Signposts in the War Zone

La jungle de Langkawi

Image via Wikipedia

When describing the emotional effects of getting a cancer diagnosis, Michael Lerner of the Commonweal Cancer Help Program put it this way: “Receiving a cancer diagnosis is like a soldier being dropped into a jungle war zone without a map, compass or training.”

An apt description.

Except that a soldier at least has weapons.

Thankfully, in the jungle war zone of cancer are guides, who appear in various forms: the oncologists and radiation specialists who direct your treatment, the infusion nurses who explain what will happen along the way, fellow patients and cancer survivors who can tell you their stories and really understand what you might be experiencing. They have cleared your path through the jungle.

But also along that path are a variety of signposts, some helpful, some not, and it is often only in hindsight that the value of those signposts is clear.

Unfortunately, some of the signs that the experts post on the jungle path point the wrong way.  For example, a recent report from the Yale Cancer Center determined that between 10% and 20% of breast cancers classified as estrogen-receptor-negative might actually be positive. In an already chaotic landscape full of noise and confusion, such a misdiagnosis only heightens your fear and sense of helplessness, and can add a hefty measure of anger that you carry with you as you retreat to find the right path.

At other times, a signpost might be erected only to be taken down later on. Earlier this year, the FDA revoked its approval of Avastin for patients with breast cancer, saying that it was not safe or effective.  Avastin is a chemotherapy drug used to treat a variety of cancers, but according to the FDA, the risk-benefit ratio for those with breast cancer doesn’t merit use of the drug. So those who had luck in following this signpost no longer are able to, and that includes the women with triple-negative cancer who did benefit from its use. This dilemma, however, applies only to women on the jungle path in the U.S.  Avastin is still approved for use in breast cancer patients in 84 other countries.

Sometimes, a signpost is erected too soon and serves only to provoke anxiety. A report from the UCLA Medical Center links high levels of stress to the spread of cancer. Besides inducing more stress about stress, the additional irony is that this signpost is only for mice as yet, not humans. So too for the signposts about the effects of ACE inhibitors and beta-blockers and chondroitin sulfate.

There’s something to be said for posting signs of hope along the path, as these reports do with their results. But with that hope comes the risk of disappointment when the findings of further studies serve to dismantle these signposts.

And always, along any path, some signposts might even be missed.  Back in June, a briefing in the journal Cancer reported that almost half of women with advanced breast cancer over the age of 65 “are not receiving post-mastectomy radiation treatment, despite the publication of major guidelines recommending the therapy.”

On my particular path through the jungle, two signposts directed the type and frequency of my chemotherapy.  At the time I underwent chemo, the largest signpost read ACT – Adriamycin, Cytoxan, and Taxol – the only chemo cocktail available for those of us with triple-negative disease.  By the time I had chemotherapy, however, a new signpost had been added to this one, and it read “dose-dense therapy,” a different way of administering the drugs.  Instead of receiving one large dose of drugs every 3 weeks, as is customary for many types of cancer, I received a smaller dose every week for 24 weeks.  The premise of this “metronomic” dosing is that the cancer would have less of a chance to regenerate with a steadier dose of drugs and the side effects would be minimized. I followed these signposts because my guide, my oncologist, pointed me that way.

In hindsight, it’s been a relief to find that these two signposts did indeed have merit.  A study of Adriamycin and Cytoxan, from a group of drugs called anthracyclines, used in conjunction with a taxane drug are an effective treatment for triple-negative disease, but not for other types of breast cancer. The review noted that the combination works best in adjuvant treatment—that is, chemo after surgery (rather than before) – the approach the doctors used for me. Another study determined that dose-dense chemotherapy is most effective for hormone-negative breast cancer, with better overall and disease-free survival. These studies validated the merit of two of the signposts on my path. With a sigh of relief, I can walk a little taller on the road.

Those of us affected by cancer, either directly or indirectly, will always be in the jungle because cancer and the treatments for it are always changing, always confusing, and it’s difficult to get your bearings. We note the signposts and choose the direction, our only weapons the health care workers who point the way and our own stamina and determination.

Wegweiser im Bramwald

Image via Wikipedia

 

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Puzzle Pieces

I just caught the opening of the Seattle Seahawks/Chicago Bears playoff football game. I’ve lived near or in both cities, but I’m only one of those fair-weather fans. Out here, we’re all stunned that the Hawks have gotten as far as they have this year. But after I saw the Bud Light ad, with the guys partying in the oil change shop, I figured I’d be better off writing.

This is a column of updates and more pieces to add to the triple-negative breast cancer puzzle.

First, the personal updates:

I had my last 3-month check-up back in November and everything seems to be fine. That abdominal pain I was having turned out to be – besides another trip on the worry train – just a bladder infection. The naturopath has again tweaked the supplements (add vitamin B, drop the CoQ10). At my appointment with him, we discussed our preferences for martini recipes. He prefers gin with a twist AND an olive. Rumor has it that he’s also been known to eat a Pop Tart on occasion. It’s good to know he’s human.

The chemotherapy port was removed before Christmas, and it’s nice not to have that lump on my chest anymore, even if I had to give up a day of skiing to recover properly. The sacrifice let me finish grading essays for my classes, and I am back to teaching again as of this week. We celebrated my daughter’s 14th birthday, Christmas, and New Year’s, and I managed to trigger a mistrial during jury duty in November, all because of some M&Ms. (More on that story later on my other blog, Firefly.)

Here are the news updates from the Breast Cancer Symposium in San Antonio in December:

  • PARP inhibitors still seem promising in treating patients with metastatic triple-negative disease, and there’s more and more evidence that hormone replacement therapy is tied to the development of breast cancer.
  • Obesity negatively affects survival for those with hormone positive tumors, but not for hormone-negative. (Guess I can start gaining weight now.)
  • In the past 10 years, cases of triple-negative disease have almost doubled in women in Brazil while cases of hormone-positive cancer have decreased, though no one knows why.
  • The FDA has pulled the plug on the use of Avastin – a chemotherapy drug – for breast cancer patients, but Avastin shows greater promise in those with triple negative disease. Avastin is also used in patients with other types of cancer.

 

And now the puzzle pieces.

A recent article in the New England Journal of Medicine charted the overlap between triple-negative, basal and BRCA-1 breast cancers. The authors found that triple-negative tumors can also be basal, but aren’t always. They are also often associated with the genetic defect of BRCA-1, but not always. BRCA-1 (often pronounced Brack-ah 1) is the more serious of the two types of genetic defects found in breast cancer (the other being BRCA-2), and can be implicated in ovarian cancer as well. This article got me wondering whether to look into genetic testing for my situation.

As I mentioned many posts ago, I don’t have much of a family history of breast cancer. (Despite what the media lead you to believe, it’s only about 15% of women who do have that family history.)  It appeared only in my maternal grandmother – somewhere back around 1970, long after she went into menopause.  Like most women at that time, she had a total mastectomy and doctors didn’t know anything about hormone receptivity.  She did not have chemotherapy or radiation and lived another dozen years till her death at the age of 85. This illness has not shown up in any of my close relatives. Given that I come from a Catholic family, there’s a lot of relatives (8 aunts/uncles and about 35 first cousins). The recent research shows, though, that it’s not just a pattern of breast cancer that gives away the genetic problem, but a pattern of prostate cancer too.

A misconception is that breast cancer passes through the mother’s side of a family, but this article from Parade magazine shows that the genetic defect often passes through the male line, showing up as either breast cancer (1970 new cases a year) or prostate cancer. A friend of mine followed her instincts when she received her diagnosis at the age of 41. The docs told her there didn’t seem to be a genetic component, but once she investigated she discovered that her paternal grandfather had died of prostate cancer in his 50s. Not only did the gene pass through the male line to her, but it skipped a generation too.

As screening methods evolve – not just for cancer but any serious health issue — it becomes increasingly important to have as full a picture of your family history as possible. There are a number of online tools you can use to chart that history, like this one from the Surgeon General of the U.S.

And finally, there’s the puzzle of light:

An interview in January’s issue of The Sun magazine spotlights Andrew Weil, M.D. Those of you familiar with his work know that he embraces alternative methods of healing and is based at the University of Arizona. In the interview, he comments on the influence of light on cancer: “One detrimental influence on our sleep is our ability to light up the night, which is a significant change in our environment over the past hundred years. There’s a body of literature suggesting that exposure to light at night, even briefly, greatly increases cancer risk, especially risk of breast cancer in women. Women who are blind from birth have very low rates of breast cancer. Women who work night shifts have high rates of breast cancer.” He recommends that, if you need light during the night, use a red Christmas tree bulb, since light at the red end of the spectrum is safest.

If you’re one of those who hasn’t yet put away the Christmas lights, here’s your excuse.