I was diagnosed with DCIS — Stage 0 breast cancer

I’m religious about getting my annual mammogram. That’s because I have a history of fibrocystic disease and in my 20s had a fibroadenoma (benign tumor) removed from my right breast. Every year, I worry that something not so benign will show up and every year I sigh with relief when I get a letter saying everything is normal. Not this year. Instead, I got a phone call from the Mammography Department at Mercy Hospital. The radiologist wanted me to come back for additional views. My heart sank.

My husband Barry took time off from work so he could go with me. If there was any bad news to be delivered, I didn’t want to hear it alone. Renee, the kind and wonderful mammography tech who had done my screening mammogram told me she was going to take some magnification views so they could look at an area in my right breast more closely.

After she was done, Barry and I were ushered into the viewing room to talk with the radiologist, who pointed out a sprinkling of tiny white dots near the middle of my mammogram and explained that they were microcalcifications. Some of them looked normal, but others could go either way. Either way? I tried to remain calm and stared at the image intently. You can look too. The picture at the beginning of this post is a copy of the magnified view.

While he talked, I studied the dots and saw what he meant. Some seemed symmetrical, but a patch of them looked irregular. What should I do? I asked. His response was that I could watch and wait or get it biopsied. I’m generally not good at watching and waiting for anything and in this instance, there was no way I’d choose that option. I need to know what I’m dealing with I told him. Let’s get it biopsied.

The biopsy was not fun, but everything went smoothly and it didn’t take as long or hurt nearly as much as I expected. Thank goodness for small favors or in my case, for an average-sized breast with calcifications in an easy to access location. I had a stereotactic biopsy and plan to go into more detail about the procedure in a future post. I’m also more than happy to answer your questions if you have any.

Diagnosis: DCIS

Three days after the biopsy, my primary care doctor called to tell me it was positive for ductal carcinoma in situ or DCIS.  Surprisingly, I didn’t fall apart. In that moment I was calm and ready to take action. The radiologist had mentioned DCIS, so I had researched it quite a bit and had “my plan” in place. If I needed surgery, my first choice was Breast Care Specialists at Mercy. Because I did Mercy’s marketing and public relations for many years, I knew them well and felt confident I would be in good hands. That said, I am a firm believer in second opinions and got one from Dr. Dixie Mills, who is currently director of breast services at Harvard Vanguard Medical Associates in Boston and at one time was the medical director at the Dr. Susan Love Research Foundation.

Before I continue my personal story, I want to explain some of the things I’ve learned about DCIS. It’s considered a stage 0 breast cancer that is not life-threatening and potentially 100 percent curable. Some health experts refer to it as a noninvasive precancer. Abnormal cells are inside the milk ducts and have not spread to surrounding breast tissues. If any do spread, it’s considered invasive cancer. Nearly all invasive breast cancer starts out as DCIS, but not all DCIS goes on to become invasive. The problem is there is no tried and true way to know which ones will evolve. That’s why treatment is usually recommended, beginning with surgery and possibly including radiation therapy and tamoxifen, a hormone therapy used to treat invasive breast cancer and DCIS that test positive for estrogen receptors.

According to the American Cancer Society, about 60,000 cases of DCIS are diagnosed in the United States each year, accounting for about one out of every five new breast cancer cases. (Although it’s unusual, men can also get DCIS.) Finding a lump is pretty rare with DCIS; most of the time it’s discovered on a mammogram.

There are two main reasons there are so many cases of DCIS and why the number continues to grow:

• People are living longer and, as we age, our risk of breast cancer increases.
• More people are getting mammograms and the quality of the mammograms has improved. With better screening, more cancers are being spotted early.

Meeting with the breast surgeon

A few days after I got my biopsy results, my husband and I met with the surgeon, Dr. Suzanne Hoekstra. She explained that the biopsy had removed some, but not all of the calcifications. What was left appeared quite small, which relieved me greatly — for a few seconds. Because on the flip side, what they could see on the mammogram taken after the biopsy might only be the tip of the iceberg.

We agreed that a lumpectomy was the best next step and we’d wait for the pathology results before deciding about any further treatment. It was really hard not to flip out then and there.

One the day of my surgery, I was essentially on autopilot and more afraid of the wire localization procedure I had to have than going to the operating room. Because there was no lump to feel, just microcalcifications, Dr. Hoekstra needed something to lead the way to the abnormal cells.

After I had checked in at the outpatient surgery department, Dr. Hoekstra’s nurse Elizabeth Huebener bundled me up in a wheelchair and delivered me to the mammography department where Renee took more x-rays and using them as a guide, Dr. Hank Talarico, the radiologist who had also done my biopsy, inserted a fine wire into my breast. I sat there with my breast squeezed between two plates staring out the window trying not to focus on what was going on as he inserted the wire. Suddenly, tears were streaming down my face. He was as kind and gentle as he could be. It didn’t even hurt, just stung a little, but I felt invaded and helpless and scared. As soon as it was done, Renee and Elizabeth sprang into action and gave me comfort — there is nothing better than arms wrapped around you at a moment like that.

My other comforts were Barry and my sister Becky, who watched over and entertained me (and everyone else) throughout the long morning. Humor is right up there with hugging.

Going into surgery and later the recovery room are mostly a blur. Before I knew it, I was on my way home, my chest completely enveloped by an ace bandage. More comfort was waiting for me when I arrived — my sister Debi with a steaming bowl of homemade chicken soup loaded with fresh vegetables from her garden.

The surgery was on Friday, September 19, 2014. The following Tuesday, Dr. Hoekstra called to tell me she got all of the DCIS, which turned out to be about the same size as on the mammogram, and wide margins of normal breast tissue. It was the best possible news.

A few days later we met in her office and went over my risks and agreed that because the DCIS was small — about 5 mm at its largest — and the margins of normal tissue so large — from 4 mm to about one centimeter — I could say no to radiation therapy treatments. It’s a decision that can’t be made lightly and not one that all women would choose, but after discussing it with both Dr. Hoekstra and Dr. Mills, it seemed like the right choice for me.

There is so much more I could say about my experience and what I’ve learned about DCIS and I expect I will in future posts. If you learn one thing from this blog post, I hope it is that if you’re due for a mammogram, don’t put it off.

American Cancer Society mammography guidelines

• Yearly mammograms are recommended starting at age 40 and continuing for as long as a woman is in good health
• Clinical breast exam (CBE) about every 3 years for women in their 20s and 30s and every year for women 40 and over
• Women should know how their breasts normally look and feel and report any breast change promptly to their healthcare provider. Breast self-exam (BSE) is an option for women starting in their 20s.

Some women — because of their family history, a genetic tendency, or certain other factors — should be screened with MRI in addition to mammograms. (The number of women who fall into this category is small: less than 2% of all the women in the US.) Talk with your doctor about your history and whether you should have additional tests at an earlier age.

Paying for a mammogram

If you’re worried about paying for a mammogram, the Maine CDC Breast and Cervical Health Program offers free mammography services to women who are eligible according to age, income and insurance coverage. For more information, visit the Maine CDC website or call 1-800-350-5180.

The Affordable Care Act mandates that screening mammograms be covered by insurance with no co-pays or deductibles. On the American Cancer Society website, you can read an overview of the various laws that require private health plans, Medicaid, and Medicare to cover early detection services for breast cancer screening.

Gratitude

I am filled with gratitude that my mammogram picked up the microcalcifications — they weren’t there the year before and they could have been something else by next year. I happen to have some risk factors for breast cancer — I had my children in my late 30s, I’m over 60 and I have a history of benign breast disease. I’m now at an increased risk of both DCIS and invasive breast cancer. I will be followed closely by Dr. Hoekstra — and if either rears its ugly head, hopefully, we’ll catch it early again.

I’d never heard of DCIS before and I’m discovering that neither have a lot of other women. If you have any questions or comments, don’t hesitate to get in touch. You can leave a comment below or send me an email.

I’d like to finish this post by saying thank you to everyone who helped me along the way — most of them at Mercy. There wasn’t a single person who wasn’t professional and kind, but I didn’t get everybody’s names. Those I would especially like to thank include Renee and Dr. Talarico in Radiology,  Dr. Hoekstra and Elizabeth at Breast Care Specialists, Lauren, my pre and post-op nurse, and Dr. Brian McAllister, the anesthesiologist. Also, thank you to Dr. Mills and, of course, to Becky and Barry!