Archive for May, 2008

FROM breastcancer.org

All types of breast cancer surgery have a risk of side effects. Some may last for a few weeks — or a few years — after surgery. You may wonder if side effects such as tingling or tightness are normal, whether or not you can continue regular activities if you’re at risk for lymphedema, or if scar tissue formation might affect reconstruction decisions. So, how do you manage these and other issues after surgery?

On Wednesday, May 21st, Kristin Brill, M.D., F.A.C.S. and Linda Miller, P.T., D.P.T. answered your questions about short-term and long-term side effects of breast surgery, and what you can do about them.

If you missed our online conference, you can read the transcript here:

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In the mid-1980s I was sitting in a meeting with about 15 other women who were working together on a variety of programs.  I had just finished reading somewhere that women had a one in 15 chance of getting breast cancer during their lifetime.  I remember looking around the room and wondering which one of us it would be.  I never thought it would be me.

When I was diagnosed with invasive ductal carcinoma in 2007, that lifetime risk had changed to one in eight.

Breast cancer is the most common cancer among women, excluding cancers of the skin. More than 2 million women are living with the disease. In 2007, breast cancer will account for nearly one out of every four cancer diagnoses in women.

An estimated 178,480 women will be diagnosed with invasive breast cancer in 2007. This number does not include cases of carcinoma in situ. An estimated 62,030 new cases of breast carcinoma in situ will be diagnosed in 2007. Of these, 85% will be ductal carcinoma in situ (DCIS).

If every woman lived to age 85, one out of eight women in the United States would develop breast cancer by that time—a “lifetime” risk that was one out of 14 in 1980. A new breast cancer case is diagnosed every 2.2 minutes.

From Breast Cancer ActionThe Facts and Nothing but the Facts

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From Our Bodies Our Blog

Our Bodies Our Blog has invited the folks at Breast Cancer Action  to write monthly guest posts on breast cancer and related issues. We welcome their first entry!

by Pauli Ojea

In the late 1980s, a group of women in a breast cancer support group decided it was time for change. These women, who met regularly to share information and to support each other through their experiences, felt there was more they could do, more they needed to do. Frustrated by the lack of reliable information about the disease and the lack of support most women with breast cancer received, they wanted to change the situation for all women facing breast cancer.

So, in a San Francisco living room in 1990, the women set out to do something about it: They formed Breast Cancer Action (BCA).

Their goal was to move breast cancer from an individual woman’s private medical crisis to a public health emergency. The founders put their political know-how, passion and courage to work in order to bring national attention to what was then a rarely mentioned issue.

Fast-forward to 2008. BCA is now a national education and advocacy organization with 19,000 members, a 10-person staff, and hundreds of activists and volunteers in the United States and abroad.

Although breast cancer has received a lot of attention, the problem has not been fixed. And BCA is still here to help change things. Sadly, all but one of the original founders have passed away, but the vision set for the organization almost 20 years ago lives on.

BCA continues to work for change on the political and social issues that have a significant impact on this disease. One of BCA’s biggest priorities is advocating for more effective, less toxic treatments for breast cancer patients. Central to this work is the role of the FDA — the agency that can help, or hinder, the adoption of these treatments.  More

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May 14, 2008
Surviving breast cancer ‘is not enough,’ warns Breast Cancer Campaign

Breast Cancer Campaign’s Scientific Conference — Breast Cancer Research 2008

Women are living longer after breast cancer but simply surviving is not enough, Pamela Goldberg, Chief Executive, Breast Cancer Campaign, said today.

Speaking at the second Breast Cancer Campaign Scientific Conference in London, Pamela Goldberg outlined how earlier diagnosis, new treatments, and increased awareness of symptoms has resulted in breast cancer moving towards becoming a chronic but controllable condition.

“The picture is completely different for women today than in the 70’s”, Pamela Goldberg told a conference of around 300 delegates today.

“Thirty years ago only half of women with breast cancer survived for more than five years. Today that figure is around 80 per cent.

“However, some of these treatments like radiotherapy and chemotherapy have toxic and debilitating side effects which have a profound impact on their quality of life, every single day. This may partly explain why breast cancer still remains the biggest health fear for women.”

Fatigue, body image and early menopause leading to childlessness are just some of the problems faced by breast cancer survivors that can have a real impact on their psychological well-being. In some cases fatigue is so severe that giving up work can seem the only option, according to the charity.

Carefully targeted research will play an important role in improving quality of life and problems faced by women after breast cancer. Key research gaps and priorities for the greatest potential impact on patients have already been identified and projects to fill the gaps are being funded by Breast Cancer Campaign. . . .Article

SOURCE: BioMed Central

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Because I live in a remote rural area, I rely on the Internet for news and information. When I was diagnosed with breast cancer, I needed a lot of information fast in order to make a decision about what to do.  But I hesitated about getting this information online because I didn’t know how reliable it would be.

This article discusses a study on breast cancer web sites.

Most Breast Cancer Sites Get It Right

The Internet is filled with unreliable health information and bogus claims. But sites dedicated to breast cancer information appear to have a high level of accuracy, a new study shows.  Article

Some of the web sites that I have relied on for information and support are


Triple Negative Breast Cancer Foundation (specific to this type of cancer)

Y-me, which now has a cumbersome new name, “Breast Cancer Network of Strength”

National Coalition for Cancer Survivorship

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Every cancer patient should talk to his or her doctor about lymphedema, and ask about monitoring and early detection, as well as baseline measurements of limb volume before treatment. In addition to being monitored for lymphedema, patients need to know that even minor overuse of an affected limb, such as carrying a heavy bag or typing for hours on a keyboard, can trigger the swelling.

This article outlines why any cancer patient who has had lymph nodes removed should be on a lymphadema prevention screening program.  Read the article to find out what to talk to ask your doctor.l

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Yesterday I wrote a post about “things I did wrong” which included not going to the doctor to check out a lump and not having an annual mammogram.  Today I saw this article in the New York Times:

A survey of 500 cancer survivors found that more than half of them delayed seeking treatment for two months or more despite having symptoms of their disease.

The report, from the Tower Cancer Research Foundation in Los Angeles, found that the biggest reason people waited to see a doctor was because they were simply waiting to see if symptoms disappeared. However, 15 percent of respondents waited one to five years after their symptoms appeared before finally seeking medical advice.

About a third of patients said it was just procrastination that delayed their diagnosis. But 13 percent said they were afraid of what the doctor might find, while 12 percent were stymied by insurance woes.

Because the data come from cancer survivors, it’s not clear how much it reflects the real world, where many people may die as a result of delays in seeking a diagnosis.

“Hope, fear, procrastination and lack of medical insurance were all powerful forces preventing people from going to see a doctor,’’ said Dr. Solomon Hamburg, president of the foundation. “Those surveyed were cancer survivors, but many people who delay going to a doctor for long periods of time for a diagnosis are not as fortunate. Early detection raises the bar considerably on our ability to help those in need.”  Article

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The woman nurse practitioner that I liked moved away, and the next spring when I was due for my annual “well woman check” I let some time go by while I looked for another health care provider because I didn’t like the new woman doctor and I didn’t want to see any of the men doctors for my pelvic and breast exams.  Time flew, and before I knew it, spring came around again – it was two years since my last mammogram.   When I had it, I discovered I had breast cancer.

Another thing I did wrong was fail to do monthly self-exams. 

And I didn’t go to the doctor as soon as I discovered the lump.  I knew all winter that I had a lump and that it needed to be checked.  While I was busy distracting myself so I didn’t have to face what it might mean, it kept growing. 

If I had done monthly self-exams, if I had gone for my regular annual exams, if I had gone to the doctor when I first knew something was wrong, it is entirely possible that my breast cancer could have been found while it was still DCIS (ductal carcinoma in situ – meaning still in the duct) rather than invasive ductal carcinoma (broken out of the duct and invaded surrounding tissue).  

Shoulda woulda coulda doesn’t help me. But if I tell other women what I did wrong, maybe it will help them.

May 8, 2008 Reuters Health Article says: 




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I just read in the latest issue of AARP magazine about a new treatment advance called image-guided radiation therapy.  A doctor was quoted as saying, “I would guess almost everyone living in the U.S. is now within an hour of a center that has this.”   The system is supposed to give radiologists a more accurate picture of a tumor, which allows them to target it more accurately and reduces the number of treatments needed. 

Not only is our area not within an hour of a treatment center with image-guided radiation therapy, it is at least 2 hours to the nearest radiation treatment center of any kind.   I’m thinking there are lots of rural places that are not within one hour of treatment. 

The first radiation oncologist I saw said treatment was 5 days a week for 6 weeks, but it only took a few minutes, so I would have the rest of the day free.  Yes, I said, unless you counted the 5 hours it would take to drive there and back.

She said,

Oh, yes. There is that.

WWAMI Rural Health Research Center  has several access to care studies, including rural access to radiation oncology centers. 

This study will use cancer registry data from 10 U.S. states to examine which rural cancer patients are receiving recommended radiation therapy and what factors influence receipt of recommended treatment. Identifying gaps in radiation therapy will inform cancer centers, rural program planners, and policy makers in rural cancer service location and cancer support program development. This project is expected to be completed by August 2008.
I would like to hear comments from rural women cancer patients on how far it is to treatment and how you overcame the distance barrier.  Were there organizations that provided transportation or financial assistance with transportation costs? Did you have to stay out of town during treatment? Was there any help with those associated costs?

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I’m rolling up my sleeves, getting outdoors, and enjoying the sun!  So far I got some petunias, pansies, violets, tomatoes, and lavendar to plant.  I’m cleaning out old beds, and working on the mower to get it started.  Before I had enough energy to do these things, and it was still cold but sunny, I tried to sit out in the sun for 20 minutes a day.

When I was first diagnosed with breast cancer, one doctor checked my Vitamin D levels and found out they were very low. He recommended that I take 2,000 units of Vitamin D3 each day and I have been taking that amount for a year now.  I had my levels checked a month ago and they were on the low side of normal, so I am continuing to take the same amount, as well as spending time working outdoors in the sunlight.

Last year I read about a study done in Nebraska that said women with low levels of Vitamin D had a higher rate of breast cancer.

Today I read this:

Research now links vitamin D deficiency with a significantly elevated risk of breast cancer. So why isn’t there public outcry to continue funding this breakthrough science?

The research on vitamin D and breast cancer prevention to date is impressive:
• A 2006 paper published in Anticancer Research established that women with higher vitamin D levels are 50 to 70 percent less likely to develop breast cancer.
• A 2007 study in the American Journal of Epidemiology reported that women with high sun exposure levels – the most natural and abundant source of vitamin D – had half the risk of developing advanced breast cancer.
• A 2002 paper in Occupational and Environmental Medicine established that women who received regular sun exposure were less likely to die from breast cancer.


A Mayo’s web site says that health professionals are realizing that the recommended dosage of Vitamin D may not be high enough, but they haven’t agreed on what it ought to be. 


The National Academies of Sciences currently recommends 200 international units (IU) of vitamin D for children and adults up to age 50 and 400 to 600 IU for adults older than age 50. However, researchers now question whether these levels are adequate for optimal health.

So, how much vitamin D is enough? There’s still much debate about what the recommendations should be. But most researchers agree that a daily intake of 800 to 1,000 IU would benefit many people . . .

One article says the benefits of Vitamin D in preventing breast cancer may be found more in younger women.  On the other hand, an April 2008 article in Science Daily says

Genetic variations in the body’s receptor for vitamin D could increase the risk of breast cancer in postmenopausal women, according to a new study.

and this in another Science Daily article

The result of the study involving 1,394 breast cancer patients and an equal number of healthy women after menopause was surprisingly clear: Women with a very low blood level of 25(OH)D have a considerably increased breast cancer risk. The effect was found to be strongest in women who were not taking hormones for relief of menopausal symptoms. However, the authors note that, in this retrospective study, diagnosis-related factors such as chemotherapy or lack of sunlight after prolonged hospital stays might have contributed to low vitamin levels of breast cancer patients.

On the other hand. . . . .

ScienceDaily  Low blood levels of vitamin D have long been associated with disease, and the assumption has been that vitamin D supplements may protect against disease. However, this new research demonstrates that ingested vitamin D is immunosuppressive and that low blood levels of vitamin D may be actually a result of the disease process. Supplementation may make the disease worse.

So who knows? If the last article is right, then sunshine is okay and supplements are not.  That makes sense.  In a workshop on nutrion for cancer patients, we learned about getting what we need from what we eat, rather than looking to supplements.  We may not be able to get enough Vitamin D from what we eat, but we can get it from sunlight.  


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I got a call with the results of the genetic testing. I am negative for BRCA1 and BRCA2.  

Information from National Cancer Institute:

What does a negative BRCA1 or BRCA2 test result mean?

A negative test result will be interpreted differently, depending upon whether there is a known mutation in the family. If someone in a family has a known mutation in BRCA1 or BRCA2, testing other family members for that specific gene alteration can provide information about their cancer risk. In this case, if a family member tests negative for the known mutation in that family, it is highly unlikely that they have an inherited susceptibility to cancer. This test result is called a “true negative.” Having a true negative test result does not mean that a person will not get cancer; it means that the person’s risk of cancer is the same as that of the general population.

In cases where no known mutation in BRCA1 or BRCA2 has previously been identified in a family with a history of breast and/or ovarian cancer, a negative test is not informative. It is not possible to tell whether a person has an alteration in BRCA1 or BRCA2 that was not identified by the test (a false negative), or whether the result is a true negative. In addition, it is possible for people to have an alteration in a gene other than BRCA1 or BRCA2 that increases their cancer risk, but is not detectable by this test.

Information from National Cancer Institute

What are BRCA1 and BRCA2? Each year, more than 192,000 American women learn they have breast cancer. Approximately 5 to 10 percent of these women have a hereditary form of the disease. Changes, called alterations or mutations, in certain genes make some women more susceptible to developing breast and other types of cancer. Inherited alterations in the genes called BRCA1 and BRCA2 (short for breast cancer 1 and breast cancer 2) are involved in many cases of hereditary breast and ovarian cancer. Researchers are searching for other genes that may also increase a woman’s cancer risk.The likelihood that breast and/or ovarian cancer is associated with BRCA1 or BRCA2 is highest in families with a history of multiple cases of breast cancer, cases of both breast and ovarian cancer, one or more family members with two primary cancers (original tumors at different sites), or an Ashkenazi (Eastern European) Jewish background. However, not every woman in such families carries an alteration in BRCA1 or BRCA2, and not every cancer in such families is linked to alterations in these genes.

More information from National Cancer Institute

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