Chain Reaction

chainlinkIf you’re unfortunate enough to have to go through chemotherapy, the oncologists and nurses who support you through the ordeal are pretty good about telling you what to expect. The infusion nurses, especially, know the realities of chemotherapy and are wonderful supports.

Hair loss, nausea, fatigue.  The list of side effects can be pretty lengthy.

They may even tell you how each chemical dripped into your veins can affect different parts of your body. Doxorubicin is hard on the heart and taxol, if it doesn’t cause an immediate and deadly allergic reaction, can lead to neuropathy, which appears as tingling, numbness, or even pain in fingers and toes. Fortunately (pain-free fingers crossed), I seem to have dodged those particular problems.

In general, the reports tracking the side effects of chemotherapy stop at about the same time the clock stops on tracking survival after cancer – 5 years. I haven’t yet investigated why 5 years is the magic interval, but if patients make it to that point without a recurrence of cancer, they are usually considered to be in long-term remission and the oncologists turn their attention to those just entering CancerLand. Follow-up visits to the oncologist might cease entirely, and your health care reverts to your internist or primary care physician.

But that doesn’t mean that cancer, or its aftermath, is done with you. The reason we speak of remission, rather than cure, is that, for many cancers, there’s no guarantee you’re cured until you die of something else. And even if you are cured, remnants of the experience – like ongoing neuropathy or fatigue – might remain. New problems might also arise many years later in a maddening, slow-motion chain reaction.

That’s where I find myself now, addressing the next link in the chain. The first links were the tightness in the chest muscles from surgery and radiation, the random pains that still shoot through the scars, and the numbness under my left arm. Then came the transient bouts of lymphedema in the arm where numerous lymph nodes were removed. And now, a diagnosis of osteoporosis, which will likely lead to the ingestion of more chemicals, this time to bolster the bones.

To be honest , I can’t blame it all on the cancer and treatment as I have several of the risk factors for bone thinning – Caucasian background, family history, and low body weight. But I’ve also been careful to follow the guidelines about weight-bearing exercise, calcium and vitamin D intake, and a healthful diet. So how is it that, instead of maintaining or increasing bone since my first bone-density test 5 years ago, I’ve seen a decrease?

There’s only one answer to that question – chemotherapy.

As it turns out, there’s a bit of research showing a connection between chemotherapy and osteoporosis. But except for my naturopath’s oblique mention of a potential “degenerative process,” I heard nothing about what chemo can do to bones.

Knowing about that connection wouldn’t have changed my mind about treatment. And I know other cancer survivors who are dealing with much more than I am, for a much longer time. We would all choose our same treatments again because that’s what saved our lives. Like any other major life decision, you never really know what it is you are choosing. There’s never a guarantee of how things will turn out.

But every time a new problem comes to light, one that can be directly related to the cancer or the treatment, we cancer patients stumble and sag, carried back to the days we hoped we’d gotten beyond, when the darkness was constantly visible, not a shadow in a far-off corner.

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The Olympics: A Training Ground for Cancer?

1996 Summer Olympics

1996 Summer Olympics (Photo credit: Wikipedia)

‘Tis the season for sports (here in the U.S., it’s ALWAYS the season for sports), and the Olympics are fascinating us as much as they ever do.  The races, the stories of the athletes, even the silly discussion about The Flying Squirrel’s hair.  Eyes around the globe are focused on screens of all sizes — iGadgets, laptops, desktops.  Some (those of us in the “old school”) even wait for the evening NBC broadcast, despite knowing the outcomes of the various competitions.

But once these five rings disappear and the athletes pack up their medals and head for the airport, what happens next?

Here’s what happened to Shannon Miller, one of the gold medal winners from the 1996 Olympics, and one of the “Magnificent Seven.” The link to this site was sent to me by a reader of my posts, and I told her I’d do the favor of posting it here. It’s a short interview with Miller – won’t take but a couple minutes to read. But its message should resonate with you for a long time. A gold-medal Olympic athlete (so damn young and so very healthy!) compares her experience with ovarian cancer to her training for the Olympics.

Here’s to all of us, athlete or otherwise, who have gone the distance with cancer — all of us worthy of our own gold medal.

Taking a Detour: The Making of a Hypochondriac

Pukkelpop 2006 tent camp.

Image via Wikipedia

Day 1:

So I’m tooling along Cancer Road. Don’t want to be here, but at least I’m past the multicar pile-up of surgery, chemo and radiation, and I’m picking up speed. Hope the rest of my trip is event-less. Man, it’s hard to drive with your fingers crossed.

Switching lanes now and – oops – wait! How did I end up on this ramp? I’m not supposed to get off this highway for another year or so, when I get to the exit marked “Dramatically Decreased Chance of Recurrence.”

Wait — what’s that brown sign? Looks like the ones that point to scenic attractions. Maybe a welcome sign?

Well, maybe not.

Welcome to Camp Hypochondria

No pets allowed

Aw, rats.

Somebody warned me about this place. A guy on the Road ahead of me. He said he got stuck there, but I didn’t have a clue what he was talking about then.

So here I am now, parked in the middle of a bunch of tents.

Looks like one of those Occupy campsites that were recently closed down. Maybe I’ll stay here for awhile and see what’s going on. I’ve got a tent in the trunk.

Day 2:

Here I am, lying awake on my cot.

Ouch!

What is that?

That ache in my wrist that woke me up.

Surely it’s not…

I get up quickly and look for my checklist, the one I made after talking with the oncologist at  my last check-up. There it is, tucked away in my special Cancer Survivor backpack, the one I assembled after the end of radiation. I carry it around with my water bottle and dietary supplements. It’s got a special pocket for Good Humor.

Let’s see – what did the oncologist say?

Cancer doesn’t attack the joints, or recur below the elbows or knees. (“Everything else is fair game,” he said.)

Oh, so I guess that pain in my wrist is simply, what, arthritis? Or – no – maybe it’s degenerative joint disease, one of the side effects of chemo the naturopath told me about.

Or, maybe I just slept in the wrong position.

But just for security, let’s continue down the list.

The doc said that, if it spreads, breast cancer usually heads for the brain, lungs, bones, or liver.

So, let’s see:

No headache. Guess my brain’s OK (relatively speaking). Check.

Lungs? No cough or shortness of breath. Check.

Bones? No pain. Except for that wrist. But that’s a joint AND below the elbow. Double check.

And I’m hungry.

That’s a good sign. A good appetite and steady weight indicate a healthy liver.

But just to be sure, I’ll check my weight on the bathroom scale. I just happen to have one of those in my backpack too. (Mary Poppins would be so proud.)

Two pounds heavier.

What?!!!

I never gain weight (well, except for those pregnancies and that one summer at Girl Scout camp).

Uh-oh. Weight gain. Isn’t that one of the signs of ovarian cancer?? Sometimes breast and ovarian cancer are linked.

Rats — No trapdoor I can open into my body for a look inside.

OK, quick – pull on my shorts. If the waistband’s too loose, it could be weight loss from liver metastasis. But if it’s too tight — abdominal swelling can mean cancerous ovaries.

But these fit just right.

Oh.

Must have been that Halloween candy my son gave me from his trick-or-treat bag, and all that extra sitting writing blog entries like this one.

I dig again through my backpack, looking for what, I’m not sure. And I see it in writing – a folder with a label that reads “cancer.”

Oh wait. No. That says “career.”

Silly.

Last week I saw something written on my to-do list and I thought it too said “cancer.” But it was only my note to myself to cancel the newspaper. Yeah, I’d like to cancel cancer too.

I glance down and notice that small mole on my right calf. It disappeared during chemotherapy, but now it’s back.

Oh right, that’s below the knee, and therefore off limits.

Unless, of course, it’s . . . skin cancer.

I remind myself, as the oncologist said, that if today’s pain is new AND above the knees and elbows AND progressive, I should start the countdown. If the pain is still around after 2 weeks, I’m supposed to call him. I am amazed at how many pains can come and go from a body in the course of 2 weeks.

A few months ago, it was the lymph node under my jaw that was tender off and on for a month. Pressing on it (of course I did!) irritated my ear and sinus and I had some tingling along my nose and lips. I was sure this meant a brain tumor that was affecting my facial nerve. But then the air dried out and the molds disappeared and the node retreated into obscurity.

And that tender spot in my abdomen last fall turned out to be just a bladder infection.

If nothing else, all these false alarms are a test of how well I know my own anatomy. In the misguided process of trying to diagnose myself, I’ve discovered just where my liver and pancreas are and what they do. And now that I’m in menopause — not through the natural gradual descent but from a shove over the cliff by that villain chemotherapy – I wonder just where are those ovaries anyway? Everything in my body seems to have shifted. The joints work differently. Even my teeth don’t come together quite like they used to.

A yoga teacher once told me that, if we are spiritually healthy and mature, we grow in awareness. I don’t think this is the kind of awareness she meant.

I resent the way cancer has hijacked my thinking.

Hypochondria: It’s just another word for obsession.

“Presque tous les hommes meurent de leurs remèdes, et non pas de leurs maladies.”

Nearly all men die of their remedies, and not of their illnesses.

Molière: The Imaginary Invalid (1673), Act III, sc. iii

A Camp Fitch Tent Group

Image via Wikipedia

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

 

You Don’t Want to Be Like Me

A glass of port wine.

Image via Wikipedia

Much as I like to think I’m a good role model (as humans go), I’m guessing that none of you wants to be like me. Bright, witty or (a-hem) humble as I might be, being like me means that you live your life in the shadow of a cancer diagnosis.  Specifically, a diagnosis of triple-negative breast cancer (TNBC).

Since this topic has become one of special interest to me (sigh), I figure the least I can do is use what I learn to help keep others off the path I’m on. What follows here are a few pointers, based on recent research, that might keep you from emulating me:

First off, if you want to avoid a diagnosis of TNBC, don’t have children. According to a study in the Journal of the National Cancer Institute, the more times a woman gives birth, the higher her risk of TNBC. Those of you looking for a reason not to get pregnant might shout out with relief at this news, but there’s one problem, and it comes in the form of a Catch-22. The research also confirmed that women who don’t give birth at all have a 40% higher risk of developing estrogen-positive disease, the most common type of breast cancer. The report can give you the fine details about this conundrum, but what they point to is this: you may be damned if you do and damned if you don’t. (I don’t care what the study says, dammit, I’m still glad I have my kids.)

The second pointer: Eat your veggies, specifically your cabbage, kale and other cruciferous ones. Research from Italy shows that indole-3-carbinole, a substance found in large quantities in these veggies, can fight both TNBC and hormone-positive breast cancer when injected into tumors.  OK, so the study was done in cell lines in a lab, not in humans, but you can’t use that as an excuse to avoid eating Brussels sprouts.

Speaking of antioxidants, you might try to figure out how to incorporate a particular one into your system. A report in Cancer Biology and Therapy describes how the tumor-suppressor protein Caveolin-1 (Cav-1) can inhibit cancer, cardiovascular disease, and muscular dystrophy, and it might be particularly helpful in those of us with TNBC. There’s lots of good data in the article, but no explanation of how you can ensure that you have this protein, and no genetic tests for it are currently available.  So let’s file this news in the “keep an eye on it” category.

Third, keep up with that exercise and watch your weight. With all the talk about health problems in the U.S., we should all know this by now, but news from the Women’s Health Initiative published in Cancer Epidemiology, Biomarkers and Prevention confirms that being overweight and inactive increases your risk of breast cancer (and about a million other health problems).  But here are some of the fine details: weight gain between ages 35 and 50 carries the greatest risk, and a body mass index above 31 and below 23.75 are also risk factors.  So even though you can’t ever be too rich, it appears that you can indeed be too thin.

Fourth, read the fine print about Vitamin D. Getting more might be good thing: low levels of vitamin D are directly correlated with TNBC in humans. But if you’re a mouse, that vitamin might not be such a good thing.  Researchers at Georgetown University Medical Center found that vitamin D significantly reduced the development of estrogen-positive breast cancer in both lean and obese mice, but did not help mice with estrogen-negative cancer (which includes TNBC). In fact, obese mice who developed estrogen-negative cancer were worse off than lean mice if they were given vitamin D.  (See, obesity is a bad thing even in mice.)

Older women might especially like these next two items:

  •  If you’re past menopause, you can just keep right on smoking and drinking alcohol and not worry about increasing your risk of TNBC.  Actually, you might even want to drink a little more. The researchers determined that smoking and alcohol use were both associated with estrogen-positive breast cancer, but not with TNBC (Cancer Causes Control). In fact, drinking alcohol actually slightly reduced the risk of TNBC. So there you go – a reason to toast menopause with that extra glass of wine, except that for that darned Catch-22 of alcohol increasing the risk of hormone-positive disease. And, oh yeah, there’s still the problem of smoking leading to lung cancer.
  •  If you are over 65 and have TNBC with affected lymph nodes, make sure you get that chemotherapy. Research published in the Journal of the American Medical Association showed that older patients in generally good health with TNBC do as well as younger patients and should get the best possible chemotherapy.

So there you have it for this week.  Next week, who knows? The evidence cited here might be de-bunked in the next round of research in the War on Cancer. Here’s hoping you never find yourself, like me, a foot soldier in that War.

Cancer as a Competitive Sport

Soccer ball.

Image via Wikipedia

Here’s a quiz.

Which of these would you rather have?

  1. Stage 3 triple negative breast cancer that has no genetic component
  2. Stage 2 hormone-positive breast cancer as a result of hormone replacement therapy
  3. Stage 2 hormone-positive breast cancer with a BRCA1 gene mutation
  4. Stage 4 malignant melanoma

Well of course, your answer should be “none of the above.”

But for some who have been placed on the path through Cancerland, this question actually begins a strange competition.

Which of these options is the best choice? Let’s take a look at the facts.

As cancer goes in general, the higher the stage, the deeper the trouble.  Early stages (1, 2 and possibly 3, depending on who’s defining it) are generally considered curable.  Stage 4, in which the cancer has spread to other areas of the body, can be treated but is not generally considered curable.  Given this ranking, you might assume that a stage 2 cancer is preferable to a stage 3.  And you might be right.

But then, with breast cancer, there’s the issue of hormone receptivity. In general, patients with the so-called “hormone-receptor” breast cancers (ER+, PR+, HER2-) have a wider range of choices for treatment – “targeted” therapies such as  Tamoxifen and Herceptin – which have vastly improved outcomes for patients with these types of breast cancer, compared to the triple-negative variety, in which the cancer has no (or few) hormone receptors and no targeted therapies (yet). Given this information, you might think it’s better to have a hormone-receptor positive type of breast cancer. And again, you might be right.

But recent research shows that the hormone-receptor cancers are often less sensitive to chemotherapy than are triple-negative cancers, and they have a higher likelihood of recurrence for a longer period of time.  As my oncologist put it, the breast cancers that return after 10 or 12 years tend to be the hormone-positive variety. And research also shows that drugs like Tamoxifen present problems of their own and should not be used for long periods of time.

Once you add in the effects of genetic mutations, the picture becomes increasingly complex. Is it better to have a stage 1 tumor with a genetic mutation (BRCA1 or BRCA2)? Or to have a stage 3 tumor without?  Stage 1 is generally better than stage 3, but a genetic mutation puts you at higher risk of recurrence, and ovarian cancer as well.

Are you confused yet?

The point of my analysis is this:  The competition is pointless.

Cancer is cancer, and none of the varieties is preferable.  This is a disease you don’t ever want to have in any form.  Even if it’s one of the curable types or stages, you can never know for sure if you’ve been cured, until you die of something else.

Those who play the game of Competitive Cancer do so for one simple reason: to make themselves feel better.  The word cancer introduces a person to a fear like no other.  One of the ways we humans deal with fear is to tell ourselves that “it could be worse.” And to reinforce that false assurance, we compare our situations to those we imagine are worse than ours.

The truth is, there is no way to predict, for any individual, what the outcome will be based on the type of cancer diagnosed.  The survival and recurrence statistics only follow trends, and those trends are always in the past because you can only count the numbers after the fact.  They do not dictate what my or your particular experience on Cancer Road will be.  Elizabeth Edwards started out with a stage 2 hormone-positive cancer in 2004. It metastasized to her bones and liver and lead to her death in 2010.  An acquaintance of mine, diagnosed 2 years ago with Stage 4 malignant melanoma, lapsed into a coma in which she says she actually saw her ancestors coming for her. Today, by the miracle of an experimental treatment, she is attending yoga classes and recently took a trip to Chicago.

So, which type of cancer wins the Cancer Competition?

None of the above.

None of them at all.

Myth Busting, Part 1

A couple weeks ago, I went in for another trip to another doctor.  This visit was routine –the “review of systems” recommended at certain age milestones.

I hadn’t seen my primary care doc since the day she gave me the breast cancer diagnosis in June of 2009. Except for a few ongoing aches (the jaw, the elbow), I seem to be in pretty good shape. I got tetanus and whooping cough boosters, gave up two vials of blood for tests (sedimentation rate, thyroid hormone), and was sailing merrily out the door when I realized I’d forgotten to ask when I’m due for the next mammogram.  My last one was in July, 8 months ago, but some guidelines recommend every 6 months for a couple of years after surgery.

So back I went to the desk clerk, asking her to query the doc.

“I don’t know whether we’re bothering with the mammogram anymore,” I said, “since they turned out to be pretty useless for me.” Before I’d even had a chance to finish my comment, the desk clerk rolled her eyes and nodded.

“Useless, that’s right,” she said definitively.

Obviously, she had no more faith in them than I do. I replied, “Yeah, I just wish the media would get that message across to the public, instead of the myth that mammograms will save you.”

She nodded again and said, “Yeah, that would be great.”

That message should be even louder with the report last week that mammograms are even more useless for those of us who’ve had breast cancer.

******

Also a few weeks ago, in my e-mail, came a link to an article about a woman in Chicago who returned to work after her treatment for triple negative breast cancer. Appearing in the article is a comment I’ve seen too often now — that this form of cancer is “aggressive” and outcomes are often “poor.”  These comments have been repeated almost as if they were scripture.

As with information about any given disease, the truth of the matter is in how you slice the data. Clearly, the woman in Chicago is doing well, as am I.  Of course our present circumstances are no guarantee of continued good health, but they do work to dispel the idea that triple negative disease is always deadly. A booklet published by the Triple Negative Breast Cancer Foundation, Guide to Understanding Triple-Negative Breast Cancer,clarifies a number of the misunderstandings about this particular form of breast cancer:

  • About 10 to 20 percent of breast cancers are triple-negative.
  • Triple-negative breast cancers do not respond to “targeted therapy” such as Herceptin and Tamoxifen. (HER-2 negative tumors were actually considered the most dangerous type of breast cancer until Herceptin came along.)
  • Although BRCA1 mutations increase the risk of developing triple-negative disease, not all breast cancers from BRCA mutations are triple-negative. The BRCA2 mutation is actually more likely to appear in tumors that are estrogen receptor-positive.
  • Even if you have no family history of breast cancer, you could in fact be the first person in your family known to develop breast cancer because of a BRCA mutation.
  • Pre-menopausal women and women in black and Latina groups have higher rates of triple negative cancer than other groups of women.
  • Chemotherapy works better against triple-negative cancers than it does against hormone positive breast cancers.
  • Although triple-negative breast cancer can be aggressive, it does not always metastasize. The risk of recurrence is strongest in the first 3 years after diagnosis (some studies say 5 years, some as many as 8-10 years).  Past this time, the risk of recurrence actually falls below that of other types of breast cancer.

And most importantly, most women with triple-negative breast cancer never have a recurrence or a new cancer.

So, like the myth about mammograms, the message about triple negative breast cancer needs to change.