Mothers Know Best

By: Amanda Held
Posted In: News

It was February, 1990. The Massachusetts air was cold and signaled winter. It began as what seemed like a normal Sunday evening for Rhona Held.

She was in the kitchen preparing dinner for her husband and two kids when she was suddenly interrupted. It was a phone call.

It was her doctor. Three days earlier, Rhona had made a special visit to her doctor. She had felt a tiny lump in her left breast and wanted to get it checked out.

Now, the results were in. Tension seethed from the receiver. “Do you want the news over the phone or do you want to wait and come in?” the doctor asked. Three days had been long enough. She needed to know now.

“I tried to prepare myself”, she recalls but she soon learned that nothing could prepare her for what she was about to hear. “The results are positive” the doctor said, “You have cancer.”

Rhona Held is my mother. I was five-years-old at the time, and she told me about this devastating phone call years later. She says that she was stunned by the news but the doctor immediately assured her that “this was not a death sentence” and she was right.

Shortly after hearing the news, my mother underwent a series of treatments and recovery. The cancer seemed to be in remission. The treatments seemed to have worked.

Four years later, our family was planning their first trip to Disney World, a dream come true for a 9-year-old like me. But a few weeks before the big day, my mother gathered my sister and I together and sat us down for a talk.

Her words were hard to grasp. “Mommy is sick,” she explained “We won’t be going to Disney World.”

My mother’s cancer had returned. “I really thought it was gone,” she recalls but she was wrong. At such a young age, I was unable to comprehend what my mother’s diagnosis meant. My focus was on Disney World.

But 10 years later, and now a young woman myself, my focus has shifted towards my health.

Having a family history of breast cancer is a major risk factor for women. Having both a mother and a grandmother who have had the disease, means my chances are greater for developing it myself. This concerns me.

It is not an everyday worry or something that I agonize over but it is always in the back of my mind. Especially now, as a young woman it has become more of a growing concern.

So I decided to find out more, not just for myself, but for other women like me. Knowing cancer runs in our families, what can we do to reduce our chances? Is there anything that we can do?

My first call was to Dr. Michele Cyr, Professor of Medicine at Brown Medical School, who is on the staff of Rhode Island Hospital and in the spring of this year was named “physician of the year” by the Rhode Island Medical Women’s Association.

In her busy office at the Rhode Island Hospital campus in South Providence, Cyr was able to find some time to sit down and talk to me about the disease.

She said that the number of women who get breast cancer is very high, but treatments are very effective. “Many women are diagnosed but few die of the disease,” Cyr said. But what she also told me was anything but reassuring:

“We understand so little about the risk for breast cancer that there’s so much we don’t know,” she said.

These many unknowns that Cyr refers to may be the reason why an overwhelming amount of women like my mother are still being diagnosed with the disease and may be why breast cancer is still the most common form of cancer in all women.

To gain some perspective on how great of an impact this disease is having on women around the world, I searched for some statistics.

I found that according to the World Health Organization, last year alone more than 1.2 million people worldwide were diagnosed with the disease. Also, according to the website for the National Breast Cancer Foundation, Inc., “One woman in seven either has or will develop breast cancer in their lifetime.”

More shockingly, the website goes on to state that “every twelve minutes a woman in America dies of breast cancer.” This is an alarming fact and after reading it, my concerns began to grow.

To ease these concerns, Dr Cyr explains to me that there is a fair amount of research underway aimed towards finding ways to prevent breast cancer. Some of this she says is “managing risk factors” such as nutrition, diet and exercise.

However, once again, Cyr emphasizes the reality that so much of the risk of breast cancer is unknown. “It appears that there may be some benefit to exercise in terms of having a lower rate of breast cancer but it’s a very, very small benefit” she says.

It is something that is not going to completely eliminate a woman’s chances of getting breast cancer. However, Cyr makes it clear that “Exercise never hurt anybody.”

Although it won’t prevent breast cancer, it is good for so many things. She tells her patients that “It may not reduce your risk of breast cancer by very much but so what. Do it.”

In terms of nutrition, Cyr tends to stay along the same path. She says, “We know that healthy diets are good for a lot of different things but I don’t think we really know what may or may not contribute to breast cancer in terms of diet.”

For example, Cyr says that within recent years there has been a lot of interest in soy. The interest comes by looking at countries such as Asia where there is a high level of plant consumption and low level of breast cancer.

Estrogen is the female hormone and it is the hormone that is linked to breast cancer. A woman who has too much estrogen in her body would have a higher risk of developing breast cancer in her lifetime. Therefore, it is believed that these plant-estrogens are acting as a sort of anti-estrogen on the breast tissue and less estrogen equals a lower risk of getting breast cancer.

If this is true, then why not put young women like myself, who are at an increased risk of breast cancer, on one of these plant estrogen diets?

Well, once again, this theory has yet to be proven. There is no solid evidence that putting someone like me on a high-soy diet or plant-estrogen diet or a supplement will be helpful in terms of preventing my risk for breast cancer. C

yr says, “We don’t know at what age diet is important or even what elements of diet are important.” As a result, she tells me, “I don’t think there is any good evidence that going to Whole Foods tomorrow and buying a soy extract is going to benefit you in terms of breast cancer.”

After hearing all of these “unknown” factors, I was anything but at ease. In fact, my concerns were beginning to grow. There is all this research going on yet none of it has been proven to be conclusive.

I was beginning to lose hope. Wasn’t there anything definite I could be doing to reduce my risk of getting the disease?

According to Cyr, the answer is yes. Over the years, there has been a definite link between alcohol and breast cancer. Cyr believes that making sure you drink in moderation is one way to lower your risk for breast cancer.

“There is no question that with increased drinking of all kinds of alcohol, there’s an increased risk of breast cancer” she said.

Although this risk is small, she reminded me that there are other good reasons to decrease your alcohol consumption as well.

She advises all her patients not to have anymore then one drink a day.

Another known risk is obesity. Obesity is a risk because fat tissues produce more estrogen and the more estrogen a woman has in her body, the higher her risk for developing breast cancer.

Also, having your first child after the age of thirty puts you at a higher risk and having a very early menstrual period and very late menopause could put you at risk as well. This would equal more years of your body producing estrogen which, once again, leads to a higher risk of breast cancer.

There is also ongoing research in an area called chemoprevention. These studies, which have been more conclusive, are aimed at finding medications women might take that would essentially prevent breast cancer.

Usually, according to Cyr, these are in the category of anti-hormonal medications.

Cyr is involved in a specific study that is geared towards women with very dense breasts and for young women like me, this can often times be a problem.

Breast density alone is a risk factor for developing the disease; further, tissue density is a problem for mammograms, x-rays used to spot tumors.

Cyr says, “When you do a mammogram on somebody that has dense breasts or is young, it’s (the x-ray) much whiter. As women get older, their breasts tend to get fattier and so the mammogram looks more gray than white so that the tumors appear white on the background of gray.

When your mammogram is all white, you can’t see the tumors.” With the study Cyr is involved in, they are trying to eliminate this problem by finding a medication that decreases the density of the breast tissue.

If they are successful, this would lower a women’s risk of developing the disease.

I felt some-what better knowing that these studies are underway however I began to question the availability of such medications.

Within the next twenty years, I will be at my greatest risk of developing the disease and so will these medications be available for use at that time?

Dr Cyr explained to me that it takes a long, long time in terms of discovering preventive measures against breast cancer.

She says “With a lot of these preventive things you’ve got to be on this medication or be doing this thing for twenty to thirty years before we really see the benefit.”

Therefore, in my case, the question of whether or not these studies will ever be beneficial to me remains yet another unknown.

However, if I am unable to prevent the disease, I can feel reassured that if I were to get breast cancer, I’d be getting the most adequate, updated treatment available.

Dr. Cyr explains that treatment studies are a lot easier to do because according to her, “There are so many women diagnosed with breast cancer that you are able to do experiments.”

If the patient is willing, then these experiments can be done right away providing for a quicker result.

For young women like myself who have a family history of the disease, the problem may be a hereditary mutation of one of the two genes, BRCA (which stands for BReast CAncer) 1 or 2.

In a healthy body, there should be a working copy of each. These genes protect against breast cancer by producing proteins that suppress abnormal cell growth.

If a woman inherits this mutation, one of these genes is inactive from birth. As a result, their bodies are more susceptible to breast cancer and other types of cancers as well. They are also more likely to get the disease at a younger age.

According to a special report on breast cancer in Ladies Home Journal, “The lifetime risk of developing breast cancer for women with the mutation can soar up to 80 percent (compared with the general population’s risk of 13 percent).”

Although this number is alarming, the article then states that “this condition accounts for only 5 to 10 percent of all breast cancer cases.” Therefore, a woman’s chances of having the mutation are slim but if you do have it, then chances for developing the disease become much greater.

In regards to family history, about a quarter of all women who get breast cancer have a family history of the disease.

Knowing these facts and figures and knowing my situation, I began considering the option of genetic testing. Maybe this was the only sure way of knowing my chances of getting the disease. Perhaps it was the answer to all the unknowns.

Dr. Cyr suggests otherwise. Instead, she recommends that before I consider getting the testing for myself, my mother should get it first. If she were to have the mutated gene, it doesn’t necessarily mean that I would have it too however there would be a greater chance.

Therefore it would be reasonable to get tested and if she didn’t have the gene then I wouldn’t have to get tested at all. Of course in order to do this, my mother would have to agree to the testing and this is something she is hesitant to do.

“I would do it if you girls wanted me to”, my mother tells me, “but I would be hesitant to do so because I don’t know if you’re ready to have to deal with having to make a decision after finding out the results.”

This is a matter that Cyr is concerned with as well. She stresses that whatever the decision may be in regards to getting the testing, it is very important that the person who is having it must understand all of the implications. One of these implications is cost.

If you decide to have the test and your doctor is uncertain about what mutation you might carry, it can cost as much as $3,000 for a complete cycle of testing. However, if a first-degree relative such as my mother was found to be positive for a specific BRCA mutation; a single test may be given for around $400.

Alongside from cost, one of the biggest issues is what to do with the results. What preventive measures will be taken if the results come back positive? Will they choose to have their breasts removed or instead just be monitored more closely?

In addition to that, there are the issues of insurance as well. For example, Cyr says “If someone gets a positive result, how will they act on that and also what will that mean for them in terms of health insurance, life insurance because now, you have essentially labeled that person as having a condition.”

Dr Cyr makes an interesting point and a recent article in More magazine tries to clarify the issue. According to the article, if you are diagnosed with breast cancer then you are considered to have a disability.

Therefore, your rights are protected under the Americans Disabilities Act. On the other hand, if you are diagnosed with just the mutation, you would not be considered disabled.

As a result, you are left unprotected. For example, if you were to have the genetic testing and results came back positive for a mutation, it would not be against the law for an employer to refuse to hire you or refuse to give you a promotion.

In regards to health insurance and life insurance, the article states that “HIPAA, the federal law governing large group insurance plans, protects you from losing your insurance as long as you keep your job.

A group can’t kick you out but they can raise premiums (money that you pay for insurance coverage) for the entire group due to the risk. In individual policies, there’s no protection against being denied insurance or having your premiums raised.”

As for life insurance, there is no law or policy that prohibits companies from asking about test results and then using that information to deny you coverage.

With all these possible factors at hand, Cyr still says “It never hurts to ask.” She believes that is perfectly reasonable to ask my doctor if they think there’s any reason to consider testing. She also tells me that there is an entire group at the Dana-Farber Cancer Institute, in Boston Massachusetts, that deals with breast cancer families.

“This is something that is very accessible to individuals, as well as doctor’s, to find out about.” she says. She also reassured me that although breast cancer is so common and does run in families it doesn’t have to be one of these genetic mutations. Cyr believes there is no question that I am at an increased risk but wisely points out that “increased doesn’t mean 100 percent.”

After what seemed like a long journey in trying to discover more about breast cancer, I felt that I had failed at uncovering any certain answers for my future. So, before wrapping up my interview with Dr. Cyr, I turned to her for some guidance.

She referred to my situation as “a case where all those good healthy things are something I could do,” meaning, watch my diet and make sure to exercise.

Although this won’t prevent breast cancer, it can help. Secondly, she tells me to talk to my doctor about when I should start having some sort of screening and what should it be, a mammogram, MRI, etc. What would they recommend?

She says, “It is good to find out at what age your relatives were diagnosed and make sure that you’re screened at least ten years before that.” As for genetic testing, this is something that Cyr says I must address with my physician.

In the end, it comes down to a personal choice and this is something that I have yet to decide.

Dr. Cyr also recommends a different type of test called the Gail Score. The test is named after a Dr. Gail who is a senior physician at the National Cancer Institute.

He created this model after studying thousands of women. Health care providers often use this test to calculate a woman’s chances of developing breast cancer. The score is derived from a series of questions that the woman has to answer in regards to family history etc.

Although the test is not perfect, it gives a good estimate based on what doctors know today. A tool for this calculation and how to interpret this score can easily be found on the internet.

Finally, both Dr. Cyr and my mother emphasize the importance of breast self-exams. My mother’s own early detection of her first lump may have saved her life.

According to the National Breast Cancer Foundation, Inc., if breast cancer is detected early, “The five-year survival rate exceeds 95 percent.” This, if anything, seems to be the most solid figure yet.

As a result, I have decided I will no longer look towards the future. I will continue to be hopeful and continue to be aware of my situation in regards to breast cancer however it has become clear to me that within the medical world breast cancer remains an unstoppable disease.

Therefore, there is little sense in overwhelming myself with anxiety over the matter. Instead, I will look towards my mother for inspiration and choose to follow her simple advice to “Be aware of my body.” After all, she is the one who has battled breast cancer survived.

Just as the ancient saying goes, “Mothers know best.”