Chapter Seven: The Laws of Probability Don't Matter—Until It Happens to You

Chapter Seven: The Laws of Probability Don't Matter—Until It Happens to You

             When I found the lump in my breast—March 11, 1996, I had just celebrated my fifty-second birthday. It was a personal earthquake for many reasons but primarily because I have always been concerned about my health and thought by taking such good care of my physical body, nothing of consequence would go wrong. I eat nutritiously—very little meat, lots of whole grains, fruits, and vegetables. I don't smoke or drink alcohol or even caffeinated beverages. I have always been relatively thin. I exercise four days a week for at least forty minutes. I have yearly exams by my OBGYN. My last exam was less than five months earlier. I have yearly mammograms, and do breast self-exams every few months if not every month. I have never broken a bone, surgery, or any serious illness. I have not had the flu or even a cold for ten or so years. If you had asked me on March tenth what my chances of having breast cancer were, I would have said something like, "Not me. I'm way too healthy."

            If I had studied breast cancer statistics, I still would not have had the slightest hint that cancer was on my doorstep. The probability that I would get cancer for my age was one in 50 according to the Susan G. Komen Breast Cancer Foundation. And all my answers to the risk assessment questions were negative. There had never been a case of breast cancer in my family. Whenever I’d fill out the questionnaire before each mammogram, all my answers were negative. I thought I was doing everything right, and, frankly, that because of my care for my health, cancer was only something that happened to other people who didn’t take care of themselves or who had a family history.

Here are the statistics: 

*In 1960 one out of 14 women in the United States developed breast cancer sometime in her life. In 2000 that statistic was one in eight.

*Breast cancer is the leading cause of death for all women ages 35-54.

*About 80% of breast cancers occur in women over 50.

*Breast cancer is the most common form of cancer in women other than skin cancer.

*In 1999 43,500 women died of breast cancer in the U.S.

*In 1999 there were approximately 178,700 new cases of breast cancer in the U.S.

*Being a woman is the greatest risk for developing breast cancer. In 1998 only 1,600 men were diagnosed with breast cancer, which is just a little over three percent.  Four hundred men will die this year from breast cancer.

*The five-year survival rate for breast cancer found in the early stages is 90%.

*Women who die of breast cancer lose an average of twenty years of life.

And, here are the risk factors:

            *Being female

            *Having a mother, sister, daughter with breast cancer

            *Having had breast cancer in one breast

            *Having had ovarian, uterine, or colon cancer

            *Having your first child after age 30 or no children

            *Beginning menstruation before age 12 and continuing after age 55

            *Having dietary habits such as too much alcohol and fat.

            But even if I’d been able to rattle off those statistics, I'd still have been unconcerned. I honestly thought my healthy lifestyle would prevent cancer and every other life-threatening disease. Now I understand that the causes of cancer and the reasons some get it and some don’t are still in the theory category. Do I carry a cancer gene? Was there something in my environment or lifestyle? Was I susceptible, predisposed, unlucky?

Just for the Record

The American Cancer Society suggests a yearly mammogram and doctor’s breast exam after age 40 and monthly self-exams beginning at age 20. Of those three steps, most breast cancer literature suggests that a mammogram is the most important because a mammogram can reveal lumps that aren’t detected by BSE (breast self-exam) for two years. Mammograms, however, according to present statistics do not lower the survival rate in certain age groups. As many as 40% of tumors may not show up on mammograms during a woman's childbearing years. From my experience I would put BSE at the top of the list because a mammogram is only once a year while a breast self-exam is once a month. Both my oncologists agree. When Dr. Prystas edited this book, she put a big “YES” by this statement noting that 85% of breast cancer is found by the woman herself. (Of the women discussed in this book, only Marilyn did not find her cancer.) But mammograms, doctor’s exams, and self-exams don’t prevent cancer. They detect cancer. The laws of probability are a fact of life. One in eight women will get breast cancer despite everything she does to prevent it. Early detection is the goal at the present time since there is no vaccine to prevent or drug to cure. It won’t always be that way though. I’m thinking of streptococcus infections. leprosy, tuberculosis, and polio.

I recently woke up and felt something hot and painful on my leg. I pulled up my nightgown and saw a boil, an infected boil, about two-inches in diameter. I tried all the home remedies and thought it would go away by itself, but within two days it was larger than my hand span and deep red and purple. It was hot and very sore. I went to the doctor. He explained that before sulfa and penicillin, I’d be in the hospital fighting for my life. He wrote a prescription for 2,000 mg of penicillin per day, and ten days later, the boil was gone. Someday, hopefully soon, doctors will write a prescription for cancer and in ten days it will be gone.

            I had a friend whose eight-year-old daughter was dying of leukemia. The family agonized about how long to keep her alive artificially. The day they decided enough was enough, she told me her worst fear. “What if I wake up tomorrow morning and the headlines read: “Cure Found for Leukemia.” Dr. Prystas advises her patients to be interested in new developments in cancer treatment but not to be too overjoyed or too depressed when the news of this or that discovery working or failing. We’re on the road to finding a cure, but it may be still many years in the future.

 The Odds

This cancer experience has taught me to pay deference to the laws of probability because cancer doesn’t only happen to other people. The fact is I am everyone else's "other people." My chances were 1 in 50.  I was only thinking of the 49 women my age who don't get breast cancer, not the one who does. Statistical probabilities mean much more to me now. For example, when Dr. Prystas explained to me the risks associated with taking Tamoxifen, I listened carefully. Whoa! One in four hundred women on gets uterine cancer! My thinking has changed. I don't dismiss those odds. I don't visualize the three hundred and ninety-nine women who won't get uterine cancer from Tamoxifen. In my mind I see four hundred women who already have had breast cancer and now have new statistics to haunt them. I see that one in four hundred, the two in eight hundred, those twelve and one-half in five thousand. I see these women as real people. They have husbands and children, parents and brothers and sisters whom they love and who love them. They are women who wash dishes, do laundry, work, read bed-time stories, cry in chick-flicks, enjoy cooking, or painting, or reading, or going on walks with friends.

They are artists and writers, scientists, CEOs, and psychologists. Some are single; some are wives and mothers. All have families. All will be mourned if they are called to step over the veil of death. I visualize the great sadness when the one in 400 hears the diagnosis. I experience her suffering of another cancer diagnosis. I know what it is to be the one in fifty. Now I realize my odds are many thousands times greater of getting uterine cancer than the general population of women who haven't had breast cancer and are not on Tamoxifen.

So that's where I was on the evening of March 11 when I began to get undressed for bed. As I took off my bra and my hand hit something hard in my left breast. I was stunned to feel a lump the size of a marble. "How could I have a lump that big?" I asked myself. But I did not panic because I was sure it was another cyst although this lump felt much harder than the cyst had felt. The cyst had felt slightly squishy. This lump was solid. After I went to my doctor, had the normal mammogram, was examined by the radiologist with ultrasound, and had him ask: "Are you okay with this?" I felt like saying, "Why shouldn't I be okay? I have never had anything bad happen to me. I'm the picture of health. My primary care doctor said he is 90% sure there is nothing wrong, and you, a breast cancer radiologist, just said you are 80% sure the lump is benign. The law of averages and probabilities are generously on my side. But just to make sure, I'll take your advice, and make an appointment with a surgeon tomorrow." 

The surgeon echoed the radiologist's percentage saying, "I don't think you have anything to worry about. You don't seem to have any swelling in the lymph nodes under the arm. You have an 80-90% chance that the lump is benign." I asked him if it were a cyst. No, he was sure it wasn't. The surgeon explained the surgery to me. He felt that he should excise the lump rather than just doing a biopsy. I didn't know enough to ask more, besides 80-90% chance, what's there to worry about? But before the surgery day, I was beginning to be concerned because not only had I found another lump but because the first one seemed to be growing.

The surgery was done outpatient. I was in and out of the hospital in eight hours. I did not talk to the doctor after the operation, but Richard and my mother did. They told me that the doctor kept repeating the phrase "next steps", but I wasn't too alarmed. The laws of probability were on my side. Put one hundred women my age with lumps in their breasts in a line and 80 to 90 go home happily with benign diagnoses.

That memorable day, April 1, 1996 when I wasn't expecting a call from the doctor for two more days, when John told me the doctor had called, when the receptionist answered like she had been waiting for my call, something in her voice, something about not making me wait, something about her choice of words, something made fear rise in my heart. I suddenly felt cold. I lay down on my bed and put a blanket over me.  In a minute Dr. Fisher's voice was telling me that the pathologist had found cancer, a fast growing variety. It was then I knew. Laws of probability matter. Despite all the odds in my favor, I had cancer. The next morning in the doctor's office there were new statistics. I had infiltrating ductal carcinoma. The pathologist found three tumors. The tumors were rated III of III. The doctor explained that grade means how likely it is that the cancer will metastasize. The tumors totaled 2.5 centimeters. Lymphatic space invasion was identified. The tumor extended to the margin of resection. The summary—“focal high grade ductal carcinoma in situ identified in area of infiltrating carcinoma."  

"My recommendation," Dr. Fisher said softly as though it were a practiced technique, "is a modified radical mastectomy which includes taking all the lymph nodes under your left arm." After going through the pathology report with us, telling us about the mechanics of the surgery, and explaining about the options of prostheses, implants, and breast reconstruction, and after describing chemotherapy, Dr. Fisher asked us what questions we had.

Richard was mostly concerned about the mastectomy. Wouldn't a lumpectomy do? Many articles in the media cautioned women that too many mastectomies were being performed when lumpectomies would do.  Dr. Fisher explained that I had basically already had a lumpectomy with the excision. He felt the cancer was too fast growing and the probability of other tumors too high for him to recommend a lumpectomy. He worried since there were no clear margins, but said he would do whatever we wanted. Dr. Fisher and Richard talked on and on discussing the hospitalization and procedures. I kept quiet except to ask what the probability was that the cancer was in the lymph nodes. As far as I can remember, he never answered. Then I asked what my chances were of living a nice, long, normal life. He said that after the mastectomy I would go to an oncologist and that he or she would explain all that to me.

The mastectomy date was scheduled for Friday just one week from the excision. My probability of having cancer had turned out to be 100%. The probability of having a mastectomy was now 100%. The probability of having the cancer spread to the lymph nodes seemed to me 100%, too. The phrase on the pathology report, "Lymphatic space invasion identified" meant to me that it was in the lymph nodes. Though I didn't yet know medically or scientifically, in my heart, I already knew. 

After the mastectomy, the resident surgeon Dr. Grant came into my room, it seemed, just to talk. She popped in my room several times a day. I asked her what the probability was that the cancer had not spread to the lymph nodes.  She looked squarely at me and said, "None." I was thankful for her forthright answer. Now I knew in my mind as well as my heart. I didn't have to wait for the pathology report. It was not a matter of if, it was just a question of how many. Somehow, knowing was psychologically helpful. When the pathologist's report did come back, it felt like good news. 

Dr. Fisher began explaining vaguely about the report and was taking a few minutes getting to the point. I saved him the trouble. I told him that Dr. Grant had told me two days ago that I had zero chance that the cancer had not spread to the lymph nodes, and I just needed to know how many nodes were positive.  When he said 2 of 16 for sure and 3 looked suspicious and one more tumor had been found in the left breast. I felt like I'd been given good news.

One month later I met my oncologist. She gave me more odds and probabilities. She explained that if I did nothing more than what was already done—the mastectomy, my chances of surviving were 40-50% with a 50% chance of recurrence, which would mean death. She said with chemotherapy combined with hormonal therapy afterwards, my survival chances improve to 66% and any recurrence delayed. For me, there was no discussion or decision about whether to have chemo or not. I would accept the higher odds and take the chemo.

Support Group #7—How to make the Laws of Probability Work for You

1.     Exam your breasts monthly. If you have not been instructed on the correct technique,

find out how and do it right.

2.   Have a yearly mammogram every year after age 40.

3. Have a yearly breast exam by a doctor every year after age 40.
4. If you have a lumpectomy (breast-conserving surgery), you need radiation. As of June 1998 only 78% of lumpectomy patients have radiation. This should not be optional according the Susan V. Komen newsletter, Summer 1998, page 6.
5. If you are in the 50% of cancer patients who are node-positive have chemo, ask your doctor if Tamoxifen is a good drug for your diagnosis. Do everything the medical community can offer.
6. If you feel a lump, get it checked soon! Soon in cancer context means within a couple of days.
7. If your mother, grandmother, or sister has had breast cancer, talk to your doctor about prevention. Perhaps you are a candidate for the Tamoxifen trials for high-risk women.
8. And, do all the prudent things you’ve been told will help you live a long and healthy life:

A.   Whether you are the driver or a passenger, always wear a seatbelt.

B.    Exercise regularly whatever is age appropriate for you.

C.    Eat sensibly.

D.   Know what you should weigh and work to achieve that goal.

9. Find the good, the positive, the uplifting, the hopeful, and the fun in life.
10. No matter what you feel your chances of survival are, plan to die of old age. But whether

you die next year or in forty years really doesn’t matter. You’ve got today and tomorrow and next week and next month and hopefully next year. Find joy in each day. One way I did this during that first tentative year was to celebrate each month. Anniversaries are important and worth celebrating. Choose a day of the month to celebrate each month until you reach the first year. Celebrate every month. When you have celebrated 12 monthly anniversaries, begin a tradition of an annual celebration. April 1^st has become as important to me as my birthday.   I just passed an April 1^st. Everyone I talked to that day was told about this wonderful day in my life. I told complete strangers, store clerks, everyone I talked to on April 1^st. “Hey, do you want to hear something wonderful? Today is my third anniversary since I was diagnosed with breast cancer. I am so happy. This is a great day for me and I’m celebrating.” I talk about my breast cancer anniversary so much that I got three calls on April 1^st congratulating me on another cancer-free year. I got dressed up and celebrated all day long.