What follows is a guest blog from Pat Prijatel. Pat is the creator of the Positives About Negative blog and the author of Surviving Triple-Negative Breast Cancer (to be published in autumn 2012),  both motivated by her own journey through triple-negative breast cancer.   She is a recognized authority on the magazine industry as co-author of The Magazine from Cover to Cover, now in its third edition.

As head of the magazine sequence at Drake University, she was an award-winner teacher, the first woman to become a full professor in the School of Journalism and Mass Communication, and the E.T. Meredith Distinguished Professor.   She was also the first director of the School of Journalism and founder of the E.T. Center for Magazine Studies.

Before I was diagnosed in 2005, I thought breast cancer was a one-disaster-fits-all disease.   I believed all breast cancers were fueled by estrogen, and that, as a 60-year-old woman who had never taken hormone replacement therapy, I was not at risk of breast cancer of any flavor.

My fear and confusion were magnified when doctors started talking about the fact that I had an especially dangerous form of breast cancer. (As though I had thought there was cancer that wasn’t dangerous.)

I hit the Internet and found medical journals that helped me understand what was going on in my body.  Hormone-negative breast cancer defied my expectations of the disease.  It does not play by the rules I considered normal.  I expected it to mostly affect postmenopausal women whose estrogen supplies were depleted.  Not so. As women age, they are more likely to get the more common form, hormone-positive.  Younger women get hormone-negative.   I thought all breast cancer responded to tamoxifen, but found that hormone-negative does not.

The medical books I pored through spent little time on hormone-negative. Still, up to 20 percent of all breast cancer patients—170,000 a year worldwide—have this disease.

So I wrote a book, Surviving Triple-Negative Breast Cancer, to be published this fall by Oxford University Press.  It is a more organized offshoot of my blog, Positives About Negative.

Things have changed drastically in terms of research since my diagnosis nearly six years ago. (Six years!)  Hormone-negative, especially triple-negative—estrogen-negative, progesterone-negative, and Her2/neu-negative breast cancer—is now a major area of medical research, which is yielding new treatments and prevention strategies.   The term triple-negative breast cancer first appeared in medical literature in 2005.  Since then, it has appeared in more than 600 different publications. So, those of us with this disease are now benefiting from a great deal of new information.  We’re no longer the wallflowers at the breast cancer prom.

The process of educating myself about this disease was difficult and time-consuming. I benefited from already knowing my way around a research paper, plus I had easy access to journals through the university library.  I began writing magazine articles about breast cancer, which allowed me to interview top researchers in the field, a serious payoff to my decision 40 years ago to become a journalist. But what about all the other women without the benefits I enjoyed, who didn’t have the advantage of that research?

 In my book, I explain and describe this disease through several lenses.  First is my story, which I regurgitate early on and use sparingly throughout the rest of the book.  Second are the stories of wonderful women throughout the United States—in their 20s, 30s, 40s, 50s, and 60s— who have fought this disease.  Several have been disease-free for decades, others for only a few years.   I try to present their stories honestly, showing that this can be a harsh disease and that fighting it is no picnic.  I focus on the fact that most women survive, but acknowledge that this disease can be a serious threat.  I have dedicated the book to the women I have met who have died from triple-negative.

Third is the research.  In most cases, I rely on articles published in peer-reviewed journals, such as the Journal of the American Medical Association, New England Journal of Medicine, Journal of Clinical Oncology, Annals of Internal Medicine, and Annals of Oncology. I use footnotes throughout; I have learned through my blog that my readers appreciate being able to go back to the original research.

I do not intend this to be a book on all aspects of cancer—just one that fills the gaps other books leave in our understanding of triple-negative and other forms of hormone-negative breast cancer.  I am not a scientist nor do I pretend to be one.  I have spent five years with my nose in this disease and I am sharing what I know, what I have experienced, and what others have experienced.  All medical information has been fact-checked and verified.

When I began this project, I was thoroughly intimidated by it and often asked myself why I was writing this book and not the people who have researched this disease.   But, I realized, no book exists, so somebody has to do it.  And, as I progressed, I realized that I had a unique and valuable perspective, as a woman who has dealt with this disease and as a journalist and educator.  I can infuse the book with the voices of this disease; I can show the who as well as the what of hormone-negative. I can look at it from all angles, the way a patient does. I know when clarification and expansion are necessary and when words such as aggressive and deadly need interpretation so they explain rather than frighten.  I can give readers a sense of control in addition to information.

My goal is to inform, educate, calm, encourage.  Through women’s stories I show that this disease can be beaten. Through research I show how.

For weeks after my bi-lateral mastectomy, I sometimes lost my balance when getting out of bed or standing up from a sitting position. I was still getting used to not having anything weighing me down in front now that my breasts were gone.

I’d opted not to have reconstruction and needed to wait almost two months before my surgeon felt I could be fitted for my prostheses and the bras that held them securely in place.

I chalked up my loss of balance to still being weak after surgery. It wasn’t until I went for my first fitting for my prostheses that I learned what was causing me to lose my balance on a fairly frequent basis.

When I met with the certified mastectomy fitter, she mentioned the importance of wearing a prosthesis (es) following a mastectomy or bi-lateral mastectomy.

As she put it, being fitted with a breast prosthesis that matches in size to the remaining breast, the weight equilibrium of the body is kept in balance. In my case, having had a bilateral mastectomy, being fitted with two identical weighted prostheses was necessary to restore and maintain body balance.

The fitting of weighted breast prosthesis is not only for aesthetic appearances, it is for balance. It is a therapeutic measure that replaces the weight of the lost breast(s).

A woman’s body is essentially symmetrical; imbalance occurs when breast or breasts are removed. When the body is not properly aligned, back, shoulder and neck discomfort may result.

Wearing weighted silicone prosthesis(es) restores the body’s natural balance. Not wearing a breast prosthesis(es) or wearing one(s) that too heavy or light can result in the following:

• Spinal curvature

• Shoulder drop

• Muscle contracture, with accompanying discomfort (neck or back pain).

• Balance problems

So, fitted with my prostheses and wearing them daily, my balance problems are a thing of the past.  I have had no difficulties with neck, back or shoulder pain.

It took a week or so to get used to carrying the weighted prostheses after eight weeks of going without breasts, real or otherwise. These days, I often forget that I am wearing prostheses. I am so used to the weight and the feel of them.

Each year my insurance covers the cost of additional bras and prostheses. Medicaid, Medicare and most private insurance companies cover, at least in part, if not entirely the annual or bi-annual purchase of new prosthesis(es).

The Lancet Oncology and The Lancet recently carried information on the safety of treating  most cancers in pregnant women with chemotherapy. The reports note that prematurity carries a higher risk than chemotherapy for the infant.

Frederic Amant, PhD, of University Hospitals Leuven in Leuven, Belgium, and colleagues reported online in The Lancet Oncology that children exposed to chemotherapy in utero showed no delay in growth or increase in problems with their central nervous system, heart, or hearing compared with the general population,

“True oncological emergencies in pregnant patients are rare (except for leukemia),” Philippe Morice, MD, of Institut Gustave Roussy in Villejuif, France, and colleagues wrote in a commentary accompanying the Lancet series. That makes timing the big question in cancer treatment during pregnancy, they noted.

The commentary stated, “The crux of the dilemma is finding a balance between the need to delay treatment while the fetus develops and the need to induce a premature delivery.”

Prematurity was the one risk identified among 70 children exposed to chemotherapy as part of their mothers’ treatment for cancer during pregnancy in a multicenter observational study by Amant’s group.

Two-thirds of the children were born before 37 weeks gestation. Their cognitive development scores, although still in the normal range, were lower than those carried to term.

Each additional month of gestation was associated with a statistically significant 11.6-point mean increase in IQ (100 is average).

Other assessments, including behavior, overall health, hearing, and growth, came up normal for the children exposed in utero to chemotherapy who were followed to about age 2.

Some subtle differences in cardiac and neuro-cognitive measures, though, might warrant further monitoring, Amant’s group suggested.

Elyce Cardonick, MD, of Cooper University Hospital in Camden, N.J., wrote in an accompanying commentary, “This study can reassure pregnant women, and their physicians, that the benefits of maternal treatment do not seem to be outweighed by any long-term consequences for the exposed fetus with regards to cardiac or neurological function.”

For the mothers, available evidence also suggests that these women don’t face higher mortality risk from their cancers than non-pregnant cancer patients, Dr. Morice noted.

With regard to a review specific to treating Breast cancer in pregnant women, Dr. Amant suggested that there is no reason to terminate the pregnancy, since it doesn’t improve prognosis for the mother. Treatment is not only possible during pregnancy but can actually improve the outlook for the baby by preventing medically-induced preterm birth, Amant’s group reported.

Chemotherapy is supported by evidence for use after fetal organs form, which is from 14 weeks’ gestation on, while surgery can be done during any trimester.

Radiation, depending on the dose received by the fetus, can result in poor fetal outcomes, so that decision should be made on an individual basis, the researchers noted.The diagnostic strategy should also be discussed with multidisciplinary help to reduce fetal radiation exposure, they  added.

While Chemotherapy has been proven to be an acceptable treatment, targeted and hormonal therapies like bevacizumab (Avastin) and trastuzumab (Herceptin) were noted as contraindicated in pregnancy for women with breast cancer.

Primary source: The Lancet
Source reference:
Morice P, et al “Gynaecological cancers in pregnancy” Lancet 2012; 379: 558–69.

The results of a recent trial study indicated that when women are diagnosed with hormone receptor-positive breast cancer at an older age (65-74) their mortality rate is higher when compared with young women (under 65).

These findings were noted in the Feb. 8 issue of the Journal of the American Medical Association.

While the reason for the findings isn’t clear from the trial, “Under-treatment, in particular under-treatment of women with either chemotherapy or radiotherapy, may explain age-specific outcome in this relatively healthy population,” the research group suggested.

The 9,766 women enrolled in the randomized TEAM (Tamoxifen Exemestane Adjuvant Multinational) trial all got surgery and endocrine therapy.

A prior analysis of this trial, which had no upper age limit, pointed to more frequent drug discontinuation and less subsequent therapy, including radiation, among the women patients 75 or older.

Only 5% of the women 75 and older got adjuvant chemotherapy, yet, 48% of them had nodal involvement.

Analysis by age included 1,357 women 75 or older and 3,060 women ages 65 to 74, although the largest proportion of the women enrolled were under 65.

During a median of about five years of follow-up during the trial, the incidence of death from breast cancer was higher in the older age groups:

• 8.3% in patients ages 75 or older
• 6.3% in patients ages 65 to 74
• 5.7% in patients younger than 65 years

But all-cause mortality also was higher in the older groups due to competing causes of death, such that the proportion of deaths due to breast cancer declined with age, from 78% before age 65 to 36% at 75 and beyond.

Tumor size was larger at older age. Risk of breast cancer relapse also tended to be higher at older ages in multivariable analysis, with a hazard ratio of 1.07 at ages 65 to 74 and 1.29 at ages 75 and older, compared with those younger than 65

That finding suggested that selective misclassification, with death more often attributed to breast cancer at older ages, wasn’t likely a source of bias.

The research group cautioned that the results might not generalize to all breast cancer patients because the trial included only estrogen and progesterone receptor-positive breast cancer in postmenopausal women.

“These data underline the need for age-specific breast cancer studies in women in order to improve breast cancer outcome in patients of all ages,” the researchers concluded.

Sources:

• Journal of the American Medical Association

• Van de Water W, et al “Association between age at diagnosis and disease-specific mortality among postmenopausal women with hormone receptor–positive breast cancer” JAMA 2012; 307: 590-597.

As a young girl,  walking with my aunt, I saw a woman on the street with one arm twice the size of her other arm. I asked my aunt about it. Her answer…”Don’t stare. You don’t need to know about it.”

Years later, I noticed a woman with a long bandage-like sleeve on one arm. When I asked a friend, a student nurse, about it she told me the bandage, as she called it, was to keep the arm from swelling. She explained that sometimes, after have breast cancer, a woman’s arm would fill up will lymphatic fluid and that is what caused the swelling. Not the most scientific description, but I got the point. In the early 60′s women, even nurses, didn’t talk about breast cancer above a whisper.They certainly didn’t speak of side effects, such as lymphedema.

These days, if a woman gets lymphedema, she no longer has to walk around with an arm covering that looks like a bandage.

So…a working definition of lymphedema before we learn about the care of this condition.

Lymphedema is the accumulation of fluid at or near the site of cancer surgery . In the case of breast cancer, it causes swelling in the hands, the arms, or the chest – as result of a blockage in the lymphatic system. The lymphatic system  is a  network of vessels running the length of the body through which lymphatic fluid travels to protect the body against invaders.

Lymphedema is often described as a painful and chronic swelling of the lymph nodes. It may affect up to 70 percent of women who have undergone surgery or received radiation for breast cancer.

The following post is written by Josh Levin, brother of Rachel Levin Troxell, founder of LympheDIVAs who took over as president of the company after Rachel passed in 2008 of metastatic breast cancer.

Mr. Levin describes the products his company offers to address the need for compression garments to manage the symptoms of lymphedema, such as hand, wrist, arm swelling.

There are several things that  that separate our lymphedema product medically from others.

What’s most important to note is that our graduated compression is the same as others. But how it works is something that we’ve made some slight changes to:

1) Gripper Band Our gripper band, called the Diva Diamond Band, is not made of silicone. We know that there is a percentage of the population with this allergy and we chose not to limit their choices. We use a substance called Plastisol, which is hypoallergenic and non-toxic. In addition, many of the other gripper bands are an elastic band with hard dots sewn to the top of the sleeve. This effectively adds a higher band of compression at the top of the sleeve where compression should be less and could potentially act as a tourniquet type effect. We screen print our Diamond Band in a wide pattern to the inside of the sleeve. This helps keep it up, doesn’t affect compression and doesn’t leave a mark in the wearer’s arm.

2) Moisture-Wicking and Breathable. Our garments are made to help keep your arm cool. A cool arm can lead to less capillary flow which can reduce swelling.

3) Fitters and therapists are provided with a chart that can show the compression at each measurement point for any given patient. This ensures that the patient is getting the compression required and that there is enough of a differential between the regions on the arm to help promote the flow of lymphatic fluid.

4) Our gauntlets are made to have nearly no compression at the wrist. This prevents an overlap of compression at that point so that fluid can flow from the hand into the arm.

Editor’s note: Josh supplied me with a compression sleeve to review and share my comments with you. Since I do not have lymphedema, I  asked a friend who does to try the sleeve. She found it comfortable and cool to wear.

The lymphedema sleeve is attractive and not the least bit medical looking. It can be with a sleeveless top or a shirt, top or dress that has a sleeve.

After having had breast cancer, many of us want to do something that makes treatment and coping with the long-term effects of breast cancer easier for others affected by the disease.

In 2007, Rachel Levin Troxell and Robin Miller, both breast cancer survivors, met in a doctor’s office after discovering they had lymphedema.

They went to find a compression sleeve for their lymphedema  and were dismayed at their options – or lack thereof. All they found were garments that were very rough textured, heavy, hot, beige and bandage-like. A lifetime of wearing a garment like that was depressing and frustrating.

Rachel’s therapist, Dr. Andrea Cheville (now of the Mayo Clinic), told her that if she didn’t like those, then she should do something about it.

Rachel was already a proven entrepreneur after creating a business filming documentaries for families and businesses. She went off to develop a garment that she would want to wear.

As a triathlete, she was aware of sports compression garments and wanted to meld the look and feel of those with the required graduated medical compression to the ones that had been on the market for decades. She wanted to create a sleeve that would be moisture wicking, breathable, and silky to the touch.  She wanted the lymphedema sleeves to come in colors that didn’t cry out “I’m sick!”

Rachel and Robin developed the LympheDIVAs Medically Correct Fashion garments. Entirely designed and made in the US, these garments opened the door for women to have a choice in what they needed to wear for lymphedema garments and feel good about wearing them.

Starting with solid colors, LympheDIVAs launched and changed the industry.

Other companies followed with lymphedema sleeves in alternate colors, but LympheDIVAs kept innovating by adding patterns, crystal designs and a new gripper band that didn’t use silicone.

Unfortunately, Rachel’s cancer metastasized in late 2007 and she passed away on January 22, 2008. Before she died, she asked her father, Dr.Howard Levin and her brother, Josh Levin to continue her mission.

Rachel’s determination and compassion to improve the lives of breast cancer survivors is very much ingrained in the spirit of LympheDIVAs. Her family hopes that LympheDIVAs compression apparel will continue to inspire breast cancer survivors everywhere to feel as beautiful, strong and confident as Rachel was.

LympheDIVAs…To Be Continued in February 11^th post

Visit…www.lymphedivas.com

Source: Josh Levin, President, LympheDIVAs

After a lumpectomy for my first breast cancer in 1999, I had the standard treatment following surgery…external beam radiation.

After the initial tattooing to establish the markers for the treatment area, the first 15 days of treatment were a big nothing. The biggest adjustments to radiation treatment were:

• Getting up earlier every weekday morning to have treatment before heading off to work
• Wearing clothing that accommodated going without a bra and was easy to get in and out of for treatment
• Not using deodorant on the side being radiated

Then came week four…when the cumulative effects of radiation kicked in. Then getting up and getting to treatment, putting in a full day’s work, and keeping up a positive attitude got much harder to do.

The fatigue of radiation can only be described by one who has been through it. It was not as my radiation oncologist described…tiredness relieved by a nap. For me it was not a tiredness but a loss of energy that made doing the simplest tasks a major effort.

Finally, the six + weeks of radiation were over. It was a few weeks before wearing a bra was comfortable. It took a few months before I felt I had all my energy back. In retrospect…not so bad. There was no hair loss, no severe side effects and no lasting problems from the treatment.

According to the National Cancer Institute the side effects of external beam radiation may include:

• The skin on the treated area becoming red, dry, tender, and itchy.
• Your breast may feel heavy and tight.
• Bras and tight clothes rubbing your skin causing soreness.
• Your skin becoming  moist and “weepy.”
• A lasting change in the color of your skin.
• Tiredness midway to the end of treatment .
• Changes in  the size of your breast and the way it looks.

Following my second breast cancer, another primary, I was strongly encouraged to have genetic testing.

Before I agreed, I researched the pros and cons of genetic testing. Here is what I learned:

• Genetic testing is a process that looks for inherited genetic alterations that may increase your risk of certain cancers.

• For breast and ovarian cancer risk, a simple blood drawing is all that is necessary for testing. The test involves looking for altered genes such as BRCA1 and BRCA2. Finding an altered gene can take several weeks. So your test results may not be ready right away.

• The price of testing varies and, in some cases, may not be covered by health insurance.  Ask your doctor or other health professionals for more information on genetic testing, privacy issues, and insurance coverage.

Before getting tested, learn /think about:

• The limits of the test
• The advantages and disadvantages of the test
• Would knowing this information cause me to make changes in my medical care?

Find out the limits of the test:

• Testing for breast and ovarian cancer risk will not give you a simple “yes” or “no” answer.
• If a gene alteration is found, this will tell that you have an increased risk of getting cancer, but it will not tell if or when cancer will develop.
• If an alteration is not found, it still is no guarantee that cancer won’t develop.

Concerns about impact of learning results?

• Genetic testing can affect relationships with family members.
• Think about who in your family might want to know your test results, and who you’d like to tell.

Advantages and Disadvantages of Genetic Testing

Having a genetic test may help  to:

• Make medical and lifestyle choices
• Clarify your cancer risk
• Decide whether or not to have risk-reducing surgery
• Give other family members useful information, should you choose to share results
• May explain why you or other family members have developed cancer

The disadvantages to testing:

• There is no guarantee that your test results will remain private
• Although rare, you may face discrimination for health, life, disability, and other insurance
• You may find it harder to cope with your cancer risk when you know your test results
• If you find that you do not have an inherited altered gene, you may think that you have no chance of getting cancer. People who are found not to have an inherited cancer gene can still get cancer.

If  I find out that I have an inherited altered gene:

You can make choices that help lower your risk of getting cancer or help find cancer early. You do not need to be tested to consider these options.

• Increased monitoring. You may choose to be watched more closely for any sign of cancer. This can include more frequent breast and pelvic exams, mammograms, breast MRI, breast self-exams, ultrasound of the ovaries and breasts, and blood tests.
• Risk-reducing surgery. Called prophylactic (PROH-fuh-LAK-tik) surgery, this is when women choose to have healthy ovaries and/or breasts removed to reduce their chance of getting cancer.

Before Deciding:

If you are considering genetic testing,  talk with a professional trained in genetics before deciding whether to be tested.

For more information on genetic testing or for a referral to centers that have health care professionals trained in genetics, call the National Cancer Institute’s Cancer Information Service toll-free at 1-800-4-CANCER (1-800-422-6237), or visit online at www.cancer.gov.

In the end, I chose to have genetic testing. The results..negative. So now I know for sure that, like most of us with breast cancer, the cause of my breast cancer is still an unknown.

Source information: National Cancer Institute

When my friend Mary’s hair grew back after completing chemo, she got quite a surprise.

Before chemo, her hair was light brown and on the straight side. After chemo her hair grew in silvery white and curly!

Another friend, Frances, had jet black wavy hair before chemo and it grew back reddish-brown, soft and straight!

While not everyone experiences hair re-growth the same way, there are some shared experiences, common enough to share here.

• Soft fuzz will start growing two to three weeks after you finish treatment.
• Re-growth speed, on average, is an inch of hair growth about two months after treatment
• A full head of hair within six months to a year of completing treatment

When your hair grows back, there may be changes in shade and texture. Hair may be grayer than before, and there may be bands of pigmentation. New hair can be very soft to the touch and fragile at first.

Hair stylists suggest that once you can grasp your hair between your fingers, it’s time for a trim. You may not want to part with even a fraction of an inch, but stylists agree that eliminating fuzzy or frizzy ends will help keep your hair looking healthy and give it more fullness.

Be sure to use mild shampoos, such as Ivory and shampoo every few days rather than every day.

Consult with your oncologist and dermatologist before doing any chemical processing of your new hair, including coloring, bleaching, or getting a permanent.

If new hair growth is slow to occur, speak to your oncologist about it. Causes may include treatment-induced low levels of zinc or iron, thyroid problems or stress.

Source: Health.com

It was snowing.

A woman and her young daughter were wet and cold when they arrived for the woman’s daily radiation treatment.

A hospital volunteer greeted them in the waiting area and extended her hand to the little girl. They went off to get some breakfast in the hospital cafeteria while the woman had reatment.

I waited for the woman after her treatment and over coffee, we spoke about her situation and what the American Cancer Society (ACS) could do to help.

She immigrated to the US from the Philippines three years earlier, shortly after her husband died. She moved in with her sister, a nurse. Before her breast cancer, she also worked as a nurse. She and her sister worked different shifts so that one of them could always be home with the little girl.

Chemo and then radiation made it impossible for her to work and money was scarce. With no car, she had to travel over an hour each way for daily radiation. She had to bring her young child with her because her sister was working 12 hour shifts to make ends meet. She had no other family in the area to help with child care.

On bad weather days, hospital staff dipped into their own pockets to send her home in a cab after treatment.

As a navigator for ACS, I put her in touch with her local ACS office. She began receiving transportation assistance and a referral for a free home-delivered meals program.

While this assistance made a huge difference in her situation, she still needed to care for her child while weak and sick from treatment. With no family nearby to mind her child each day, she continued to bring the child with her to treatment.

Unfortunately, this is not a unique situation. I met many women with breast cancer who had no one to help them cope with caring for their children during treatment.

Currently, there are no standards of care to guide treatment providers on how to help cancer patients with young children other than to refer them to the hospital’s Department of Social Services.

Given that there are many young women in breast cancer treatment who have small children, hospitals and physicians need to have a formal plan in place to offer practical supports.

Whatever the plan, a key component of the plan needs to be an onsite children’s play area. It can be staffed by volunteer.  Here, children can participate in activities while their moms see their doctors, receive treatment, or participate in a support group.