Tuesday, October 20, 2015

Day 1,865: ACS' Mammogram Guidelines

This post will be different than most that I write. I'm just providing an explanation and opinion on the new guidelines put forth by the American Cancer Society on mammogram screenings for women.

The short story is that ACS has raised the recommended age for first mammograms from 40 to 45 for women with average breast cancer risk (emphasis mine). At age 55, such women can move from annual mammograms to mammograms every two years. ACS has said that women aged 40-44 should be offered mammograms if they ask (I honestly do not understand how that would work with current insurance company rules).

A lot of people are up in arms about these new recommendations, especially women with breast cancer that was diagnosed prior to age 40. It is an understandable reaction.

I just don't agree with it.

Not that anyone asked me, but I agree with the ACS recommendations on mammograms (I don't agree with the recommendations for clinical breast exams--more on that later). Women with no family history or high risk for breast cancer have never been offered mammograms before age 40 as a matter of course. There are exceptions, of course. However, most of us who were diagnosed before age 40 found the cancer ourselves. We felt a lump or noticed a change in the skin or nipple or realized something was wrong. I found my cancer both times. I had a clean mammogram in May of 2013, and a little more than a month later I found the lump that would lead to my second diagnosis in July 2013. In fact, when the radiologist was attempting to confirm my cancer, she could not find the tumor using mammography--even though she had placed a metal clip inside my breast at the tumor site and was specifically looking for it.

There are a few lessons here that are not just me talking about my experience and expecting it to apply to other women.

One lesson is that ACS is absolutely NOT saying that women who find suspicious masses, confirmed by a doctor, will be denied mammograms if they are under age 40. The fact is that most mammograms offered to young women are done to confirm what is already suspected, not to diagnose cancer that was undetected. There are exceptions--I know that. For example, women who are BRCA positive would be considered exceptions, I would assume, as would women with strong family history of breast cancer. But the new guidelines are for women with NORMAL RISK of breast cancer. And no one is suggesting that mammography would not be used to diagnose women like me--I was a woman with no high risk of breast cancer for the first 34 years of her life. I was years away from my first scheduled mammogram. But when suspicions arose, I underwent a battery of tests, including mammography. ACS is not suggesting a different course of action.

Another lesson is that mammograms are simply poor screening tools for young women. They do not work well for us, and this is a big part of the reason for the change in policy. They do not work well for anyone with dense breast tissue. They carry risks and have high rates of false positives (or, in my case--false negatives). Ultrasound was much more effective for me, both times. I was not even offered a mammogram the first time, as I was still nursing and the radiation would prove harmful to the baby. Once the ultrasound showed three perfect round tumors, however, I did go into mammography. Hell, they gave me a little of everything: 3d mammogram, ultrasound, regular mammo...

Finally, women with high risk of breast cancer have entirely different recommendations. My daughter is considered high risk, because of me. The current recommendation is that she should begin to have mammograms when she is ten years younger than I was at diagnosis. So, most women will begin to have mammograms at age 45, and Lenny will have hers...at age 24. I hate that idea. I hate the years of radiation that my misfortune has given her. I hate the worry she will have at a young age, when she should just be enjoying her youth. I hate the idea of them finding anything that would lead to treatment before she has had a chance to have a family, enjoy her youthful sexuality, or just live her damn life like everyone else.

So the bottom line is: women at high risk of breast cancer are not going to be denied screening tools because of these recommendations. (For more on this, see the Young Survival Coalition's response to the ACS recommendations).

Barring information about genetics, family history, or suspicious masses, no one really knows who is high risk.

Moreover, these screening tools are not the best line of defense for young women. More work needs to be done in that area.

I admit that I do not understand why ACS would recommend the end of clinical breast exams. That doesn't make sense to me. Such exams are not high risk, do not expose anyone to radiation...I suppose they might not be objective or entirely accurate, but they seem a hell of a lot better than nothing for very little cost and risk. My gyne confirmed my lumps through a CBE and won't allow me out of his sight without extensive breast exams. My oncologist does them too.

I think the uproar over these changing guidelines reflects the general misunderstanding about the usefulness of mammograms. Mammograms are touted as "prevention," as the "early detection" that will save your life. Mammograms prevent nothing. They are DETECTION tools. They can only tell you, possibly, if you already have cancer. They cannot predict your risk or the course your existing cancer will take. There are a lot of ways to detect breast cancer--CBEs being a big one.

But there is no test that can prevent your cancer from moving from early stage to late stage, or from being there in the first place. Breast cancer organizations such as Komen are partially responsible for this misinformation. Their focus is so clearly on "early detection" that it ignores facts such as the 34% of women with early stage TNBC whose cancer will metastacize NO MATTER WHAT THEY DO. The dark underbelly of Pinktober and breast cancer awareness campaigns is that people have been led to believe that mammograms save women's lives--when they weren't even designed to save women's lives.

That's what surgery, chemo, radiation, immunotherapy, hormone-blocking targeted drugs, and other solutions do.

But I don't know why I expect this to be any different than any of the other misinformation out there, like that bilateral mastectomies will help save your life or that more aggressive cancers (such as HER2+ or TNBC) require mastectomy for efficacy (genetic factors, in addition to size and invasiveness of tumors, are what matter for such surgery decisions, not tumor type) or that putting a smile on your face will prolong your life or that avoiding stress will stop cancer in its tracks. I mean, I was once profiled in HuffPo for having a lumpectomy (as if that was weird or something) and comments on the article included things such as "if she really loved her children, she wouldn't have worried so much about her breasts."

SCIENCE, PEOPLE. Also--what an asshole. Someone actually said that I didn't love my children because I didn't needlessly amputate body parts and because I chose a surgery and treatement plan that GAVE ME THE LOWEST RISK OF RECURRENCE.

But I digress. Here's something to chew on. I have had an extremely aggressive form of breast cancer two different times. And yet, here I am, at age 40--back to screening (fewer pictures and angles) mammograms as opposed to diagnostics. I am being treated like a woman with average risk of cancer (from the old guidelines) and I am a two time cancer patient. I see my oncologist every six months. The man still does an extensive CBE (I assume--I don't see him until November) but no other tests. I get no bloodwork, no scans, no tumor marker tests--nothing. This has always been the case. The reason is that these tests are notoriously inaccurate and prone to false positives. As my oncologist says "if we look for something, we will find something, and then we have to treat you." I should note that my oncologist is one of the top breast oncs in the world, and he helps make the recommendations that are used for treatment at the national level--he is not a crackpot by any means. So, when my full body scan in 2013 showed nodules in my lungs, they did nothing. Because EVERYONE IN THE MIDWEST has nodules in their lungs from pollution. Barring other symptoms, there's nothing to do. He doesn't do these tests because the guidelines are against it, they cause needless worry and stress, and for this reason:

There's not a damn thing anyone can do to turn back the clock on metastatic breast cancer today.

This is not Lance Armstrong's stage 4 testicular cancer, folks. No one is getting cured. Once breast cancer has spread to a distant part of the body, no test or screening in the world will enable the person getting that news to ever not be a person with breast cancer--EVER--for the rest of her life.

That is the part that needs to change. Perhaps less of a focus on mammograms will free up resources to actually search for a cure.

Sunday, October 11, 2015

Day 1, 855: Flipping the Script

I've flipped the script on October 11.

Thirty one October 11ths ago was a burnt sienna Crayola day of anticipation and near death. It was the defining day of my childhood; my body bears the trauma of that day still. There is no one who knew me then who doesn't remember.

Last October 11th was the day I would have dreamed of thirty years prior if I had been old enough to imagine my adult life with any accuracy. An idea for an alternative to an end-of-chemo celebration exploded into something else entirely as we celebrated ten years of marriage. Ten years before, we had walked together, down a hallway in a community development corporation, wearing a funeral suit and a brown dress. This time he waited for me in his tux at the bottom of the hill we own, somehow, ourselves, and my brother escorted me down our driveway while leaves fell on my white vneck gown, half of my post-mastectomy sternum drawn down to skin and bone. Two children waited with my husband; somehow, they were ours too, and yet they were so much themselves, as they have always been.

I took one of the only meaningful anniversaries in my life and turned it into something else. It took me thirty years, but I did it.

October is supposed to mean something specific for women like me. I choose not to acknowledge that, however. I recognize absolutely nothing of myself or my experience in this earth toned month that so many are trying to dye pink. I just have too many other things to think of in October.

One of the hazards of writing is the tendency to write about the seemingly big things. But everything big is just the hope or loss of a thousand little things. October 11 is neither the day I almost died or the day I celebrated the surprise of my continued life with my family and friends. It's a day that rolls around every year, in the middle of the most beautiful and fickle month of our midwestern calendar.

October 11 is this: the last day of eighty degrees for who knows how long, a day so perfect you miss it while it's here. And on a picturesque street of mansions in a strangely bucolic neighborhood of a violent and corrupt city, a smallish woman looks over her shoulder as she trespasses on lawns, kicking leaves and crunching them loudly under her faded maroon Doc Martens. Some teenage boys driving by yell at her and she doesn't know or care why or what they are saying because she will continue kicking her long legs in the air because she can, she can, she can.

October 11 is this: that same woman texting her husband in embarrassment and amazement, to find out how to unlock the gas cap on her own car. In a year and a half of owning the only new car she has ever had, her husband has filled the tank every single time. She doesn't know how this has happened, any more than she understands why her husband has to text her ten times from the grocery store. But who is she kidding? She knows what this means, and it isn't anything to do with men and women and the roles they play or rebel against. The text she sends makes them both laugh but its meaning hits her hard: this is what happens when two people live one life. Little things fall to the other and you don't even notice. She suddenly sees grief everywhere, as she always has done, grief in the gas fumes of the future when she doesn't text anyone, grief in the produce aisle when he shops from a list he has written himself.

October 11 is this: two children walking to the park alone, playing games they communicate in a secret language, never to know if their seemingly misplaced closeness is natural or an outcome of the fear and adult knowing they've weathered together years before life should have handed them those lessons.

Today, the house and yard are quiet but everyone is nearby. A woman drops a football in the lawn a man has just mowed. The trees can't decide between green and orange. The air is warmer than it was in early July. Right now, on this day, cells and legs cooperate, hearts beat as they should and the air feels delicious as we breathe it in effortlessly, miraculously, on another October 11 we are all somehow here to witness, together, again.