Tag Archives: Inflammatory Breast Cancer

Speaker surprised that cancer patient reads medical textbooks

Lively debate at Centre’s AGM

Dr Lauren Pecorino was the speaker at the AGM  at Paul’s Cancer Support Centre in Battersea, London.

The oldest cancer support centre in Britain, but thoroughly modern in its approach to supporting cancer survivors; offering support by Skype, and its famous Healing Journey course online.

Lauren Pecorino was talking about her book, Why Millions Survive Cancer: The Successes of Science – and this produced a fascinating dialogue between her and the centre’s President, cancer guru Karol Sikora – who always has a patient-focussed reply to questions, although sometimes medics don’t like this!

Lauren focused on big improvements worldwide in survival rates for many cancers and she believes that these improvements mean that “our attitude towards cancer now needs drastic change”.

It was fascinating to hear her comments, mixing research from UK and also the States – something so many medics in Britain ignore (at our peril).  “Cancer is something we can live with,”  she said.  There was no ‘lecturing’, rather plenty of time for the audience to ask thoughtful and pertinent questions, and receive helpful replies.

Five a Day

Five a Day is “a good marketing slogan”, she admitted;  but people could eat more.  Lauren  came out on the side of eating fruit and vegetables, and taking physical exercise.  Although she says there is some evidence that this decreases the risk of some cancers, what was more important was to lead a healthy life, so if we had cancer we were better equipped to survive.

As Principal Lecturer at the University of Greenwich’s School of Science, and a Fellow of the Royal Society of Medicine, she started her talk by saying she was surprised when a patient told her he had read her medical text book;  but many in the audience agreed that today, patients have to be familiar with cancer textbooks, as many doctors don’t have the knowledge when treating us.

When she suggested we should follow Michelle Obama’s example, and plant a vegetable garden;  this gave me a wonderful vision of the present Government doing a U-turn, scrapping plans to concrete over our countryside, and instead encourage as many as possible to plant a kitchen garden.  Dream on!

Sikora mentioned visiting Laos, where medical care was basic, and chickens wandered around underfoot – yet the care given to patients by supporting families was exemplary.

Ethnic Diets

One of the audience asked about ethnic diets – was there any particular good/bad cuisine?  Lauren thought not, although mentioned that the Mediterranean Diet was probably acknowledged to be the healthiest.  It came out that only about 8% of Italian food shopping takes place in a supermarket!

As usual, the Centre offered excellent food as part of the AGM, and it was lovely to see beautifully presented, healthy food – with lots of emphasis on raw vegetables (although there wwwwas chocolates for greedy visitors like me!)

Another questioner asked about Organic food, and it came out that there is little research on this – possibly because this food is mostly grown by small farmers, without the mega-budgets of the supermarkets.  Information on stress was another ‘popular’ question, and again not much evidence, but Sikora said it couldn’t help when people were recovering.

What the Centre offers

The Centre’s dedicated team under Petra Griffiths were warmly congratulated, and mention was made of their unique Home Visits service, where patients too ill to travel were visited at home, for everything from support, to wonderful massages and other therapies.

Macmillan had a last funded the Information Centre at St. George’s Hospital, run by Beverley van der Molen, who manages to split her time between St. George’s and the Centre,

Last year there had been 2,044 counselling sessions and therapy sessions booked, 69 attended training courses, 977 well-being educational sessions, and if that isn’t enough, Bridget Cambridge, the Development Officer, is about to tackle the winter Nice to Cannes Marathon in aid of Centre funds (very badly needed).  If you want to sponsor Bridget you can donate by text:  PCSC11 followd by the amount (up to max. £10) to 70070.

The AGM was, as usual a lively event, with lots of audience participation;  it was fun seeing and talking to old friends such as Dani Bannerjee (the first Trustee I ever met from the Centre), Claire Morgan (who helped me write my book on Inflammatory Breast Cancer), and the indefatigable Lynn Leadbetter, who works tirelessly to raise funds for the Centre.

Paul’s Cancer Support Centre:  www.paulscancersupportcentre.org.uk

22, York Road, London SW11 3QA   020-7924 3924

 

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What to do about 'The silent cancer killer'

Inflammatory Breast Cancer Association

Image via Wikipedia

The video that made

 

me write the book

 

Some time ago the publishers, Anshan, saw this video

 

Consequences

They were so concerned they wrote to me, asking if I could write a book for those with Inflammatory Breast Cancer (IBC), explaining

  • the processes that happened to all breast cancer patients
  • highlighting the differences for IBC
  • what happens during treatment.

Simple things, in plain English, that might help those with any breast cancer, particularly IBC, understand what was going on.

Normally they publish serious medical books written by eminent doctors.  But they had had great success with a book written by a patient about dealing with pain – and realised there were patients out there who didn’t want all the technical jargon, but just wanted to know about the ‘little’ things doctors brushed aside.

Although it wasn’t a ‘happy’ subject, the book almost wrote itself.  All I had to do was remember what happened to me when undergoing treatment – and in particular what puzzled me – rather than what the doctors expected would be of interest to me.

Every patient is different, but there are so many little things we breast cancer patients – and in paticular those with IBC – want to know.

I finished the book sitting up in bed waiting to have an operation.  I had got on with the writing as I didn’t think I would be able to sleep.   But at 3 am I wrote ‘The End’ and went off to sleep like a baby.  The nurses said they had never had such a relaxed patient, and the operation was a success!

More details from publishers: Enhanced by Zemantahttp://www.anshan.co.uk/ecomcart/

Is this book on Inflammatory Breast Cancer any use? Or will it be useless?

If you are going to spend your hard-earned cash on

this book, will you like it?

Or find it useless – flippant – superficial?

Well, if you are a patient, I hope you will find helpful, useful information – with some humour, in this layman’s book on Inflammatory Breast Cancer.

And if you are one of my favourite nurses – you will have a wry smile at the way I talk, and thank heaven not all patients were like me!

This is written from a patient’s viewpoint.  So don’t be shocked by the nicknames I gave some of my medics.  Or the fact that I litter the book with names of commercial companies that made clinically-trialled products that helped me.  Delicate souls will be horrified by the use of company names, but doctors and nurses have no hesitation on giving out names of drugs, and those are made by companies who measure their profits in BILLIONS – not ordinary millions.  So why shouldn’t we be given names of products that can help with the awful side effects of these drugs?

If you are a doctor, and treated as a Higher Being,  I might not give you due deference you expect  – especially if you were ‘Dr. 30-second’ or ‘Pompous Professor’.

And if you like to blind us with science, you won’t like the 17 page Glossary.   I have just been reading a book ‘designed for patients’ which thinks it can get by with an eleven- yes, 11 – word Glossary.

If you are a nurse, this is NOT a medical text-book.  You will scream at the way I re-name medical procedures, and question the way You are taught to treat us.  And ask why a Multi-disciplanary Team NEVER includes the most important member: the patient.

Cancer is a frightening condition;  Inflammatory Breast Cancer more so than many.  So you must excuse us if we get stroppy, and use black humour to keep us going.

You and the Team are there to give us the facts – I tried to remember what I was feeling at the time – and the sometimes silly things that were bothering me, when I should have reacted differently according to text-books and nurses’ training.  But then we are human, so sometimes don’t behave the way we are told to.

And TLC is sometimes totally forgotten in medical training – but we respond to this far better than being told  “YOU are only a patient”.

I have NO medical training, but justify writing this book because I can call myself an ‘Expert Patient’.

Has this been endorsed by a British Hospital? Whew!  After comments about some hospital treatment I received, and after the things I have said about superior treatment in European hospitals –  not B  likely!

But if you like Christine Clifford Beckwith’s black humour and her take on situations cancer patients find themselves in (well, you’ve got to laugh or else you would cry), then I hope you will like this book.

http://www.amazon.co.uk/Inflammatory-Breast-Cancer-Explanation-Support/dp/184829039X/ref=sr_1_1?s=books&ie=UTF8&qid=1283185964&sr=1-1

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Easy-to-read, compassionate guide to Inflammatory Breast Cancer

INFLAMMATORY BREAST CANCER.

VERITE REILY COLLINS

KEY SELLING POINTS
  • Compassionate guide for suffers of rare cancer.
  • First book on the subject.
  • Easy to read, serious issues treated with humour.
BOOK INFORMATION
ISBN: 9781848290396
Pub Date: August 2010
Format: paperback
Extent: 144 pages
Inflammatory Breast Cancer (IBC) is a highly aggressive and thankfully rare type of breast cancer, which is not yet widely recognised both by the public and the medical profession.

When a patient presents to her GP, there is often a misdiagnosis in the first instance. This is because the symptoms include swelling, redness and heat in the breast, but often no discernible lump. Consequently the condition may be only diagnosed as a less serious dermatological problem.

The author is herself a survivor of breast cancer and can therefore write with expert knowledge and experience. She discusses with compassion, insight and humour everything a person ought to know about IBC –

initial fearsdiagnosis – treatmentoperation – post-op care. She discusses the different forms of treatment, and also the side issues – where to find support from carers and friends, what to eat, how/where to go on holiday, etc.

A valuable resource of information both for the patient and the professionals involved.

Of course the book also tackles the scientific and medical issues and the various drugs used in the treatment, but Verite writes throughout in a clear, simple style that enables easy understanding of the more complex details.

There are many books on breast cancer, but this is the first to specifically discuss inflammatory breast cancer. It is a guide book that will be immensely valuable to IBC sufferers, their carers, family and friends, and to GPs and oncologists around the world.

CONTENTS; 1. Introduction 2. What is Inflammatory Breast Cancer? 3. Diagnosis 4. Help – what should I ask doctors and nurses? 5. Where do I find sensible website info? 6. Operation 7. After your op – returning home 8. Treatment after the operation 9. How will I feel? 10. Chemotherapy 11. Radiotherapy 12. Hormonal drugs 13. Handling side effects from chemo and hormonal drugs 14. Complimentary and alternative therapies 15. Why have massage? 16. Now I want to know – where to find help 18. Carers and friends – how they can help 19. Food, weight gain/loss, what can I eat 20. Take a holiday – but where/how? 21. Doctors are humans – how to deal with them 22. Having fun – where to go for information on what’s good 23. The help minefield 24. Regaining my life – and handling change 25. Contacts, organisation, charities, international agencies and other helpful people 26. Index
This is what the publishers say – I say that this book should be issued with a health warning, as I AM NOT MEDICALLY QUALIFIED.

But I wrote the book from the heart, trying to tell readers what they MIGHT expect, so that treatment didn’t come as a shock.  But also, where I could, suggesting ideas and products that myself and others had employed, to try and make the treatment experience easier.

When I was treated, I found that the Internet was incredibly helpful – so I have tried to include as many approved web addresses as possible, to make it easier to find things out.  Readers can use the book as a ‘shopping list’ of contact information.

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New book on Inflammatory Breast Cancer

October is Breast Cancer Awareness Month
Flickr

There are many books on breast cancer, but this is the first to specifically discuss inflammatory breast cancer. It is a guide book that will be immensely valuable to IBC sufferers, their carers, family and friends, and to GPs and oncologists around the world.

http://www.anshan.co.uk/pages/anshan03.html

Inflammatory Breast Cancer (IBC) is a highly aggressive and thankfully rare type of breast cancer, which is not yet widely recognised both by the public and the medical profession.

As it is such a rare form of Breast Cancer

1.  The book is being written in layman’s language, for patients themselves.

2.  I am NOT medically qualified, but had breast cancer. Once treatment is started though, the treatment path is very similar. The publishers wanted a  book written from a patient’s view – not the official language that might be difficult for us to understand.

3.  Every patient reacts differently to treatment, but many aspects are common to all.

4.  The book covers  conventional treatment, with clinically-trialled drugs, NOT alternative treatments. But is writtten to show everyone that although this diesease is dire, there is hope.

The publishers, Anshan, say

When a patient presents to her GP, there is often a misdiagnosis in the first instance. This is because the symptoms include swelling, redness and heat in the breast, but often no discernible lump. Consequently the condition may be only diagnosed as a less serious dermatological problem.

The author is herself a survivor of breast cancer and can therefore write with expert knowledge and experience. She discusses with compassion, insight and humour everything a person ought to know about IBC –

  • the patient’s initial fears
  • the diagnosis
  • best place for treatment
  • the operation
  • postop care

She discusses the different forms of treatment, and also the side issues – where to find support from carers and friends, what to eat, how/where to go on holiday – a valuable resource of information both for the patient and the professionals involved.

Of course the book also tackles the scientific and medical issues and the various drugs used in the treatment, but Verite writes throughout in a clear, simple style that enables easy understanding of the more complex details.

CONTENTS; 1. Introduction 2. What is Inflammatory Breast Cancer? 3. Diagnosis 4. Help – what should I ask doctors and nurses? 5. Where do I find sensible website info? 6. Operation 7. After your op – returning home 8. Treatment after the operation 9. How will I feel? 10. Chemotherapy 11. Radiotherapy 12. Hormonal drugs 13. Handling side effects from chemo and hormonal drugs 14. Complimentary and alternative therapies 15. Why have massage? 16. Now I want to know – where to find help 18. Carers and friends – how they can help 19. Food, weight gain/loss, what can I eat 20. Take a holiday – but where/how? 21. Doctors are humans – how to deal with them 22. Having fun – where to go for information on what’s good 23. The help minefield 24. Regaining my life – and handling change 25. Contacts, organisation, charities, international agencies and other helpful people 26. Index

Order from

http://www.anshan.co.uk/pages/anshan03.html