In Our Own Backyard

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This New Year’s Day brings us into the Year of the Dragon, and marks my second-year anniversary from the end of chemotherapy.  One more year and my risk of recurrence drops considerably.  But while I think of my great good fortune, in the past month, I have learned of four friends or acquaintances who are now facing a cancer diagnosis for the first time, a somber and increasingly common experience.

In my last post, I summarized global cancer statistics and trends. This time, I’m considering my own proverbial back yard.  The data you see here relate to cancer in the United States and come from Cancer Facts & Figures 2011, published by the American Cancer Society (ACS).

According to the authors of this booklet, “[t]wo major classes of factors influence the incidence of cancer: hereditary factors and acquired (environmental) factors… Environmental (as opposed to hereditary) factors account for an estimated 75%-80% of cancer cases and deaths in the US.”  This percentage breaks down as follows:

  •  Exposure to carcinogens in occupational, community and other settings – 6%
  • Tobacco smoking – 30%
  • Poor nutrition, lack of physical activity, and obesity – 35%

Add up these numbers (71%) and you’ll see that the specific environmental causes of a good number of cases are still unexplained.  (BPA? Pesticides? All those chemicals we ingest or pour into our water sources every year?)

The booklet goes on to note that “even a small percentage of cancers can represent many deaths: 6%…corresponds to approximately 34,320 deaths.”  And “the burden of exposure to occupational and environmental carcinogens is borne disproportionately by lower-income workers and communities, contributing to disparities in the cancer burden across the population.”  The ACS figures that, if racial and economic disparities in the United States were eliminated, there would be 37% fewer deaths from cancer, leading the agency to conclude that poverty is a carcinogen.

Elsewhere in the book, the authors note that “questions remain about the role of exposures to certain classes of chemicals (such as hormonally active agents) during critical periods of human development.” Answers to these questions might eventually explain why birth control pills have not been conclusively tied to cancer but hormone-replacement therapy after menopause has.

Here are some interesting data on the most prevalent cancers – lung, prostate, and breast:

Lung cancer alone is responsible for 27% of all cancer deaths, and is the number 1 cause of cancer deaths for both men and women. The ACS notes that, “[s]ince 1987, more women have died each year from lung cancer than from breast cancer.” And yet, we don’t see nearly the same amount of energy put toward races to cure lung cancer as we do for breast cancer. (See more about this disparity here).

This is just one of many examples of how data about health and disease is skewed by marketing forces. Breasts and the color pink are palatable (though honestly, I’m tired of women being defined by their breasts for any reason and pink being chosen as the color to represent women). Apparently, lungs and their color – pearl – are not so sexy.  Yes, more women are diagnosed with breast cancer, but more die of lung cancer.

Prostate cancer is the second leading cause of cancer deaths in men. Anticipated new cases for 2011 total 240,890, with 33,720 deaths. African-American men and Jamaican men of African descent have the highest rates of prostate cancer in the world, and the disease is more prevalent in North America and northwestern Europe, less so in South America and Asia.

Breast cancer is the second leading cause of cancer deaths in women. For 2011, the ACS estimates 230,480 new cases of invasive breast cancer among women, 2140 in men. This number does NOT include the type referred to as DCIS, which is not usually invasive, and has been referred to as the “good” breast cancer.

Notice the statistics:  In 2011, more men will have been diagnosed with prostate cancer than women with breast cancer, but fewer men die of prostate cancer.

The list of risk factors for breast cancer contains the usual suspects (obesity, physical inactivity, and alcohol, which acts like an estrogen in the body).  But I see that the ACS is finally listing dense breast tissue as a risk factor along with high bone mineral density and a breast irregularity called hyperplasia (especially atypical hyperplasia).  They also note that there is some evidence that women who work night shifts seem to have an increased risk of breast cancer.

But as always with breast, and perhaps other cancers, there is a caveat.  These factors relate primarily to the hormone-driven breast cancers (ER+, PR+ Her/2-, or any combination of these).  Those of us dealing with the triple-negative type might have an entirely different set of risk factors that has not yet been determined.  I’ve seen preliminary reports that a too-low body mass index and having had children at all are risks for triple-negative disease.

By state, the incidence of breast cancer pretty much follows the trend of national totals for all types of cancer, with California and Florida at the top of the list, followed by New York and Texas. Here in Washington, the projected number of new cases of breast cancer for 2011 is 5,630. In my native Ohio, it’s 8,970.  The number of deaths from breast cancer are also similar, led by California and Florida, then Texas and New York.  In Washington, that number is 800; in Ohio, it’s 1730.

In the flurry of all these numbers, don’t get confused.  The numbers by state may reflect only that one state has a higher population than another, not that there are necessarily more risks tied to location. The number of new cases for each state is pretty high, but the number of deaths is significantly lower, which only means there are many, many survivors of breast cancer out there.

Certainly we know by now how bad smoking can be for us, but here are some interesting details about the exposure to second-hand smoke: “Each year, about 3,400 nonsmoking adults die of lung cancer as  a result of breathing SHS [secondhand smoke]” and “SHS causes an estimated 46,000 deaths from heart disease in people who are not current smokers.”  Perhaps this is because SHS contains about 7,000 chemicals, “at least 69 of which cause cancer.”

In my home state of Ohio, the overall estimated number of new cancer cases for 2011 is 65,060.  In my adopted state of Washington, that number is 35, 360.  Quite a difference, but some of that has to do with population (Ohio has about 11,542,645 residents while Washington has 6,664,195).  The state with the highest overall estimate is California (with 163,480 estimated new cases), followed by Florida (113,400) and Texas (105,000).  Wyoming has the smallest number (2,680).

There is much more information and data in the ACS booklet, so much as to be overwhelming.  To make better sense of the numbers, here’s a wider perspective:

  • Heart disease is still the most common cause of death in the United States, with cancer second.  Cancer has killed about 499,564 people so far this year, but heart disease has killed 593,819.
  •  About 1500 people die of cancer each day, compared to about 2200 for heart disease.
  • As of January 2007, the estimated number of cancer survivors in the United States is 11.7 million, which means about 4% of the population has had the cancer experience.

According to the Stand Up to Cancer organization, 1 out of every 3 women and 1 out of every 2 men are at risk of developing cancer in their lifetime.  I guess I’m one of those who is “experienced.” Now, I’m looking to that dragon to protect me.

Champagne and a Torch to Pass

So on my way home from my LAST DAY of radiation treatment on Monday (yippee!), I stopped at the liquor store, figuring to buy a bottle of champagne. Appropriate, I think, considering the circumstances.  I was the only customer there (a good thing considering it was before noon), and there was just one clerk working the cash register. As she rang up the bottle, she asked to see my ID since I was using a credit card.  Unlike other cashiers at other places, she actually looked at the photo on my license and then looked long and hard at me, comparing the face before her with the laminated version on the card. That version has light-colored hair hanging down below her chin.  “Oh, I like the short hair much better,” she said, and went on to talk about how her mother got her hair cut short but she likes her own long hair even though she always ends up putting it up a few hours into the day.  As I listened to her talk, I realized it — I did not have to explain to her why my hair is short.  She assumed it was simply my choice of style, not the repercussion of a long, tiring excursion on the cancer path. And that’s exactly what I let her think. What a relief.

So take a good look at the photos.  This is how I looked on my last day of radiation treatment.

And accompanying me is one of the friends who helped me through.

The last 5 sessions of chemotherapy, the “boost,” started last Tuesday.  The room used for the boost is opposite the one I’d been going to, but it looks very similar. Linac dominating the middle of the room, those same pock-marked acoustic tiles on the ceiling. Honestly, they need inflatable palm trees in these rooms, walls painted in a jungle theme, something, ANYthing to dispel that cold clinical feel (and I have told them so on the feedback sheet they gave me).

The machine also looks similar, but attached to the disk hovering overhead is a short arm that holds a metal cage.  The bottom of this cage is a thick piece of metal with a hole cut in the shape of  the oval Dr. W drew on me last week. The table I lie on has no special backrest — perhaps they’ve already recycled mine — just a sheet to lie on and a pillow to lean on.  For the treatment, the cage gets moved close up, and then the technicians lay a warm orange gel pack across my chest and tape it (and me) to the table with long stretches of cloth tape.  The pack acts as a layer of skin, allowing the electrons to penetrate at the correct depth.  Once the session is underway, the machine emits a subtle fizzing noise.  The whole session takes about 5 minutes.

The doc checked my skin last week and says things look good.  A couple changes — antibiotic ointment for a week under the arm where the skin is chafed, Eucerin cream on the rest of the field, “call if you have any questions.”   The itching is diminishing and, except for the oval area of the boost, the redness is lessening too.  Any skin effects to come will appear within the next week.  After that, it’s the same scenario everyone is advised to follow — stay out of the sun, wear suncreen. Oh, and here’s a souvenir mug filled with candy to take home with you.

It seems too easy.  Go back to life as you used to live it (except for that constant vigilance part).
But surely this can’t be all?  All of the cancer gone, yes, but how do I go back to living as I was before?  The earth has spun, vistas of fear and determination opening up inside me, how can it be as it was before?  I’m not who I was then. And the whole experience taught me that I don’t necessarily understand who I am now or what it is I’ve come through.  So, although the trips to the doctor have ceased, my journey has not.  Now I have to figure out how to be, all over again.  That could be almost as frightening as the illness was.

Fortunately, the oncology center is working on ways to ease this transition back to the future of the “new normal.”  In addition to the naturopath, the massage therapist, and the other services they offer, they are instituting a program for those ending treatment.  I met with the clinical psychologist who is marshalling the effort and came home with a stack of information almost as big as the one I had before starting chemotherapy.  Lots of good resources for dealing with this time that is, as the radiation oncologist described it, almost as difficult as receiving the initial diagnosis. I have been so very blessed to have these resources and so many good people looking out for me.

And now, in turn, I become one of those looking out for others.  Last week, the university where I have been teaching had its annual opportunity for women to read from their own writings in honor of Women’s History month.  I chose to read selections from these updates.  Afterwards, a woman from the back of the room stepped forward and extended her hand, explaining that she was about to embark on the same path — triple negative, no explanation for its occurrence — and had just had her hair cut short in anticipation of its coming out. This is not a torch I would choose to pass.

And maybe, if more facts about cancer and its treatment were made known, there would be fewer torches passed.  I came across an article in the Sun Magazine , an interview with Samuel Epstein, M.D.,  a British physician now living in the U.S.  The topic of the interview was cancer, and how the public is not fully informed of the issues surrounding it, the reasons it develops, and even how the American Cancer Society is not fully invested in finding causes and prevention. Epstein says there is sufficient evidence to show some definite causes of cancer: prolonged use of birth control pills and hormone replacement therapy, high-fat animal and dairy products, hormone-contaminated meat, petrochemicals in the workplace, prolonged use of black and dark-brown hair dyes, silicone breast implants, heavy smoking or drinking beginning in adolescence, inactivity and obesity.   Some of these we’ve heard a lot about, some not so much, and there’s plenty of arguments about what really causes cancer.  But I was struck by the forcefulness of his argument, and couldn’t help but notice the irony of the publication date — March 2000.  In the interview he refers to his prevention program, from his 1998 book on breast cancer, in which he recommends taking aspirin as a preventive.  And here I thought the recent article in the New York Times about aspirin as a preventive was up-to-date news.  If you’re interested in reading what Dr. Epstein has to say, take a look here:  http://www.thesunmagazine.org/archives/842

The cancer may be gone, but my journey continues….

There is No Such Thing as Early Detection

It’s a beautiful day in the neighborhood, despite what the weatherman predicts.  Clouds over The Mountain, which has already gotten its first layer of new snow, but here it’s sunny and the water is peaceful.  The newest hummingbird came by, having made its first appearance only a week ago. His head is entirely red when it reflects the sunlight.

Back by my request:  The Popsicle Report.  A nurse friend told me to ask for the Popsicle even though it’s no longer part of the protocol.  She said a nurse could never turn down such a request.  So yesterday it was tasty strawberry on a stick. I figure if I ask for it while waiting for the blood results and before the Benadryl knockout, I can still get the treat.  Timing is everything.

The third infusion of Taxol went routinely.  Three down, 9 to go.  Last week, we did 3 Neupogen shots to bolster the white count — which is now a whopping 21.  Almost twice the high end of the normal range. So I guess maybe we can stop those shots now….

The Benadryl knocked me out again, and I kept my hands on ice packs during the infusion.  I’m feeling a periodic tingling on occasion in various fingers, but that might be my imagination.  Something like the placebo effect — they tell you it might happen so you think it does. It’s not happening regularly enough for me to connect it to the Taxol — yet.

I took a nap when I got home — the after-effects of the Bendadryl — but that was probably a mistake.  I lay awake most of last night, and more than ever, sleep deprivation is affecting my mood. I think I’m doing pretty well at keeping my spirits up but today I’m living the words of a Dave Matthews tune, “So Much to Say”:

I say my hell is the closet I’m stuck inside
Can’t see the light
And my heaven is a nice house in the sky
Got central heating and I’m alright
Keep it locked up inside
Don’t talk about it
Talk about the weather
Can’t see the light
Open up my head and let me out…
I find sometimes it’s easy to be myself
Sometimes I find it’s better to be somebody else

********
Today, I’d like to be somebody else.

I wouldn’t mind being Dmitri Shostakovich.  My daughter is practicing the piano section of his Concerto #2.  What a gorgeous piece.  Wish I could create music like that.

Been doing more research, wouldn’t you know, this being Breast Cancer Awareness month and all (no way to avoid noticing that — pink everywhere you go — but I’d rather think of it as Hispanic Culture month).  I’ve finally found a few obscure references to the discrepancies I’ve discovered in my own experience vs. general public information.

One report from the American Cancer Society briefly mentions that having dense breast tissue may be a risk factor, but I have yet to see that show up on any of the standard public lists.  Another report I stumbled across even mentioned that triple negative disease may have its own set of risk factors but does not explain what those are.  This version of breast cancer seems to be found more often in African-American women and among lower income levels.  Add that to the other factors that don’t apply — obesity, family history, etc. — and I’m wearing a shoe that just doesn’t fit.  Too bad I can’t take it back to the store and return it.

I mentioned last time my irritation with the mantra “get your yearly mammogram.”  I went back and checked Barbara Ehrenreich’s article about the breast cancer cult.  It discusses the doubts about mammograms, and was published back in 2001.  My husband passed along to me a slide show from a presentation done by a physician at the Fred Hutchinson Cancer Center up in Seattle, where we went for a second opinion.  The presentation is entitled “Screening for Breast Cancer: Uncertainties and Controversies.”  In his summary, Dr. Thomas makes this clear statement: “Mammography is the only method for breast cancer screening of proven efficacy, and it is not very good.” I don’t know the date of this presentation but he cites references from 2007.

Can’t make it any plainer than that.

And yet, and yet — we hear the mantra: Get your yearly…
Seems we ought to be hearing a change in that mantra by now.

This week on CNBC was an interview with the CEO of a company called Naviscan, describing their “new” technology to diagnose breast lumps.  Turns out it’s not really all that new: PET scans that focus specifically on breast tumors.  PET scans are already used in the staging process for cancer in general.  And again, this “new technology” is put to use only after the patient or doc finds something that needs scoping out.  Maybe it will help pin down the diagnosis more accurately than MRIs or ultrasound, but it’s still not early detection.  Makes for a catchy headline during Breast Cancer Awareness month though.

Some organizations take the approach of preventing breast cancer, which is a worthy goal, even though we don’t know entirely what causes it. Some reports say high-fat diets. One I found even blamed a high-sugar diet. I came across one that describes the Gail model, which the MD Anderson Cancer Center in Houston uses as part of its method to calculate the risk of breast cancer for patients. I’d never heard of it before, so was happy to find the online calculator here at the National Cancer Institute:

http://www.cancer.gov/bcrisktool/Default.aspx

So ladies on this list, have a go at it if you like.

Just don’t trust the results.

I calculated my risk based on my situation in May, before I discovered the lump.  According to the calculator, “Based on the information provided, the woman’s estimated risk for developing invasive breast cancer over the next 5 years is 1.3% compared to a risk of 1.2% for a woman of the same age and race/ethnicity from the general U.S. population. This calculation also means that the woman’s risk of NOT getting breast cancer over the next 5 years is 98.7%.”

Yes, well….
This shoe doesn’t fit and I want to take it back.

On the brighter side, I’ve learned a bit more about triple-negative disease.  If you search through the list of clinical trials for breast cancer, you’ll see that most have to do with hormone-receptor positive or HER2-negative tumors, and are either for patients whose cancer has metastasized or who have earlier stages than I do.  That would make you think that people like me aren’t getting equal attention, but as Dr. L, my oncologist explained, it’s only been in the past 4 years or so that the triple-negative variety has been clearly defined, so it’s not so much a matter of neglect as it is the others getting a head start.  And there’s heartening news from over the summer about the use of drugs called PARP inhibitors against the triple-negative variety.  But again, the tests have been in people with metastatic disease.  According to Dr. L, the reason most of the trials are done in people with Stage IV (metastatic) disease is because you can see quick results — the cancer either responds immediately or it doesn’t. Trials done on patients with earlier stages take longer to get results.

But now it’s time to get out of my own head and outside where the brightness is.  Tomorrow is my 49th birthday. To end, I’ll turn again to Dave Matthews, from a song called “Two Step”:

Celebrate we will
Because life is short but sweet for certain
We climb on two by two
To ensure these days continue
These things we cannot change

The Wild West of Treatment

Well it’s been another wild week in west Olympia.  With the time off work and my part-time hired help, you’d think I’d have nothing but time on my hands.  Wish it were so.

This week’s infusion went ahead as scheduled, number two in the Taxol series, even though my white count has dropped again.  Down to 2.0, that pesky threshold number that can make or break the routine.  My doctor said it was OK to go ahead though, since the total count wasn’t below 2.0 and the neutrophils, the most important subset of white cells, were acceptable.  We don’t know the reason for the drop. Could be just the one injection of Neupogen last week (we were anticipating being able to back off these because the Taxol is “kinder and gentler” to bone marrow), could be still some fallout from the Adriamycin/Cytoxan.  Apparently, those drugs can have residual effects for up to 3 weeks after they’re stopped.

Which is why I can’t yet answer the question I’ve been asked: How is the new drug making me feel?  Seems I’m still in a transition phase.

As with last week, the premedication of Benadryl knocked me out and I had a nice nap during the infusion.  I can’t eat a popsicle while I sleep, but I’m still trying to figure out how to work the angles on that treat.  I didn’t put my hands on ice yet. The naturopath suggested it, the oncologist said he didn’t think it necessary, and the nurses can go either way.  So much for the idea of science being hard and fast.

Fortunately, the drowsiness from the Benadryl dissipated quicker — I’m told a body builds tolerance to it — so I got by without a nap at home.  I’m still on the steroid energy kick, which usually washes out around Thursday afternoon. Though the drugs have changed, I’m still taking about the same number of them, and will have a clearer sense in a couple weeks of exactly what’s happening.

I’ll continue with the Neupogen, hoping the white cells level off soon.  The night-time dose of Ativan seems to have lost its effect, so I’m making the switch to melatonin in search of that increasingly elusive good night’s sleep. Another side effect of the chemotherapy is instant menopause, with all its inherent, uh, charms. The most bothersome of these at the moment is the night sweats. Throw the covers off. Get cold. Drag the comforter back on.  Get hot.  Throw the covers off….  You’d think all that activity would count for aerobic exercise. I could work off any weight gain from a bedtime snack in no time at all.

But surely there are better ways to maintain weight. Can’t stay in the triple digits with all that activity.

Anyway, between the sweats and my son’s middle-of-the-night growing pains (those darn children — they GROW, and at the most inconvenient times), the steroid high and the Benadryl knockout, it does feel a bit like the Wild West in my body and soul this week.  Chemicals leave their mark on the psyche as much as they do on the body.

I continue to puzzle over how I came to be in this situation. I have few risk factors (70%of patients don’t have any of the standard factors) and no family history (only 15% of patients have one).  I’ve taken pretty good care of myself, done the exercise, eaten healthful foods, gotten the mammograms.  I think about where I’ve lived, possible chemical/carcinogen exposures. It’s a never-ending loop and I look for any truth in public information that can help me make sense of things.

Last week, I attended a dinner for breast cancer survivors (something I both dreaded and desired), and the keynote speaker addressed some of the psychological impact of this diagnosis. She said that everyone dealing with this disease tries to figure out what caused it, even though no one can ever tell you what lead to its development. There’s no direct link as there is for smoking and lung cancer.  But she said it’s a necessary part of the mental process once a patient receives the diagnosis, so at least I know my line of thought is normal, even though the search may be futile. As part of the process of making sense of things, I’m trying to dig below the surface of generic public information to find the truth as I am discovering it to be.

One publication that holds a tremendous amount of data is the annual report by the American Cancer Society (Cancer Facts and Figures) that shows in detail the cancer rates throughout the country by type of cancer, sex, age, geographic region and other details. If you’re interested, you can find it here:
http://www.cancer.org/downloads/STT/500809web.pdf

There’s more information than you might want, but the map alone is worth a look.  In the section on breast cancer, I found a bit of truth that has been missing from most generic public sources on the subject: the fact that having dense breast tissue can be considered a risk factor and has a definite influence on how accurate a mammogram is.  The more I’ve thought about my situation, the more irritated I’ve become with that mantra projected at women: “Get your yearly mammogram!” as though that’s the surefire way to catch breast cancer early.

I’m guessing I’m not the only woman who’s gotten caught in that gray area where mammograms fail. It’s good to finally see science starting to register dense tissue as a risk factor, but it’s still not showing up on the information that’s disseminated to the general public. I’d like to see that change. I’d also like to see better methods for catching this disease when it really is early. If breast cancer really is present for 3, 5 or even 6 or 8 years (as Dr. Susan Love believes) before it can be detected on mammograms, there has to be a way to catch the disease sooner. Mammography is not actually a form of
early detection.

Of course something patients with any illness wonder about is whether they’re getting the best care available, and that’s true for me as well. We have done our due diligence of reading and research, getting second opinions, keeping our eyes open and, fortunately, I’ve consistently come to the conclusion that I’m in good hands of care. That feeling was enhanced by an informative article in this week’s Newsweek that researched outcomes of cancer treatment at medical centers around the country. The article helps clarify the confusion about where to go and what to expect for various treatment centers. If you’re interested, you can find that article here: http://www.newsweek.com/id/218235.

A couple people have commented to me how courageous I am, going through all this. I don’t know as that courage really has much to do with it. Yes, it’s a necessary component of the journey, but when you’re put on a sudden and serious path, and it’s the only way through the forest, the journey has less to do with courage than simply doing what has to be done. Can you call it courage when there really isn’t any other choice?