a gynaecological cancer should be referred to a gynaecological oncologist, a specialist in detecting and treating the disease. Gynaecological oncology is a sub specialty within the already specialised field of gynaecology. This referral may be made by the family doctor or another specialist.

Very often the referral itself greatly heightens a patient’s anxiety. This is something oncologists need to be aware of when they first meet with their patients.

Usually any diagnosis a patient receives at an early stage of investigation can only be provisional. Often a great deal remains unknown until their initial meeting with the gynaecological oncologist. But that does not prevent questions forming in the patient’s mind. What does this diagnosis mean? What is the treatment? Will I be cured? Am I going to die? How will I manage if I need treatment? Who will look after my children, my husband/partner, my animals? What if I don’t like the doctor?

We think of modern medicine as relying mainly on scientific method and advanced technology, which of course it does. Where improvements in knowledge and treatment occur, it is by research, measurement of the disease’s progression and, often, through carefully controlled clinical trials. Yet there is, and always has been, an important narrative, or story, element which is integral to medical practice. This story element can begin with what may appear to be merely an exchange of information.

Patients mostly begin by describing their symptoms and giving their medical and family history. Often in so doing they tell a personal, even intimate, story. Many of the facts shared may have great emotional significance for the woman sharing them.

While the information the gynaecological oncologist gives her may have been given many times before, it is new for this patient. It holds implications which she must absorb and incorporate into her life. It is the beginning of a relationship in which trust and understanding are to play an integral part. It is unlikely that the patient will take in everything they hear at this early stage. This is why it is very important for patients to have someone with them, at least for the first consultation. Where a patient’s first language is not English it is important to have an interpreter present, at every phase of their care.

Margaret and Ted’s story

When Margaret was referred to me, she was 58 years old and had started menopause at 51. The referral from her general practitioner stated she had not been feeling as well as usual for the past six months. There was nothing definite, but at times she felt more tired. More recently she had been experiencing indigestion and at that point had consulted the family doctor. An examination and a number of basic blood tests had been performed but had revealed nothing abnormal.

Another few weeks went by with no improvement and her doctor sent her for a pelvic ultrasound. This reported a six centimetre complex ovarian mass, and a small amount of free fluid in the pelvis. A CA125 blood test, a common test which can help detect ovarian cancer by measuring the amount of a protein tumour marker found in the blood, was performed and Margaret was referred to a gynaecological oncologist.

Margaret attended the initial consultation with her husband Ted. They both looked nervous and I did my best to put them at ease. We discussed Margaret’s general health, which was good, and her medical history. She was 23 when she delivered her first baby, a stillborn son. Some years after that she had two healthy baby girls, born 18 months apart. There was no other significant past medical history, and no family history of ovarian or breast cancer, or any other cancer as far as Margaret was aware.

We turned our attention to the ultrasound findings. The six centimetre mass was partly cystic (filled with fluid) and partly solid and appeared to be contained within Margaret’s left ovary. The CA125 result was 394, which was outside the normal range. I explained that a higher than normal CA125 can indicate the presence of ovarian cancer, but is not a conclusive test. However, the ultrasound and her blood test results did suggest a cancerous tumour. There was a chance that the mass was a benign or borderline tumour, but Margaret would need surgery to receive a definite diagnosis.

Margaret’s surgical management options depended on her diagnosis at the time of surgery. I explained that during surgery the left ovary tissue would be sent to the pathologist who would perform a frozen section. A frozen section is a laboratory procedure that can analyse a tissue specimen very rapidly. The pathologist would then be able to give an immediate working diagnosis of what we were dealing with. A benign (non-cancerous) ovarian tumour could be treated simply by removing one or both ovaries, but if there was a malignancy (cancerous tumour) Margaret would need more complex and more extensive surgery. The surgery would likely need to be followed by chemotherapy. Margaret’s husband had become visibly upset at this stage of the consultation and she had gently put out her hand to comfort him. They both said they wanted to go ahead with surgery as soon as possible and Margaret’s admission to a Melbourne hospital was booked for the following week.

Practical arrangements needed to be made as Margaret was travelling from a country town to a city hospital. It was important for her to be put in touch as soon as possible with the people who could help her with travel and accommodation. Very often this is done when a patient is booked for surgery. Within Australia, financial assistance is available for country patients or those from regional areas needing to travel to city hospitals for medical treatment. Receiving appropriate practical assistance helped Margaret and Ted feel supported and less anxious.

At the outset there is a lot of information which patients and those caring for them need to absorb and understand. They may need to make practical arrangements while still feeling uncertain, anxious or shocked. Many are still very anxious after their first consultation, but they will at least know the way forward and who will be performing the surgery. They will have had an opportunity to learn more about their situation, including an outline of what might happen during surgery, and to have their initial questions answered.

The time between being given a diagnosis of possible cancer, meeting with a gynaecological oncologist and having surgery can be especially difficult, with all kinds of questions and fears running through a patient’s mind. Cancer is a frightening disease. Because there is enough well-founded fear associated with a cancer diagnosis, it is important that any unfounded fears and anxieties be laid to rest as soon as possible.

Sometimes a cancer diagnosis comes in the midst of an already troubled life: during family breakdown, financial difficulties, struggle with drugs or alcohol or existing ill health. For others, lack of money, an unreliable car or no extended family may make it hard to access the treatment they need. In such circumstances support from the treating hospital or cancer centre team can be crucial. Any Australian cancer centre, whether a regional centre or city hospital, has staff whose job is specifically to support patients through these issues. The patient herself, or someone on her behalf, can contact the hospital. But ideally, some of these difficulties would have become known at the first contact or consultation so that the oncologist could let the appropriate members of the team know.

Margaret and Ted were not in a position of particular need. An oncology social worker had met them both during Margaret’s initial consultation in Melbourne. They were financially secure and otherwise in good health. They had one another and they had two loving, competent, adult daughters. However, they were country people who only rarely visited Melbourne. They had lived all their lives in Rochester, north of Bendigo, where they had been running a local post office for the past eight years.

They had begun to talk about retirement. This was something Margaret especially had been looking forward to, thinking it would be good to travel around Australia. Ted wasn’t so sure. He thought that Rochester, with its wide red streets, its pubs and the beautiful Campaspe River, contained all he needed, loved and cared about. He was close to the old peaceful cemetery where his baby son, his parents and grandparents lay. If he needed something Rochester couldn’t supply there was always Bendigo.

Now that Margaret needed to go to Melbourne,Ted would go with her. Their daughter Ruby could look after the post office. Ted would drive Margaret...