Discussing Breast Cancer

When I was diagnosed with DCIS in 2003 I was treated quite typically with surgery and radiation. To be specific, seven weeks of radiation therapy, seven long weeks (technically just shy of seven).

Each weekday I headed up to the clinic at Yale and laid on the table for a five minute (or so) blast to my chest. By the end, I felt like I’d really been through something huge — and that was reassuring to some degree. It would take something huge (like a long period of time) to tackle something huge (like cancer). Since I skirted by without chemotherapy (which would really have me feeling I’d earned my survivor status), at least I had those seven weeks of treatment to make me feel I was really fighting.

Hard to imagine how I would have felt if it were only one week. However, electronic brachytherapy for the treatment of early stage breast cancer — using a small electronic, low-energy X-ray source that delivers controlled radiation treatment directly to the targeted area — I’m not too sure how I would have felt about that. Would one week have been enough time to allow me to feel I fought a good fight in my battle with breast cancer?

There are a few system for this type of radiation. One implants a small, balloon-like device, at the targeted area then twice a day for five days, the balloon is expanded and a miniature X-ray tube is inserted. Another uses several catheters (like 10-20). Here, read more about the technologies here or keep reading to get to the question I want to pose to you today.

Accelerated partial breast irradiation. What do you think? Worth limiting the duration of your treatment if you’re diagnosed at an early stage? Or, limiting the way you perceive your role in the fight?

breast cancer, cancer, DCIS, radiation, brachytherapy, health, wellness, health and wellness, survivor

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?

I’ve been putting off sharing the details of my recurrence because recurrence itself is so hard to face, even after the fact. I also don’t want to worry anyone unnecessarily … not everyone has a recurrence after an initial bout of breast cancer. Many, many people are lucky that way. I was not. This week I’ll tell you about my recurrence.

After my treatment for DCIS in 2003, as I said before, I went on Tamoxifen and intended to stay cancer free. After all, my breast cancer was Stage 0, my surgical margins were good, my radiation treatments were clinically ‘by the book.’

Good doctors monitor you closely and I did my part by making and keeping my scheduled appointments.

A few months after my treatment (March 2004) I had a clean mammogram. That was a huge sigh of relief — everything looked sunny, not a calcification to be seen. I didn’t have to have another mammo for a year. The weight on my shoulders was lifted. That year was fantastic. My energy returned and physically I felt great.

Mentally, however? I was afraid of recurrence. They didn’t have good data for young survivors — i didn’t want five or ten year recurrence rates, I wanted twenty or thirty year rates and they don’t exist for women under forty. One of my doctors told me that since I was diagnosed, odds were I’d get cancer again in my lifetime. “The good news,” he’d tell me, “is that we’ll be on top of it when it happens.”

That’s such a frustrating concept. After you’ve been diagnosed with and treated for breast cancer, you’re always waiting for the other shoe to fall and hit you in the head. You always expect it, you just don’t know when it’ll happen, so you’re never quite … at ease.

My March 2005 mammogram was different from the previous year, but not suspicious enough to warrant a biopsy. Six months later (September 2006) I had another mammo, no different from the March mammogram so still not suspicious enough.

Both times I felt I’d been given a recess but not a permanent vacation from the worry.

Then came the March 2006 mammogram … and the other shoe finally fell from the sky.

The morning of August 18th, my husband and I headed up to Yale first thing in the morning. The kids were at my mom’s so we didn’t have to worry about them, all we had to do was figure out what to listen to on the radio during the 1/2 hour car ride.

Our first stop at Yale was mammography; I know, I’d already been there, done that. But the surgery I was to have required one additional step: wire localization. Basically, the radiologist in mammography would insert a wire into my breast as a guide for my surgeon in the OR — he’d know exactly where the malignancy was and could be more precise in his surgical efforts.

Of course, I was awake for that, then had to be wheeled to the hospital OR with a wire sticking out of my body. Not very pleasant!

In the OR, I was given drugs to relax me … I was sort of asleep for the procedure but also sort of awake, and though I felt nothing, I was aware of what they were doing. I even heard the surgeon on the phone with pathology confirming that the margins looked good.

As I was coming out of that groggy place, I heard the doctor explaining the procedure to the nurse that was tending to me. I saw my husband, smiling, relieved it was over. Very little time passed and I was able to go home that day. The incision healed quickly, and though I was to baby it for a while, I hardly had any restrictions. It was nothing … kind of odd, actually. It sounded so much worse than it was.

When the pathology came back, it confirmed that I had Grade 2 DCIS but indeed, the margins looked clear, which meant I didn’t need a follow up surgery and wouldn’t require chemotherapy. It was a huge success, a huge relief. At that point, I was left with just one question: would I be starting radiation therapy before my son’s 4th birthday on September 15th or before I turned 36 on September 18th.