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.

Whether or not a survivor even questions the presence of her ovaries in her body depends on the results of her pathology and the answer to one specific question: is her cancer estrogen receptive?

If she is, and the cancer in her body ‘feeds’ on estrogen, there are treatment options to consider that will either (1) suppress her estrogen production with pharmaceuticals (Tamoxifen tablets) (2) chemically stop her estrogen production (Zolodex shots) (3) remove her estrogen production (Oopherectomy).

(more…)

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

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.

I said it the other day: I had a recurrence while taking Tamoxifen. But, I was pre-menopausal, an important factor if you are making a decision on whether or not you should take the drug yourself.

It is important to realize that research continually shows the benefits of Tamoxifen. Here’s a link to the Washington Post coverage of a new study published in the Journal of the National Cancer Institute. The study followed women at high risk for the disease who had first undergone a hysterectomy and ovary removal then began taking Tamoxifen. Astounding results — the rate of breast cancer cases were significantly lower for the women taking the drug.

This proves a few points to me. If you are at high risk for the disease, and are ER+, then Tamoxifen might be for you, even if it means you have to endure side effects like hot flashes and night sweats.

Consider the choice … life with side effects vs. possible death by disease. A “no brainer” if you ask me. but then again, I’m a two time survivor.

It also proves to me that drug companies need to start focusing on finding something with the same efficacy for pre-menopausal women with this blasted disease. More and more young women are battling breast cancer than ever before (thanks to early diagnosis, in part, I’m sure).

That’s my plea this morning. Help us. Please.

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.