What About Those Other Cancers? Prevent What You Can, Fight What You Can’t

 

Time to put on my skeptic’s hat.

The news has again been filled with various reports on cancer, cancer prevention, and cancer treatment. Some of this news has shown up in my mail – both snail and electronic. First came the plea for contributions from the American Cancer Society, with the optimistic headline that says “Yes, we are beating cancer!” This headline is backed up by statistics stating there’s been a 25% decline in cancer death rates since 1991, and that “more than 2.1 million cancer deaths have been avoided during this time!”

Their crystal ball must be pretty good to be able to see what *didn’t* happen during this time span. A decrease in cancer deaths, while great news, doesn’t tell you that cancer rates are expected to rise.

Then there was the email notice from the Cancer Prevention Institute of California (motto: “Preventing Cancer. Promoting Life.”) that includes an “infographic” (a.k.a., chart) of ways that you can reduce your risk of cancer by one third to one half. The list has the usual steps: eat a balanced and healthful diet, get exercise, protect yourself from the sun, get the HPV vaccine, and avoid smoking and eating too much red meat. This is useful – but not exactly cutting edge – information indicating that the 30% to 50% risk reduction relates primarily to cancers of the colon, lung, skin, and a basketful of general cancers not entirely specified.

Also in this email is a link to a press release about a study of triple negative breast cancer, which found that “women under the age of 50 who breastfed for at least 24 months over their lifetime had a lower risk of developing TNBC. For women with three or more full-term pregnancies, risk increased two-fold if they did not breastfeed or only did so for less than a year. No increase in risk was seen for women who breast-fed for more than a year.”

Feeling confused? So am I, and I even try to keep up with the research on TNBC. These latest findings still don’t explain why I ended up with that particular cancer. According to this study – and the fact that I generally lived by the tips on the infographic — I should have been at low risk for cancer in general.

At this juncture on Cancer Road, I’ve stopped thinking there will ever be a single cure for cancer, or even one cure for everyone with a single type of cancer. The more research is done, the more clear it becomes that the term cancer covers an ever-increasing number and variety of cell abnormalities. Though there may be cures for some specific cancers, this disease will always be a few steps ahead of science.

I am grateful for (and contribute to) the researchers who dedicate their life’s work to finding cures, and appreciate the various organizations that try to educate us about risks and prevention. Though I understand the need for optimism and see the value in charting progress, none of it explains why — if you do the math — 50% to 70% of cancers don’t seem to be preventable, at least not by controlling the factors listed in the infographic.

If we can control some of the risks that lead to certain cancers, there must be ways to prevent others as well. But the prevention information peddled to the general public doesn’t address how to do this. The information largely puts the burden of prevention on the individual – do this, don’t do that — and ignores the larger picture.

During this month, which honors cancer prevention, I’ve been reading a book that, at first glance, doesn’t seem directly related to the topic: Silent Spring, by Rachel Carson. Published in 1962, the book details the drastic increase in the use of pesticides and herbicides since 1945, and their catastrophic effect on fish, plants, wildlife and — it turns out — humans throughout the 1950s. This book is generally credited with advancing the environmental movement, though Carson herself died of breast cancer two years after the book came out.

Carson’s findings aren’t news to those who know her work or are active in the environmental movement. Reading Silent Spring reminded me of the environmental chemicals I was exposed to over the years (weed killers, insecticides, household cleaners, chlorine in swimming pools), some of which I had control over and most of which I didn’t (DDT wasn’t banned in the U.S. till 1972, when I was 12).

Connecting these various dots, I’d like to propose two steps:

1. Prevent what you can: Along with eating well and giving up smoking – activities we have control over — we should give up using harmful environmental chemicals whenever possible. (Throw away those ridiculous air fresheners and welcome the weeds in the lawn.)
2. Fight what you can’t: Petition the manufacturers of such chemicals to assign some of their scientists to cancer studies in search of a cure. After all, if they’re going to create cancer-causing agents, the least they can do is try to repair the damage.

Maybe then we’ll see a decrease not just in cancer deaths, but in the rates of those other cancers too.

For a list of top 116 cancer-causing chemicals and activities, click here. See how many of these you can remove from your life.

To Soy or Not to Soy

My apologies to Shakespeare for the skewed headline, but that’s the first thing that came to mind when I read the results of a recent report on a perennially confusing topic for those of us who have had breast cancer: whether eating soy products is helpful or harmful.

Some studies show that, because of its estrogen-like properties, soy products should be avoided by people with hormone-positive breast cancer. But there’s evidence from East Asian countries that eating soy might actually be protective, as the rates of breast cancer there are considerably lower than those in the U.S. So which is it?  Is soy helpful? Harmful?

The study came to  my attention in the March email newsletter from the Cancer Prevention Institute of California, whose name tells you exactly what their mission is. Their slogan: Preventing Cancer. Promoting Life.

The newsletter reads:

Eating a soy-rich diet found to reduce mortality for women with more aggressive breast cancers

Consuming more foods rich in isoflavones, a compound primarily found in soy beans, was found to decrease the risk of death of women diagnosed with some types of breast cancer. For all breast cancers combined, mortality was reduced by 21 percent. When considering specific types of breast cancer, lower mortality was found only for women whose tumors lacked estrogen and progesterone receptors. Mortality was 51% lower for women with hormone receptor negative breast cancers which are more aggressive and have poorer survival. Lower mortality was only seen in women who didn’t receive endocrine therapy as a treatment for breast cancer.

To conduct this study, researchers analyzed data on 6,235 American and Canadian breast cancer patients from the Breast Cancer Family Registry, a National Cancer Institute-funded program that has collected clinical and questionnaire data on enrolled participants and their families since 1995.

To their credit, the CPIC took part in the study and one of their researchers collaborated on it. Their report can be found here, with a link to the study published in the journal Cancer.

The study doesn’t entirely solve the riddle of whether soy can help cause or prevent breast cancer for everyone. But for those of us in the triple negative group, it appears eating soybeans can be helpful. The golden words from the summary are: Mortality was 51% lower for women with hormone receptor negative breast cancers.

So break out the edamame. And while you do, listen to a blues singer I just discovered, who puts her soul into this piece for a cancer fundraiser:

Forget the Pink: The Real Cure is Prevention

Here it is again, October, which is designated breast cancer awareness month. This is the month when all is awash in pink.  At this point, plenty of bloggers have pointed out the hypocrisy and pitfalls of the “think pink” movement, so I leave it to them to continue to beat that drum.

Today, I’d like to present two sources that are helpful in understanding and combating breast cancer. The first is an interview on the NPR program “Fresh Air,” in which Terry Gross interviews Dr. Elisa Port. Maybe some of you have already heard this interview. I happened to catch it during drive time around town. Although Dr. Port doesn’t cover all the intricacies of the various types and treatments for breast cancer, she gives an up-to-date overview of the topic, including a good discussion of the current state of research and treatment related to genetic mutations. I found the interview helpful because it is grounded in the facts, not the myths and rumors, about breast cancer. You can find the interview here.

The second source appeared in my e-mailbox just this evening. I don’t know the fine details of the Rethink the Pink organization behind this website, but I was ever-so-glad to see the focus on prevention beyond the usual “diet-exercise” discussion. This site addresses the environmental factors related to breast cancer, specifically the chemicals in health and beauty products that have never been tested or specifically labeled as carcinogenic. Caveat: It does promote products, but with the purpose of giving alternatives to the usual chemical-laden products we find on store shelves. You can find the site here.

Enough of the pink parties. Let’s get serious about real prevention that offers effective alternatives and doesn’t make us feel guilty.

Looking for My Balance Again

Now this is one of  the holidays I like to acknowledge: St. Patrick’s Day, when the leprechauns appear, if only in our imaginations, and the city of Chicago, city of broad shoulders, turns its river green, on purpose.  This is a fun holiday — not like stuffy ol‘ Presidents Day — along with April Fool’s Day, May Day, and the Japanese holiday of Setsubun (early February, when the custom is to throw roasted soybeans around the outside of your house to dispel demons and the bad luck they bring).  I might just don that metallic green wig I was given.

Speaking of hair — I received a few comments about the photos attached to the last update.  One person said they didn’t look very good.  (I agree.  My regular photographers were off duty, so I took those myself.)  Another thought they were cute.  Someone else said I have that “lesbian look.“ And my brother says I now look like him.

I’ll choose to consider that a compliment.

It’s been a week since the last of the cancer treatments, and I’m starting to realize how all-consuming the trek has been. Now that the trips across town have stopped, I feel rather like the treadmill I’ve been on has abruptly been turned off.  You know that jerky feeling of motion, then sudden not-motion.  You sway, stumble a little, and fumble to regain your balance. And then you stand a moment and wonder, “Now what was that?”  This rebalancing may take awhile. No more blood counts.  No Popsicles.  No zap count. And it seems ages ago that I rode the steroid roller coaster.  Productive though I was during that time, I don’t miss the dexamethasone high.

No more schedules, or measures of progress.  No more counting down days on the calendar. I now enter the recovery phase.  I still apply the skin ointment, though all the redness and itching have gone.  I am still trying to rid my body of the remnants of the chemical overload, and I still — and always will — think about prevention. Though I greatly admire those who have done it, I do NOT want to repeat this particular journey.

In the realm of helping the body recover, I investigated another type of body work last week.  My usual massage therapist, the one who uses Reiki, books up pretty quickly and so, in the interim of waiting for my next appointment with her, I took her recommendation to see a different massage therapist, one who incorporates craniosacral therapy.  This type of therapy ranks among the many approaches to clearing the body’s energy channels, in this case addressing the fluids.  As she explained it, craniosacral therapy is designed to keep the 70% of the make-up of the body — its fluids (spinal, blood, etc.) —  moving unobstructed, in the same way that Reiki works to keep the energy channels clear and open.  It’s a similar sort of laying on of hands.

Does it work?

Don’t know for sure but afterwards, as I stood up to get dressed, I felt a distinct, pleasant tingling just under my skin, and I paused for several minutes to allow the sensation to linger. Now this particular piece of the journey I would indeed like to repeat.

Last week I also paid another visit to the naturopath, who’s scaled back the plan once again: fish oil daily, Vitamin D every other day, and a recommendation for an herbal concoction to replace the Ativan for sleep.  He said I can go back to the CoQ10, the enzyme that bolsters the heart, for about 6 months if I like.  Despite the recent report in the New York Times, he sees no special benefit in taking aspirin, though I’m going to do it anyway since it helps with heart disease — a hallmark of our family tree.

If I want to go beyond that for prevention, he recommended curcumin, also known as turmeric. It‘s a regular ingredient of Indian food, but needs to be bound with an oil to be absorbed by the body.  So my choice is this —  I could either buy the spice and mix it with those shots of olive oil he once mentioned, or I could just buy the properly calibrated capsules from the compounding pharmacy.

Guess which one I chose?

He also suggested a concoction of  “magic mushrooms” as a preventive.  Not the kind that produce hallucinogens, thankfully (the steroid high being quite enough for me), but shiitake, maitake, and a host of others, including something called turkey tail.  And of course this mixture comes in capsule form. There’s no medicinal element  in nature that we can’t try to put in a capsule.

I’m still wading through my stack of literature about the transition period after treatment. So far, I’m seeing a clear distinction drawn between cure and healing, which is good.  One of the booklets produced by the LiveStrong organization (Lance Armstrong’s group) includes a link to a site where you can document your family medical history to generate a health tree: familyhistory.hhs.gov.  I haven’t tried it out yet, but it ‘s probably time to do so.

As for the next steps in my journey, I’m not sure where they’ll lead.  Which way do I go — back to what was before or on to something new?  (Spring implies something new.) Do I act like it didn’t happen — all the while fearing it will reappear at exactly the moment I‘ve finally forgotten it? Or do I just consider this experience a speed bump on my personal highway?  In that case, do I take the exit to hypochondria, imagining that every odd twinge heralds a return to the highway? So many choices. Which way to go?

Stay tuned…..

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….