Discussing Breast Cancer

You might question when you should get a baseline mammogram, when you should start getting regular mammograms and how often you should get mammograms once you start. Even the guidelines can be confusing:

This is so dangerous … it makes me nervous just thinking about it!

Yes, there are risks associated with mammography primarily because it is a form of radiation, like an x-ray.

But mammography saves lives (just read this information based on an American Cancer Society study).

Fewer women die from breast cancer after mammography becomes routine.

Let me say that again … fewer women die from breast cancer after mammography becomes routine.

Cancer caught earlier responds better to treatment.

If I didn’t go for that baseline mammogram when I was 35, the cancer that was growing in my body would have gone undetected for at least five years until I went for my first mammogram when I was 40. If I didn’t go for that mammogram when I turned 40 … well, I can’t even speculate, but I’d venture to guess that I wouldn’t have had a curable disease.

Remember … I didn’t have a family history of the disease. I didn’t have a palpable lump. I had a strong sense that something was wrong with my body and I acted upon it.

There are no studies to back up that reason for getting a mammogram. Just common sense.

After my breast cancer diagnosis, I realized I’d have to explain to my children what was going on in a way that they’d understand and wouldn’t scare them or bring on unnecessary stress.

They were 2 and 4 years old. How much did they need to know? How much could I protect them from? I did some research online made a phone call to the American Cancer Society to ask for guidance.

Regardless of your children’s age, here’s a universal truth: telling your children something right away takes some fear off their minds — they’ll already know something is wrong because your routine will be altered and your anxiety and stress will show in your parenting. Don’t let them think the worst and worry on their own. Be matter of fact and age appropriate in your explanations. Conceal some of your own anxieties (only the worst ones) but don’t be afraid to show them some as well — they’ll share it with you instead of wondering if it is worse than you are letting on. Tell them to ask you any questions they have … and answer them honestly as best you can. And do some reading before the questions come up so you aren’t caught off guard. They may ask you about losing you, either temporarily because of a hospital stay or because you’ll die … be prepared to talk to them about it, don’t just brush off their concern. Make sure they understand that you are sick, but it is not a contagious kind of sick. They won’t catch it from you. They may also wonder who is going to take care of them if you are unable to — reassure them that they will be cared for no matter what!

My age-appropriate explanation went something like this:

“Our bodies are made up of cells, like Ms. Frizzle explains on the Magic School Bus, remember? Well, Mommy has some sick cells in her body. I need to have them removed and take some medicine to make sure my cells stay well. I need to make important phone calls to arrange my doctor’s appointments and understand my treatment and I might need to be on the phone a lot in the next few days. Can you cooperate with me on that?”

If you take the mystery out of it, they won’t be as stressed that they are being left out of something important. Allow them to be a part of it. It is their reality, they have a mother with breast cancer, and that will not change. It will make them who they are as adults; it is a part of their life story and the sooner you accept that, the more easily you can factor it into your parenting decisions.

It is possible your kids would benefit from a support group or counseling. So look for signs that they are internalizing their situation. Is their stress coming out in their artwork or schoolwork? Are they acting out? Alert their school teachers and social workers to be on the lookout as well … they can help you and alert you to any issues they notice when your kids aren’t in your care.

Remember, children don’t necessary have the experience to equate cancer with death the way we do as adults. My nieces were older (6, 8 & 9) … it didn’t dawn on them that breast cancer and death often went hand in hand until supportively went to a Relay for Life event and saw the luminaries … that’s when they needed reassurance. So if your child is older, you may want to be prepared to talk about death (especially if you are dealing with late stage disease). Charlotte’s Web is a great book to read, too, that features death and grief as a natural part of lie.

Of course, each age brings a different level of understanding; my simple explanation won’t work for older kids. Subsequent diagnoses also brings great stress and new questions, I can attest to that personally, but we’ll discuss that in a later post).

Your diagnosis is out of your control. But you can control how you and your kids are armed to fight. Here are some links to help you assess how to take up arms:

The American Cancer Society has some great resources to help children deal with a cancer diagnosis.

Cancer Care for Kids is another resource you should check out.

Finally, KidSupport has great information to peruse and use.

Throughout your treatment, check in with them from time to time, ask if they have questions or concerns. And give them as much attention as you can. When I was in treatment, I found really clever ways to give attention to my kids. I’ll share that with you tomorrow!

The call to inform me I had breast cancer came in on Thursday, July 17, 2003. But each time the phone had rung between the time I walked out of that hospital door and the time the call actually came in I’d have an adrenalin surge.

The biopsy was positive for intraductal carcinoma in situ. I wrote down the words as the surgeon explained them to me. I knew that carcinoma meant cancer so I stopped hearing what she was actually saying because my head was reeling with that single word. Carcinoma.

I had DCIS. Stage 0 breast cancer. Historically considered ‘pre-cancer’ but now known to be the pre-cursor to a more advanced form of the disease. My surgeon had booked an OR for the following Thursday.

I wrote down as much information as I could. Then, I picked up the phone and called my husband at work. “I got the call,” I told him. “I have breast cancer.” He was speechless, of course. The information is impossible to process. His wife, friend, lover, mother to his children … had breast cancer.

I tried my parents’ house, no answer. My mother’s cell phone, no answer. So I packed up the boys and just started on the half-hour drive to their home. I needed my mother.

My parents phoned me on my cell phone as soon as they saw that I’d called. When I told them the biopsy was positive there was silence on the other end of the phone. After all, I was their baby, their youngest child and I was telling them I had cancer. What words could they possibly use at that moment?

Within minutes (so it seemed) of my arrival at my parents’ house they came home; my husband also arrived at their house (who could possibly work when their spouse tells them they’ve been diagnosed with cancer?).

Together we tried to process the information my surgeon had given me on the phone. I was 100% treatable. I’d most likely need surgery then radiation therapy. But I was 100% treatable. We pondered over the fact that she didn’t say, ‘curable.’

I knew this meant that I wouldn’t be taking that business trip so I called my client and again, there was that silence on the other end of the line.
Apparently shock, devastation and speechlessness are linked in your brain’s processing unit.

Then it hit me hard: if this is how the adults in my life were taking the news, how would I tell my children?

The morning after my baseline mammogram I returned the kids to my moms and returned to the Suite for Women’s Imaging and returned to worrying. It was a busy time for me because I had just taken on a new project for a key client of mine. I had a myriad of details to work out and had a business trip to California to plan.

The technician took a second set of films and asked me to wait while she consulted a radiologist. I didn’t even bother making myself a cup of tea (the fun was over). I was called into a small room. I’m talking small. Maybe sixteen square feet small. Really it was a closet with two chairs and small desk with a light box on the wall. The radiologist placed one of my films on the light box and flicked the switch so that light poured through to illuminate the black and white image of my breast tissue.

He pointed out a small cluster of white flecks — they looked like bitty grains of rice — and called them micro calcifications. These calcifications signified a change in the breast tissue; could have been the result of my discontinued nursing, weight loss or a bruise to my chest indeed. He told me that 80% of the time micro calcifications turn out to be nothing.

It took me a minute to recognize that we were discussing my right breast. The sensation that brought me down this path (the discomfort that had amazingly subsided) was in my left breast. I couldn’t help but think … had I not felt that internal bruise feeling in my left breast … I would not be here. What did that mean? (Another topic to be revisited at a later date.)

The only way to be sure I didn’t have cancer was to schedule a biopsy, which I did asap. I had to meet with a surgeon (I took their recommendation) first: I had two options: Stereotactic (Core Needle) Biopsy or Needle Localization Biopsy. She also agreed that there was a strong likelihood that this was nothing.

I chose the Stereotactic Biopsy. On the morning of July 15, 2003, I headed to Norwalk Hospital. My husband drove, I didn’t wear deodorant, I hadn’t had aspirin or ibuprofen for a week. I was ready. The procedure wasn’t comfortable (another post for another day), but with deep breathing and a surgeon with a good sense of humanity, I endured. Looking back it was nothing, but fear of the unknown is a very real and almost debilitating emotion.

After it was over, I received a phone call from my client … “Hey, Karen. Just wondering if you’ve booked your flight.” I took a deep breath and told her I had, but there was a very small chance I’d have to cancel. I explained what was going on and told her I’d have to wait for the biopsy results. We talked about the fact that this was probably nothing. I’d agreed to call her back after my surgeon called me with the green light.

Breast cancer stories … every detail of each one matters. Today I’m going to share with you the first chapter of my story …

One day in May 2003, I began to feel some discomfort in my left breast. I didn’t have a palpable lump, just the feeling of an internal bruise. I stood before my husband in our bedroom one night and told him what I’d noticed.

“Do you think I have breast cancer?” I asked. The look he got on his face told me he thought I was nuts. I had no family history of breast cancer. I was only 35. He was only 29. We had two kids, two babies, only 2 and 4 years old. It just wasn’t possible I’d have breast cancer (so he thought).

“I think you’re crazy,” he replied. But he suggested I call my OB/GYN’s office in the morning just to make sure.

So on Tuesday, May 27th, I called and spoke to my OBGYN’s nurse practitioner. “It’s probably nothing,” she reassured me. “But since you are 35, you can get a baseline mammogram, your insurance will cover it. Why don’t you get one for peace of mind.”

See, a baseline mammogram at 35 years of age will allow future radiologists to have something to compare an image to when they take subsequent annual films starting at age 40. At least, that’s the concept.

About a month prior to all this I had visited the Fitness Edge in Westport, CT, a club especially for women, and had picked up a brochure for Norwalk Radiology and Mammography. The brochure touted the facility’s digital mammography and I thought state of the art was the way to go.

So I called Norwalk Radiology and Mammography and made an appointment for a baseline mammogram.

My appointment was for Thursday, June 19th. My mom took the kids for me so I was happily without dependents. I walked into the Suite for Women’s Imaging and relaxed instantly. There was soothing music playing over the sound system, there were hoards of women’s magazines to peruse, there was hot tea and clean gowns and I was … at peace.

I had my mammogram — that experience alone is a story for another day — but for now I’ll just share the feeling I had when I was done. Because I was elated. I was proud. I was empowered. I had embarked on a rite of passage that equaled no other I had experienced before. Taking control of your health feels downright fantastic. I called my mother and bragged about my prowess. I picked up the kids, went home and continued to chat on the phone while I futzed around the house waiting for my husband to get home from work.

At 4:30 pm that afternoon my phone rang. It was someone at the Suite for Women’s Imaging. They needed to see me again, they said, “tomorrow.”