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.”
“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.
Q. How survivable is TNBC? What Is the risk of recurrence?
One of the top research questions that gets people to my blog is: Can you survive triple negative breast cancer. That breaks my heart, as I imagine a woman sitting alone at her computer, looking to the internet for help, terrified she is going to die.
And some version of this concern was included in your questions. This is the bottom line, isn't it? Can we survive?
The short answer is, yes, this disease is survivable. And most women do survive it. This is a disease to take seriously, and it's important to follow the treatment regimen your healthcare team suggests. But, the majority of women with non-metastatic TNBC survive it and go on to live full lives.
There are now more than 80 clinical trials focused on TNBC, many of them on metastatic disease. So, I am extremely hopeful that we'll find successful treatments for this disease even at its most advanced stages.
We'll look at the numbers soon, and we'll deal with survival and risk of recurrence together.
First, some numbers on statistics for TNBC: In general, survival rates decrease with larger tumors and those with affected lymph nodes. But, after three years, the chance of recurrence of TNBC drops significantly. And after five years, the risk of recurrence of TNBC is actually lower than for other forms of breast cancer.
But, statistics give us a sense of one group of people with specific traits and treatments. They do not translate directly to everybody.
The more we know about the genetic makeup of breast cancer, especially of TNBC, the more we realize that our cancers may be as unique as our DNA. So the only real statistic that holds true is our own.
It wasn't until 2005 that researchers used the term triple negative breast cancer, essentially naming a new subset of cancer. This was the result of the discovery of the human epidermal growth factor receptor HER2/neu in the 1980s.
Studies on HER2/neu led researchers to a web of subsets within subsets, including TNBC and HER2 positive breast cancer. And this refined our understanding of breast cancer as a whole, demonstrating that this is a complex disease fueled by a multitude of factors.
And current research on the genetic makeup of breast cancer will likely lead us to more and more subsets of TNBC so that we might soon be talking about quadruple or quintuple or sextuple negative breast cancer.
Because TNBC is a relatively new disease, we lack long-term studies on it. Much of the research I will present here will be on estrogen negative disease or estrogen negative and progesterone negative. Many of these studies either did not have HER2/neu information or did not use that data, because at the time, they did not realize its significance.
I'm sure you all followed the news a few months ago when researchers with the Cancer Genome Atlas Program announced that basal-like breast cancers, many of which are triple negative, bear a molecular similarity to ovarian cancers. In fact, basal-like breast cancers are more like ovarian cancers, they said, than like hormone positive breast cancer.
Many of the reports I read about this research, though, assumed that all basal-like tumors are triple negative. TNBC is not synonymous with basal-like. Basal-like tumors are one subset of TNBC.
Some of the researchers on the genome project have said that basal-like cancers might be a different disease all together from other forms of breast cancer.
Okay. So, survivability. I would like to briefly show you what the research says about survival in relation to common treatments for TNBC, adjuvant chemotherapy, which is done after surgery, neo-adjuvant chemotherapy, which is done before surgery, lumpectomy and mastectomy.
My goal here is to provide a snapshot of research with a goal of demonstrating survival rates
A large body of research demonstrates that chemotherapy is especially effective against hormone negative breast cancer, and newer forms of chemo are better than older forms. One groundbreaking study demonstrated that advances since the 1980s in chemotherapy after surgery—adjuvant therapy—have significantly reduced the risk of death in estrogen negative patients with affected lymph nodes.
Newer chemo regimens yielded a five-year overall survival rate of 83 percent. This compared to 66 percent for earlier treatment.
Newer regimens of chemotherapy that were studied were high doses of Cytoxan and Adriamycin every two weeks plus Taxol. Older forms were low doses of Cytoxan and Adriamycin plus Fluorouracil every three weeks.
Another study on adjuvant therapy for patients with stages I, II, and III, done at the MD Andersen Cancer Clinic and published in 2008, showed a surprisingly low recurrence rate for hormone negative breast cancer. Nearly 93 percent of the women with stage one had no recurrence within five years, and nearly 89 percent had no recurrence after ten years.
Eighty-nine percent of those with stage two had no recurrence within five years. And 87 percent of those with stage three had no recurrence within five years. In this study, women with hormone negative breast cancer actually did better than those with hormone positive.
What about neo-adjuvant chemo for TNBC, chemo before surgery? In another study from MD Andersen, women with a complete pathological response, no sign of cancer after chemo, had a three-year overall survival rate of 94 percent. And even those without a complete pathological response had encouraging overall survival rates: 68 percent. Chemotherapy regimens varied for those studied include and included Fluorouracil, Adriamycin, Cytoxan, Epirubicin, Paclitaxel and Docetaxel.
The question of which regimen is best for you is for a healthcare provider to answer. There are some standard chemotherapy regimens for TNBC, and your healthcare team will help determine which works best in your case.
Some of the most regularly prescribed regimens for treatment of hormone negative breast cancer are AC, which is Adriamycin and Cytoxan, an anthracycline and an alkylating agent. This had one been the gold standard for breast cancers that had not spread to the lymph nodes. This is the therapy I had, four treatments every two weeks of Adriamycin and Cytoxan.
Some cancer centers are replacing it with therapies that replace the Adriamycin with a taxane, and that's TC, which is a taxane plus an alkylating agent, usually Cytoxan, which can be less toxic than Adriamycin.
ACT is an anthracycline and an alkylating agent plus a taxane. The anthracycline and alkylating agent, usually Adriamycin and Cytoxan, are given first, followed by a taxane, usually Paclitaxel or Docetaxel. This is used for node-positive or metastatic breast cancer.
TAC is an anthracycline and an alkylating agent plus a taxane, usually administered concurrently. This is usually for aggressive breast cancer, large locally advanced or metastatic.
And, finally, CMF, which is a combination of Cytoxan, Methotrexate and Fluorouracil. This was one of the earliest drug regimens, but it is being replaced by more modern treatments. However, it may be still used for women who cannot tolerate newer chemo drugs.
And research will continue to lead us to new treatments. Because of the similarities between ovarian cancer and basal-like breast cancer, current treatments for ovarian cancer, which are a little less toxic, might work for TNBC. These typically combine a platinum agent such as Carboplatin or Cisplatin with a taxane such as Paclitaxel or Docetaxel.
Now, to surgery:
A lumpectomy with clear margins plus radiation is as successful in reducing risk of recurrence as a mastectomy for tumors under four centimeters according to landmark research published in the New England Journal of Medicine that followed women 20 years after surgery. Note that tumors four centimeters or larger would necessitate a mastectomy, and those without clear margins will require additional surgery.
In more current research, which analyzed tumors by receptor status, early stage hormone negative tumors actually responded better to a lumpectomy plus radiation than to a mastectomy.
This study should be considered just the beginning of the discussion, though, not the final conclusion. But, it does indicate that lumpectomy plus radiation may be at least equal to mastectomy for early stage tumors. And clear margins are especially important for patients with triple negative breast cancer.
Q. What about long-term chemo side effects?
We've all been following the news of Robin Roberts’ diagnosis of MDS after successful treatment for TNBC. As Robin's fans, we wish her the best and keep her in our prayers and were heartened by her response to bone marrow treatment.
We also understandably worry about the long-term effects of our own treatment. Could this happen to us?
The fact is that chemotherapy comes with some risk of secondary cancers—cancers that are actually precipitated by the chemotherapy treatment, but these risks are low. And other factors such as genetics and family history play a role, as well.
Which drugs are involved? In the specific case of MDS, some common drugs for TNBC treatment may be implicated, especially Adriamycin and Cisplatin, and to a lesser extent, Cytoxan. The risk is greater for higher doses, longer treatment times and dose dense regimens.
Other long-term side effects include a low risk of cardio dysfunction with Adriamycin and Avastin and osteoporosis and bone loss related to Cytoxan. And this is usually because Cytoxan can cause early menopause.
But, effects such as MDS are really not likely. They are a slight possibility. They're not a probability. They are a possibility.
When somebody with Robin's popularity has a side effect, it is a big news story, so we get intense multimedia coverage about the issue, which makes it seem far more common than it is. In fact, some media analysts have criticized the coverage of Robin's MDS because it presents a false picture of reality.
The fact is that the risk is low. Researchers are constantly improving chemo drugs, and these drugs save our lives.
And we can improve our overall response to chemo with exercise that builds our hearts and bones and a healthy diet that strengthens our immune system. And make sure you have enough calcium, especially from natural sources such as milk and cheese.]
So, where can I get more information on chemo drugs? This is an awful lot to digest.
Some sites I like:
Chemocare (From The Cleveland Clinic Cancer Center in affiliation with Scott Hamilton)
Drugs. com (From Wolters Kluwer Health, American Society of Health-System Pharmacists, Cerner Multum, and Thomson Reuters Micromedex.)
MedicineNet (Affiliated with WebMD)
MedlinePlus (From the National Institutes of Health and the National Library of Medicine)
Q. Does a low-fat diet really help? Is there clinical evidence to prove that?
The evidence here may seem contradictory with major studies coming to different conclusions. But, to me, arguing about this study or that gets us nowhere.
The fact is that high levels of dietary fat are linked to a multitude of diseases such as diabetes, heart disease and other forms of cancer. It can lead to weight gain, which can increase our health risk for other problems such as arthritis. So, cutting fat is just good for our overall health.
It is not a magic bullet, however, that will absolutely fend off triple negative. There is no such thing.
But, a low-fat diet is one fairly easy step toward overall good health, and a healthy body can help you fight disease.
We do know that a low-fat diet results in weight loss, which was demonstrated in the Women's Intervention Nutrition Study, which may be the study that motivated this question. In it, post-menopausal women with early stage estrogen negative cancer on a low fat diet of 32 grams of fat daily lost weight and reduced their risk of recurrence by 42 percent compared to those who were not on a low fat diet.
But, what we don't know is if the risk of recurrence was reduced specifically because of the low fat diet or if it was because of the weight loss that the diet brought. And this research studied estrogen negative patients, not specifically TNBC patients. So, it might need to be replicated with women with TNBC.
And in fact, the Women's Healthy Eating and Living Study found that reducing dietary fat alone did not reduce risk of recurrence or death. But, an overall healthy diet high in fruits and vegetables, five servings a day, did provide a benefit. Again, we don't know if this benefit came because of the diet itself, the weight loss it brought or some other combination of factors.
So, my advice is to not rely on just one element of a healthy diet such as fat. Look at your overall eating habits. A healthy diet should be high in fruits and vegetables, five to seven servings a day, whole grains, beans and nuts, and it should be low in saturated and trans fats.
But, in terms of fats, not all fat is created equal. So, it's important to pay attention to the type you include in your diet.
Saturated fats are “bad” fats. These are in lard and butter and cheese. Trans fats— those in vegetable shortening and some margarines, packaged cookies, fries, chips—are also “bad.” We should avoid “bad” fats as much as we can.
“Good” fats, however, should have a place in our diet. These include mono unsaturated— in olive oil, canola oil, nuts and avocados—and poly unsaturated fats—omega 3 fats that are in fish and plus walnuts, flax seeds, canola and soy bean oils and the omega 6 fats that are in soybeans, safflower, corn oils, nuts and seeds. And I'd emphasize mostly the nuts and seeds parts of that.
But, recognize that even good fats pack on the calories. So, go with moderation there, as well.
Q. Has exercise been clinically proven to reduce our risk of TNBC?
Exercise has consistently been associated with a reduced risk of recurrence of all forms of breast cancer, including triple negative. And like a healthy diet, it helps our overall health and builds our defenses against a host of other diseases from diabetes to Alzheimer's. Plus, exercise just helps clear your mind and boost your energy, which are benefits enough in my mind.
Again, though, we don't know whether it is the exercise itself that is the mechanism or the weight loss it brings or a combined influence of exercise and diet or some other factors.
The entire area is getting the research it needs, and we may ultimately have some clearer answers.
But, let's look at some of the research that we've had in the past. Premenopausal women who exercise the most had the lowest incidence of both triple negative and hormone positive breast cancer according to research published in 2011.
But, consider this: The reduced risk was tied to a low body mass index. Those least at risk had a BMI of less than 23.75, and that is about average—23 to 25 is about average. Those most at risk had a BMI over 31, which is considered the beginning of obesity.
So, again, was the reduced risk linked to the exercise or to the weight loss? We just don't know.
And how much exercise is enough for you to lead you to that weight loss? Whatever you can handle.
According to the California Teachers Study, long-term exercise, both strenuous, like running, and moderate, which includes a brisk walk, was associated with the reduced risk of estrogen negative breast cancer. The strongest influence comes from exercise from more than four hours a week continued for more than a year.
Okay. How can I start exercising when I feel awful? I completely understand this business of feeling awful. If you are in the midst of treatment, go slowly for now: a short walk followed by a longer walk, then a longer one, whatever you can handle. Exercise can eventually become a given in your daily schedule if you are physically up to it.
And weight loss experts prefer to talk about physical activity rather than exercise because it is more inclusive and less overwhelming. It includes everything from mowing the lawn to jogging.
And here's how to make it happen. First, do what you enjoy. Don't decide that you will jog every morning if you truly hate to run. Walk instead. And look for scenery that can help divert your attention.
If you are not up to rigorous walks, do what you can. Exercise early and often. If at all possible, go for that walk first thing in the morning before the excuses of the day build up and before you're too tired to care.
If that doesn't work, add a little physical activity to your day whenever you can, maybe a walk after breakfast or playing with the kids or grandkids in the afternoon.
Find a support system. Look for an exercise buddy. Time goes by so much quicker if you are jabbering with a friend. Plus, you're more likely to show up for that evening walk if somebody's waiting for you.
And finally, get a dog. When Bowzer needs a walk, that's that.
Q. How do I find a TNBC expert to treat me?
A good healthcare team is essential, one that is informed and committed and pays attention to your specific case and your needs.
A good healthcare team is essential, one that is informed and committed and pays attention to your specific case and your needs.
This should include an oncologist, oncology nurses, the radiation oncology staff and a nurse navigator or advocate to help you process this all. A dietician or nutritionist would also be especially helpful.
A good team does not need to be TNBC specific. A qualified cancer specialist should be aware of the best treatments for TNBC.
In most cases, you will find the most comprehensive care in a clinic that is dedicated to cancer care, which can be especially difficult for women in rural areas. But, this is one case in which home grown may not be the best. A hospital associated with a university medical school can help assure that your team is up to date with new research.
U.S. News consistently rates the best cancer centers. They give you the top 50, but then they also offer numerical ratings of about 900 other hospitals in the United States. I don't think we'll be surprised with the top five: MD Andersen, Memorial Sloan Kettering, Johns Hopkins, the Mayo Clinic and Dana Farber, Brigham and Women's Cancer Center.
But this does not mean that your cancer center close to you cannot do a good job. Just do a little bit of research and make sure you've got that good healthcare team.
Q. Can you talk about the fact that research on cancer prevention is not helpful to those of us who are already have the disease?
You know, actually, I think it is.
I look at cancer prevention stats as similar to stats on reducing risk of recurrence. If researchers have an idea of what might prevent cancer to begin with, I see that as hope for preventing a recurrence.
Q. What are some recommended websites for keeping up to date on the latest treatment news for TNBC that are not overly scientific nor overly simplistic?
These are some of my favorite sites:
The Triple-Negative Breast Cancer Foundation is focused entirely on TNBC, with research data, background information and perspective, special events, presentations, and message boards.
Living Beyond Breast Cancer regularly sponsors webcasts on triple-negative, available as transcripts and podcasts.
Breastcancer. org offers broad-based information on all forms of breast cancer, with data on diagnosis and treatment.
Positives About Negative is my blog, focused on triple-negative and other forms of triple-negative breast cancer.
The National Comprehensive Cancer Network provides guidelines for treatment of women with breast cancer based upon best available evidence. Updated as new information becomes available.
The National Cancer Institute presents comprehensive information about all kinds of cancers and also lists available clinical trials.
The San Antonio Breast Cancer Symposium http://www.sabcs.org is an annual international forum, with the latest research from clinical trials. Abstracts are available on their website.
There is much more I could add, but I hope I have at least addressed your biggest questions. I will provide the Foundation with all the links I have included in this presentation, and I have hope
--hope I have helped you at least a little. And I wish you all well. I have tried to deal with many of these
issues in my book, and I hope it helps.
Now, I will end with a virtual hug. Take care, and thank you for listening. And thanks to the Triple Negative Breast Cancer Foundation for providing me with this forum.
(Find the full webinar here.)
Please consider a donation to Positives About Negative to keep this site going. This work is entirely supported by readers. Just click on the Donate button in the right of the page. Thank you!
Read more about TNBC in my book, Surviving Triple-Negative Breast Cancer.
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This is the best overall summary of the support and information that a TNBC can read- don't miss it!
Thanks so much to Pat!
As a 3-year TNBC survivor, I loved reading this blog post and the scientific information and practical common sense approach about TNBC.
It certainly makes me feel more connected to a special group of women.
Thank you very much, Pat.
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