Providing peer support for New Zealanders impacted by hereditary breast and ovarian cancer
Positive Results (2010) by Joi L. Morris and Ora K. Gordon
Reviewed by Julie
The first time I read this book I was hungry to learn more about what my BRCA positive status meant. I lapped up every word and really appreciated the comprehensive information it contained. I was left in no doubt that my BRCA status was a serious issue – one I needed to manage rather than ignore.
Reading it a second time for this review, I found the information a bit overwhelming. The difference, I suspect, is that I’m still dealing with a problematic breast reconstruction, so perhaps I’m a bit jaded and the stage of your journey determines which resources are the most helpful at any given time.
There is no doubt these authors have undertaken a huge amount of research, comparing many complicated and often contradictory scientific research papers and turning them into an easy to understand textbook.
A lot more research has been done since the release of this book, but it doesn’t appear to have dated the information it contains. I spent hours googling the internet for an article about other BRCA cancer risks (which you’ll be able to read in our next newsletter) only to find virtually all the answers in this book when I read it later!
Part one explains genetics, genetic testing and its implications, and what to tell your children. Part two explains the risks associated with a BRCA positive mutation, what we can do to modify our risk in terms of diet and exercise etc, and has a specific chapter on the risks male BRCA carriers face. Part three explains all the risk management options.
The information is interspersed with Morris’ own story and those of other people facing similar issues.
One of the biggest dilemmas for any BRCA positive carrier is making sense of the general risk statistics vs personal risk, or as one woman in the book says: “If you tell me 50% risk of breast cancer I can live with that. If it’s 80%, I’m having prophylactic surgery. So which is it?” Morris does her best to answer this question, but the future belongs to more individualised risk assessments that can only be determined by further scientific studies like the one currently being done at Otago University.
Positive Results is an essential handbook for anyone who is working in a medical or support service dealing with BRCA mutation carriers.
For those personally facing hereditary breast and ovarian cancer risks, this book will help redefine your future.
The Breast Reconstruction Guidebook (2012) by Kathy Steligo
Reviewed by Julie
You would have to spend hours trawling the internet or meeting with your surgeon to cover all the topics Kathy manages to cover in this 250 page book.
It includes answers to questions most of us would probably never think to ask and it is a great book to hang on to and refer to repeatedly in the lead up to reconstructive surgery.
It starts with a simple explanation about breast anatomy and how cancer starts and the different types of breast cancers.
One of the facts, which I’ve read a few times in different books now, was crucial to my decision to have prophylactic mastectomies. Most breast cancers grow for 8 to 10 years before they can be seen by mammography or felt as a lump, during which time they often spread to other parts of the body which ultimately makes them difficult to treat.
Kathy, who has undergone breast cancer and reconstruction twice, explains all the post-mastectomy options (including non-reconstruction) in a balanced, informative and reassuring way.
All the subtle variations of the main types of surgery are discussed, with detailed explanations of each process and comparative recovery times. There are plenty of anatomical diagrams and encouraging before and after photos.
The factual information is interspersed with quotes from real people dealing with each topic, which makes the facts more personal and relatable.
There is also a very good chapter on what to do as you prepare for surgery.
This book is very unbiased and I felt armed with information and reassurance to boost my confidence while making a very daunting and difficult decision.
Talk to the Headscarf by Emma Hannigan (2011)
Reviewed by Julie
As a woman contemplating elective surgery to reduce my BRCA risk, I baulked at the idea of reading a book about a woman who did just that but got cancer anyway. But this book kind of landed in my lap so, feeling obliged and curious enough, I decided to read it. I’m so glad I did.
Emma is a delightfully upbeat Irish woman who, at the time of the book’s publication, has racked up an impressive score – Cancer 0: Emma 6.
She describes the process of discovering that she has a BRCA1 mutation and the sleepless nights and specialist consultations that follow. Within a year she has surgery to remove her breast tissue and ovaries.
When her breast tissue is subsequently analysed the pathologist finds cancerous cells have been forming in a particularly undetectable part of her breast for up to five years. She is only 33.
There is now no doubt in Emma’s mind that she has dodged a bullet by having the surgeries.
What she does not to know is that there are many bullets still to come. In the space of three years she is diagnosed with metastatic cancer six times. (In fact, if you log onto her website www.emmahannigan.com you’ll see that the number increased to eight after this book was published.) Emma undergoes all the necessary treatments and wins each round.
What I love about this book is that Emma is so funny and honest (in a similar tone to Bridget Jones’ Diary) and has a fantastic recollection of her journey, all of which make it hard to put this book down. She manages to educate and entertain at the same time.
The tips I gained from this book are:
- You’re never too young to take your BRCA risk seriously
- Find medical people who really understand your needs and will fight for you for as long as it takes
- Being feisty and funny is the best way to tackle bad odds
⇣ Drag elements to your Custom Footer Container ⇣