When There Is No Consensus: One Woman’s Journey Through Breast Cancer Treatment

There is no “good” cancer to have. But if there were, it would be the kind with which I was diagnosed. DCIS. Ductal Carcinoma In Situ. Say that three times fast.

When the doctor called to tell me it was breast cancer, I was driving to Thanksgiving, and had two more hours driving ahead of me.

My heart lurched when I saw her on my caller ID. My brain lurched when she told me the results were positive. Then I grounded myself with a mindfulness practice, called my sister, my son and a couple of friends, and kept driving.

The doctor reassured me, and I reassured those I called, that DCIS is one of the “good” cancers. The treatable kind.

My sister still cried after we hung up, but I didn’t know that until I was recovering. She’s a trouper who was with me throughout, keeping my spirits up and bossing me around in general to help me recover.

What is DCIS

DCIS is a fancy name for breast cancer cells contained in a milk duct. Contained is the operative — no pun intended — word here. Contained is what makes the cancer I had the “good” kind.

Ductal carcinoma in situ (DCIS) is a condition that affects the cells of the milk ducts in the breast. The cells lining the milk ducts turn malignant (cancerous) but stay in place (in situ). DCIS is an early form of breast cancer. It is not invasive — the malignant cells do not grow through the wall of the duct or spread to lymph nodes or the bloodstream.

I’m fortunate we caught my tumor early. If cancer cells are a lot larger than mine were when detected, and/or there are several in various milk ducts, mastectomy is recommended.

I would have done that, of course, and still will if my cancer recurs or comes back as something worse.

I got a breast lift out of this one. If there’s a next time, I’ll get entirely new breasts. Yes, I embrace so-called silver linings, but of course I’m scared this won’t be the last surgery.

My tiny cells only required surgical removal of the cells — a lumpectomy — even though 2mm isn’t exactly a lump.

I know lumps. Twenty years ago, I had a golf ball-sized lump removed from the same breast. It was benign.

My son’s fears

My son was in fifth grade then. When my sister picked him up from school after my surgery he asked, “Did my mama die?”

To this day knowing my little guy was scared all day at school brings tears to my eyes, and he’s now thirty-one

This time he was equally scared I would die, as the breast lift surgery was supposed to take over two hours, and that’s how Lebron James’ mother died. He told me how afraid he’d been after my surgery was successful

Every bit of evidence counts

I didn’t know to ask what type of lump the golf ball was twenty years ago. I just heard the word benign and went on my merry, clueless way. Did this have any cause and effect or relation to or with my recent milk duct tumor? I’ll never know. My surgeon was old, twenty years ago. My records are likely long gone.

I know lumps. Twenty years ago, I had a golf-ball-sized lump removed from the same breast.

Here’s why knowing what “lump type” it was could matter in my decision for follow-up treatment and for researchers.

There is not enough research on DCIS, its causes, or why some people diagnosed with it progress to invasive breast cancer and some do not.

Research seems to indicate that getting radiation and/or hormone blocker therapy after surgery may not increase survival odds; or whether someone with DCIS will get invasive breast cancer later.

My decision journey

I had the tiny cancer cells removed and am on the mend. The surgeon got clear margins way beyond the 3mm that would require radiation. My closest margin was 9mm.

One of my three — count them, three — oncologists, the one who calls himself the quarterback, says I don’t need hormone blockers.

Good call, since I told him I wasn’t going to take them, anyway. That was my knee-jerk reaction because I’d like to keep the little estrogen I have left. It may have a tendency to lock onto cancer cells like the ones I had, and to grow uterine fibroids, but it also keeps me from going through second menopause.

Blockers have side effects that are the same as menopausal symptoms. Fun.

I haven’t seen the radiology oncologist yet, so we’ll see if he and I can agree. I don’t want radiation, but here’s why I have to think about it, even though it’s unknown whether it will increase my survival odds:

If left untreated, some cases of DCIS will transform into invasive breast cancer, but it is uncertain how many. Estimates of DCIS cases that will become invasive breast cancer range from 20–50 percent. Put another way, 50–80 percent of DCIS cases will not become invasive.

Clinicians and patients, then, face the dilemma of having to weigh these risks versus benefits. DCIS treatment can be costly and take a physical and emotional toll on a patient. At this time, it is not possible to predict which cases of DCIS will become invasive breast cancer and which will not, which is why research into DCIS is so needed.

So that’s also fun.

On the other hand, there’s not a significant difference in survival with radiation and surgery or surgery alone.

Some women with small, low-grade or intermediate-grade DCIS and widely negative surgical margins may have a low risk of DCIS recurrence or invasive breast cancer after a lumpectomy [5]. (Low-grade and intermediate-grade DCIS tend to grow more slowly than high-grade DCIS. Margins are negative when there are no cancer cells in the rim of breast tissue surrounding the tumor that was removed during surgery.) Some of these women with a low risk may choose to avoid radiation therapy altogether or consider limited radiation therapy such as partial breast radiation therapy[5,12].

That’s me. Small cancer, huge margins around the cancer that are cancer-free, and intermediate grade.

Maybe I’ll skip the radiation.

What’s age got to do with it?

What I haven’t asked is if my age is a reason hormone blockers aren’t being recommended. I’ll remember to ask this if the radiologist oncologist doesn’t recommend radiology.

I wonder if they think an excellent 98% survival rate of ten years is enough for someone like me, so why go for possible overkill. I don’t want the overkill, you understand, but I also don’t want to get written off because of my age.

Either way, I’m fortunate, in that only 2% of DCIS patients die from breast cancer in ten years, with or without any other treatment besides surgery. Looking at living only another ten years though, is sobering. I’m not ready to die now, and don’t think I‘ll be ready at eighty-two, either.

Fortunately, further research shows the percentage stays nearly the same for fifteen to twenty years. If my luck holds out, I could make it to ninety-two. I was hoping for 102, but here I am.

Glad to be alive. I’ll keep you posted on my decisions.

Get your mammogram, ma’am.

DCIS is relatively easily treated, and the newer mammograms catch it much sooner. Mine was less than 2mm.

If you’ve had mammograms in the past and don’t like being smushed, the newer ones are so much better than before. They hardly smush at all. I felt no pain from any of the three mammograms I had. The first two were to find the cancer, the third was to guide the needle biopsy. The needle biopsy also did not hurt as they used effective local anesthesia.

Here’s the most good news. Women diagnosed and treated for DCIS, with or without hormone blockers, are less likely to die of other causes than the general population.

Apparently, those of us who practice preventative care, including mammograms, and get treated early, are also healthier overall.

That’s true for me. Let’s make it true for all of us.

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This post was previously published on Middle-Pause.

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