Discussing Breast Cancer

Time to check in with you all and then share my reality check.

First of all, the cat came back. Six days of mystery but a lifetime of relief (she herself is down two or three lives, I’m sure. Thank you for your patience.

Second of all, while I love the fact that my children are on their summer vacation from school, I am keenly aware that it reeks havoc on my schedule. Nothing is like it was when I first started this blog and I apologize. Please continue to be patient with me.

Finally, I’m in a funk because tomorrow is oncology day. I decided to be frugal with my time and schedule two appointments with two doctors on the same day to save me a trip to Yale. Seemed smart when I made the calls. But now I have a nice case of misery brewing. I’ll be at Yale all day tomorrow remembering what brought me there in the first place.

Living with cancer recurrence … it is such a pain. I know these oncology check ups every three months are necessary but a longer stretch would be nice. I know that when cancer returns that fact further warrants good follow-up care (oh, here’s a link to a great write up on that reality). Logic helps rationalize my attitude, but emotions still dictate my mood.

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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

Since cancer had come back in my right breast after surgery and radiation and hormone therapy … it was clear that my right breast needed to come off. Apparently it wasn’t just prone to developing cancer cells, it enjoyed growing them, and was good at it. That made at least a single mastectomy a must in everyone’s eyes. I couldn’t help but chant in my head … “we must, we must, we must remove my breast.”

Even though my left breast wasn’t involved with my breast cancer recurrence, I had the option of removing it. It was considered a perfectly reasonable option. An option. That meant I had a choice to make.

My husband had no doubt in his mind that a double mastectomy was the way to go. He didn’t want to ever, ever go through the stress of a diagnosis again. “Why wait to find out that the cancer was back a third time in your left breast,” he voiced to me when I found myself in a quandary.

I, on the other hand, could have been talked out of a double mastectomy. I was still in a bit of denial. I really didn’t like the idea of unnecessary surgery and I wasn’t sure it was necessary to get rid of both breasts. Sometimes I wasn’t sure the pathology was right. I often found myself imagining the results had been switched ’soap opera style’ and I never even had breast cancer in the first place let alone a second bout of it.

But I was at high risk for developing breast cancer in my left breast since my right breast and I had a personal history with the disease. I read the results of a great study posted on breastcancer.org about just this decision. In a moment of clarity and reflection on how hard my diagnoses were on my family, I realized it was the right choice for me to try to make sure we were never, ever in this situation again.

And that meant … a double mastectomy.

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.

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.

Let’s go back to 2003 … after my partial mastectomy and radiation therapy I was considered cancer free. The question on the table was would I be able to stay that way?

I was 36 years old. The pathology from my surgery determined my cancer cells were estrogen receptive (ER+). I hadn’t started menopause which meant I had a good amount of estrogen running throughout my body. I had a choice to make: do nothing or start hormone therapy, another adjuvant therapy, and that meant taking Tamoxifen.

Now Tamoxifen was supposed to be a pretty great drug (the FDA touted its benefits when it approved it back in 1998). I was told it would prevent whatever cancer cells I might have had left in my breast from feeding on the estrogen my body produced. I was told it would reduce my risk of recurrence by around 50%.

I was told that my risk of recurrence within five years was maybe around 10%. Taking Tamoxifen would take that number down to around 5%. I liked the lower number, that’s for sure.

Of course, there were some side effects to consider — mostly menopausal symptoms like hot flashes and vaginal dryness — also some risks: blood clots and endometrial cancer.

My oncologist felt the benefits far outweighed the risks. When asked point blank if she would take it if she were me she said, ‘yes.’

There was one potentially big problem, however, from where she stood. If my husband and I wanted a third biological child she could not ethically prescribe the drug for me because it could cause fetal harm were I to conceive while taking it. If we were done having kids, however, she’d write the script that day.

My husband and I looked at each other and smiled. No, we weren’t done having children. Yes, we wanted a third child. But we agreed immediately that she should write the prescription. See, we knew that God’s plan for our lives was to bless us with a third child, a little girl, whose biological parents in China could not raise her. We knew we’d adopt child number three so taking Tamoxifen was not going to be an issue in that regard.

I started taking Tamoxifen the week after my radiation therapy had ended. I experienced no side effects at all while taking the drug. But there was one big problem. Tamoxifen was supposed to keep me cancer free. Remember the numbers? It was supposed to reduce my risk of recurrence by about 50%. It was supposed to bring my personal risk of recurrence within five years from 10% down to 5%.

The cancer cells in my body didn’t listen to the numbers that day in my oncologist’s office. They had their own plan and it didn’t involve me staying cancer free for long.