Last March a week or so after my mastectomy, I had an appointment with my oncologist.  While I’d already heard from the surgeon’s office that I’d had a complete pathological response, this appointment had been set up to completely discuss my pathology and any next steps.  Because of the good pathology news, the “next steps” part was very short.  Come back every six months for a quick physical exam and a chat with her.  And that is all.

I love my oncologist, and I respect her on top of that.  But I questioned this advice.  Nothing? No scans, no blood tests, nothing?  Knowing my research background, she reassured me what I suppose I already knew deep down.  I don’t have any breast tissue left to mammogram.  There are no biomarkers associated with breast cancer that can be measured from a blood test.  And even PET/CT scans aren’t indicated in an asymptomatic patient.  She told me that the Journal of Clinical Oncology had recently published a study on this very topic.  So we discussed that I’d be back in six months, and the situations under which I should call her earlier, and I hugged her and left.  I was a little surprised to see an email from her in my inbox later that afternoon, with this article.  She’d found the article published that very month, and sent it to me to reassure me just a little bit more.  And when I admitted to being a bit of a nerd, but told her I appreciated her taking the time to send it to me, she replied simply.  “nerds are cool :)”

First a disclaimer: I’m not a medical doctor. This blog is full of personal anecdotes and sometimes a scientific perspective.  So, there’s that.

The American Cancer Society encourages women to start annual mammograms at age 40. (A newly-Canadian friend asked about this, and I believe their recommendations are a bit different.)  Because of that recommendation, insurance companies are required to cover this level of screening. Doing a little research for this post, though, I found that in 2009, the US Preventative Services Task Force actually changed that recommendation to start biennial (every two years) mammograms at age 50, but I’m guessing that because of previous legislation, insurance companies still cover yearly mammograms after 40, and so doctors still suggest it.  (Not only am I not a medical doctor, I’m not a politician, so if I’m wrong, please forgive me.) If a woman is at particularly high risk, earlier screening may be warranted.  In general if your parent were diagnosed with a  (screen-able) cancer at a young age, you should start screening when you are ten years younger than your parent was at diagnosis.  So that means based on current standards, my beautiful little girl will need to start some breast cancer screening when she’s only 25.  That really breaks my heart.

Even for women with reasonably normal risk, though, mammography is not without controversy.  There is a growing voice speaking out against screening mammography, citing data indicating while it has increased the instance of diagnosed breast cancers, it has not drastically decreased the number of breast tumors presenting at a late stage, nor has it made a significant decrease in overall mortality.  (Edited to add: a new study refutes this, indicating that mammograms really are catching tumors earlier.  Read my update to the great mammogram debate here.)  And they suggest that the number of unnecessary biopsies is not acceptable.  Now, I’ve had a diagnostic mammogram, which is like a screening mammogram on steroids.  Yes, it hurt.  But for a few seconds a few different times.  And I’ve had a few biopsies.  One of them was particularly bad– I bled a lot.  My chest was wrapped so tightly when I left that I couldn’t fully inflate my lungs, and the surgeon called me first thing the next morning because she was so worried that I might start bleeding and require emergency surgery. That was a bad biopsy. Still, I’d rather have a bad biopsy and find out that I didn’t have cancer than let cancer go undiagnosed for years.  That’s all emotional, of course.  I’m so glad I’m not the one who has to really examine the data and look at cost benefit analysis to make official recommendations and decide on insurance coverage.  But my semi-emotional, semi-rational response?  Get your mammogram for as long as your insurance covers it.

On the other side of the issue, there are people who wonder why mammograms are only covered for women over 40.  I mean, I got cancer before I was 40.  Breast cancer is still predominantly a disease of older women, and yet that doesn’t mean that young women go unaffected.  But part of the reason that younger women don’t get mammograms has to do with their biology.  Younger women have denser breasts– more breast tissue and less fatty tissue– and mammograms can’t visualize a dense breast nearly as well as a fattier breast.  So a screening test that’s not as effective in a population that’s at a much lower risk? Not recommended.  For young women at particularly high risk, those with a mutated BRCA gene, for example, an MRI can often be more informative and so is more likely to be covered by insurance.

I don’t think any woman can say the word, “mammogram,” without cringing just a little.  But one very important thing I’ve learned in the last year is that it’s SO much better to find a tumor sooner than later.

So despite my mini-rant on the pinkwashing of all kinds of stuff to sell in October, I’m all for breast cancer awareness.  But I’m thinking if you’re reading this, you’re plenty aware.  And surely you know that a woman over 40 needs a yearly mammogram.  If your doctor finds something suspicious on a mammogram, then it’s pretty easy to know what to do.  Whatever the doctor tells you.  But if you’re like me, under 40 and not yet a candidate for a mammogram, or if you’re in between mammograms and find a lump, it’s a little harder to know how to proceed.

The first time I found a lump, it was under my arm, probably twelve years ago.  I did what I would guess most women do.  I worried, let my imagination go off the deep end, and hoped that it would just go away.  After obsessing for several weeks, I made an appointment with my primary doc.  Because I figured that was the thing to do.  The lump was obvious, and being under my arm, I was sure I had breast cancer which had spread to my lymph nodes– stage 3 at the best. My doctor, on the other hand, was sure I was recovering from some sort of an infection, and that if I took some Advil, the inflamed lymph node would return to normal in four to six weeks.  After a couple of weeks, I’d had no resolution, and so I made an appointment with my OB/GYN. She, too, was sure that it was nothing, but if the Advil didn’t take care of it in another four to six weeks, she gave me the name of a breast surgeon to contact at that point. As soon as I left her office, I called the surgeon. No sense waiting any longer. A couple of weeks later, at the first available appointment, I met with the surgeon.  He, too, assured me that it was probably nothing, but wanted to be sure and sent me for an ultrasound.  An hour or so later, I was returning to the surgeon’s office with a little black and white print out– an ultrasound pic of a glob of fat in your armpit isn’t nearly as adorable as one of a teeny little baby, by the way. Turns out, they were all right, it was nothing and I was fine, but it took a trip to a breast surgeon to know for sure.

Strangely, I’m so thankful for that experience. Last year, on that Saturday, when I first felt that lump in my left breast, I knew immediately what I needed to do.  The surgeon who I’d appreciated all those years ago is no longer in the area, so I made a short list of surgeons to call Monday morning.  I was fortunate to secure an appointment for the very next day, and she did an ultrasound and aspirated the cyst right in the office.  I was out and on my way within a half hour.  And within the week, I had a diagnosis.  Waiting a few weeks and jumping through a few hoops probably wouldn’t have made a difference in my long term outcome.  But because of some previous procedures, I had an appointment with my OB/GYN and a general surgeon who sometimes does breast surgeries in the following weeks, and they both indicated that they don’t always even aspirate cysts, and they certainly don’t send the fluid to pathology. I definitely made the right call. A breast surgeon is a specialist for a reason, and I can’t think of a better first call after finding a lump.