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(Un) Common Knowledge Transcript

Below is an edited version of the webinar I presented through the Triple-Negative Breast Cancer Foundation October 16, 2012. You can still get the actual webinar on the Foundation’s site. It was based on questions sent in from women with TNBC.  

I was diagnosed with hormone negative breast cancer in 2006, and I’ve been studying this disease since then, reading research papers, interviewing experts and writing about TNBC, cancer in general and other broad health topics such as nutrition and exercise.

As a health journalist, I’ve been able to talk with oncologists, psychologists, dieticians, exercise specialists and researchers on everything from chemo brain to the benefits of acai. I have learned a great deal from them.

More important, I have visited with hundreds of women with TNBC through this blog. So, I know what it is like to walk this road, and I think I understand at least some of what you are going through.

It is this last perspective, yours, that I keep foremost in my mind.

I’m not a doctor.  I’m one of you.

Now to the questions:

Q. How do I manage the stress of TNBC plus family and job strain?

Stress hits all of us at one time or another after diagnosis, during treatment and as we face life after cancer. I could talk about this all month and not get it all in.

So, I will briefly discuss three areas — juggling everyday life, finding support and managing worries.

Our lives keep going even when we get sick. The kids need to get to school, the toilets need cleaning, we need to pay the — we need to work to pay for all of this. And some of us have other family members with health issues to worry about, as well.

This is, in fact, overwhelming. So, you have to ask for help, more than once, of many different people.

Recognize that some people are as helpful as the day is long, and some simply aren’t, and most are in between. So, if somebody disappoints you, don’t think that everybody will do the same thing. Ask somebody else.

And be specific. You will get many people saying, let me know if you need help. Let them know with details. Can you pick Lily up after preschool tomorrow? I hate going to chemo alone. Would you come with me? It will give us a good chance to chat.

Find a supportive friend with whom you can cry, fret, vent and just emotionally exhale or laugh a lot, laughter is such good therapy, or discuss this disease with them and help find clarification in your own mind.

We’ve all made good friends online who can send us virtual hugs. I do it all the time, so let me know if you need one. But, it’s good to get an in person hug, as well.

Now, to worry. I believe there is stress that is specific to TNBC, and there is some research to support that. In a survey of 989 women with breast cancer, those with estrogen-negative breast cancer reported the highest level of stress, as did Black and Latino women.

But, this leads us to a chicken or egg question. Did the stress lead to the cancer or did the cancer lead to the stress?

The survey did not test for this, but the research does indicate that stress may be more specifically associated with TNBC than with other breast cancer subtypes.

And this is tied to something that bothers me every time I read about this disease in a research paper or on the news, because we often use these words lethal, deadly, especially aggressive.

TNBC-related stress then can be especially heightened by not having a plain old breast cancer but one that is characterized with doctors, researchers and writers as especially deadly — as though we thought there were other kinds.

Look at this recent post on my Facebook page in which I ranted about my frustration with journalists and researchers who use these terms and imply that the disease is automatically a killer. I got a surprising result. My TNBC women popped up immediately with responses. Women agreed that hearing those words adds to their stress.

Some typical responses:

“Every time I read those phrases, my heart skips a beat.”
“I do get very depressed and scared when I read terms such as particularly deadly.”
“Gets me every time, makes me get a lump in my throat.”

And because we are dealing with an especially mean disease, we worry that we have to do everything, everything, everything we can to combat it – become organic vegetarians, and get two hours of exercise a day, and meditate and read medical books and take every vitamin and supplement known to humankind and paint the kitchen.

Okay, I exaggerate, a little. But I have noticed that women with this disease can be extremely hard on themselves by trying to take on the world of healthy eating, living, thinking and being all at once, all fabulous goals, but you can’t ever do everything at once, especially when you have other responsibilities to manage, as we all do. So, don’t try to do and be everything.

Look for balance. 

We will talk about diet and physical activity in a minute, but in all things, go for moderation and balance. Don’t try to change your lifestyle on a dime. Go slowly and implement changes bit by bit.

Cut out some sugary goodies and processed foods like doughnuts, colas, cookies, potato chips and French fries. Those don’t do anybody any good. But, leave yourself some treats. Don’t try to become the Mother Teresa of health foods over night.

If an ice cream cone or chocolate malt gets you through the day right now, that is just fine. And you might need to get through treatment first before you go for significant lifestyle changes. One step at a time.

Another root of some of our stress, I believe, is the thought that we caused our cancer. We didn’t eat well enough, we drank too much, exercised too little, took on too much work.

Okay, that was me. But, seriously, one of our first thoughts when we are diagnosed is what did I do to cause this? That’s a decent question to ask in terms of modifying your behavior to reduce your risk of recurrence, but don’t beat yourself up for not having lived a perfect life up to this point. And don’t try to be perfect now. Phew, talk about stress.

You did not cause your cancer.

You can reduce some of your stress by getting offline. Shut down the computer and go do something else. Yes, this seems ironic coming from a person talking to you online. But, consider limiting your computer time. Set an alarm to go off in a half hour, and make that your stopping point. You can spend hours sucked into the ether of the internet, and it is just not a good use of your time, your mind or especially your soul.

Plus, it is easy to soak up other people’s stress. When I was going through treatment, I could physically feel my stress building online because I was reading about this person’s TNBC recurrence, that person’s side effects and the death of a favorite online friend. Worries that never before had occurred to me suddenly loomed as real possibilities. I shut off the computer.

Take the time you’d use online and give yourself a break. Brew a cup of tea, and find a pleasant place to drink it, outside if possible, or inside with some music. Do nothing but enjoy the tea, and take deep breaths. When the stress intrudes, push it away with a deep cleansing breath. I once posted a simple note on my blog, breathe in, breathe out, and think of something beautiful. I was astounded at the emails I got on that one. Apparently, we need to be reminded to breathe. Try it now. Breathe in, breathe out, breathe in, breathe out. Ah, doesn’t that feel good? And the thing about a tea break is it only needs to last as long as it takes you to drink the tea. So, it does not require a huge planning or a time commitment, but it gives you an important breather, literally.

Just a little activity also will help reduce stress. The activity itself calms our bodies, but going off and doing something also reboots our mind into thinking about something other than taxanes versus anthracyclines.

And research on breast cancer patients has shown that going outdoors helped clear their minds and helped them think better.

Yoga is an especially helpful stress reliever, helping us sleep better and relieving fatigue. Yoga uses deep breathing and stretching techniques that can be low impact and easy to do when you’re lacking energy. I do a 20-minute morning routine that calms me like almost nothing can, and it takes less time to do than follow a new thread on a message board.

And, finally, don’t turn to alcohol to reduce stress. Alcohol may calm us for a minute, but it causes a host of problems later on including increasing our cancer risk. It leads to poorer sleep and nervousness when the initial effects wear out. So, it can actually increase our stress.

Again, moderation. A glass of wine occasionally is a nice break. It should not, however, become a habit or a necessity. [Editor's Note: Research has consistently shown that regularly drinking alcohol increases a woman’s risk of breast cancer. Results from a new study support the connection between regularly drinking even moderate amounts of alcohol -- as little as one drink per day -- and cancer risk: New Study Adds More Support to Connection Between Risk and Regularly Drinking Any Amount of Alcohol]

Breastcancer.org will continue to post questions and answers from Pat’s (Un)Common Knowledge Transcript. You can find the complete transcript on Pat’s blog, Positives About Negative.

This post was borrowed with permission from Pat's personal blog, Positives About Negative. Pat is the author of Surviving Triple Negative Breast Cancer and the co-author of The Magazine From Cover to Cover, also published by Oxford. She has been a magazine writer, editor, consultant, and professor for more than 35 years. She headed Drake University's magazine sequence for 22 years before taking over as director of the School of Journalism and Mass Communication in 2004. In May 2006, Pat was diagnosed with early-stage hormone negative breast cancer and retired from Drake in 2007 to focus on health writing and her health. She had surgery, chemotherapy, and radiation, and is now healthy, fit, and cancer-free.

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