Stressors - to Fear or Not to Fear ... That is the Question

In this day and age, we all worry about something. Those of us who visit this site regularly might fear breast cancer, the return of breast cancer, or even if we can survive breast cancer. It’s no secret that fear, and the stress it causes, can in itself make us ill. I truly believe that. Each time I’ve become seriously ill (including with breast cancer), each illness was immediately preceded by an unrelenting series of high stress factors and some form of physical injury.

According to researchers, many factors contribute to the onset of cancer. High on the list are such items as exposure to carcinogenic agents, behavioral risk factors, compromised immune systems… and stress. Studies prove that the stressors most strongly associated with breast cancer are caused by major life events such as the death of a spouse/close relative, loss of a job, divorce or separation, and personal injury/illness. Stress can also increase the risk of recurrence or reduce the outcome of treatment. I didn’t get “it” until after my breast cancer treatment. Then I started with stress management counseling which ultimately enabled me to put situations and people into perspective and eliminate certain stress inducers from my life. OK, it didn’t happen overnight, but into the second year I finally began to see the light.

All of us who have had a cancer, face the “what if” anxiety stressor and so do our spouses, partners, or family. Anyone who has not confronted a life threatening illness may be confused as to why we continue to worry. “You’ve been treated and you’re OK. What are you worrying about?” Something very real is the answer.

Dr. Laura Dunn, professor of Psychiatry and Director of Psycho-Oncology at the University of California SF says “that although cancer is increasingly labeled a chronic illness, it’s different from arthritis in that it’s more of a chronic threat.” Some of us are more adept at handling threats than others, but with breast cancer, “no one can ever guarantee you a cancer- free survival.” However, if you can put it in perspective, it can be viewed as a bump in the road of life.

The article Chronic Stress: The Hidden Health Risks in the Huffington Post, states that stress causes a chemical cascade that impedes the delicate dance of chemicals that keep the body functioning smoothly.

The statistical info on the risk of getting breast cancer is pervasive, but what exactly do all those numbers mean? Should they be included in our stress bucket? Do the percentages mean something important to us as individuals? A statistical risk is a probability, or chance that something can occur. So the glass can be either half full or half empty.

According to the Mayo Clinic, there are two different types of risk: Absolute Risk and Relative Risk.

Absolute risk refers to the actual numeric chance or probability (percentage) of developing cancer within a specified time period, like a lifetime risk at a given age.”

Relative risk gives you a comparison or ratio rather than an absolute value. It shows the strength of the relationship between a risk factor or a particular type of cancer, by comparing the number of cancers in a group of people who have a particular exposure trait with the number of cancers in a group of people who don’t have that trait.”

How then do risk statistics relate to us? Again according to the Mayo Clinic, “Cancer is highly individualistic. You can have two people the same age, sex, race, socioeconomic status and comparative lifestyles and still have totally different disease experiences.”

The trick is to weigh what you hear and pay attention to what you might be able to change in your life to protect your health, and put the rest on the back burner.

So, to return to the beginning… besides the threat of breast cancer, we worry about other things such as: food additives, molds, chemicals in cleaning ingredients/cosmetics/clothing /furniture, the pesticides in nearly everything, what’s lurking in our seemingly clean bathrooms, dust bunnies that appear out of nowhere two days after we’ve vacuumed/run around with dust cloths, and related to this site - mammograms. But are these fears justified? Sometimes our concerns are focused on very improbable things.

We tend to have high fears over things that are relatively low risk and low fears about relatively high risk factors. Relative to this site – an example of a high fear with relatively low risk item would be mammograms. The risk that most people (including me) fear with yearly mammography is cancer from the radiation. According to the Mayo Clinic, radiation from the new mammogram machines is very, very low and not a risk factor.

On the other hand, listed below are common examples of low fear with relatively high risk things that you can and should do something about:·        

  • Tobacco Use
  • Lack of Exercise
  • Poor Diet
  • Accidents in the Home
  • Sunburn
  • Cell Phone Use While Driving (The National Safety Council reports that 1 in 4 accidents is related to cell phone distraction, and that the actual percentage is most likely much higher.)
  • Indoor Air Pollution
  • Antibiotic Resistance
  • Pesticide Use
Stress is something we create. Ultimately, we decide what’s stressful, what is not, and how much we are willing to tolerate. The higher your tolerance for stress, the more physical damage stress can accumulate over time. On the other hand if we watch for the bumps in life’s road and slow down as we approach them, we’ll be able to take those bumps in stride and continue on as far as we can imagine.

Beyond BRCA1 and BRCA2

The test to identify the BRCA 1 and BRCA 2 genes, indicative of a tendency to inherit breast and ovarian cancer, has been around for nearly 20 years, but many of us who have had breast cancer do not carry either gene. Are there other genes and tests that we can take if either cancer appears to run in our family?

The following information about what’s available is from a current newsletter from Fox Chase Cancer Center in Philadelphia and was written by Andrea Forman, MS, CGC:

Last year, Ambry Genetics Laboratory released a new gene panel looking at an additional 14 genes believed to increase the risk for breast cancer. Other laboratories have added their own tests, with some offering tests looking at up to 38 other genes. New technology called Next Generation Sequencing has given laboratories the ability to examine dozens, even hundreds of genes in roughly the same amount of time and with a similar cost to testing for only one or two genes. However new technology brings new challenges.

Many of these new genes are not well understood and their specific cancer risks may not be known. Many of the cancer risks are believed to be much lower than BRCA risks. With this uncertainty, guidance for cancer risk management can be difficult, and may lead to the same recommendations made based on family history alone. In other words, this test may not actually change any of the recommendations you would have received if you never had the test.

Another concern is the high likelihood of an unclear test result, called a variant of unclear significance. A gene change may be found, but we might not know whether the change increases the risk for cancer. With a test that looks at dozens of genes, we can find variants in several genes at the same time, making it even more difficult to interpret the results.

This new frontier of genetic testing holds many questions for doctors, genetic counselors, and patients. This includes the impact of testing on other family members and whether testing will be covered by insurance. As more people are tested, we will be better prepared to answer these questions.

The Fox Chase Department of Clinical Genetics has begun offering multi-gene panel tests to a small number of patients who have a particularly high risk of carrying a genetic mutation for breast cancer. A personal history of breast cancer under 45, an ovarian cancer diagnosis, or cancer history plus significant family history are necessary to be eligible for these new tests. Similar gene panels are available for hereditary gastrointestinal cancers and panels will soon be available for other cancer syndromes such as kidney and pancreatic cancer. For the men in your family, there is a genetic test for prostate cancer to pick up mutations in the HOXB13 gene (which accounts for 3% of men with a family history of prostate cancer).

NEWS for those of us who have already been diagnosed/treated for breast cancer:

According to a recent CBS news report and a study published in the October, 2013 issue of Lancet Oncology, Mass General Hospital Cancer Center (MGH) in Boston has validated a unique “fingerprint” in the primary tumor of breast cancer patients that can help identify a high or low risk of cancer recurrence. The Mass General Hospital researchers compared three current methods that predict recurrence risks in women with estrogen-receptor-positive breast cancers. The first was the breast cancer index (BCI) which looks for biomarkers. The second was the Oncotype Dx Recurrence Score, which analyzes 21 genes in tumor samples. The third looked at the ICH4 gene which is linked to breast cancer.

Using tumor samples from 665 patients, the researchers looked for breast cancer recurrence that occurred within 5 and 10 years after initial diagnosis. All of the three methods accurately predicted recurrence risks within the first five years, but only the BCI method (developed by MGH researchers and bioTheranostics, Inc.) accurately predicted risk within 10 years. Notably, BCI could clearly distinguish 60% of patients who had very low risk for recurrence and 40% who were at significant long-term risk.

Since the BCI identifies two distinct risk groups, it may provide a much-needed tool in determining those patients who need extended hormonal therapy and those who may be spared its well-known adverse side effects.

Although genetic testing is important, so are mammograms and self-checks. One in eight women will be diagnosed with breast cancer in her lifetime. One woman is diagnosed with breast cancer every three minutes.  According to the American Cancer Society: “We still don’t know what causes breast cancer, but we do know what can improve a woman’s chances for beating the disease: Early Detection!”

Turning cancer treatment into a different experience

Even while I struggled with the fear, anger, sorrow, and the sheer terror of having breast cancer, I was lucky. My husband was as supportive as any woman could imagine. He had his arm around me every step of the way. He went with me to every doctor’s appointment, test, procedure, operation, and treatment. He took notes and asked all medical personnel decision-making questions.

I tried my best to be my normal inquisitive and rational self but fear eroded my normal thought process. Focus was difficult. All I could wonder was will I survive and if I do, will I be able to conquer the disease or will this be a long and torturous road downhill. After all, this was my second go-around. I had dealt with the menace known as cancer once before. Let me say that the first time you hear the words” it’s cancer” is the worst, but, the second time is more destabilizing because it impossible not to think – “it’s back.” Now, that’s not technically true because my thyroid cancer didn’t spread to my breast, but that’s how I felt.

While we were waiting the requisite number of weeks between the operation and starting a new form of radiation treatment in trial at Fox Chase Cancer Center in Philadelphia, my husband came up with the idea that we should have a “Radiation Vacation.”  Neither of us had spent much time in Philadelphia since high school, so we researched everything that could interest us be it museums, historical sites, or gardens, then mapped out a schedule to fit around the treatments.

My treatment involved spending a few days having body molds made, a two day weekend, then multi-targeted treatments twice a day for 5 days. I started each day with a radiation treatment, was off for 4-5 hours, then, it was back to the hospital for another radiation treatment.  During the entire process, I met men and women waiting to receive similar treatments. We became like a class of friends waiting for the next lesson. Sadly, four months later I discovered one of my friends didn’t survive. That too was a lesson.

After every appointment and between treatments, my husband and I opted to do something special. Rain or shine, each day was chock full of new experiences. Instead of hanging around the hospital mulling anxiously about the next appointment or treatment session, we spent hours walking, painting, and writing at the Morris Arboretum, Longwood Gardens, Rittenhouse Square, The Philadelphia Museum of Art, The Philadelphia Museum of Science, Museum of Natural History, University of Pennsylvania Museum of Archeology & Anthropology (the Penn Museum), Academy of Natural Sciences, The Barnes Foundation (at the original location), and many event capping discussions over dinners. Each day was a new adventure.
 
When I rang the bell after my final treatment, all of those experiences and their memories fused into a hope for the future, a passion to help my immune system beat this disease, and extreme gratitude for my husband whose idea to give me a different experience softened a very scary time in my life and still enables me to remember that week in July 2007 with gratitude, wonder, and hope.  

Yes, I also followed up my treatment with a year+ of counseling and that too aided my overall recovery, but the creative support and unconditional love of your dear ones (friends or family) is one of the key support mechanisms for healing. If you find yourself in a similar position, be open to new ways of softening the stresses of your illness. You might discover you can enjoy a Radiation Vacation.

What are my testing options?

Breast density is an issue that most of us never think about until it comes time to experience a mammogram...then it's a hot topic. I never had any problems when I was younger, but after my lumpectomy, I must admit that I dread those tests. Actually, the only mammogram I've had since my surgery that wasn't painful, was one I had in April on new equipment (not 3D Tomosynthesis) at The Perelman Center for Advanced Medicine at the University of Pennsylvania, Philadelphia, PA. Maybe it was the equipment, maybe it was the technician, but I was both surprised and pleased that my scar tissue wasn't tortured.

I started having mammograms around the age of 42, when my mother, who like me had dense breast tissue, was diagnosed with breast cancer. While the tests didn't bother me at all, they were excruciatingly painful for her. So much so, that after her five years of Tamoxifen and the five mandatory yearly mammograms concluded, she refused to have another one. Thankfully for my mother, the cancer never returned, but any logical person would question if that was a wise decision. She was lucky, but did she make a sound choice? Her prediciment motivated me to possibly uncover what other, perhaps less painful, forms of testing might be available. Back in 2006-2007 there were two other readily available choices - Thermography and MRI.

Everyone knows about mammography and MRI’s but thermography is a bit more obscure. The theory of thermography is simple. According to the American Cancer Society report Mammograms and Other Breast Imaging Procedures (2010), thermography is a way to measure and map the heat on the surface of the body (in this case a breast) using a special heat-sensing camera. It's based on the concept that the temperature rises in areas with increased blood flow and metabolism. Translation: cancer and precancerous cells emit more heat, so thermography uses heat to detect an inflammation or cancer. Sounds logical. It doesn't compress your breasts, so it doesn't hurt. Sounds good. It doesn't involve radiation, so there's no chance of tissue damage. Sounds wonderful.

I couldn't afford to have an MRI that was not covered by my insurance policy which eliminated that testing option. In February 2007 I decided to pit a thermogram against a mammogram. Definitely not the normal route, but I'm analytical by nature.

In mid-February, my thermogram was clean - no cancer. Two weeks later, my mammogram revealed DCIS. Up to that point, I had never had a suspicious result from a mammogram (which I would have every 2-3 years). Given the diagnosis, the insurance company would now cover the third testing option: an MRI. The MRI ultimately confirmed the mammogram diagnosis. Yes, I had DCIS. Not exactly the result I wanted to hear but it did prove what I had learned in every science class I had ever taken - check, double check, and triple check your results before you believe your results or postulate a theory.  

If I had cancer, why didn't the thermogram detect it? Was the equipment faulty? Was the technician not properly trained? Was the room not the right temperature (between 68-72 degrees Fahrenheit)? Was it simply unable to detect and display a small, deep tumor?

I brought all of the test results to my surgeon and he showed me - on the images - where the mammogram and MRI displayed the cancer and the thermogram did not…a false negative.

Perhaps in time my body would have destroyed the cancer, as it's supposed to. But I was under considerable stress at that point in my life. My guess is that stress = an environment for illness, not one for spontaneous cures. There is always the chance that had I not treated the cancer, I would not be here to post a blog entry about my experiences.

If like me, you decide to experiment, it might be a good idea to use the National Cancer Institute's Breast Cancer Risk Assessment Tool to determine your risk of getting invasive cancer, and along with your doctor, factor those results into your decision-making process. For my money, the most effective route is to use all the tools available (perhaps not every year) rather than relying on just one. Doing nothing, like my mother did is an extremely chancy route. She was lucky, but in my books, betting your life on luck is a bad strategy.

News update: Mammography can sometimes give incorrect results (false positive/false negative). In the case of dense breast tissue, the test can apparently be less than adequate. While mammography detects 98% of the cancers in women with fatty breasts, it fails to see about half of the cancers present in women with dense breasts.

On July 1, 2012, a new VA law went into effect making it mandatory for all doctors and testing facilities to tell any woman with dense breasts that the condition can interfere with the effectiveness of a mammogram. It also requires doctors and providing facilities to advise their patients that ultrasound or MRI might yield better test results. Maybe now, insurance companies will be required to cover alternative breast cancer tests.

The law was modeled after existing laws in CA and NY. Additional states with similar laws in place are: OR, NV, TX, AL, CT, TN, MD, HI, and TX. States in the process of drafting their versions to enact: IA, UT, OH, MN, PA, NJ, MA, ME, SC, GA, FL.

On July 1, 2013, an updated amendment to the VA law went into effect. Language in the Virginia law has been changed from: "Your mammogram demonstrates that you may have dense breast tissue," to "Your mammogram demonstrates that you have dense breast tissue." The original law also made no mention of breast density as an independent risk factor. The amended law informs a patient that density "May also be associated with an increased risk of breast cancer."

Do you ask questions?

In the last 20 years, breast cancer has moved from something whispered about among friends and family to a topic that regularly receives headline news coverage. Everybody has an opinion. But it’s important to ask questions when dealing with the medical industry because ultimately you own the process when it comes to the treatment of your breast cancer.

For example, in 2007 I was diagnosed with breast cancer. I was unfortunate to have had some experience in dealing with the disease. My mother was diagnosed with breast cancer in 1990 and stayed with me in CT after the surgery and during her radiation therapy. About 6 weeks before my diagnosis, my younger sister was diagnosed with breast cancer. Now, that's certainly not a sequence of events anyone wants to experience, but it did give me a reason to ask a heck of a lot of questions, research the topic (albeit under stress), and seek alternatives rather than accept pat medical answers and solutions. The first and easiest was the issue of heredity.

Question #1: Was this genetic?  Both of us were tested and neither of us have the BRCA1 or BRCA2 gene.
Answer: No.

All three of us were asymptomatic. The cancer was caught early through mammography. To date, the only possible link doctors have offered is "exposure" to something. OK, we all lived for about 20 years in Northern NJ which is not exactly the healthiest area in the country. My mother was born in Italy, grew up in TN, lived in DC and NJ, Newport, RI, and finally moved to Northern VA. Like me, my sister grew up in Northern NJ, lived in Boston, MA and Tucson, AZ, then traveled widely in the Air Force – was stationed in Japan, ND, and VA and has lived in Northern VA for more than 20 years. I moved from Northern NJ to Warrenton, VA, to Fairfield, CT, then back to Northern VA. As an aside: both of my mother-in laws also had breast cancer, one lived in Northern NJ the other in Northern VA. I should also note that both my sister and I were diagnosed with thyroid cancer 15 years ago, again within 2 months of each other.

Question #2: So if it wasn't genetic could where we lived have caused it?
Answer: Very possibly. Location definitely seems to be a cause as Northern NJ and Northern VA are both statistical hotbeds for breast cancer, but there could be other reasons too.

Questions #3-7: Could it be environmental? Was it perhaps the radiation treatment we received after our tonsillectomies in the 1950’s? Maybe it was birth control pills or post-menopausal estrogen therapy? Could it have been due to toxic exposure or stress?
Answer: Could be yes to all questions. But only one of the five of us took birth control pills, and only one took post-menopausal estrogen therapy. That might have contributed to their cancers but not so for the rest of us.

My mother was fortunate to have been diagnosed at the start of lumpectomies being offered as a surgical option rather than the standard mastectomy. She also had six weeks of whole breast radiation as a post-operative therapy coupled with five years of Tamoxifen. My mother eventually developed multiple serious heart conditions and died of congestive heart failure. Humm, breast cancer radiation and heart disease...what’s the connection there?

Question #8: Did the large amount of radiation she received on her left side cause multiple heart issues in her later years?
Answer: Yes, according to my radiation oncologist. The old school treatment of 6 weeks of standard full breast radiation has been strongly linked to heart, lung and even bone problems.

But if radiation (in any form) is a required treatment, do we have any choices? This is a big question because the answer is that there are choices, depending on your situation. Questioning and serious pre-treatment research dictated my selection of post-operative providers, treatments, and my eating habits. I’ll dedicate future blogs to those topics.

Question #9: Is there anything else we can do to help our bodies fight the disease?
Answer: Perhaps.

Attention is now focusing on a more holistic approach to treating a disease that our bodies should be able to destroy on its own. Clearly we are losing our ability to fight illnesses our grandparents and great-grandparents rarely, if ever, contracted. One possible contributor could well be what we are eating. It's no secret that since the 1950's our food supply has become more toxic with each passing decade. Study after study show that environmental and lifestyle changes are certainly contributors to the rise in cancer rates.

Question #10: Is it what we are eating as well as where and how we are living that's weakening us to the point where we are unable to fight breast or any other cancer?
Answer: Quite possibly and stay tuned!