Interview with author of new breast cancer guide
Today on Journeying Beyond Breast Cancer, I am interviewing Cara Novy- Bennewitz author of Diagnosis: Breast Cancer: The Best Action Plan for Navigating Your Journey.
JBBC: Congratulations on the publication of your wonderful new book, Diagnosis: Breast Cancer. As I read your book I kept wishing this had been available to me at the time of my own diagnosis and I believe this was the very thought that motivated you to put this guide together.
CNB: Exactly! The idea for Diagnosis: Breast Cancer came to me two days after my diagnosis when I met with my surgeon for the first time. I remember sitting in her office, numb, nodding my heading pretending to process what was being said. What became very clear early on was I was about to be inundated with a lot of new information and I was going to need a way to understand it and keep track of it all. I was given a book by my surgeon and I visited many websites. However, neither of these resources gave me all the information I needed in one place and none of them really helped me enough to try to get some control over my situation. So I told myself that if I got through this I would try to make it easier for those who followed. After two years of researching, talking with experts in the field, and countless hours it’s finally published!
JBBC: I first met you online about a year ago when you were working on Diagnosis: Breast Cancer and I was struck by how you wanted to make this the best guide to breast cancer diagnosis and treatment you could, by including input from other breast cancer survivors. How important was this aspect of your work to you?
CNB: Input from others was extremely important for many reasons. It would have been presumptuous to think everyone had the same experience as me! Although there are many commonalities’ with breast cancer, no two are exactly the same. What is the same, however, is that empowered and engaged patients have better treatment outcomes. I wanted advice from as many people as possible, survivors and medical experts alike, to ensure I was providing the most reliable and accurate guide for others.
JBBC: What struck you most forcibly from the online surveys you conducted? Did any of the data you gathered surprise you?
CNB: Thanks in great part to you Marie; I was able to collect quite a bit of data from survivors and current breast cancer patients. What became strikingly clear was not only the need for this type of book but the desire for it as well.
- 90% said they would like to receive this type of book immediately upon diagnosis
- 88% felt additional stress from not knowing what questions to ask each specialist
- 98% said they would find this book to be helpful
What really stands out from this data is that patients are not being given enough educational materials at the time they need it most; upon diagnosis. Cancer is stressful enough without the added burden of trying to figure out everything on your own.
JBBC: Your book is a guide primarily to diagnosis and active treatment of breast cancer, but you also include a section on post treatment. What are some of the ways survivors can best plan for this phase of their journey with breast cancer?
CNB: I refer to this phase as “Aftercare” – the longest phase of your treatment. The best way to plan for this phase is by taking care of yourself both emotionally and physically.
- Continue to talk about your feelings and stay connected to others.
- Examine your dietary habits.
- Limit your sugar and alcohol intake.
- Get enough vitamin D & calcium
- Add whole grains & flax-seed to your diet.
- Increase your vegetables and fruit serving
- Exercise! Research has shown that exercising regularly can reduce your chances of a recurrence by 42%!
- Re-evaluate your priorities.
- Help pay it forward to keep you moving forward.
JBBC You are planning a follow up to this book, can you tell us more about it?
CNB: I have always been an advocate for physical activity, now more so than ever! Part Two includes spreading the word on the importance of incorporating exercise in not only treating cancer, but in moving beyond a cancer diagnosis as well. I have created the website Working Out Cancer to help educate and motivate others on the importance of staying physically active. It’s a work in progress and just like the book, I welcome any and all input from your readers to help make it be of the most use to others.
JBBC: Finally Cara, you have generously offered a copy of your book to one of our readers. How would you like to see the winner use this copy of your book?
CNB: I am more than happy to give a copy away! I was thinking since most of your readers have already experienced breast cancer, I would love to ask them to help pay it forward and consider gifting the book to their treatment team or breast centers, or others helping alert women to this resource when they most need it – at the time of diagnosis. That’s really been my goal all along, getting this into patients’ hands as soon as possible. Until that giant corporate sponsorship happens who will distribute these for free (and I have faith it will!) I am grateful to everyone, especially you, for helping to spread the word.
JBBC: Thank you Cara for taking the time to talk with me today. I love the pay it forward idea – so folks, if you would like to win a copy of Diagnosis Breast Cancer, then simply leave a comment below, sharing a piece of advice you would give to someone recently diagnosed with breast cancer.
Diagnosis: Breast Cancer: The Best Action Plan for Navigating Your Journey is available for purchase on Amazon.
Great interview. I really admire Cara for the work she has done making this book available. I haven’t been diagnosed with breast cancer so wouldn’t be presumptous enough to offer any advice, but I can say if I won this book, I would pass it on to my local cancer support centre where I am sure it would be gratefully received.
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My advice would be you are entitled to a second opinion and I would strongly urge you to get one – also don’t rush into decisions too quickly – weigh up all your options first before deciding on the best course of action (sounds like this book will help you do that having read Marie’s review from a few days ago
https://journeyingbeyondbreastcancer.com/2012/06/02/diagnosis-breast-cancer/
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Hi Dorothy I agree with you about the second opinion and not rushing into making decisions – I wish I had been told this at the time of my own diagnosis!
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Try not to get overwhelmed thinking of the “big picture”. Take it one step at a time.
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Yes, I agree with Jane – focus on one step at a time as opposed to thinking about everything that might happen in the months ahead.
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Great advice!
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Surround yourself with people you can rely on and take all the help they offer
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So true! Even though you may at times feel lonely, you are never alone!
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In most cases, you have some time to explore your options. You should ask your doctor how long you can safely wait before treatment begins.
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This is a great point. I remember thinking “I just want it gone now!” Slowing down, taking the time to process your emotions and options will pay off in the long run.
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Suddenly everyone you meet will be an expert on cancer! Family members, friends, and complete strangers will give you advice. Be wary if they say, “You should do…” Though well-intentioned, they don’t know what’s best for you. You do.
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Absolutely Fiona! Remember that cancer treatments change rapidly. The treatment that was standard three years ago may not be standard today. What you hear from people treated in the past is usually out of date.
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My best advice is ignore those who tell you to try some radical “cancer curing” diet or major lifestyle change during treatment. Just eat sensibly and nutritiously, exercise moderately, and get plenty of rest. You can make whatever lifestyle and diet changes you want after treatment is over.
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Getting through your treatment will have its ups and downs. . You’ll feel better one day; then you’ll feel worse; then you’ll feel better. Don’t be discouraged by the down days!
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find a good buddy, mine was a very generous lady who I didn’t really know, but had been through BC treatment. She knew what I was going through and I could be really honest with her, when I was trying to put a brave face on for my friends and family.x
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I call this a capable companion. They might not be a family member, who at times, is not the best person to have with you 😉
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This is so needed. Kudos, Cara!
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Allow others into your experience, accept help, share what you’re going through! Together we’re stronger! By sharing it celebrates the victories and lessons the tough times!
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Dear Cara & Marie,
A book like this is so needed. We need to find a way to help you get it into the hands of cancer care centers and oncologists so they can give it to their patients. Please put my name in the hat. I will take it to the top oncologist in San Antonio, Texas and suggest she do just that.
XOXOXO,
Brenda
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Brenda, I was just thinking about you are your terrific post on not setting your sites low. I’m so glad to see you here. I’d love to talk more 😉 That goes for everyone here as well! cara@workingoutcancer.com
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Cara, I so appreciate your stopping by my blog. I still write my weekly blog, but since I’ve had to become more involved to save my husband’s business, I’ve not commented on other blogs like I’m used to & haven’t been as active on Twitter so I fear people have forgotten about me. Perhaps Marie will stop by & comment in her weekly roundup that I’m still here.
I’ve ordered several of your books and am going to take them around to the cancer centers here and would like to urge everyone to do the same. It truly is a valuable book. Let me know what else I can do to help. XOXOXO, Brenda
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Great!!! Could I also suggest another book too? I think it´s always good to have several references. The following book really helped me and I´m still following its suggestions, its very similar to the above author´s comments too!!! The anti-cancer book from David Servan-Schreiber,
I would also like to know whether there is a book on the market that helps the “after-care” I often feel that I can´t cope with my situation as an ablatio patient….Perhaps there is someone on this site who can give me a few tips, thank you
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Thanks for the recommendation Rebecca – I have read snippets of this book and liked what I read. I am not sure what ablatio is? Can you give us some more information please.
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My advice: Expect the unexpected. Don’t be thrown when things don’t go as planned. You are entering new territory and it’s OK to be afraid — but know that you *will* find your way through this dark forest. Just trust your gut.
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Renn, this is wonderful advice and I know that when I was first starting out on this journey, I drew enormous strength from seeing others who had come through the other side and held onto the belief that I would do the same too.
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Hi Marie, from my experience of talking to patients who have been through the experience, I think a good tip would be to realise that everyone’s journey is individual to them…that way each person can deal with their experience of breast cancer in their own particular way.
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Siead I couldn’t agree more. Someone asked me why I wasn’t telling more of my story in this book. i told them that would have completely defeated the purpose. I want the person who uses this book to make it reflect their journey not mine.
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Cara, I love that! That is what makes your book so special – it truly is written with the reader in mind!
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Sinead, that is so true and great advice for anyone at any stage of the cancer journey. Thank you!
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What a insightful interview! Thanks for alerting your readers to this wonderful new resource, Marie. I would feel privileged to receive a copy of this book. I, too, love the idea of paying it forward, and try to live that in my daily dealings with people. As a lymphedema patient-advocated, I emphasize to newly diagnosed breast cancer patients the importance of watching for any arm swelling at the site where any lymph nodes will be/have been removed. If the person observes any such swelling, I advise that they consult an M.D. before much time goes by to “nip it in the bud” as much as possible. xx
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You do such great work in this important area of advocacy Jan!
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I have been rediagnosed in February of last year. I have metastatic breast cancer. The advise that I would give is never blame yourself. Keep strong and never be afraid if you need help….it is hard when you have to rely on people at times but remember they do it because they love you. And the one main thing you are never alone, reach out and you would be amazed how many friends you will find that are going through the same thing and that would be there for you.
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Nancy I’m sorry to hear that cancer has returned. You are absolutely correct in not blaming yourself! One thing I would do differently if I could go back is to let more people in. I kind of hunkered down at times and short changed myself on a lot love!
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Fantastic interview!
Thank you JBBC for spreading the word about this invaluable new book! I had the honor of reviewing this book prior to publication. It is amazing in every way! As a survivor and counselor who works with cancer patients, I endorse and recommend this book to my clients and friends!! So much information is coming at the newly diagnosed breast cancer patient. Cara’s book will help so many people organize their journey through cancerland and learn to be an empowered patient!
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Hi Bethany, how wonderful of you to share your endorsement of Cara’s wonderful book here,. I really appreciate you stopping by.
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Lots of good advice here. Mine is – take a deep breath. You have time to figure it out. I wrote “Goodbye, Beloved Breast” the night before my first mastectomy and that helped me cope. My husband took pictures of my breasts, too, and I was very glad I had them.
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Not everyone thinks of taking photographs so that is a good tip Lois – thank you, and I know how healing poetry is for you so that is also something for people to consider
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Wow! What a great post with awesome comments. I can’t wait to read this book. I am thinking it might be an excellent addition to our “Hope Baskets.” (www.hopelivesnow.com)
My advice to the newly diagnosed: Everyone’s journey is unique…there is no right or wrong way!
Thanks again to you both!
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Hi Kim, it is wonderful to have you back commenting again – I am so sorry for whatever glitch in the works happened to your earlier comments. I love the idea of this being added to your Hope Baskets – it would be a wonderful addition.
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Kim, You have a wonderful site and beautiful mission!
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It clear that this is an amazing group of people! I am going to take the advice of Marie who is an amazing inspiration and ask for your help and a chance to receive an additional copy of Diagnosis: Breast Cancer.
Who could you tell about this book that would help get it into patients hands as soon as possible?
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Great question!
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Great interview and I can’t wait to get my hands on your book! I was recently diagnosed 4-6-12 with breast cancer. Have looked/read many books and liked different things about each one. It would be nice to have everything in one book. My advice is to blog for family/friends to keep track of you, your doc appt and what is basically going on with you. (nothing is more exhausting then repeating your info over and making sure you tell everyone) – also journal for yourself – your real gut feelings, fears, and triumphs. (things you really dont want other people seeing). Live in the “now” and not the “what could be”. Do you have flyers on the book that could be put at the Dr office’s with maybe a copy of the book? Or if they will not let you leave the book? I work for a hospice that serves 23 counties and know many of the Dr’s, Oncologist, etc.
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Mary I am so glad you found this forum early on, how are you doing? You certainly have lots of good ideas for new patients and for me as well 🙂
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The first step is to get a clear picture of YOUR diagnosis, not that of the person next to you who may seem like you, but may not be. Next step is to get the latest information from the most reliable sources that relates to that situation Inform yourself and be engaged with your treatment that is my advice to the newly diagnosed cancer patient .
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Take a friend/family member with you to each appointment as you will probably not remember all that is being said to you
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So true! Another great resource is a tape-recorder. Many cell phones already have this capability and it takes all the guess work out of trying to remember what was said.
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Read and prepare for each meeting, have a list of questions to ask your doctor and keep asking those questions until you understand the answers.
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That’s exactly what this guide is about! My first appointment was two days after my initial diagnosis, I didn’t even know what questions I should be asking let alone what type of cancer I had. I wanted to provide others with a starting point for gathering their information and a way to keep it organized as they continue to gather more!
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Hey there! I’ve been reading your website for some time now and finally got the courage to go
ahead and give you a shout out from Austin Tx!
Just wanted to say keep up the fantastic work!
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Elinor, I am so glad you said hello 🙂 It’s great to hear from you! Thanks for reading my blog and I do hope you will comment again x
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