Tuesday, August 30, 2016

Mammograms: Getting Called Back for Additional Testing

At some point in a woman's life, she should start having regular mammograms. When she should do this is a matter of some controversy, but sooner or later, most women will have regular mammograms every year or two.

But what happens when you get a call back after your mammogram telling you that you need further imaging? What can you expect, and how likely is it that you will be diagnosed with breast cancer? How can you handle the anxiety while waiting for further results? Where can you get further support and information?

Earlier this year, this happened to me. I had my regular mammogram and got a call back telling me they had found two suspicious areas and I needed further testing. It was very unsettling. Even though intellectually you understand it's not an actual diagnosis of cancer, it feels like a sentence of doom. Your anxiety levels go through the roof.

Statistically, only a few women who get called back for additional testing after an "abnormal" mammogram result actually have cancer. Most are just fine, but many of those called back have fears about what additional testing entails.

Let's talk about what diagnostic mammograms are, what additional testing may be used, what to expect during the appointment, how to handle the waiting, and the latest screening guidelines. Then I'll share with you my diagnostic testing experience.

First Step: Don't Panic

Although it's deeply unnerving to get "the call" telling you to get more testing, the first step is to stay calm. Don't panic and start mentally going to worst-case scenarios. As one resource notes (my emphasis):
If doctors find something suspicious, they’ll call you back – usually within just 5 days – to take new pictures or get other tests. Getting that call can be scary, but a suspicious finding does not mean you have cancer. In fact, less than 10% of women called back for more tests are found to have breast cancer.
Although your mind will tend to automatically assume the worst, take a deep breath. Remind yourself that even when extra testing is required, you have a 90%+ chance of not having cancer. 

It's normal to cycle in and out of various "what-if" scenarios in the time before your diagnostic test, but the important thing is to focus as much as possible on the other business of your life. There's no need to panic when you don't know if there's something to actually panic over.

It's understandable to do some worrying, but don't let it consume you. Hard as it is, try not to focus on the uncertainty; let the future take care of itself. Focus instead on the everyday tasks of your life.

Screening vs. Diagnostic Mammograms

An important aid in avoiding panic is to remember that there is a major difference between a screening test and a diagnostic test.

A diagnostic test tells you for sure whether or not you have a certain condition. To get that kind of certainty, diagnostic tests are very involved, expensive, and time-consuming. Because of the time and expense, it simply does not make sense to order them for everyone.

Therefore, a simpler and less-expensive test is used on everyone ─ a screening test. Screening tests are designed to test a wide variety of asymptomatic individuals to look for problems that might need a closer look. These tests are slanted towards what's called "sensitivity" ─ a high chance of finding any existing problems ─ so as not to miss any potential disease. The trade-off is that many people (including many who don't have the disease) will require additional diagnostic testing, and that testing process can be unnerving.

Diagnostic testing looks specifically for disease or a high suspicion of disease. It is geared towards "specificity" ─ accuracy in ruling out disease. If something pops up on the screening test that is unusual or statistically outside of the norm, that person is called back in for further testing. [Of course, anyone with a distinct symptom of a disease goes straight to diagnostic testing.]

This arrangement of starting with a screening test and only going to a diagnostic test for a few people is a smart way to save time and money in an era of limited medical resources. But because most of the public doesn't understand the difference between a screening and diagnostic tests, many people automatically assume that a call-back means they likely have cancer. It doesn't.

Handling the Anxiety of Waiting

Even for people who understand screening vs. diagnostic testing, call-backs can still feel quite alarming. Human nature makes us emotionally jump to worst-case scenarios. That's why you have to keep reminding yourself not to panic. The best thing to do is simply to focus as much of your attention as possible on the tasks of everyday living and not dwell on the fear. Find ways to redirect your anxiety.

Of course, just telling yourself not to worry may be counterproductive; it may be easier instead to let yourself worry but to limit the amount of time spent on it. If you find yourself being taken over with worry, try writing down your worries, putting them into an envelope (physical or mental), and taking them out to indulge the worry only at specified times. When you do indulge the worries, let yourself do it in depth. Think of every worst-case scenario you can, weep and wail, write your good-bye letters, plan your funeral, etc. But then at the end of the specified time, stop and put those fears away until next time. By indulging your fears periodically, you lessen their emotional dominance the rest of the time. It's the rigidly suppressed fear that tends to multiply. Let yourself express your worries but it may help to put some limits on that expression.

Another thing that can help is to journal about why you are so worried. Do some stream-of-consciousness writing to explore your fears. Often the answers seem simple when you start, but the writing process helps uncover more subtle reasons that can give you insight. Journaling won't make the worry go away but understanding the true source of the anxiety may help diffuse its power so it is less emotionally overwhelming.

It's only natural to worry, but try to keep the worry in perspective, try to understand it, and find ways to deal with it that keep it from taking over your life. Soon you will have the answers that you need and can either relax or start developing a positive plan of action. If you need additional support, don't forget that many cancer organizations have 24 hour free phone lines for information and support.

Follow-Up Testing: What to Expect

When you return for follow-up testing, what can you expect?

Basically, plan to devote about half a day to the appointment, give or take. Remember not to wear any powder or lotions to the appointment. Bring a book to help occupy yourself while waiting. The appointment will take several hours and quite a bit of this will be waiting.

You will start by having a longer and more in-depth mammogram. More images will be taken, using more angles, so they can really focus in on the area in question. Although longer than a normal mammogram, this process is usually less than an hour. Don't be afraid to ask questions about the process; technicians are limited in what they can say (and obviously can't give a diagnosis), but often can offer insight into what is being looked at and why.

Next comes the ultrasound. Although not mandatory, most mammography centers also do an ultrasound of the breast during follow-up testing. This process is also around an hour and will examine closely any areas of concern on the breast as well as lymph nodes underneath the arm.

Sometimes an MRI is also done. This is not considered standard-of-care and may not be covered by insurance so it is not part of most routine follow-up testing at this time.

You will be asked to wait on site while a radiologist reviews the results. This can take an hour or two more, so be prepared to wait, but you should get the results that day. The results are usually one of the following:
  • The suspicious area turned out to be nothing to worry about and you can return to your regular mammogram schedule
  • The area is probably nothing to worry about, but you should have your next mammogram sooner than normal – usually in 4 to 6 months – to make sure it doesn’t change over time
  • Cancer was not ruled out and a biopsy is needed to tell for sure
Remember, even if a biopsy is recommended, chances are you still don't have cancer. Often biopsy results are benign. This is hard to remember when you are told you need a biopsy but it's important to keep reminding yourself of this fact.

There are different types of biopsies. Most are done with a needle but some need a small incision. Biopsy results have to be sent away for analysis, which can take anywhere from a few days to a week or two. The wait is difficult. Find some emotional support but don't forget to keep your focus on normalcy during daily life.

If your biopsy results are benign, ask the doctor whether any follow-up is needed and when your next mammogram should be. Get the results and recommendations in writing for future reference.

If your biopsy results show cancer, then it is time to consult a breast specialist. People often report difficulty in recalling the information given at these consultations, so take a knowledgeable and supportive friend or relative with you to the appointment. Ask to record the appointment so you can refer back to it later. Take notes (or have your support person take notes) and ask for correct spellings of any words you don't know so you can research it further. You can find a list of questions to ask here.

Don't be afraid to ask for a second opinion about your options. You can you get completely different advice from another care provider so it really is worthwhile to get a second (or even third) opinion. You can also call the American Cancer Society for information and support at 1-800-227-2345. Many additional online resources for support also exist; don't be afraid to reach out to them. Many women find it helpful to be paired with someone who has been through breast cancer themselves and is trained in offering support to newly-diagnosed patients.

Reminder of Screening Guidelines

With all the anxiety that a positive screening test can generate, it's no surprise that many women opt out of yearly mammograms. They simply don't want to deal with the anxiety it produces. Others are concerned about over-treatment for non-aggressive cancers, false-positives, and the cumulative effect of the radiation from many mammograms.

Yet we know that statistically, mammograms save lives, especially as women age. So when should women start getting mammograms?

Unfortunately, even the experts can't agree on how often women should have mammograms. Some organizations suggest regular screening start at 40, some suggest 45, some suggest waiting till 50.

Once you do start regular screening, some suggest that every 2 years is enough, while others strongly push yearly screening. It's hard to know what to do.

From cancer.net, Dr. Connie Lehmen gives a summary of the controversy over screening guidelines:
At an absolute minimum, women should begin screening mammography no later than age 50 and get a mammogram every 1 to 2 years until at least age 74. All medical organizations agree with these minimum recommendations for screening...The areas of disagreement, and reasons for differences in the recommendations from different groups, center around the age to begin screening (40, 45, or 50) and the interval of screening (every year or every 2 years). These variations are due to different groups of people who interpret clinical trial data differently.
Bottom line, when you start and how often you screen really depends on your risk factors. Recommendations will vary from woman to woman.

How does "obesity" figure into recommendations? That's harder because it's not always clear. We do know that high-BMI women are less likely to get regular mammograms or follow-ups after abnormal mammograms, which may partially explain why we tend to be diagnosed at more advanced stages of cancer. Yet there is only limited research and recommendations specifically on the trade-off of benefits and risks of screening in obese women at different ages.

As women of size, it is clear that we are at increased risk for post-menopausal cancer ─ but authorities often neglect to mention that we are generally at decreased risk for pre-menopausal breast cancer (except triple negative breast cancer). But when does that initially decreased risk cross over to increased risk? Is it a hard and fast conversion right at menopause, or a gradual increase of risk as you approach menopause? I don't think anyone really knows for sure.

That means it's particularly hard to know what mammogram schedule a woman of size should follow during that in-between time in the 40s when women are peri-menopausal.

The short version is that mammogram decisions then really seem to boil down to your other risk factors (especially family history, breast density, and blood sugar status) and becomes a personal choice you decide in consultation with your healthcare provider.

Personally, not having access to much family medical history and having had a lot of fibrocystic lumps, I had a number of mammograms in my 20s and 30s. In retrospect, I think we did too much. After a lot of research, I opted out of yearly mammograms in my 40s, but did have a couple to establish a baseline. Now that I am past 50 I think it sensible to get regular mammograms (about every year or two) because high-BMI women really are at increased risk for post-menopausal breast cancer.

I still don't love mammograms but have found a center where the care is more sensitive and gentle than I've experienced in the past. It's still anxiety-producing but regular mammograms seem a sensible precaution at my age.

But that's just my choice, based on my own circumstances. Yours may be completely different.

My Experience with Call-Back Testing

Needing a follow-up diagnostic mammogram really threw me. It just goes to show that having intellectual knowledge about a subject doesn't always have a lot to do with how you react to unsettling news.

Even though intellectually I knew that I probably didn't have cancer, I'm very good at "catastrophizing." It took quite a bit of effort to reel back my tendency to immediately go to the worst-case scenarios. Reading up about screening vs. diagnostic testing helped me scale back some of my fears. Education can be a powerful counter to fear.

When the anxiety elevated despite my reading, I made an effort to explore it. Obviously I was deeply concerned about leaving my children motherless, especially because I still have a young one at home. But upon further reflection, I realized that my fear was made worse by the fact that my husband had just been laid off. My big concern was that if I did have breast cancer, we'd run out of health insurance and I'd bankrupt the family and cause us to lose our house. We also have two kids in college, another in high school heading off to college soon, and the young one in private school; I was worried that my medical bills would derail their educations.

For me, handling the anxiety proactively while waiting needed multiple approaches. Research helped reassure my rational mind that I had a 90% chance of not having cancer. Emotionally, taking the time to explore why the fear was persistent helped me understand and diffuse a lot of its power. I was then better able to just focus on the everyday tasks instead of spending my days in constant fear.

In the end, I didn't have cancer, just some "asymmetrical lymph nodes" that the radiologist initially flagged but ultimately considered normal. I don't even have to go back for more frequent testing, just the normal screening.

Whew, what a relief! But oh, how difficult that waiting period is. Especially coming during a job layoff and time of great stress at my own work.

Sadly, there are no magical answers to getting through it; for me doing research and exploring my fears was vital in staying sane. In the end, though, it really boiled down to gritting my teeth and focusing on everyday tasks so I didn't go crazy.

It's totally normal to be anxious while waiting. But if that anxiety gets overwhelming, consider what is effective for you to deal with the worry. Consider developing some additional tools to help.

Has anyone else gone through a similar experience? What helped you get through the waiting period?


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