How many mammograms do I really need?

Last month I wrote about a strange vision problem, one that required an appointment through my medical provider, UC San Diego Health. I was pretty freaked out by this temporary impairment of vision, so getting the appointment nailed down was paramount, and I did a lot of hand wringing until the issue was resolved. Around the same time, I remembered my annual mammogram was due. I decided to line up that appointment too.

UC San Diego Health offers an online service called MyUCSD Chart. I wasn’t exactly sure when I’d had my last mammogram, so I signed on to get the date. In doing so, I discovered my next mammogram was not due for another year. They seemed to have changed the frequency from annual to every two years. I wondered if this had something to do with my insurance company. Then I recalled the recent news story about how the U.S. Preventive Services Task Force had revised their mammography guidelines.

I am now 53, and according to their new guidelines, I should be getting a mammogram every other year. More controversial, I guess, is their recommendation that women wait until they are 50 before they even start this screening process. The Task Force does offer a caveat: women over 40 who feel they need mammograms, should receive them.

I hate mammograms, and I’ve wondered more than once if I could get away with less screening. I was sorely tempted to go with the recommendation in MyUCSD Chart and allow two years to pass before I went in again. I reasoned, I was pretty stressed out over what had happened to my eyes, and I didn’t need to deal with this right now. Yet I also had a letter from UC San Diego Radiology reminding me about my annual screen—I decided to just call them.

My lumpy and dense breasts have received medical scrutiny since I was in my early thirties. I was living in Seattle in those days, and at some point my former doctor decided I needed a fine needle biopsy to determine what was going on with a particular lump. This most painful procedure revealed a cyst. My doctor then recommended I begin having annual mammograms. Monthly self-exams were also suggested, something I ultimately struggled to pull off.

When I was in my late 30s, another doctor—this one on the Oregon Coast—went over my mammogram results and recommended a stereotactic biopsy. I was sent to Eugene for this procedure, which resulted in a couple of chips being placed in my right breast. The biopsy was negative.

This saga of mammograms continued after I moved to San Diego. Because I have dense breasts, I am occasionally called back for a follow-up ultrasound, so it is often a two-shot deal for me. Last year, a follow-up mammogram and ultrasound were recommended. While I was having the ultrasound, the technician chatted with me in a cheerful manner, noting how I had dense breasts and how mammograms can’t reveal everything clearly in my particular case. When the results came in negative, I wondered if I was dealing with too much screening.

So this year I had the same question. Did I really need so many mammograms? I didn’t hate the fact that MyUCSD Chart was recommending every other year for my mammogram. I put in a call to UC San Diego Radiology, happily prepared to say, “Okay,” in the event that the scheduler said I needed to wait another year. However, she put me on the books.

This time, things were different. Normally I receive a letter informing me about the recommended follow-up mammogram and ultrasound. Yet this time they called me the next morning and got me in that day. This time the ultrasound technician offered no commentary as she conducted the session. She did take a lot of screenshots. And this time, she scanned my lymph nodes, something I’d never experienced before.

It was a whirlwind from there. Not long after the ultrasound was over, the interpreting radiologist came in to inform me I had a suspicious mass. A biopsy was scheduled for the next morning. Meanwhile, the radiologist told me a surgeon was on hand and would be willing to talk to me right then. I was barely catching my breath when this surgeon walked in to discuss what would probably happen if the mass was cancerous.

As I waited for my results, I received a lot of advice. For example, I know two former oncology nurses. I also communicated with a few breast cancer survivors. It is my impression that people are up in arms over breast cancer screening and breast cancer treatment. There’s a lot to digest, and a lot conflicting ideas about how much screening and treatment is truly necessary. I did tell people the surgeon thought my case would probably require a lumpectomy and possibly radiation. I told them she’d reassured me about the cosmetic side of things. She didn’t think it was likely I would lose much tissue or that it would mar my appearance much. She thought my prognosis was good.

I certainly wanted to collect advice from knowledgeable people, but I found the process upsetting. I was asked how big the mass was (I’d neglected to collect this detail). I was asked about my mother’s breast cancer. What kind did she have? Did she receive genetic testing to ascertain if she had the abnormal genes linked to higher breast cancer risk? I was told, maybe it’s a tiny cancer that will go away. Maybe I didn’t need to do anything. I also learned the trend right now is to save the breast as opposed to jumping to radical surgery. On the other hand, I heard from one breast cancer survivor about how a tiny cancer had been discovered by her doctor. They ultimately cut away a fourth of her breast to treat it. I learned about several women who didn’t want to risk recurrence. They chose a double mastectomy. I ended up with a spectrum of viewpoints and options to consider, but I was no longer reassured (my surgeon had originally done an excellent job in this regard). I worried I wouldn’t make a good decision about the course of treatment I should ultimately follow, if I happened to be dealing with the big C.

I now have the distinction of being the first UCSD Health patient to have a cancer detected by their new tomography process. I went through this imaging session the morning after my routine mammogram (before I was moved into the ultrasound room). As I held still in the usual uncomfortable mammogram position, the machine arced over my breast and took a number of shots along the way. My surgeon showed me how this image compared to an image taken during the original mammogram session. The mass is indeed clearer in the tomographic image. While it has been classified as small (roughly two centimeters), it is not tiny. The possibility of leaving a tiny cancer alone became moot because I have invasive lobular breast cancer and it must be dealt with.

My surgeon also informed me that lobular breast cancer is less common than the ductal variety. It is more diffuse and less easy to detect. She went on to say she couldn’t help me make a decision about my treatment plan until I underwent an MRI to determine if other areas were affected. The test was scheduled for the next day. I had over a week to wait before my next appointment with the surgeon.

Meanwhile, I was lined up to work with a genetic counselor. I had no idea what to expect from this session, though I vaguely thought they would draw blood and quickly test for the two gene mutations linked to higher breast cancer risk, BRCA1 and BRCA2. I felt I needed to know if I was a carrier, because women in this situation often decide on a double mastectomy to reduce their risk of recurrence and, ultimately, terminal breast cancer.

I should note, the possibility of developing breast cancer a second time quickly became the strongest focal point of my ruminations once I received my diagnosis. I figured my surgeon and her team would do a great job helping me to become cancer free—odds of my survival were placed at 90%. But because my father had dealt with three cancers (he died of leukemia), and my mother had struggled with two, I figured this was potentially a first round for me. Yet I could barely stand to think about a double mastectomy.

There’s something about UC San Diego Health that makes me think of the world that was envisioned when I was eating Space Food Sticks and drinking Tang. It has materialized. The medical provider seems to come up with new solutions before your eyes. To my surprise, the genetic counselor went over a list of not 2, but 17 genes they could examine to give me a sense of my risk for recurrence. These genes could also point to other cancers and, no doubt, numerous other problems.

My heart sank when I learned it would take 2 to 3 weeks before they would have my test results. The genetic counselor seemed to notice my impatience, and she asked if I would actually choose the bilateral mastectomy if I did test positive for either gene mutation. At this point, I communicated balking with my entire being. What she said next startled me. She said my test results could also be viewed as evidence that I needed more comprehensive screening for breast cancer once I was cancer free. She said, if I started getting an annual mammogram and an annual MRI, as well as swift treatment for any cancer that might emerge, my odds of survival would be roughly the same as those I’d be facing if I underwent a bilateral mastectomy. Thus if I knew I wasn’t going to choose a mastectomy no matter what my genes revealed, I could go forward with the lumpectomy before my genetic test results came in.

The next time I saw my surgeon, I questioned her about what the genetic counselor had stated regarding more comprehensive screening versus a bilateral mastectomy. My surgeon qualified this information by noting that women in their forties may have a better outcome with the bilateral mastectomy. For me, however, it was more likely to be a toss-up.

It’s been almost three weeks since I had my routine mammogram. In three more weeks, I will receive a lumpectomy. I’m also expecting to undergo radiation therapy. I’ll probably have my genetic test results by then, though I don’t expect to ask for a different course of treatment. In any event, I’m no longer worried about how many mammograms I’ve had in the past—or how many I will have in the future.