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Survivor Spotlight: assertive cancer patient Jeanne Sather

Journalist, teacher, mother and eight-year breast cancer survivor Jeanne Sather is a self-described outspoken advocate for the cancer patient's point of view.

A vegetarian since the age of 16 and fairly active, she does not have any of the known risk factors for breast cancer. After an all-clear mammogram at the age of 40, she was diagnosed with breast cancer at the age of 43. In an ironic twist of employment fate, the very job she was hired to do in chronicling her life online as a breast cancer patient, may have led to her firing because of the flexible work schedule breast cancer treatment required.

With a sharp clarity and well-earned perspective, Sather is The Assertive Cancer Patient. To our good fortune here at The Cancer Blog, she has agreed to take part in our Survivor Spotlight series featuring interviews with breast cancer survivors.

How did you find out you had breast cancer?


Routine mammogram found DCIS, follow-up biopsies found a tumor.

What types of breast cancer treatments were recommended?

Mastectomy and chemotherapy.

How did you research breast cancer and breast cancer treatments?

When I was first diagnosed, I got a second opinion and then a third opinion. I chose the best doctors I could find, and then I relied on their advice.

Of course, I took their suggestions and went away and researched them on the Web and by talking to other knowledgeable people -- but I am not one of those people who is always online looking for the latest, greatest miracle treatment.

I trust my doctor to know what's new and what's effective and to give me some choices about my treatment.

How did you manage through breast cancer treatment?

Mostly, I am pretty positive, but I had one big crash and was hospitalized for depression.

I get through it all with attitude, good friends, fun, exercise, great nurses and doctors, my therapist, and my writing about my life with cancer. That has been very good for me.

I also cope by making sure my life is not all about cancer and not all about me. My kids, 22 and 16 now, are important, as is volunteering for causes I believe in that are not cancer-related. Homeless kids and homeless animals seem to be my thing.

Of course, I am still in treatment. I've been in continuous treatment for the past five years, plus two series of treatments before that, when I was first diagnosed and when I had my first, local recurrence.

I get treatment every three weeks with Herceptin and Avastin, which are targeted therapies, plus Zometa to keep my bones strong every six weeks. I also take an oral chemo drug, Cytoxan, daily, plus a bunch of meds to manage the side effects of treatment.

What has been your worst breast cancer moment?

There have been three -- the initial diagnosis; when I found out that my cancer had metastasized to my bones on New Year's Eve 2001; and very recently when my long-time medical oncologist left Seattle to take a position in Tucson at the cancer center there. I'm still working on finding a new doctor in Seattle and I will fly to Tucson to see my old doctor occasionally.

What has been your best breast cancer moment?

I'm not sure that there was one moment, but it was the realization that I could cope with this.

The name of your blog is The Assertive Cancer Patient. What is your definition of an assertive patient and why is it important to be an assertive patient?

There are at least three good reasons to be an assertive cancer patient -- you will get better care; you will probably live longer; and you will feel better about yourself and your illness.

It is not my intention to encourage an adversarial relationship between cancer patients and their doctors or health-care teams. My goal is exactly the opposite. Cancer patients should feel that their doctors and other medical professionals are listening to them and are on their side.

Given the fact that you are an outspoken critic of pink marketing, what do you see as an alternative solution to raising funds for breast cancer research?

First, it's important to realize that most of these pink marketing efforts raise very small amounts of money compared to what cancer research and even cancer treatment cost.

Where pink marketing really runs wild is in the for-profit sector. Retailers offer pink-themed merchandise, then donate only a tiny share of the profits to cancer research. I'm tripping over these products everywhere I go this month. At the pet store, a pink dog collar printed with pink ribbons sells for $9.99; the tag says 30 cents (30 cents!) from the sale of this product will be donated to the Susan G. Komen Breast Cancer Foundation, the 800-pound gorilla of cause marketing.

But wait, there's more! At the tea shop, a pink tin of candy. At the supermarket, pink M&Ms-buy the M&Ms for $2.99, and Komen gets 50 cents. (Three dollars for an 8-ounce package amounts to four times the usual price, based on volume.) Other recent pink products: scarves, clothing, and nail polish. Nail polish? All of this just encourages us to indulge in retail therapy while trivializing a very serious disease. This is not about raising money for cancer research; this is about companies selling you stuff you don't need, just to make a profit. Don't fall for it.

If people want to support cancer research, they should give money directly to organizations that do cancer research, not buy a bag of pink M&Ms for $5.48 and have 50 cents go to Komen, which then passes it on minus overhead. Give the whole $5.48!

If they want to support people with cancer, give money directly to CancerLifeline in Seattle or to Gilda's Club, which has lots of programs for people with cancer. Or just write a check and give it to a friend or neighbor who is living with cancer. Believe me, they can use it.

I've had friends give me money, and even total strangers who have read my cancer writing have sent me checks. That is totally humbling.

But people seem to think that giving money to someone with cancer is crass. They might spend $50 or $100 on flowers, but maybe the person with cancer would rather have the money for groceries.

Are you involved in any breast cancer support groups, fundraisers or breast cancer organizations?

I have been. I've gone to support groups in the past, but I am not a huge fan of support groups. I've run the race for the cure, two or three times, much earlier in my life with cancer. At the time, it was good for me, but I wouldn't run it now.

I've gone to Gilda's Club here in Seattle for events and meetings, and I used to go to CancerLifeline for yoga. I probably will go back when the weather gets colder and I don't want to exercise outside so much.

What advice would you give to someone newly diagnosed with breast cancer?

I don't believe in telling other people what to do. When someone who is newly diagnosed calls me, I listen more than talk and only answer the questions they ask.

Having said that, I would probably try to introduce a couple of topics -- one being the value of getting a second opinion, and the other would be some suggestions (either to the person with cancer or to friends and family) on how to help.

What advice would you give the family members and friends of someone diagnosed with breast cancer?

It's not your disease. You don't get to make the decisions. If you disagree with the decisions the person with cancer makes, you only get to say that ONCE, and only if you are asked for your opinion. After that, shut up. It's not your disease. Focus on supporting the person who has cancer in ways that will be helpful to them.

Get the support you need somewhere else, not from the sick person.

As a breast cancer survivor, what thoughts do you have on surviving breast cancer and being a breast cancer survivor?

Well, I'm a survivor, in the sense that I've lived eight years with this disease, but then again, I'm not. My cancer will never be cured, and I will be in cancer treatment for the rest of my life. So I am in a special category.

I consider myself to be living with cancer. It's very tough. It's hard to feel safe. Every new pain has to be checked out. It could be a sign of disease progression or it could be a broken bone. I've had broken bones twice without realizing it.

My quality of life has been good during most of this time, and that is a surprise and a blessing. Despite knowing that my cancer will never be cured, I enjoy my life. I love my children, my friends, my animals (a whole other topic -- the importance of animals to people who are living with serious, chronic illnesses), my garden, my new car -- a red, 1964 Corvair convertible -- and my work as a writer and teacher.

Name three breast cancer books you would recommend:

Mine, but I don't have a publisher yet. I hope it will be out by next year.

Susan Love's book is the bible. I also like Breast Fitness, which makes a compelling case for exercise to help prevent breast cancer and also prevent recurrences. Being overweight greatly increases your chances of both.

Name other breast cancer related resources, internet or offline, that you would recommend?

I use the Web a lot, but that's because I write about cancer so much. The Web can be tricky. There are some good sources, some sources that provide good information but are almost impossible for the layperson to understand, and then some sources that are total garbage.

How do you distinguish among them? It's not always easy.

Having said that, most people go to the Web first when they are newly-diagnosed with cancer, we know that, so people need to be careful consumers of information. Again, not always easy when you are reeling from the bad news of a cancer diagnosis.

It does get easier. I was not as savvy or as assertive when I was first diagnosed as I am now, but being a journalist certainly helped me get there.

A blog like mine does not pretend to offer medical information. I offer support, and strategies to help people get what they need when they have cancer. It is so important to be assertive, and it is also important to know that you CAN be assertive and your doctor won't hate you or not take good care of you or any of those fears that we have about speaking up.

In addition to maintaining The Assertive Cancer Patient blog, what other work are you doing?

I teach nonfiction writing at the University of Washington Extension. I'm writing a screenplay -- The Best Summer of My Life -- a chick flick about a red Corvair, women friends, life, and cancer and also a book -- The Assertive Cancer Patient -- on the same topics covered in the blog.

I teach Japanese as a volunteer at a school for homeless kids called First Place and care for homeless kittens as a volunteer with a feral cat rescue called Animal Talk.
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