West: Losing a breast, gaining insight

Cancer ordeal gives patient new perspective

All I can recommend is what was told to me: Take a deep breath. Do your homework. Get two opinions. Make your own decision, then don’t look back.

Doctors, loved ones, friends will all be with you during this adventure, but you have to be your own hero.

On the morning of Sept. 11, I was awakened by a phone call from my partner, Dennis, who was on the East Coast doing research. He told me about the planes hitting the World Trade Center towers. And then he told me about a dream he’d had, a nightmare really, about an explosion in downtown Phoenix. In the dream, I had been seriously, maybe fatally, injured in my chest.

He didn’t want me to go to work that day, but I shrugged him off. Nothing was going to happen to me, I assured him.

Something was happening to me, though, something in my chest that would change my life. And a few weeks later, when the doctor pointed to white spots on the X-ray of my right breast, that’s exactly what it felt like: a terrorist attack.

I hate mammograms. That’s why I skipped mine last year.

But at age 49, and with a doctor prone to lecturing, I could put if off for only so long.

So on Oct. 22, I went in for the test I refer to as a “squish session.”

A few days later, the lab called and said one area of the film had not come out clearly and they wanted to take another. So back I went to the lab in north Phoenix – a long way from home, but the place listed by the HMO.

I walked in to find my partner, Dennis, waiting for me in the lobby.

“What are you doing here?” I asked.

He just thought he’d show up, he said. We could have coffee together afterward.

Dennis sat in the waiting room while I went in for the mammogram. Afterward, I was told to get dressed and come to the consultation room, where a diagnostic radiologist would go over the results.

Dr. Nga Do was waiting for me, along with Dennis, who had been pulled out of the waiting room. When I saw him it was my first real hint that something was wrong.

“Sit down and we’ll take a look at these together,” Do said as she clipped the films to the light box.

“I’m sorry; I’m feeling a little shaky,” I said.

“Take a deep breath,” she told me. “Take another one – very deep.” She held my arm, and Dennis lightly massaged my shoulders.

She pointed to the film. “This area is right in back of the nipple of your right breast. See these little white spots, the little slivers? Those are called microcalcifications. Sometimes – in fact only 20 percent of the time – they indicate cancer. You’ll want to get a biopsy to check that area. It’s a simple procedure done with a needle.”

That’s what happened two days later. I lay down on a table with a hole in it, with my breast poking through. Do and her assistant used a gunlike device to shoot a needle into my breast about a dozen times, extracting tissue samples and depositing them in a jar. It was not particularly painful, but it was certainly unnerving.

~ Bad news ~
The next day, Friday, I was sitting at my desk in the newsroom when Do called. She was supposed to be off work that afternoon, so I was surprised and suddenly worried to hear her voice.

She told me the news from the biopsy was not good, and that I should make an appointment with a surgeon.

I had no symptoms, no sign anything was wrong. No lumps. No fatigue. No family history of cancer of any kind. But I had become one of an estimated 47,100 women in the United States diagnosed last year with one of the earliest types of breast cancer called DCIS, Ductal Carcinoma In Situ.

In situ” means the cancer is confined to the milk ducts and hasn’t spread to the rest of the breast or other organs. You would think you could take a pill for something like that, or have your ducts flushed. But the main treatment is the same as for more advanced stages of cancer – surgery.

Dennis came downtown and drove me home. I called my regular doctor and got a quick referral to a surgeon. Then we raced from central Phoenix to Breastnet’s office in north Scottsdale to pick up my X-rays.

We weren’t hurrying for medical reasons, but for emotional ones. We couldn’t wait; we had to do something.

It was rush hour, so we worried about which route to take that would get us to 90th Street and Shea Boulevard before closing time. We decided on Arizona 51 to Shea, then east to 90th Street. While we drove, we talked and held hands from time to time.

I was trying to be positive: This was the kind of experience we would have to get used to as we grew older, I said. It would help me write better stories about such issues.

We drove in silence for a while, then I said, “It’s a good way to go.”

Dennis said to lighten up, that I wasn’t going anywhere.

“I meant Shea Boulevard,” I said.

~ A lucky turn ~
You can tell when your luck turns bad, and you can tell when it turns good again.

It turned good when we walked into Breastnet a few minutes after closing time and they were still open, waiting for us because we called and because they cared.

Dr. Belinda Barclay-White stayed late to talk with us. She is a lovely woman about my age who speaks with that British accent we Americans take as the voice of competence itself.

Dennis asked if we should look outside Arizona for the best treatment. Five years ago, she said, that would have been the case, but not anymore. She gave us the names of local breast surgeons and told us about each.

“This one may recommend a lumpectomy. This one may recommend a mastectomy. You will have to decide, ultimately. But don’t feel that you must hurry. You have months to make your decision; you caught it very early.”

But she hadn’t yet addressed the one thing that worried me most.

“Is this going to kill me?” I asked.

She looked squarely into my eyes and paused before speaking. “No, you will not die from this. When caught at this stage, it is close to 100 percent treatable.”

One hundred percent.

A number to hang onto.

Trying to be normal

I didn’t want to go home and cry.

It was Friday night, so Dennis and I went to the cafe at Nordstrom’s for some comfort food and then to a comfort movie: Amelie.

Later that night, Dennis asked me, “Has this been the worst day of your life?”

No. Yes. Maybe.

Over the weekend, my breast got blacker and bluer from the biopsy. It was a frightening reminder that all was not well.

I called one of my three sisters in Iowa first and asked her to pass along word to other family members. I didn’t have the energy to talk with everyone.

When people hear that you have breast cancer, they are the ones who need reassurance. They want you to tell them that you’re going to be OK.

But you also encounter a sisterhood of women who have survived the ordeal themselves. They will pull up their blouses to show you that everything is going to be fine.

By Monday, I was ready to act. I canceled my appointment with the general surgeon and made two appointments with breast surgery specialists. Barclay-White had agreed to submit my case to a group of specialists who meet at her office to cross-consult on new cases. Waiting outside that meeting was my next stop.

Dr. Victor Zannis, a breast surgeon on my list, talked with me after the session. With an air of confidence and humor, he laid it out: There was no reason to take my whole breast; a simple lumpectomy would do, followed by radiation. He used a felt pen and sketched on the paper covering the examination table: normal and abnomal cells in milk ducts; the likely surgical approach, an incision around the nipple and maybe along one side.

When he finished, Dr. Coral Quiet, a radiation oncologist, came in and described what I would be in for if I took the lumpectomy followed by radiation route: five radiation sessions per week for six and a half weeks. That would mean lots of trips to north Scottsdale if I wanted her to do it. Somehow I did. Maybe it was her name or her demeanor, or maybe you bond with the first physicians to carefully explain things to you. She told me some women don’t show any ill effects from radiation, while others look and feel tired.

It could permanently weaken a few of my bones; I might break a rib from a big sneeze. Great. I have these indelicate sneezes and already a delicate back.

I learned that some in the consulting meeting thought I might be happier with a mastectomy, as I have small breasts and the lumpectomy would take about 20 percent of my breast, including my nipple, which was too close to the cancerous cells to save. Radiation also makes reconstruction of the breast more difficult, as it deteriorates the condition of the skin and muscle.

I had a second appointment with Zannis in his north Phoenix office that afternoon. His waiting room is like a comfortable living room, with rugs and sofas, and his office is decorated with architectural drawings of historic buildings with domes. His computer screensaver was Half Dome in Yosemite. His desk toys were suggestively round or pointy.

This was the guy for me. He wanted me to meet his preferred plastic surgeon. Then I could set a date for surgery.

But I knew I should get a second opinion. I knew there was more I needed to know.

~ Making a decision ~
That week, I began working the Internet, delving into the literature on breast cancer, trying to decide what to do.

But the more I found out, the more I wondered if I should do anything at all. Twenty years ago, early cancers like mine often didn’t even show up on the cruder X-rays, so they weren’t treated at all. Only 1 to 2 percent of all cancers detected were early-stage like mine, compared to more than 20 percent now as more baby boomer women are getting annual exams.

Often enough, early cancers didn’t develop into invasive cancers. Do you let it alone and hope for the best, or take action to get rid of it? Is ignorance bliss?

Some researchers are questioning the value of early detection, saying women are going through too many surgeries. Maybe it makes more sense to do less screening, and concentrate on treating those one in eight women who develop invasive cancers. Of course, that 100 percent treatable figure suffers.

On a personal level, it comes down to this: When you know you have it, you want to get rid of it, fast.

Maybe we should learn to live with these early, often slower-moving cancers like DCIS in women and early prostate cancer in men, in the hope of easier and cheaper remedies down the road. I have talked with men who put off prostate cancer surgery, fearing impotency. But women with insurance, like me, seem to want action.

I asked my 79-year-old mother about her last mammogram. Maybe she had been carrying little white specks for decades? Maybe our family had the dormant kind of cancer? No, her last mammogram was clean.

As with everything in this journey, there were no easy answers. Every decision required a gut judgment call, and it was my call.

~ A second opinion ~
The second breast surgeon had a cold, clinical waiting room and a colder examining room. I undressed, placing my purse on the floor.

“We can’t have your purse on the floor,” said the doctor, plunking it down on Dennis’ lap. That pinned him down so he couldn’t hold my hand if I needed it.

She was the one I had been led to believe would recommend a mastectomy, and she was blunt: “Here’s your choice. You can have a lumpectomy, radiation, years of cancer drugs, a deformed breast and the constant worry that you didn’t get it all. Or you can have a mastectomy, no radiation, no drugs, a full and beautiful reconstruction, and fewer worries about breast cancer. I know what it would be if it were my own choice.”

I told her I was leaning toward a lumpectomy. “I’m more of a natural person. It seems like such a radical step to have a mastectomy.”

She countered: “It seems natural to have six weeks of radiation and five years of the anti-cancer drug, tamoxifen? There is nothing natural about any of that.”

Then she pulled out my X-rays and showed me something no one else had paid much attention to: two white specks high on the breast. “This could be another area,” she said, recommending another mammogram.

She told me that, if I chose her, she works with two plastic surgeons who both do wonderful work. One only does people with money or who are very well known, she said. She gave me the card of the other.

So I had another mammogram to check out the specks. The angle was awkward, and my breast was still sore from the biopsy. Dennis donned a lead apron and held me steady.

When the film was developed, Don looked at the spot. It could be something, she said, but probably wasn’t. She couldn’t say for sure.

She couldn’t give me what I wanted: a clear reason to either save or sacrifice my breast. I would have to make my decision with the information I had.

But I had come to trust her, so I talked through the pluses and minuses of a mastectomy vs. a lumpectomy. I said I was thinking of asking Zannis to do a mastectomy instead of a lumpectomy. She said she was sure he would not be offended.

He was not. My decision made sense, he said, and he ticked off the reasons why: I had small breasts and an aggressive strain of cancer. I would lose my nipple anyway; radiation could make reconstruction less successful; and there were those faint specks that no one could be sure of.

Every cancer is different, he said. Every case requires a lot of thought.

The more I thought about it, the more I realized that I am not a risk taker when it comes to my health. A mastectomy offered the best odds for a long life, even if a lumpectomy is the accepted treatment.

And if I chose the lumpectomy, every time I looked in the mirror, I would fear the cancer coming back.

~ Shopping for a breast ~
I met with Dr. Ali Mosharrafa, a plastic surgeon, the next day, almost two weeks after my diagnosis. He showed me his photo album of before and after shots and told me how the breast surgery would be done.

Minutes after Zannis removed my breast, he would insert an inflatable pillow under the chest muscle behind my breast. Each week, he would inject more saline into the little pillow until my chest muscle was stretched enough to accommodate a permanent silicone or saline implant. Then he would reconstruct a nipple and even tattoo an areola around it.

He said I would have to go up in breast size, and then have surgery on my other breast so it would match. I could have any size I wanted, he said. Had I thought about a “C” cup?

I wanted to be as close as possible to the real me, I said.

We set the surgery for the week after Thanksgiving. That way, I would be fully recovered by Christmas.

I went back to Mosharrafa the day before the surgery so that he could mark up my breast with a black Sharpie pen, showing Zannis where to cut for best reconstruction results. It was a simple circle around my nipple. Very small.

The next day, I checked into Phoenix Baptist Hospital. The surgery lasted two and a half hours.

The first thing I remember was Dennis asking me if I wanted an ice chip. “I can’t have that, I’ll get sick during surgery,” I said.

“It’s already over,” he told me gently.

Morphine for the first 12 hours, followed by strong painkillers, kept the pain under control. Dennis brought in music and ice cream. I was walking within a few hours. I was home the next day.

~ The first look ~
I spent most of the next five days sleeping and listening to tapes of the Harry Potter books. A plastic contraption on my chest had to be drained of reddish fluid several times a day. But I couldn’t really see much; the whole right side of my chest was swathed in a big, white bandage.

Mosharrafa removed the bandage in his office. He told me to sit up on the examining table so I could look at myself in a full-length mirror.

I looked, but somehow did not allow myself to see. Those around me were happily commenting on how small the scar was.

I wouldn’t really look until later, in the privacy of my bathroom.

The skin where the nipple used to be had been gathered as if with a purse string into a bunched area the size of a quarter. There was a flat and slightly lumpy expanse of skin around it. It was not totally flat, as the temporary implant that would be inflated over the next couple of months was already in place.

It wasn’t so bad, I breathed to myself.

~ Good news ~
A week after surgery, the lab results were back. Tests confirmed that the cancer had not spread into the lymphatic system. All clear. A very good day.

By then I was off the heavy painkillers and taking Tylenol. I was walking the track near our home by the second week, and back at my desk a week later.

I have had several injections in the temporary implant, and my chest size is about normal again. With a little padding here and there, I can wear a sweater without much fear of looking lopsided.

The permanent implant is still a month away. My energy level is a little low, but otherwise I entered the new year pretty much back to normal, a woman only slightly bionic.

The brush with mortality has changed me, though.

I have learned to respect the fact that patients, not doctors, are the real decision-makers, and the decisions in today’s health environment are not always easy and obvious. The tradeoffs are daunting.

This has been a good experience. I wouldn’t have chosen it, but I am grateful for it.

I have greater uncertainty in my life, knowing that I may be more susceptible to cancer in the other breast. But I know I can handle it if it happens.

I also feel lucky that my cancer was detected so early. I don’t have to go through chemotherapy. I don’t have to tell my family that I may not be around next Christmas. I have more respect for those who do have to do those things.

Should others handle their cancer the way I did? Would I tell them to make the same decisions I did?

Absolutely not!

Breast cancer is personal. A woman with a different body, with cancer cells in a slightly different place, might best choose a lumpectomy.

Or because this kind of cancer is so slow-moving, she may want to do nothing for a time – to wait and see what happens.

All I can recommend is what was told to me: Take a deep breath. Do your homework. Get two opinions. Make your own decision, then don’t look back.

Doctors, loved ones, friends will all be with you during this adventure, but you have to be your own hero.

Maureen West for the The Arizona Republic, November 2002

Originally published on DrKelley.info, November 24, 2002. (Ed. 11.26.10)

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