Meet the Author: The Breast Cancer Checklist

If we haven't been there ourselves, most of us know someone who has - being dropped into the world of cancer as results from tests come back positive - "You have cancer." The word itself is frightening: Cancer.

Research has come far in treating most cancers, including breast cancer. But what hasn't changed is the fear and the uncertainty that you are left with once you hear those words. After absorbing the information, you have to start acting on what needs to be done. And while much of what needs to be done is told to you - in terms of treatment options and when you need to start - there is a lot that is unknown.

Fern Reiss is the author of The Breast Cancer Checklist, a new book that she wrote to help people who have been just diagnosed with breast cancer. But it's more than that. It's also a good book for people with cancer, period. Here is a brief question-and-answer interview I did with Fern, which I hope will help spread the word about what I think is a valuable and much-needed resource for people who are embarking on their cancer-treatment journey.

How much did you know about breast cancer before you were diagnosed?

My mother and sister both had breast cancer (though none of us had the genetic markers) so I knew a little bit--but no matter how many people you know who've experienced it, including close relatives like in my case, you don't ever *really* know something like this until you go through it yourself.


There are many books already published on the topic of breast cancer but you said that you couldn't find what you were looking for. What exactly were you looking for?

When I was diagnosed, almost my first response was to head to the bookstore, to find the perfect book to get me through. Although I found literally hundreds of books on cancer, including dozens on breast cancer, the book I wanted just wasn't there. I wasn't looking for a 400-page tome on all the intricacies and details and possibilities, though there are many excellent books on the market that provide an exhaustive (and exhausting!) look at the subject. I didn't really care about their focus on how cancer spreads (that's too scary) or all the different types of breast cancer (many women only have one type). I didn't even particularly care about all the chapters on breast cancer prevention and the importance of mammograms--I had been getting regular mammograms, but anyway, since I had already been diagnosed with breast cancer, it was too late for me to worry about mammograms.

Instead, I wanted a book that would somehow, despite the scary overtones of a cancer diagnosis, give me a feeling of control, and the ability to structure a high quality of life during my year of dealing with cancer. I wanted a book that was quick, with checklists so that I wouldn't lose track of things. I wanted an all-in-one book that I could bring with me to doctor's appointments, the grocery store, the physical therapist.

I wanted a book that didn't address just my physical condition, but also my mental and emotional condition. I wanted a book that assumed I was a cancer *survivor* not a cancer victim, and one that didn't include the doom-and-gloom scenarios of cancer recurrence, which I wanted to avoid considering. I wanted a book that spoke not just to me, but also to my family, and maybe even my friends and community, so they would know how to support me.

I even hoped for a book that would keep track of all my personal information--medical and insurance details, kids' scheduling, shopping lists--so that I could stay organized and feel empowered.

This is the book I needed. It includes checklists for what to do before, during, and after breast cancer surgery, chemotherapy, and radiation. It covers lumpectomy, mastectomy, reconstruction, chemo, radiation, infusion ports, lymphedema management, prostheses, tamoxifen, herceptin, lupron, and clinical trials, as well as practical things like checklists for managing schedules and doctor appointments and work and family life during treatment. It even includes checklists for organizing clothing and equipment purchases.


Why is this book important?

Breast cancer treatment is difficult enough. At least with this book women can keep the pieces together and stay organized. I've been giving the advance galleys to friends who've been diagnosed, and people are finding it as helpful as I'd hoped, which is very gratifying. (I also just got a pretty incredible review at Scientific American)


Fighting breast cancer, going through treatment, is pretty intense - how were you able to go through the treatment and write at the same time?

I didn't write the book while in treatment, but I did keep notes all through treatment on what I wished I'd known before. It was just so frustrating: There are some medical things that nobody bothered to mention to me -- like, you should get your teeth checked and a flu shot before you start chemo, because your immune system will be compromised. There are some practical things--like, you're discharged from the hospital with drainage tubes dangling from your chest, and if you haven't purchased or figured out a system for keeping them suspended under your shirt comfortably, you can't really go out. There are nutritional tips--like ways to keep from being nauseated during chemotherapy; that becomes *really* important the minute you start chemo.

Then there are things that might affect your risk of recurrence--like, if you time your surgery for the latter half of your menstrual cycle, studies show that you'll have a much better chance than if you have the surgery earlier--but none of the doctors tell you that. And there are all these great freebies, like free restaurant meals, free housecleaning services, free spa vacations and retreats--which are open to breast cancer patients and survivors for free--but how are you supposed to find out about them?!


What were the obstacles you encountered while writing this book?

The lefty alternative people didn't like that the book covers how to deal with treatment such as chemotherapy; they thought I should advise people to treat breast cancer alternatively, and while that may work for some people, I don't think it's responsible advice for everyone. The medical community had exactly the opposite reaction: They didn't really believe that there should be a chapter on nutrition, and how you can try to prevent recurrence nutritionally, even though that part of the book is based on over 500 medical studies.

A lot of the organizations and communities that should have been *delighted* with this book are in bed with the drug companies--which means they have an interest in maintaining the status quo. And a lot of the publications that I had assumed would be ecstatic to run an article on the book--like Family Circle, which had expressed great interest in doing a story on it--instead ended up doing puff pieces on 'pink nailpolishes and lip glosses' you can buy, as if that sort of piece is going to help anyone in the throes of breast cancer treatment. There are a lot of politics in breast cancer, which makes it very hard to successfully promote this book--and very hard to get to a cure for breast cancer, as well.

You are taking a non-traditional route in getting your book out to the public, including using Crowdfunding. Why did you decide to get your book out this way?

Crowdfunding, for those who've never heard the time, is a more egalitarian modern-day form of Renaissance patronage, or a way to fund the arts.

In 'real life' I run PublishingGame.com, where I consult with people who want to publish and promote books. I keep being offered consulting jobs to crowdfund other people's books, because crowdfunding is similar to other kinds of book publicity things that I do, and I wanted to try it out on one of my own books first. Crowdfunding has been wildly successful with things like independent films and technology, and much less successful with book projects. But I suspected that part of that disparity is that authors aren't necessarily as savvy at publicity as independent filmmakers. I wanted to give crowdfunding a try for a book project. So this was a way to both try out crowdfunding to see if it has potential for book publicity, which has become increasingly difficult in recent years, and simultaneously spread the word about this book. (You can see my crowdfunding campaign on the book's website at http://www.BreastCancerChecklist.com)


This looks like a book that is about taking control in a situation where you may feel like you have little control. Is that the purpose - to help women get a bit of that back?
Absolutely. There's so little you can control about the whole breast cancer experience. This is a way to at least take control of what you can control.


If you could get just one message across to women who are thinking of buying your book, what would that be? What would you like to say?

I hope nobody needs this book, ever. But I hope women will share it with everyone they know--because with one in eight women getting breast cancer these days (and the numbers inching up steadily) *someone* you know will need it this year. Please help them find it.

More info at http://www.BreastCancerChecklist.com

Women’s Health: The Link between Starch Intake and Breast Cancer

This is National Women's Health Week in the United States and guest blogger Brian Flora has written this post to share with medhealthwriter.com readers:

There is growing evidence that nutrition can play an important role in cancer prevention. Nutrition is strongly associated with a person’s risk for the occurrence or reoccurrence of cancer. Researchers have now linked starch intake with breast cancer recurrence, according to results presented at the December 2011 CTRC-AACR San Antonio Breast Cancer Symposium. Researchers found that women who increase starch intake face an increased risk that their breast cancer will return.

Women's Healthy Eating and Living

Researchers followed 3,088 breast cancer survivors who participated in the Women’s Healthy Eating and Living—or WHEL—for seven years. Of these participants, scientists followed 2,651 women in the Dietary Intervention Trial. The study relied on dietary recall, in which researchers telephoned participants and asked for a report of everything they had eaten in the past 24 hours. This information was gathered when participants entered the program, and one year later.

Results from the study show a strong association between increased carbohydrate intake – more specifically, starch intake – and a higher risk for recurrence of breast cancer. Changes in starch intake accounted for about 48 percent of these changes in carbohydrate intake.

The Dietary Intervention Trial didn’t focus specifically on carbohydrates, although it did look at fruits and vegetables, fiber and fat intake in general. At the beginning of the study, participants ate an average of 233 grams of carbohydrates each day. The researchers found that women whose cancer came back in the previous year had eaten an average of 2.3 more grams of carbohydrates daily. Women whose cancer did not come back had reduced their carbohydrate intake by an average of 2.7 grams.

Specifically, women who had reduced starch intake the most had a recurrence rated of only 9.7 percent, as compared to women who increased their starch intake and suffer a recurrence rate of 14.2 percent. This increased risk seemed limited to women with low-grade tumors.

Further Evidence

Other studies have also revealed a strong association between nutrition and the recurrence of breast cancer. One such study performed in China showed breast cancer survivors who eat plenty of cruciferous vegetables have a lower recurrence rates than women whose diets did not include large amounts of these vegetables.

Cruciferous vegetables, including greens and cabbage, contain phytochemicals known as isothiocyanates and indoles, which help protect against certain types of cancer. This is dependent on the type and amount of cruciferous vegetable consumed.

The authors of the study pointed out that the Chinese eat cruciferous vegetables like turnips and bok choy, while Americans eat mostly broccoli and Brussels sprouts; further research will determine whether all cruciferous vegetables provide equal protection from recurrence of breast cancer.

What It All Means


While the association between food and cancer in general is well-established, these studies provide insight into the relationship between food and the recurrence of breast cancer. The American Institute for Cancer Research confirms that a diet rich in plant foods like fruits, vegetables, whole grains and beans helps lower the risk for many types of cancer. Researchers are investigating the roles specific nutrients play in reducing cancer risks but evidence suggests a healthy diet provides the best protection.

While scientists continue to discover the link between starch intake and cancer prevention, health professionals recommend eating fruits and vegetables like apples, cranberries, blueberries, broccoli and squash, along with green tea, grapes and tomatoes. More research will examine the link between starch intake and the recurrence of breast cancer. For now, consumers are encouraged to fill at least 2/3 of their plates with vegetables, fruits, beans and whole grains to replace starchy foods.

With this latest study, the effects of a healthy lifestyle versus those of an unhealthy lifestyle are highlighted. If you or anyone you know has a family history of breast cancer, or has undergone breast cancer treatment themselves, take a few minutes to think about changes that you can make to decrease your chances of becoming another statistic.

Off-label use of medications

We often hear the term "off-label" use of medications - but what does it mean?

Drugs that are used according to their approvals are being used on-label. Doctors are prescribing them for illness, disorders, etc, for which the country's licensing body said that they could be used for. Off-label use comes when doctors find out, usually accident, that a certain drug will also help another problem. So, they may be treating problem A with drug XYZ, but then they see that problem B is also cleared up. As more and more doctors find this, the news spreads.

As more documentation happens, the licensing bodies will often agree to the off-label use.

This press release about Avastatin is a good example: Off-Label Avastin Use for Wet Macular Degeneration.

Avastatin is a treatment for various types of cancer. Officially, the on-label indication is for colon and lung cancer, but doctors have been using it off-label for breast, prostate, kidney, head and neck, pancreatic, ovarian, and liver cancers, with very good success.

If it can help millions of people save their eyesight, how amazing is that?

News for today:
America's 50 best hospitals 2008 released by HealthGrades
Do patients with inflammatory bowel disease receive optimal care?
Even moderate fitness levels lower stroke risk: study
FDA Panel OKs 3 New Flu Strains for Next Year's Vaccine

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Don't forget to visit Help My Hurt to learn and read about pain-related health issues.

Letting our children grow up and away

As a parent, you do your best to protect your children. Of course, you don’t want anything to ever happen to them, but from time to time, accidents do happen.

I know that when my kids were small, as much as it pained me to see them scrape their knees or hurt themselves, I knew that it was all part of growing up and exploring. I see some parents telling their children not to run because they may fall, not to climb because they may slip. Yes, they may, but they have to run and climb too. Scrapes heal, bruises go away – but being constantly told you shouldn’t or can’t do something because you might get hurt, takes away from the ability to make your own choices about what you should and shouldn’t do. It’s not as if my children were accident-free. From broken bones to stitches to emergency surgery for appendicitis, we had our share of hospital visits, that I can say.

Of course, I’m not talking about letting your child pull over a pan of boiling water or sticking a fork into an electrical socket, but allowing your child to climb on a jungle gym, playing superman with a towel clothespinned to a t-shirt, or having a pillow fight with a friend are activities that can end up with an injury, or with lots of giggles.

We weren’t the type of parents who sent our children to camp. For one thing, they were way too expensive for us and another – important – thing was that our kids weren’t the type to want to go away to camp. Until 3 years ago, when my youngest son came home with a pamphlet for a camp two hours north of us; it was a sports/wilderness camp for boys 12 years old and up. It has been around for many years. I knew someone whose son had gone for a few years and had begun to work there as a leader-in-training. At first, my heart sank when my son came home all enthusiastic about going, because I thought, there is no way on earth that we can afford to send him to a sleep-away camp for two weeks. Tht is, until I found out that it only cost 375.00. That’s right. For the full two weeks. It’s a camp that gets funding from many different sources to make it and keep it affordable. It’s been around for so long that many of the campers are sons of men who went to there.

When my son came home after his first summer there (two weeks), he said to me in the car, “Mom, I did things that I never imagined myself ever doing.” I thought I was going to cry. He climbed rocks faces, jumped into rivers, kayaked, camped, and just had a wonderful, wonderful time. And it was the beginning of something wonderful for him.

After two summers of being a camper, last summer, he was invited to participate in a special week at the beginning of the session, reserved for boys who the leaders saw as being potential leaders. My son was ecstatic because becoming a leader had now become a serious goal. While he was there that week, he did even more things that he never imagined, including kayaking on rapids. What I found out later is that something went wrong on one of those trips and he could have been severely hurt, even killed, at one point. There was a miscommunication somewhere and my son went down some rapids and headed straight for a log that was across the river. Quick thinking had him flip upside down, but then the fast current made it almost impossible to tear off his kayak skirt so that he could right himself. He told me after that this was “the most scared” he had ever been.

Part of me was severely ticked that this could happen, but a bigger part of me knows that accidents happen and that we can’t wrap our kids in cotton batting and still expect them to be able to go out and challenge life head on. I am so forever grateful that he escaped unscathed and I know what could have happened. However, he could have stayed home and almost been hit by a car crossing the street too. Life is full of challenges and dangers. So, what did my husband and I do Sunday evening? We dropped off our son for yet another week of this leadership training. We know that what happened last year was an accident and that the leaders are now aware of the breakdown in communication. We know that we have to let our kids do things, to try things. And we have to hope and pray that they come out ahead at the end.

Just like when my daughter broke her arm, or my oldest son broke his elbow, my heart sank when my youngest told me of his kayaking adventure. But, as with all the other accidents the kids have had, I know that holding them back won’t keep them safe. Holding them back would only encourage, in a sneaky way, other types of risk taking. So, I let them go. I hold my breath and I wait for them to come back. And then I listen to all that they learned. And I never forget those words from my son, “Mom, I did things that I never imagined myself ever doing.” That makes it all worth it to me.

Today's News:
Health Canada approves Seasonale
India's HIV infection estimate drastically lowered
Jefferson oncologists show breast cancers to be more aggressive in African-American women
Exelon(R)Patch, the First and Only Skin Patch for the Treatment of Alzheimer's Disease, Receives First Worldwide Approval in US

The Vitamin D Buzz

Vitamin D is all over the news. A new study has found that increased doses of daily vitamin D could decrease the chances of developing certain cancers, such as colorectal and breast cancers. In fact, they found a 60% of cancer incidence.

This led the Canadian Cancer Society to recommend that all Canadian adults take 1000 international units (UI) of vitamin D during the darker winter months. There has been a rush on vitamin D at the stores. The Montreal Gazette reported today that several city pharmacies were wiped out of their vitamin D supply. I don’t know, last time I checked, it’s June and sunny a good part of the day. A good *free* way to get vitamin D is to get it from the sun.

I take a regular multivitamin and there are 400 IU of vitamin D in the brand I take. I try to get out in the sun, walking the dog, gardening or sitting and reading the morning paper, and eat foods that have vitamin D in them. In the winter, I try to make a point of getting out on sunny days and expose my face to the sun for a bit, just for the sheer joy of feeling sunshine because I’m one of those people who has a hard time when the days are too grey.

Sunscreen has its place and I’m against the sun tanning that lots of people still do. I have blonde hair, very fair skin and green/yellow eyes. In other words, when I was a kid, I burned and burned and burned so many times, I couldn’t keep track. But, I also was never for the constant slathering of the highest SPF sunscreen available. We need the sun. For example, Canada has one of the highest rates of multiple sclerosis in the world. Northern countries have much higher rates than countries in the south, which don’t have the short grey days we have. Is it connected to the sun? No fool-proof connection has been made yet, but it sure sounds suspicious to me. The sun is vital and, like almost everything, we went way too far the other way, from worshipping the sun to being terrified of it. While skin cancer is frightening, we can prevent it without totally eliminating the sun from our lives. With my pale, easily burned skin, I still spent 45 minutes this morning outside in the sun gardening, without sunscreen. I made sure I was in and out of the shade and I never stayed in the sun for more than 5 minutes straight. If I go outside in the sun again today, I will put on sunscreen because my skin was exposed to enough sun today. But tomorrow, I’ll likely try to spend at least a half hour enjoying the sun.

And, in the winter, I’ll increase my dose of vitamin D to 1000 IU until the summer sun rolls around again.