Wednesday, April 09, 2008

Breast cancer - trusting your instinct


Kylie Minogue has made a courageous statement about the initial misdiagnosis - perhaps more accurately, missed diagnosis - of her breast cancer. She tells how she was assured that she was 'fine' just weeks before being diagnosed with cancer.

It isn't easy to speak openly about one's personal encounter with cancer for a number of reasons: the story is never entirely personal because one's family and friends are affected; the successful survivor feels for those who were less fortunate so celebration is always tempered with sadness; most people experience tremendous support and care from their medical team and fear that speaking out about any negative aspects would make their gratitude seem false or would undermine the great work that they do.

Kylie's message should not be seen, therefore, as a criticism of the wonderful care she had but as a warning to women and to the medical profession that the diagnostic tools that are used are not foolproof. Instinct, intuition and fears should be taken seriously. Early-stage cancers do not always show up in mammograms but most of the women I have spoken to 'knew' they had breast cancer before the medics could detect it.

I went to see my doctor in December 1994 because I had found a breast lump. My doctor couldn't feel it and thought I was having empathetic symptoms because I was closely involved with a friend who was dying of breast cancer. He agreed to refer me to the hospital but he obviously didn't consider the case to be urgent because I didn't get an appointment until 10th January 1995. By the time I saw the surgeon, the tumour was the size of a tennis ball and urgent surgery was carried out the next day to remove it. Unfortunately the cancer had spread and two more lots of radical surgery followed and then a year of aggressive chemotherapy.

I don't normally speak about my experience because I am so grateful for the care I had from the surgeon and his specialist team, the Macmillan nurse and hospice staff who supported the whole family through a traumatic year and the continuing support they give me for the secondary lymphoedema that developed after the second operation. Had my GP acted more promptly things might have been different, we all know that early diagnosis and treatment offer the best chance of survival and usually involves less invasive treatment. I certainly don't blame him - I think doctors are wonderful and I know how difficult early diagnosis can be - also, he is a personal friend and I know how much he blames himself; but I know that he always errs on the side of caution now when patients suspect something might be wrong.

So well done, Kylie, for speaking out. I hope your honesty will encourage women to trust their instincts and to ask for further investigations if they are concerned.

For a bit of breast cancer awareness with an element of fun go and read Juliet's Tackled Pink post on Musings from a Muddy Island.

10 comments:

  1. Very brave of you for posting your story , M. And how very glad we all are that you are with us to tell that story, although I'm sure we wish you hadn't had a story to tell in the first place.

    Glad to know that your GP now errs on the side of caution. I often wonder if my friend Deb's GP has ever had a similar change of heart. He dismissed her concerns about a breast lump, telling her that it was a 'breast mouse' and nothing to worry about. It didn't go away and she went back again two or three times over several months, only to be sent away each time having been told she was worrying about nothing. After nine months, a second lump appeared and only then did he, grudgingly, refer her to a specialist. By this time, she had breast and lymph node cancer of the most aggressive kind, was given chemo but lasted barely a year. This was just 12 years ago, Debs was only in her 30s and very happily married.

    I still get angry when I think about it. There's no guarantee, of course, that prompter action would have produced a different outcome but at least Debs and her husband might have felt she was in with a fighting chance.

    I think we still cling to the old-fashioned notion that doctors are godlike, know all things and should not be questioned or challenged. They aren't, they don't and they should. They are human and they make mistakes. Which is why, although we are not encouraged to do so, it is often a good idea to seek a second opinion.

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  2. Well done you for writing about this Maureen. It does take guts and I'm glad to hear you and your family had support through your illness. I think it's great what Kylie's done to raise the profile of this issue, as she's using her fame more wisely than most celebs! My husband had a similar experience (testicular cancer) and if telling people helps one other man then that's enough for me!

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  3. I've just see 60goingon16's comment - what a heartbreaking story.

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  4. Thank you both, you obviously understand the situation better than many. I'm so sorry that your friend's story ended so tragically, D. We would all like to think that things have changed but doctors are human and make mistakes. I suppose we should all keep rattling their cages!

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  5. m. a friend had a very similar situation to yours, unfortunately, the outcome was dire.

    We're all delighted that you overcame a potentially disastrous situation and turned it into a new career as blogger extraordinaire.

    I don't know what the answer to correct diagnosis and treatment is, but basing medical decisions, not on how the patient feels, but on a patient's feelings is a bit too new age for me. It would be nice if that could be the case ...

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  6. I don't think it is a question of feelings in the sense of emotions, e, but a knowledge of one's own body and that there is something changed or changing.

    I worked for many years with an ENT consultant, before we had all the great equipment that is used now for diagnosing deafness in babies, and he always said 'Listen to the mother. She knows her baby - if she thinks there is something wrong she is 99% sure to be right.' He was wise enough to know that very few people want to have anything wrong with their baby and the same must be true for women and breast cancer.

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  7. Thank you for sharing your story, M.

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  8. Hi J, it was too much of a coincidence to read your post on the rugby players and then to see Kylie Minogue on the front of the paper this morning. If one life is saved by speaking out, it is worth it!

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  9. Thank you for sharing your story, M. Thus far I've been lucky enough not to have any experience of this terrible disease, but you never, never know it seems. One thing I've learnt from yours and other people's stories is always to be vigilant and to be aware of the changes in my body. Thanks again.

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  10. I hope you and yours always remain healthy, Cath.

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