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1 Book and DVD reviews 100 questions and answers about mesothelioma (2013) Pass HI, Hessdorfer M, Lake SE, and Lake SA. Sudbury, MA: Jones and Bartlett Publishers, rd ed. 149pp. ISBN Average star rating 4.4 (out of 5) Macmillan Cancer Support, 89 Albert Embankment, London SE1 7UQ

2 Reviews are written by people affected by cancer and are their personal views and not the views of Macmillan Cancer Support. These reviews, and the publications reviewed, should not be relied upon as a substitute for specialist professional advice tailored to your situation. So far as is permitted by law, Macmillan does not accept liability in relation to the use of any information contained in this review or publication or third party information or websites included or referred to in it. For more information about the review process and how to get involved, go to the end of this document. This book would be useful for anyone; it is a complete guide to all situations faced by someone diagnosed with mesothelioma or someone who is close to them. Importantly, it also gives very useful interesting information on how the disease progressed over time and is a useful guide for anyone whose relative has worked in an environment which may give rise for concern. I found it very easy to follow. There is an excellent glossary, but the thing that stands out for me is the information in the page margins; academic books tend to do this and I feel it is a great plus. It is a marvellous way of summarising the information on the page without a tedious trek to a glossary at the back of the book. The cover tells you all you need to know at a glance, the photos lend sensitivity, and it leaves a potential reader in no doubt as to what that they will gain from reading the book. I like the fact that it not only gives information about coping and financial issues, but also discusses and explains medical terminology; this in itself helps when navigating the medical side of things with staff. Sometimes it is very baffling for people when they are just given laymen s terms for procedures; this extra information gives a feeling of security, and the confidence to speak with medical professionals on their own terms. Having some information regarding the history of the disease is also interesting. It does lean toward the USA, so some of the information may not be relevant to other countries. I was most impressed with this book from a diagnostic and human spirit angle. It offers support and very useful facts about mesothelioma. I would most certainly recommend it to anyone who finds themselves in this situation and also to anyone who perhaps has a family member who may have been exposed at work it gives good information on preparing yourself in the event of diagnosis. I felt very much clued up on all aspects of this disease after I had read it and I shall certainly be keeping it on my bookshelf my husband has worked in industry all his life. Friend of mesothelioma patient (46-55) (June 2014) 2

3 This book covers all the questions that patients, carers, family, friends and health professionals may have about mesothelioma. My friend's family came to me for information and help as I have been involved with cancer for over 20 years. I knew little about mesothelioma and spent some time researching it on reputable websites and via friends/colleagues who put me in touch with leading experts. This book answered all of our questions about the cancer itself, including: understanding the illness, what it is and how it develops; why it takes many years before it shows itself; what treatments are available and how they work. It also backs up the sorts of questions I advised my friends to ask, particularly about clinical trials. It is just a pity that the information about compensation is not relevant for UK citizens. I gleaned some useful advice, for example: make sure that a member of the support team is present when seeing the treating physician; make sure that you are introduced to each member of your healthcare team, note their names and even ask them to describe their role and provide their contact details; remember that you can ask any one of them to explain, in private, anything you don't understand; make sure your preferred contact details are given; be willing to travel to obtain the best advice and to participate in cutting edge treatment if appropriate. It does state that the patient may qualify for clinical trials and that these will be discussed in addition to the standard therapeutic options. This is not quite true here; clinical trials are not routinely discussed nor offered. Patients need to know ask for a referral to a centre where they are available, rather than relying on being told about relevant trials. I would encourage anyone newly diagnosed to ask about specialist centres rather than be treated locally as specialist knowledge is required to treat the symptoms. It is extremely well laid out. I am used to writing lay summaries and reviewing research applications from a lay perspective and feel that the language is appropriate for a wide range of abilities. Terms are well explained and also highlighted in the margins; this is particularly useful when trying to find a piece of information to relay to others, or recapping what you have just read but haven't quite taken in. The glossary is excellent every book with this sort of information should have one and the index is as comprehensive as it could be. The cover describes the contents clearly. I like the fact that there are photographs of real people on the cover, fitting the age range of patients. However, the cover does mention legal rights; this needs to be addressed for patients here, for example with the addition of a leaflet with information about compensation for UK patients or their family. I have not come across a UK book on the subject that is so comprehensive. My understanding of this disease is so much better since reading this book; I knew what it was but did not understand any details so I was out of my depth when my friend's family approached me. The internet gave me lots of useful information, but this is all in one place and extremely comprehensive. I wouldn't hesitate to recommend it to others for the information about the disease but would need to point out clearly that it is an American book and explain about the different compensation and health care system. I would really like to see this book rewritten with NHS information, the 2012 compensation details for patients in the UK, and English spelling. Close friend of peritoneal mesothelioma patient (56-65) (July 2014) 3

4 This book is most useful for carers and family, who are likely to be managing and handling the news, and health professionals, who do need to be better informed about rare cancers. It is not recommended for the patient because, more often than not, they are psychologically disturbed by the diagnosis and prognosis. There are useful descriptions/explanations of most procedures/effects at all stages of the journey. The patient subject of the book lived for 10 years with mesothelioma and various co-morbidities (in the book under prognosis 6-9 months is suggested). If patients were to experience longer survival periods then many aspects of the book s detail would become more useful. It is easy to understand and has the additional benefits of margin comments that explain and clarify technical terms and procedures, and a glossary at the end. The language is technically good and carefully adapted for patients and carers. The tone is caring and sympathetic. To the expert eye there may be some discrepancies, but to the patient/carer reader, the content is detailed and thoroughly set out. The book is smartly presented and clearly set out by page, paragraph and section. It is well bound and uses good quality materials. There is no need for illustrations. I like the good and detailed commentary from the experienced authors, together with the meaningful narrative from the patient s wife and young daughter. It is very useful and perhaps unique to have such a detailed resume of causes, effects, procedures and the course of the illness through to death and beyond, viewed from the experience of medical experts, patients, carers and relatives. It also covers psychological aspects, financial matters and insurance. The coverage of peritoneal mesothelioma is also thorough this is not so well known in the UK. However, it does not relate to UK procedures and processes; this is understandable as the American system and approach are quite different. There is greater emphasis on the expert specialising in mesothelioma, referral for second opinions, centres of excellence and specialisation even across the states. With an insurance system that picks up the high costs of speciality and specialised treatment centres, the costs of travel and staying away from home are expected and covered. The American system encourages consultants to refer for second and third opinions and specialisation is at a high level. Specialist surgical and radiotherapy procedures and drug trials and the associated facilities are of a high level and not necessarily replicated in the UK. There have been greater advances in techniques, facilities and equipment, not available to the NHS. There are numerous mentions of family doctor involvement, doctor's relationship with the family and being a focal point of contact. Sadly we seem to have lost that in the UK. Social worker involvement is also more active in the US. One interesting aspect is the message that comes out of this edition, written of course by the same Consultant and Nurse Specialist, of advances in knowledge, research, types of treatment and changes, which do point to better prospects for those with rare cancers such as mesothelioma. In the meantime the prognosis is still poor, both in the US and the UK. It is a rare cancer that requires much increased research funding and attention, particularly in the UK. 4

5 It is not easy to see this book being made available for sale in the UK and it is of course not written for that purpose. I would probably recommend it, but it may mislead the UK patient and carer, even to the extent of raising false hopes. However it is of great value in highlighting the practice and possible advantages in seeking second and even third opinions and centres of specialisation. It might be useful to have it available in UK Mesothelioma Specialist Centres to enable staff to be able to take on board a wider perspective and improve knowledge and understanding. It does enable the UK patient/carer to question and perhaps understand better consultants and nurses in the UK. It is also useful on the emotional aspects. It may also be a useful information resource for UK asbestos disease support groups. Carer for mesothelioma patient (Over 75) (June 2014) This book sets out the medical aspects of mesothelioma very clearly. Mesothelioma is not a well-known cancer and the authors explain the symptoms very well and provide information on which to base treatment decisions. It is laid out in a matter-of-fact way, using comments from the wife and daughter of a mesothelioma patient to highlight points. These would be useful to help someone understand the day-to-day effects. Having had experience of other forms of cancer, I found it easy to understand; the technical aspects are explained very clearly. The no-nonsense approach allowed me to read the book without becoming too emotional. I had a very short time with my father but would have liked to have read this book then. However, as with all American books, much of the contact information and details of care choices are irrelevant, as are the references to insurance. In this area, there is no option but to go to the nearest specialists. Carer for father with mesothelioma (56-65) (April 2014) This factual and interesting book provides useful insights for patients and carers and detailed medical information for health staff. The information on treatment options and side effects is the most useful section for anyone who has engaged in treatment. It is small enough to read while out and about. The content is in a logical order and the Q&A format makes it easy to use and refer back to. It is easy to understand and I like the summary on each page. It is written in a sensitive way and enhanced by input from someone who has cared for, and lost, someone with mesothelioma. Overall, I enjoyed reading it in spite of my initial fears that it might upset me. It went into more medical detail than I needed, but it s written for a wide audience. There is sufficient information an all aspects for it to be useful to all who choose to read it. However, it is American, so some information is irrelevant. Carer for husband with mesothelioma (46-55) (May 2014) 5

6 The following reviews are of the 2 nd edition. This book is very informative. Carers and patients will benefit from reading it, as will health professionals. It is very well laid out and explains things in more detail on every page. I like the way it is written in a way that I could understand. It is targeted at US patients and it would be a good idea to make it more UK friendly. However, the information and layout is very good and doesn t need changing. Living with mesothelioma (36-45) (March 2011) This book would be useful for anyone meeting this disease for the first time, who wants to learn the facts from one place. It is a useful guide to dealing with the everyday experience of living with this disease from symptoms, through diagnosis, to treatment and management of symptoms. It provides excellent explanations of the various medical procedures and treatments that a patient may undergo, depending on the prognosis, and provides a full and detailed account of the options. It would be a very good book to read immediately after a first consultation with a specialist to enable patients to ask the 'right questions of their medical team. It is a very readable book and easy to understand. Technical words are explained well and the pronunciation of some of these difficult words makes it very useful to help patients converse with medical staff in an informed way. The language used is appropriate for the patient who has an inquiring mind and wants to know everything about their disease. A very helpful index allows you to look at specific things quickly, which is very important when you need answers on a daily basis. It is easy to handle, fits in the average handbag for reference and can be read easily in bed! There are no graphics; they could be useful in explaining the anatomy of the chest and reinforcing some of the information about chemotherapy drug regimes. There are no mistakes immediately apparent, but, the US organisations are unhelpful here. An edition listing relevant British organisations and omitting irrelevant information, such as US medical insurance and legal processes, would be useful. This concise little book is a valuable resource on mesothelioma. It is comprehensive and authoritative and would have saved us many fraught hours searching for information on the internet, when I was first diagnosed and at the beginning of my journey with mesothelioma. It is patient friendly at a highly emotional time and provides answers to some of the questions you forget to ask the doctor. Susan Vento's account of her experiences adds a personal dimension to the academic text the perfect guide to mesothelioma. Mesothelioma patient (56-65) (October 2009) 6

7 This is a comprehensive resource covering many aspects of mesothelioma, including symptoms, treatments, different stages and how both patients and family members alike may struggle to cope with the diagnosis. It also makes the patient aware that legal action may be an option if they acquired their illness due to asbestos exposure. The book has a wonderful tone throughout and is able to present hard facts about an aggressive cancer in an easily understandable way. It is very easy to understand; this came as a real surprise as other information or books I had found on this subject seem more suited to medical professionals. I commend it for being so understandable to all and I am further impressed that this has been achieved without missing out any of the issues or any of the more complicated medical aspects of mesothelioma care and treatment. It is well laid out and a good, lightweight size. The text is neither too big nor too small and the page size is ideal. Medical books are often very complex and it is easy to get swamped or lost in a page that has a lot of text; this, however, was not, which makes it more readable for lay people. It could have touched more on the drug Alimta (pemetrexed). This drug has been proved to be effective and a less toxic alternative. While its use is still debated in many places I think all patients would view the possibility of extending their life (even if only for a few months) as very worthwhile and something that they would not put a price on. This drug also offers very effective pain relief for those with terminal cancer and therefore all mesothelioma patients should be made aware of it. I found this book really useful and I would recommend it to all patients, family members and carers. I truly wish this book had been available when my mother was diagnosed. I could not understand what was happening or why it was happening to my mum who had always been so active and health conscious. I asked my dad and my sister what was wrong with her and was given a brief description but also warned not to ask her questions for fear of upsetting her. This put me in a very difficult position; I was too afraid to ask anyone what was happening or why as no one could answer me without struggling and displaying their obvious deep hurt and upset. I wanted answers that my family could not provide and I found many medical books and journals challenging and confusing. This book should be presented to every family who has a member diagnosed. If not the shock and uncertainty of this quickly accelerating cancer will be too much to bear. My mother went from perfect health, through months of testing confined in hospital due to her illness, then months of chemotherapy, surgery, and palliative care. Sadly, my mother died just five months after being told she had mesothelioma she was only 42. This book has the ability to really help those who are struggling to come to terms with this terrible cancer and to allow answers that many may like me are afraid to ask but are desperately seeking. It can truly help prepare patients, family members and friends for the many likely outcomes and perhaps to be less scared. I commend this book and I am grateful that it has allowed me to fully understand what happened and why; it has given me a sense of closure. Family member of mesothelioma patient (Under 25) (April 2010) 7

8 This book has extremely comprehensive information that is useful for all patients and their families. The information on treatment is valuable and detailed. The book also covers financial and legal topics that most people may not consider when dealing with asbestos-related illness. It is extremely easy to understand, with clear terms and explanations in the margins. This book is valuable for people who are frightened and overwhelmed by a shocking diagnosis and who may not have the understanding or confidence to talk to professionals straight after diagnosis. I showed it to my family and their first question was "Why isn't there something like this to be given to everybody upon diagnosis". I would like to see this book freely available to all mesothelioma patients (with appropriate legal and support information for the UK). I would also like to see it available in doctor's surgeries; our family GP had no experience of mesothelioma. Daughter of mesothelioma patient (26-35) (February 2010) This is a good guide as to what to expect following diagnosis. There is good detail about treatments. It is probably too detailed for patients, who may struggle with large amounts of information following diagnosis. It is nicely laid out there is not too much text to a page and it is good to have the definitions in the margins. It is too American and slightly too clinical in parts. There is no mention of pleural thickening as a condition in its own right and the latency period is described as years but can be years. Mesothelioma is an incurable disease and so the section dealing with recurrence is confusing and likely to bring false hope. As it stands, I do not think it would be ideal to recommend to UK patients. Solicitor specialising in mesothelioma (26-35) (January 2010) I lost my father to mesothelioma in This book has answered questions for me. It is very educational and will be useful at diagnosis and all the way through treatment. It answers every question one would ask after being diagnosed. It is one in a million and I will definitely recommend it if I am asked for any information. I went to my local library to try to find out more information but they didn t have any books about it, which I thought was appalling. It is a very, very good book and one for the bookshelf to turn to when needed. Daughter of mesothelioma patient (26-35) (October 2010) 8

9 This book provides easily understood information on the condition. It is most useful for the early stages, when trying to understand and cope with the diagnosis. It answers questions that weren't always covered by my health care professionals in the early stages. Even now I learnt a few new things about the disease, and it would help anyone to ask the right questions at a time when they can't think straight, having been shocked by the diagnosis. The downside is the description of care and treatment; these are very different in the USA. Mesothelioma patient (46-55) (October 2009) This book will certainly help patients, carers or family member understand this distressing disease and how hard it is to diagnose. I think it would be of greater benefit for carers and relatives. For example, it explains the serious breathing issues and why fluid builds up in the lungs and has to be removed. It helps those close to the mesothelioma patient understand how debilitating, distressing and scary this illness is. And it may help relatives to become more supportive of the patient. It has a lot of technical detail, but doesn't lose its human touch and isn't too long. It is very clear and logically written and the text flows very well. It is easy to understand and very readable. Any technical terms are explained in the margins. I am not a medical specialist but I understood everything. It is very well laid out and it is easy to dip in and out of the chapters. You could read it from start to finish, or pick it up at a topic you need to know about. I feel it gave me all the information but without pages of irrelevant text. This is not a disease that is talked about very much. A book like this is a muchneeded resource and helps raise awareness of mesothelioma. It would be good to have a book targeted at the UK. Although asbestos is the link to developing mesothelioma, the book spells out that the role of smoking or even genetics play a role. It also explains clearly that mesothelioma is not as clear-cut as other cancers, and that it can touch many surfaces therefore making it harder to diagnose and treat. It may be slightly discouraging for the mesothelioma patient themselves, because it becomes clear towards the end of the book that, unless the disease is caught very early, there is very little that can be done, and that much more research is required. Some of the text about American services is not relevant to the UK. It made me wish that resources such as specialist mesothelioma centres were available in the UK. However, I still think it has a great deal of useful information about mesothelioma. One of the great problems my mum and I had was finding reliable information. It was easy to find out general facts, but this book goes into much greater detail. Even the medical profession has been quite vague about this disease, and this book gives you the detail that you desperately want to know. Family member of mesothelioma patient (46-55) (March 2010) 9

10 I would have found this book especially useful when the diagnosis was first made. All the information I needed about what mesothelioma is, the symptoms, and the treatments available is covered, which is much more convenient than trying to research it on the internet. The information is presented in such a way that you can refresh your memory on a specific question without having to read the whole book. I found it very easy to understand. The language used is appropriate for a lay reader and technical terms are highlighted in the text and explained very simply in the margins; this is very useful and preferable to having to turn to the glossary. The size of the book makes it convenient and easy to handle. The cover is hard wearing, interesting and informative and tells you exactly what the book is about. I like the way the contents of the book are listed in contents section and the questions I wanted to ask are answered so concisely. Some of the information is relevant only to the USA, e.g. Q14-16 and the information in Q64 about clinical trials. I'm not sure that UK patients have the choice of taking part in such trials unless the medics decide they are suitable. Carer of mesothelioma patient (66-75) (October 2009) Looking back, this book would have been useful to me when I went through the mill in 2002, especially in providing pointers to what I and my carers should have been doing. To that extent the questions are spot on. The specific detail is different and continues to evolve. It isn t the sort of book you would want to read in one sitting so the Q&A format works well and makes it a good reference book. However, it is not suitable for UK readers without a major rewrite of certain sections. Those about causes, effects and diagnosis are useful and greatly aid understanding, especially as the author has tried hard to use layman s terms. However, those on support and politics are US specific. Understanding mesothelioma is interesting but won t help a patient move forward. Support and treatment options will, but they are different here. Part 1 (The basics) contains much good material but too much speculation on possible causes. In Q4 (What are the risk factors) the section on the Simian virus is too detailed. I don t believe its relevance has been proven so why include it, except as a passing reference. Sue s comment is very apt. In Q5 (Causes), there is not enough emphasis on the fact that asbestos is ever present in the environment, despite what politicians say. It is known that UK schools have levels of asbestos fibres in the air many times greater than the accepted limit. Ten per cent of mesothelioma patients have never worked with asbestos. I believe the UK average fibre count per gram of dry lung tissue is around 500,000! This should be pointed out. I feel strongly about this because my count was 850,000, which is still small compared to people who work with asbestos (counts of million, I believe) and I have been unable to get compensation because I cannot prove where my exposure came from. The ten per cent need to know this. This may not apply in the US. 10

11 Sections 5-8 are very good. They are clear and easy to read for the layman. One or two bits may need altering to suit the UK, but, in the main, they are fine. Sections 9 and 10 are good but need a UK slant. Each country has its own culture for the provision of care for terminal diseases. Diagnosis is probably the most controversial area, especially in the UK, because of the innate difficulty of diagnosis, the lack of expertise and the enormous variation across postcodes. However, describing the processes involved is good; it lets people know what to expect so they can ask questions if it doesn t. Qs14-16 discuss choosing a doctor and getting a second opinion difficult in the UK. I can think of at least one victim who would verify this if she was still alive. In fact, this is precisely why she isn t alive! This is what I mean about rewriting to be UK specific. It also needs to be practical advice not just the opinion of a medical person expressing how things should work, because that often doesn t reflect reality. It would help if more than one patient was cited. Bruce is not typical but neither am I and this is part of the problem in dealing with the beast. Everyone faces different choices at different stages. Few paths are the same. A range of practical experience would be more useful at the very least a patient having an EPP, one having chemotherapy plus radiotherapy and maybe one who tried an alternative route. I appreciate this might be difficult to achieve. Mesothelioma patient (46-55) (September 2009) This book is useful for medical students, patients who want to know more, carers and relatives and specialist cancer nurses. The topic is handled in a logical order and the language is appropriate. However, it is very American. Carer and retired nurse teacher 11

12 Further information Why does Macmillan Cancer Support review books and DVDs? We use reviews to help us compile a list of suggested cancer books, the Macmillan Core Book List. Cancer information centres and public libraries can use this list to select appropriate and relevant books for people affected by cancer. We also add the reviews to the Directory of information materials for people affected by cancer so that people affected by cancer can see what others in a similar situation think about a book. You can see details of all the books reviewed in the Book and DVD reviews listing. This document has links to all the reviews. We recruit most of our reviewers through the Cancer Voices Network, people affected by cancer who have signed up to help Macmillan Cancer Support in a number of ways. Cancer Voices are a vital part of our book review process; over 1,000 Cancer Voices have written over 3,000 reviews of 270 books and DVDs. If you are affected by cancer and would like to review books or audiovisual resources for Macmillan Cancer Support, you need to register as a Cancer Voice. You will then receive details of books and DVDs as soon as they become available for review. You can view the current opportunities here. If you are a health professional who would like to review books for us, please Sue Hawkins, Information Materials Researcher, Macmillan Cancer Support. Information and support for people affected by cancer If you are looking for support to help you live with cancer, you may wish to contact one of Macmillan s cancer information and support services. Or you can call the Macmillan Support Line free on (Mon-Fri 9am 8pm). We have an interpreting service in over 200 languages. Just state, in English, the language you wish to use. If you are deaf or hard of hearing you can use textphone no or Text Relay. You can also us using the website enquiry form. Alternatively, visit our website. Feedback If you have any comments, please Sue Hawkins, Information Materials Researcher, Macmillan Cancer Support. 12

13 When you have cancer, you don t just worry about what will happen to your body, you worry about what will happen to your life. At Macmillan, we know how a cancer diagnosis can affect everything and we re here to support you through. From help with money worries and advice about work, to someone who ll listen if you just want to talk, we ll be there. We ll help you make the choices you need to take back control, so you can start to feel like yourself again. No one should face cancer alone. For support, information or if you just want to chat, call us free on (Monday to Friday, 9am 8pm) or visit macmillan.org.uk Macmillan Cancer Support, July Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SCO39907) and the Isle of Man (604). 13

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