Discussing Breast Cancer

Survivors often find themselves in the midst of depression. They’re facing their own mortality, for one. They’re tired, sick, sore … it’s tough to pick yourself up mentally when you don’t feel good physically. It’s been said that hormone fluctuations affect our mood - chemotherapy and hormone therapy reek havoc on your natural hormone levels. And it’s wintertime (here in the Northern Hemisphere at least) … and these cold, dreary days are for the birds.

You’re not alone. Up to one-third of women diagnosed with breast cancer face mood disorders of some type.

Here’s what I need to tell you: it’s important to get help. If not for yourself, for your children: Research indicates that children of depressed breast cancer patients are more likely to be concerned or anxious about their mother’s cancer and its implication for their families.

My recommendation:

(1) Talk openly about your disease with your children — the positive spin you’ll likely want to put on it for their sakes will benefit your own psyche as well.

(2) Talk openly about your disease with whoever you have around you — it’s therapeutic to share those negative emotions. Purge them, get them out, so you can put all the energy you can muster up towards your treatment. Got nobody? Comment here or on an online support site like breastcancer.org.

(3) Talk openly with a medical professional. They can prescribe medication to help manage your mental distress. This is not the time to be too proud, or too vain. Get help. Nobody should go into battle without a fully loaded arsenal. If you already take something, tell them it’s not working. They need to know.

Don’t deal with depression alone.

Alright, let me bring the new readers up to speed since my story is taking months to tell (truth be told, I purposely digress at times).

I was initially diagnosed with DCIS (ductal carcinoma in situ) in July of 2003 at the age of 35; I had a partial mastectomy and radiation therapy then went on Tamoxifen and was supposed to stay cancer free.

I was diagnosed with Stage 1 IDC (invasive ductal carcinoma) in April 2006 at the age of 38; I chose to have a double mastectomy and wanted immediate reconstruction. Having had radiation therapy before, implants weren’t my best reconstruction option, so I decided on a pedicled TRAM flap. My plastic surgeon, Dr. Narayan, explained how he’d take my abdominal fat and muscles and move them to my chest. If you’re a skinny minis, you wouldn’t have enough to work with, but apparently I hadn’t dedicated my breakfast time to Special K. Dr. Narayan could certainly pinch an inch and actually, he could pinch 3 inches. In each hand.

“What is your cup size,” Dr. Narayan asked me.

“I’m a ‘C’ cup,” I replied.

“Hop on,” he said as he patted the exam room table. I climbed up, lied down, Dr. Narayan lifted my gown to expose my stomach and literally grabbed my two handfuls of my belly then said, “yes, you’ll have enough.”

I’d never felt so glad I had some belly fat.

Then the real kicker.

“Did you ever smoke?” he asked.

“Socially,” I replied. “In college.”

Then the disapproving look. Apparently when you combine even limited cigarette use with previous radiation therapy you’re at risk for TRAM flap failure. Who knew?

So Dr. Narayan wanted to do a preliminary procedure to ready the tissue for the surgery, to improve the blood supply to the area. He called it a delay procedure (don’t let the name fool you, it happens before the reconstruction). The delay procedure was an ambulatory surgery. It was supposed to be a piece of cake. In and out. No big deal.

No big deal???? HA!

Dr. Narayan sliced a six inch piece of my abdominal pie then the nice nurses at the Temple Surgical Center sent me home. Goodbye!

I couldn’t walk. I could barely sit. I couldn’t believe it. I had an incision in my abdomen as big as those my friends had gotten when they had C-sections and I thought I was going to walk out of there and resume life as normal. Holy crap, talk about underestimating ambulatory surgery.

It was ten days prior to my mastectomy. I was supposed to have those ten days to get myself mentally prepared for ‘the big day.’ Instead, I had ten days to freak out because I was so incredibly unprepared for my delay procedure.

Of course, just when I started to get better … I was headed to the OR again.

Breast Cancer, Mastectomy, Reconstruction, Surgery, TRAM flap

Yesterday I interviewed a woman for an article I’m working on … a survivor with metastatic breast cancer … I’ll call her Lady M.

Lady M was diagnosed eight years ago with mets … so she only knows life with advanced, chronic breast cancer.

In the course of our conversation I mentioned another survivor I had talked to recently, a woman who had DCIS, was treated, and is now cancer free. I’ll call her Lady D.

Lady M basically jumped down my throat when I called Lady D a survivor. “She didn’t even have cancer,” she said.

And it is true, in some books or articles, DCIS is still called pre-cancer. But other research has shown … DCIS is cancer. Not invasive cancer, but cancer just the same.

I keep thinking back on that interview, because it bothered me on many levels. As a journalist, I tried to remain objective though I felt somewhat defensive of Lady D. Having had DCIS originally, I know first hand that DCIS is a precursor to invasive cancer — my invasive ductal cancer (IDC) diagnosis came not three years later. I know I was lucky, but to say I didn’t have cancer at that time … well, after surgery and radiation and hormone therapy … sorry, that was cancer treatment. It counted as cancer. I got to wear the survivor badge because I’d earned it. Lady M would beg to differ I’m afraid. She’s did a lot more to earn her badge. A lot more.

When I was diagnosed with IDC last year, a friend of my husband’s said, “geesh, I got you such a great gift the first time around, I didn’t know that was only baby cancer,” and I laughed at the analogy.

Baby cancer. Practice cancer. Not the real deal.

I think what people mean when they talk about DCIS this way is that people with DCIS that get good treatment don’t die.

People with mets do.

I don’t know the answer, if DCIS is cancer or not, but DCIS did lead to my own diagnosis of IDC, and that pushes me towards the former.

What are your thoughts?

In previous posts I shared what led me to get my initial diagnosis of breast cancer … now I’ll share what led me to get a second opinion.

During that fateful phone call on Thursday, July 17, 2003, when I received my diagnosis, the surgeon explained she had booked an OR for the following week to perform a lumpectomy. The fact that she did this without consulting me first terrified me. If I was truly Stage 0, why the rush? Didn’t I have options? Besides, I had a vacation planned … if this wasn’t an emergency, couldn’t this wait until I returned from my vacation?

I called back the next day and questioned the receptionist; she recommended I do some research on my own over the weekend, starting with a quick read of the book, “The Breast Cancer Survival Manual,” by Dr. John Link, “a step by step guide for the woman with newly diagnosed breast cancer.”

Of course I got the book that night and started reading. After reading the acknowledgments and the introduction I read the most important chapter of the book. Chapter 1: Second Opinions.

At that point I recognized that the surgeon I’d scheduled the biopsy with was a general surgeon, not a breast surgeon, and the hospital she was affiliated with was not a renowned cancer hospital.

I needed and wanted a second opinion even if it would take time and money. And it needed to be with a cancer specialist. I owed that to my children.

On Monday, I consulted US News & World Report’s List of the best cancer hospitals. I’m only an hour North of New York City, so I visited the Memorial Sloan-Kettering Cancer Center website, the number one cancer hospital on the list, and found an 800 number. I called.

The woman on the phone from MSKCC recommended I make an appointment at the Yale Cancer Center, another one of 39 National Cancer Institute Designated Cancer Centers and the only one in Connecticut. She said they’d gladly see me at MSKCC and discuss my case, but since I had young children and was in close proximity to Yale, a hospital they regarded as excellent, I should start there. If I was unhappy with the service and attention I received at that consultation, however, thought they doubted I would be, I should call back and get an appointment at MSKCC.

I called Yale first thing the next morning. My surgery was scheduled for Thursday, remember, only two days away, and I wanted a second opinion immediately!

Amazingly, the oncology department had a cancellation for Wednesday afternoon. I snagged that appointment. I scrambled to the various offices to collect my mammogram films and biopsy report and headed up to New Haven.

The medical oncologist, Dr. Gina Chung, was surprised I entered their system through her. Usually with cases like mine, initial appointments were made with a breast surgeon, because that’s the ‘first step.’ But coincidentally, Dr. Donald Lannin, the Executive Director of the Yale Comprehensive Breast Center and Professor of Surgery for the Section of Oncologic and Endocrine Surgery happened to be on the floor.

Some things happen for a reason. If you’ve never believed that before you start to believe that after a cancer diagnosis.

Both doctors spoke with my husband and I that day. They both agreed with my previous surgeon’s recommendation to start with surgery — but explained it should be more of a partial mastectomy rather than a lumpectomy because there was no lump, just some milk ducts filled with cancer cells. They both agreed I should go there because of their credibility as a cancer treatment hospital.

Then they explained that Elspeth Knill-Selby, A.P.N., Affiliated, Surgery, would call me to schedule the partial mastectomy. After my surgery we’d meet again and go over the resulting plan for treatment based on the pathology results. He told me to rest assured that a few weeks wouldn’t make a difference, so since I already had vacation plans, it could wait until I got home.

I made the decision on the spot to switch to their care.

Before I left, they asked if I’d be willing to let them review my case in their Wednesday afternoon clinic — I jumped at that, immediately seeing the benefit of affiliating my case with a teaching hospital. I’d have the best and the brightest minds looking at my films, my biopsy report, and eventually … my pathology.

I went home, canceled the surgery that the original general surgeon had scheduled on my behalf. Elspeth called me to schedule a subsequent surgery with Dr. Lannin on August 18th.

I relaxed … having done my homework and taken control I felt far more empowered than I had expected.

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.”