And the Answer Is In

The phone rang promptly at 8 a.m. this morning and, still clad in my pajamas and robe, I noted the caller ID on the screen and knew the answer I’d been waiting for was on the other end of the line.

I let the phone ring a third time so I could acknowledge the moment I was in.  The next moment, when I picked up the phone, would change my future one way or the other.

Mercifully, the answer I got from the genetic counselor was the one I’d been hoping for.

Of the 17 genes tested from my blood sample, none showed a mutation related to breast cancer.  Not BRCA 1 or 2, not PALB2, not BRIP1, nor any of the remaining genes, too many to be named here, that increase the risk.

If you saw me today, you might have said that I stood a little straighter, breathed a little deeper, and felt a little lighter.  You often don’t realize how heavy a burden is until you can put it down.

 

Advertisements

Waiting for a Phone Call

 

phoneNext Thursday morning, at precisely 8 a.m., I will find out the next step in my ongoing journey in Cancerland, a place you can never really leave once you arrive. That is the time I have set aside for a phone call from the genetic counselor I met with before Christmas. This will be the third conversation I’ve had with the counselor, but this is the critical one because it determines what I do next: fall back into the web of anxiety and ongoing medical procedures, or take one very deep, free breath.

My first conversation with the genetic counselor was about 5 years ago, after I completed treatment for breast cancer. My oncologist suggested that I consider getting a genetic test to determine whether the cancer I had was related to a mutation in either of the two most popular genes that cause it. (I say “most popular” because, as geneticists are discovering, there are other genes involved in breast cancer).

On the appointed day, I drove the 90 minutes up the freeway to the counselor’s office, where we reviewed every piece of family healthy history that I could recall –which relatives had died and which were still living, the cause of death of each deceased relative, and the health conditions in the relatives still alive. I did my best to remember every story, every shred of health information I’d picked up over the years of being part of this family.

Yes, there is my grandmother who had an undefined breast cancer around 1970 that eventually recurred and took her life about 12 years later. And yes, there are various other relatives who had cancer of various types:  colon, bone, and skin. But no other instances of breast cancer and none of ovarian cancer, the two telltale markers of a genetic propensity for people like me.

This recording of my extended family’s health history took quite a bit of time that day. One advantage of having a large (nominally Catholic) family is that you’ve got lots of opportunities to spot any patterns of illness, cancer or otherwise. Among my 4 siblings, 9 aunts and uncles, and 35 cousins, my family health map was pretty clear of signs of a genetic problem.  The counselor thought it was not likely I had the bad genes. And so, I decided then not to have the test.

The next conversation with the counselor was about 3 years ago, when I learned a close relative had also been diagnosed with breast cancer. I called to determine whether that occurrence increased the likelihood of my having the genetic flaw.  But the other relative had a different type of breast cancer, at a different stage of life, and had been on hormone replacement therapy. The counselor’s answer was, once again, “not likely.”

So, you may be wondering, why the third conversation? Why ask again when the odds seem ever in my favor?

Here’s why:

The research on breast cancer is constantly evolving, and there is more and more evidence that the type of cancer I had – triple negative – is driven by genetics more often than the “garden variety” hormone-related breast cancers. Oversimplified media reports imply that most breast cancers are related to gene flaws, which is simply not true.  Only 5% to 10% of hormone-positive breast cancers relate to genetic deficiencies, but the burgeoning research on triple negative cancer shows that as many as 15% of these cases relate to genetics. Though that number is far from a majority, the possibility is great enough to make testing reasonable.

The other factor is that Myriad Genetics, the company that initially developed the genetic test for BRCA1 and BRCA2, was forced to give up its patent on these genes in 2013. This ruling by the U.S. Supreme Court meant that other companies were free to develop genetic tests for breast cancer (and Myriad could no longer get away with charging several thousand dollars for the test).

So, when my oncologist once again suggested the genetic test at my checkup back in November, I decided I’d bite the proverbial bullet and get it done, if for no other reason than to find out whether my children would have anything to worry about.

The test itself is simple – they draw blood and send it off for analysis. The results, however, may not be so simple.

First, there’s a choice of which test to take:

  1. the one that checks for only BRCA 1 and 2
  2. the one that also looks for other genes implicated in breast/ovarian cancer (PALB2, BRIP 1, and another whose name I can’t recall)
  3. or the one that finds every genetic anomaly you have (as far as they can be currently identified)

In other words, the choice is this – how much anxiety do you want to introduce into your days?

In my situation, it no longer seems enough to look for just BRCA1 and 2. But I also don’t need to worry about a bunch of genes that might not be functioning properly but aren’t causing trouble and about which I can do nothing. So I chose the second option.

Ten more days to wait for a phone call.

Guest Post: Sloppy Reporting Affects Too Much Cancer Writing

This month, I am re-posting an excellent blog post by Patricia Prijatel, the E.T. Meredith Distinguished Professor of Journalism Emeritus at Drake University in Des Moines, Iowa.  She is the author of Surviving Triple-Negative Breast Cancer, an investigation into the causes and treatments of triple-negative breast cancer (TNBC), the type of breast cancer that we both had. The book was published in 2012 and can be found here.

This article was originally posted on Patricia’s blog, Positives About Negative, on September 8, 2013. In it, she describes how it is that media reporters misinform the public about triple-negative breast cancer and the effects of that misinformation on the public’s understanding of the disease. Although she focuses specifically on TNBC, the situation she describes is rampant in the media when it comes to health and other topics, and she calls on reporters to be precise in their reporting, to represent their topic accurately, and take responsibility for their words and the effect those words have on the audience.

******************************************************************************************************************************************

Sloppy Reporting Affects Too Much Cancer Writing

By Patricia Prijatel

Reporters: Precision is especially important in health writing.  

Patients: Read carefully and learn to spot misinformation and dangerous generalizations.

I have been a journalist for 46 years, 30 of that teaching at some level. My son is a journalist, as are most of my close friends. Yet one of my biggest frustrations since my cancer diagnosis is with my own profession.

Most journalists have more of a job than they can handle right now, so I offer a few rules for them about breast cancer reporting, skewed toward information about triple-negative breast cancer (TNBC), which gets especially distorted in the media. What tripped my trigger today was a story in KGW.com, a station in Portland, Oregon, but it has been an issue with The New York Times, medical journals, blogs, and just about every form of medical or health information.

1. No one type of breast cancer is THE most aggressive. Not TNBC, not Her-2 positive, not inflammatory, all of which are repeatedly given that description in outlets large and small.

Which is THE most aggressive? Plenty of all types. Even early-stage hormone-positive breast cancer can be aggressive with the wrong mix of genetics (the BRCA genetic mutation and others that researchers are still uncovering), family history, and numerous environmental, health, and lifestyle issues (insulin resistance, weight, alcohol abuse, and so on.)

Some forms of TNBC are more lethal than some forms of hormone-positive, and less lethal than other forms. And so it is with all types and subtypes.

2.  There are successful treatments for most forms of TNBC. Yet journalists easily say things such as, in the KGW.com piece, “Women with triple negative breast cancer don’t usually respond to most traditional therapies.” I honestly appreciate that qualifier, “usually.” Neverthless, the statement is inaccurate. It is true that TNBC tumors are not responsive to estrogen-altering drugs such as tamoxifen and Arimidex because the disease is not fueled by estrogen.

But TNBC responds well to typical chemotherapy—better than other forms of cancer respond, in fact. So women with TNBC usually get their drugs in the form of chemo, either before or right after surgery, rather than in five-year doses, as is the case with patients with estrogen-positive disease.

Treatment for metastatic TNBC—stage IV—remains difficult, and it is true that many of those patients do not respond to current therapies. But fewer than 10 percent of patients with TNBC have stage IV, which means that 90 percent may respond well to treatment.

So the helpful qualifier in that statement would be “Metastatic TNBC does not usually respond well to most traditional therapies.”

3. Readers internalize your words. Last week I talked to a woman who had been given an excellent prognosis from her doctor, yet still thought her outlook was grim because she read a news release saying TNBC was lethal. Communications research demonstrates this phenomenon—we’re more likely to consider media reality as the real deal instead of our own lives. Everybody lives in cool apartments and houses on TV, so you believe that to be true in real life, despite the fact that most of your friends have standard-issue digs with furnishings from WalMart. Same way with health issues. Ominous news in the media feels more accurate than your doc’s more measured approach.

4. The generalizations you use can loop around to negatively affect your readers’ and listeners’ health. I recently talked to a highly educated woman with a medical background who thought that it did not matter that her TNBC was stage 1. “Stage doesn’t matter with this disease, does it?” she asked. She was ready to give up. Of course stage matters. Stage 1 TNBC is much less aggressive than stage 4 of anything else. The great majority of women with stage 1 TNBC survive—as many as 90 percent in some studies.

Still, because she thought TNBC was automatically aggressive, she was giving up, and few battles in health or otherwise are won by giving up.

So do your research and don’t lump early stage with late stage disease. The research reported on by KGW.com was on the drug PLX2297, which may be effective against TNBC. I cannot find the research the reporter alludes to, but I did find a clinical trial for PLX3397 in connection with Eribulin for metastatic TNBC.  Metastatic is late stage. Metastatic is a much different disease from non-metastatic. Know the difference and include it in your story. It actually only takes a word.

5. Remember your vocabulary. Lethal means deadly. So if you tell me my disease is lethal, you are telling me it will kill me. Yet most women with breast cancer, including TNBC, live happy lives long after diagnosis. I have talked to a great many of them. They compete in triathlons, have babies, tend their grandchildren, get remarried, buy cottages by the ocean.

6. Get your stats straight or don’t use them. Just as all breast cancers are different, so are their prognoses. Saying that TNBC patients have “another five to eight years to live,” as KGW.com reported, is outrageous. There is no research to back this up. Most recurrences of TNBC come in the first three years, but a host of studies show that the majority of women with the disease make that marker easily and live disease-free for decades. I have interviewed countless women who are 20 years past this diagnosis. And, sadly, I have lost friends before the three-year mark. There is no one prognosis, but the reality is that most women survive beyond “five to eight” years. Don’t tell readers they’ll likely be dead in five years. Really, I have to say that?

7.  Never settle for a one-source story. This is pretty basic and is true of all journalism, but especially for health. That source could be wrong, inarticulate, promoting an agenda, or speaking in medical shorthand that the writer’s colleagues might comprehend but which may confuse or frighten their patients. Researchers naturally want to show the importance of their findings and, in so doing, could mischaracterize the seriousness of a disease. This information is too important to let one individual set the tone. At least link to organizations with a broader perspective. Numerous sites exist for accurate breast cancer information, including breastcancer.org, the Triple-Negative Breast Cancer Foundation, Living Beyond Breast Cancer, and of course, this blog.

Read more about TNBC in the book, Surviving Triple-Negative Breast Cancer.

Reprieve?

In the mail a few days ago came the report of the results from my recent MRI. Along with the mammogram, the MRI is one of the ways the medical folks keep an eye on me after my cancer treatment. I am more than 3 years past the day I received the breast cancer diagnosis, and 2-and-a-half years past the end of chemotherapy. That’s when the countdown, for me, to that critical 3- and then 5-year mark began.

The MRI may seem like overkill, especially with its added expense and the dogged determination of the medical community to promote mammograms. But it’s necessary for me because the mammogram tends to fail those of us who have dense breast tissue — a factor that is finally starting to show up on lists of risks for breast cancer. Besides the annual mammogram and MRI, I visit my oncologist every 6 months for blood tests and a review of my status. My last 6-month check-up, back in April, showed only some lingering whacked-out red blood cells.

At that time, I had developed a new pain in my right abdomen, one that had hung around for a few weeks, consequently triggering my internal alarm. The pain had passed the 2-week mark I had been coached to observe. And so I followed the oncologist’s suggestion to have an abdominal ultrasound, which fortunately, like the mammogram and MRI, showed nothing wrong. (Cancer, the “gift” that can keep on giving — you just don’t know when.)

Although my body seems to be recovering well, is actually intent on reclaiming its good health, I am still struggling with the mental, emotional,and spiritual recovery. My body has its own mind. The mind itself needs to catch up.

The nurse had already called me to report the MRI results, but that wasn’t enough. I needed to see the full report in print on the page in my hand.  And in that small space of silence after reading the results, when I let out the breath I had been  holding, a tiny thought crept in. A new and, for me, startling thought.

It just might be possible to be cured of this disease.

The body will know when that happens. The mind might never be sure.

Why I Don’t Race, Run, Walk, Climb, Romp, Stomp or Even Crawl for the Cure

Photo credit: Wikipedia

Fundraisers for cancer. They’re everywhere. And their variety is ever-increasing. Racing, running, walking. Now you can even don your snowshoes and make a contribution to breast cancer research.

But I have attended none of these events.

It’s not that I don’t recognize their importance. I heartily support – in spirit and with dollars — anyone who chooses to participate, on behalf of me or anyone else. There’s a lot of money raised at these events and that money can one day, I hope, help the scientists eradicate cancer for good.

The Susan G Komen Foundation, the best-known organization supporting research for breast cancer, sponsors many of these events. Each year, thousands of people raise millions of dollars for the Foundation, money that is put to work to educate and screen women and fund research by scientists. Some even goes to the Triple-Negative Breast Cancer Foundation, the group working on the type of breast cancer I had.

Recently, the Komen Foundation has drawn fire for its Planned Parenthood fiasco, but that’s not its only problem. Others are described in this article and this blog post. Although the Komen Foundation started out with the best intentions, like many other organizations, the more it grew, the more money involved, the more political it has become. I stand with those who have said there should be no politics in women’s health – ANY aspect of women’s health.

But that’s not why I don’t race.

People who have attended these fundraisers – whether sponsored by Komen or another organization — tell me that the vibe at these events is heartening, the energy amazing. Men, women, children. A solemn but celebratory atmosphere full of that “can-do” American spirit. A shared experience. A way of mourning those whose lives were ended by cancer.  A step toward healing.

Initially, I chose not to participate because I believed doing so would actually prolong my adjustment to life with and after cancer. Even now, when I hear of someone else who’s been diagnosed, it’s hard to abide by that mantra, “Her story is not my story,” and the residue of fear from my experience is resurrected, at least temporarily.

I will never deny that cancer has affected my life, but it is not the only thing that does, and I do not want to be defined solely by that experience any more than I wish to be defined by any other life-changing experience. Cancer has perhaps changed who I am but it is not me. I am, first of all, an individual, with a particular set of habits and talents, not “the one who had cancer.”

But back to those races.

Noble as all these events are, and as necessary as a cure is, they are based on the wrong premise. Running for the cure implies an underlying acceptance of cancer, and that acceptance has now progressed even to the expectation of cancer, so that we focus our attention on cancer as a rite of passage instead of recognizing the causes and acting to eradicate them.

There’s also the problem of corporate involvement and funding of these events (Kentucky Fried Chicken, anyone?), and the constant flow of pink products – T-shirts, water bottles, banners, ribbons, and even pool cues. These sponsorships and products, also have their underlying message, much like the radio ad I mentioned in an earlier post.

Corporations make a lot of money off these events, either in direct merchandise sales or as a tax write-off for sponsoring the events. Want to fight breast cancer? Buy a car! Cancer is a commodity to be bought and sold.

The larger problem I have with these events is the same problem I see with schools having bake sales. If you have to have volunteer organizations raise money for the work a government-funded organization is supposed to be doing anyway, something is very wrong. If our national politics and priorities were straight — funding more health care and fewer missiles — there would be plenty of money for the National Institutes of Health, the American Cancer Society, and the National Cancer Institute to actually find a way to wipe out cancer. And if we stopped subsidizing and bailing out the corporations that befoul our environment, foundations like Susan G Komen would be unnecessary.

When that day comes, when organizations start scheduling a race to obliterate the causes of cancer, I’ll be the first to lace up my running shoes.

Golden Sneakers by Dolce & Gabbana, Italy.

These Genes Don’t Fit

A section of DNA; the sequence of the plate-li...

Image via Wikipedia

Last month, I decided to take the plunge and drive north to Seattle to speak with a genetic counselor to determine whether there’s any likelihood that I developed breast cancer as a result of a malfunction of my genes.

The current numbers from the experts say that only 5% to 10% of women who develop breast cancer have a family history that can be attributed to a genetic defect passed down through relatives (either male or female). So, despite what the various media might lead you to think, most women who develop breast cancer do not have a genetic defect, at least not one that we can yet identify.

Still, some of the recent research about triple-negative cancer raises the question of a greater likelihood of a genetic defect (most commonly a mutation of BRCA1), and so I again had to consider whether to sign up for genetic testing.  Both my oncologist and the naturopath said it was unlikely and they didn’t see the need to progress to testing, but then came a report from the New England Journal of Medicine, which charted a higher rate of genetic defects among those of us with triple-negative or basal types of breast cancer. Since I do have a son and a daughter, each of whom might be affected if I have such a mutation, I had to lay the issue to rest in my own mind.  (And as a couple of people put it to me, “The mutation has to start somewhere!”)

So I asked the oncologist to refer me to the counselor at the University of Washington, home of the highly regarded Fred Hutchinson Cancer Center, one of the foremost cancer research centers in the country.

And what I learned, once again, is that life is rarely a matter of a simple yes or no. Yes, genetic defects can play a role, but that role is much more complex that simply saying a defect exists or doesn’t.  Science is amazing in what it has uncovered about human life, but when it comes to issues like genetics, there are more unknowns than facts. Even my astute daughter figured out that, should I have a genetic mutation, her chance of developing breast cancer is only 50-50.  (And who says they don’t teach substance in schools these days?  She studied the basics of Mendelian genetics and chemotherapy in science last year.)

As I mentioned in earlier posts, I have the great benefit of coming from a large family – 8 aunts and uncles, 35 first cousins – and I know much of the history of the illnesses passed down among these relatives. With the exception of my maternal grandmother, there are absolutely no other cases of breast cancer in that extended family.  But that fact is not enough on its own to rule out a hereditary cause because some syndromes leading to breast cancer are associated, for example, with sarcomas and leukemia, or digestive and thyroid tumors. As this information from the American Cancer Society shows, the various risk factors and genetic influences — BRCA 1 and 2, ATM, p53, CHEK2, PTEN — are much too complex to pin down in any single case.

After carefully recording the details of medical problems in my extended family, the genetic counselor I spoke with determined that the chance of my having a genetic defect is only about 5%. That number doesn’t explain why I got the disease, but it goes a long way toward making me feel more optimistic for my children’s futures.

This is a set of genes I’m quite happy don’t fit.

I Say I Want a Resolution

One year ago, I finished chemotherapy. According to the oncologist, that’s when the countdown (count up?) of survivorship begins. Not with diagnosis. Not with surgery. But the end of chemo. So this has been the first year of my survivorship.

With that year comes a new look

And a new perspective.

I am – like most of us – looking back to make resolutions going forward. I’ve spent the year immersed in healing techniques on this journey toward wellness: colorful stones and other good health charms, massage, Reiki, acupuncture, therapies involving sound and mind, prayer, yoga and many other approaches.

And this is how it all shakes out for me (your mileage may vary):

I don’t know if the stones and charms make any difference, but it’s comforting to have them on hand (or in pocket).

Of the various mind/body therapies, craniosacral, yoga, sound healing, and what little meditation or breath work I’m able to do seem to help most. Through these I’ve recognized the essential importance of working out stress through the body and voice (in singing and chanting, not just talking). Talk therapy is good, but limited, and the body has its own energy that dispels, perhaps more effectively, the tensions of the mind and spirit.

I wouldn’t say my body actually talks to me (though I did hear an internal voice saying “I’m in trouble” shortly before the lump appeared). But I can now read its signals better and identify when it feels clear. The yoga and sound therapy in particular have changed my perspective. I see myself less as a single, solitary being holding on to concerns and events and more a spirit connected to the flow of life.

This change in perspective is difficult to describe, but I think now in terms of letting events and worries flow through me instead of getting stuck in me. It’s that process of “letting go” that we hear about, but for me was only an intellectual concept before.

So that’s looking back.

What resolutions take me forward?

This year, I’m limiting it to one: Mindfulness.

Mindfulness appears in Buddhism as the concept of being in the “ever-present now.” In his book, A New Earth, Eckhart Tolle gives this example:

If your current task is to look up a number in the phone book, that is all you give your attention to – looking up that number. It is the only thing you are meant to do, your sole purpose at that time. If you give your full attention to looking up that number, then you are truly alive in that moment.

Strangely, this idea actually appeared in the practical, Midwest American advice my dad used to give me as a child: Pay attention to what you’re doing! (I suspect he might have occasionally said that as a warning, or in exasperation. I was a child, after all.)

Who knew there were Buddhists disguised as accountants in Ohio in the 1960s?

Richard Berger, M.D., at the University of Washington, covered this point in his presentation at a cancer seminar I attended last spring. As he put it, mindfulness is “paying attention, on purpose, in the present moment, non-judgmentally.” Good concepts for anyone, not just cancer patients. Mindfulness enables you to feel like you’re living, not just waiting for something to come or watching your life slip away, wondering if it has any meaning.

I “get” the concept, but am not very good at it yet. Too many years of learning to worry and being “proactive,” as they say in the business world. It’s only recently that I’ve really understood that worrying is a waste of time (and an addiction). It’s unavoidable, sure, but you can get the worry under control. And you do that by being mindful.

Nothing frightening happens when you give up the worry and focus on the moment you’re in. When I’m able to do it, I find relief – space, lightness, breath — it goes by many names.

And there, I think, lies the secret of the fountain of youth.

Prolong your life by being present in it.

Be mindful.

A drop of water frozen by flash

Image via Wikipedia