Discussing Breast Cancer

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

The more I blog about breast cancer, the more I realize it is easier to share information about breast cancer related studies and products or services than it is to write about topics that are painful to revisit.

Some aspects of my journey have been easy to share … like my first cancer diagnosis in 2003. That was DCIS, easily treatable with a protocol treatment plan. Kind of a no-brainer. Not that it wasn’t hard in many, many ways. But looking back, it was manageable, and not so hard to write about.

I’ve shared a few posts (like with this one) about my recurrence, my IDC diagnosis last Spring and the decision I had to make related to my mastectomy surgery.

Those posts were harder to write.

I have yet to tell you the details of that surgery … that’s the seriously hard stuff to revisit. Rock hard. Cement hard. Concrete hard. (Wait, which is harder, cement or concrete? It’s as hard as that.)

That stuff is coming up next. I’m sorry I’ve been putting it off. I didn’t even journal my way through last year. A therapist would have a field day with that.

Today I’m headed to Yale for a follow up with Dr. Lannin, the surgeon that removed both my breasts. I thought perhaps that was my sign that it was time I shared what my double mastectomy was like.

So that’s what I’m going to do.

Tomorrow.

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?

On Monday, April 3rd, 2006, I headed to Yale for another Stereotactic Core Needle Biopsy of my right breast tissue. The same breast that was surgically treated then radiated not three years prior. (Persistent little buggers, aren’t they, those cancer cells?)

In an earlier post, I explained my first biopsy so I’ve no need to bore you with the details in this one. The only difference between my first biopsy and this one was (1) the location (Norwalk Hospital vs. Yale) and (2) the fact that I’d already had bad news once so I no longer lived in denial, I no longer felt it couldn’t happen to me, and as a result I was an emotional wreck.

Fortunately, a nurse practitioner from my surgeon’s office joined the crew of technicians and stood next to me speaking to me with a soothing voice and rubbing my back the entire time. Seriously, that’s what she did, and it made a difference. I felt cared for, and safe, and though I was scared, I knew I’d be alright even if it proved to be cancer again. And it did. I had a breast cancer recurrence.

A few days later I got the call from Elspeth Knill-Selby, A.P.N., Affiliated, Surgery. Invasive Ductal Carcinoma and DCIS cells were found in the tissue sample. Most likely it was still caught early (Stage 1), but we’d need full pathology done to confirm that diagnosis. Pathology that would be completed after a mastectomy and a sentinel node biopsy.

All that information was given to me over the phone. Now some people don’t like getting information like that over the phone. But in my case, honestly, I’m so busy with my kids and I have a strong relationship with Elspeth. So I didn’t mind that aspect of the diagnosis at all.

What I did mind was that I was facing some hard decisions: a single mastectomy of the involved breast, a double mastectomy, reconstruction and if yes, what kind.