Numbers, numbers, numbers

October 2, 2015

It’s not clear that ductal carcinoma in situ (DCIS) can develop into invasive ductal carcinoma (IDC). There are a lot of opinions out there.

Doctors think that only a tiny portion of DCIS will at some point involve IDC, maybe 10%-15% according to my surgeon. I am one of those women. There is a lot of research going on, so those percentages will change with every new breakthrough, which is good, because understanding DCIS could very well be a key to something big for breast cancer research. I hope so for all the other women who may be going down a version of my path at some point in their lives. But I’m not a doctor or medical researcher. I’m just one woman trying to understand her own cancer.

The numbers just keep piling up inside my brain. I can usually make sense of things by way of numbers. So I start to think and calculate based on 100 women. These are all ballpark numbers. Like I said, I’m not a doctor or researcher, but I want to try to wrap my brain around it, and this is what I came up with.

100 women
12% – will develop some form of breast cancer. That’s 12 women.
80% – of the 12 women diagnosed with breast cancer will have invasive cancer. That’s 10 women.
10% – of the women with invasive breast cancer will find some cancer in their lymph nodes. That’s 1 woman, named Leah.

One woman in 100. Looks like I am in an elite group. I have hit every goddamn bad statistic so far.

I keep wanting this to stop; at DCIS, at lumpectomy, at mastectomy, at invasive, at lymph node. And it hasn’t. The one thing I’m left with is Can I not have to get chemo, please? Can I just get a break here? We won’t have an answer for at least 2 more weeks. We’re still waiting for pathology reports, I need to have a post-op meeting with my surgeon, then we move on to the oncologist. Cancer is my co-pilot.

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The best worst case scenario

September 25, 2015

This morning when I was finally out of my drug fog I was able to get a glimpse of my modified self under the bandage and two sentences kept quietly coming out of my mouth over and over; “Oh, my god,” and “This is real.”

Amelia is going through the same thing I am right now, feeling everything that I am, plus layers and layers of her own emotions. She is the Taskmaster, the Nurse, the Therapist, The Advocate. She is my voice of reason.

Cancer is putting both of our lives on hold. The amount of space cancer takes up is almost as large as Amelia and I put together. It’s big. But not bigger than the two of us.

When I saw Amelia after surgery, she didn’t have to say it. I knew cancer was in a lymph node. I knew it all along. So instead of the road ending with “just” a mastectomy we will go down another road. The road of finding out what feeds the cancer so we can find out how to destroy the cancer. That will dictate what type of treatment I will need, if any at all. My sense is that I will need treatment. So far, every worst case scenario has turned into our best case scenario, so I’ll take microinvasive cancer in one lymph node at this point. I will take Stage 1.

In my head I think, Isn’t giving up by left breast enough? Can’t the road end there? I’m going through the why and what the fuck phase. Right now I can’t even wrap my mind around my chest, where my left breast used to be just yesterday and what it looks like now. I do not look forward to taking the bandage off in two days and seeing what’s there.

Becoming an expert

September 16, 2015

In thirteen days Amelia and I have had to become breast cancer experts, specifically my cancer. Amelia knows cancer, but not breast cancer.

My nature is to learn. The minute I got home I started Googling: DCIS, IDC, micro calcifications, macro calcifications, necrosis, high grade, 11 centimeters, cancer genes, HER2+, mastectomy, reconstruction, no reconstruction, chemotherapy, radiation. There is so much information out there. Better yet, there are forums of real people talking about their experiences, particularly at www.breastcancer.org. The forums on that site are a wealth of knowledge. Women (and men) sharing their stories, diagnoses, surgeries, what works, what doesn’t work, stages, and everything in between.

One in eight women will get breast cancer. You know eight women. Think about it: one of them most likely will have to deal with breast cancer. These are things I already thought about before I was diagnosed. I’d be in a room full of my favorite women and morbidly think, how many of us are going to get cancer? It’s a sad fact.

I hereby grant breast cancer asylum to seven women.

Hi, I have cancer

September 3, 2015

“You have really complicated breasts”.

This is nothing I didn’t already know. They’re extremely dense and usually have a lot of fluid-filled cysts. Most of these cysts I don’t even feel.

The technology at the Elizabeth Wende Breast Clinic in Rochester, New York is fantastic. There are now mammograms that are specific for women with dense breasts.  Normal mammograms are easier to read; they’re clear. My mammograms are like a cloudy night sky. Technicians have described the films as “having a lot of noise”.

I always have a diagnostic appointment the same day of my mammograms to get a few cysts aspirated via ultrasound and needle aspiration. Today, the Doctor zoomed right by my cysts and went to my lymph nodes. This was not good.

He settled in on the left one and said, “Your lymph nodes look good, but what I really want to get a look at is this”. He moved over a long band that looked like a nebula with tiny, bright stars clustered together and scattered throughout it.

“These are calcifications. We usually don’t worry too about these when they are singular and symmetrical. But, when they are clumped together we get suspicious. We’re going to need to do a core biopsy.” The abnormal section he showed me was large, really large. It looked like 4-5 inches around the outside of the breast.

A feeling that I’ve never had before creeped in, and I knew I was going to lose my breast.