Tag Archive for: BCAM

Breast Cancer Awareness Month and Its Many Shades of Pink (and Blue)

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We are more than half-way through Breast Cancer Awareness Month (BCAM) – impossible to miss given the pink ribbon avalanche that arrives each Fall. While there is no denying that BCAM has played a significant role over the past two decades in raising public awareness of breast cancer, there is nevertheless growing criticism of its off-balance approach to awareness-raising, with many key messages becoming lost in a sea of “pink-washing.” 

“BCAM is a 2-sided coin in our community,” states Jean Rowe, Director of Support and Provider Engagement at The Young Survival Coalition. On the one hand, she explains, celebrating successful treatment outcomes and raising awareness is important, but “on the other side, expectations that come with the pink ribbon in October can be overwhelming, isolating, infuriating and bewildering.” 

The pink ribbon, so long a symbol of breast cancer awareness and support, has become for many a symbol of what’s missing from the BCAM narrative.  When I first pinned a pink ribbon on myself,  I was newly diagnosed with breast cancer. Back then, I felt that wearing a ribbon was a symbol of solidarity, and I wore it proudly. Looking back, I now see that my view of breast cancer was one-dimensional. Standing today on the other side of cancer I see a broader picture, a richer landscape of many shades beyond pink.

A Whiter Shade of Breast Cancer

For Siobhan Freeney breast cancer is not pink. “When I see pink I’m reminded of all things feminine, “ she says. “My delayed breast cancer diagnosis resulted in a mastectomy. There’s nothing feminine or pink about that. I see breast cancer as the elusive ‘snowball in a snowstorm’ because my breast cancer, all seven centimeters of it, was missed on consecutive mammogram screenings. I know now that I had extremely dense breasts, this caused a masking effect – white on white.”

Breast Cancer Shaded Blue

Much of the criticism of BCAM centers on breast cancer campaigns which over-sexualize the disease, equating breasts with womanhood and femininity. Rod Ritchie, who was diagnosed with breast cancer in 2014, points out that “October is a bad time for male breast cancer survivors because the trivialization and sexualization of the disease by the pink charities reinforces public awareness that breast cancer is gender specific.  Since there’s little attempt to educate men that they need to be aware of symptoms too, we are diagnosed later and have a poorer prognosis.” 

Ritchie suggests “adding some blue to the pink, encouraging research on us, and screening those with a genetic propensity. Reminding the community that this is a genderless disease will give us a chance to receive an early diagnosis and therefore a better prognosis. We deserve equality.”

Metastatic Breast Cancer: The Other Side of BCAM

Learning about metastatic breast cancer (MBC, also called stage 4, secondary breast cancer (SBC) or advanced breast cancer) from online blogs and social media networks was revelatory for me. As Lisa de Ferrari points out, “although breast cancer has been commercialized and is often presented in a way that seems to minimize the seriousness of the disease, the reality is that deaths from this disease remain extremely high.”

MBC has been referred to as a story half-told, the other side of BCAM we don’t hear enough about. “Every Breast Cancer Awareness Month the huge focus is on awareness of primary disease. There has been little focus on secondary breast cancer and the only day for awareness is 13th October,“ points out Jo Taylor. “Awareness of SBC needs to be across the whole month.”

Nancy Stordahl is unequivocal in her criticism of the failure each October to adequately raise awareness of MBC. “Despite all the pink, all the races, all the pink ribbons, most people still know little or nothing about metastatic breast cancer,” she writes. “No wonder so many with metastatic breast cancer feel left out, isolated, alone and yes, even erased.”

How To Honor All Sides of the BCAM Coin

This article is not meant in any way as a criticism of those for whom wearing a pink ribbon is  meaningful. I  am grateful that the original pink ribbon movement has brought breast cancer out of the dark ages when it was taboo to even mention the words “breast cancer” aloud.  However, time has moved on, and it is time to challenge the singular narrative of breast cancer as a female only disease wrapped up prettily in a pink ribbon. 

So to quote, Gayle A. Sulik, a medical sociologist, and author of Pink Ribbon Blues,  “this is not a condemnation of anyone who finds meaning in the ribbon or public events. It is a call to broaden the discussion, re-orient the cause toward prevention and life-saving research, and acknowledge the unintended consequences of commercialization, festive awareness activities, and the lack of evidence-based information that makes its way to the public.”

It’s important to honor your feelings and emotions at this time. If you want to celebrate BCAM, celebrate; if you want to sit out this month or use it as an opportunity to educate others in a different way, then do that. In the words of Rowe, “Everyone gets to experience BCAM the way in which they need and want to.”

However, I will add to this that whichever way you choose to honor this month, be more questioning. As MBC patient advocate Abigail Johnston says, “ask if the pink ribbon represents the community you are trying to reach before using it automatically. Be open to understanding that not everyone identifies with the same images and concepts.”

Perhaps consider wearing the more inclusive green and teal ribbon designed by METAvivor. To highlight the uniqueness of the disease and show its commonality with other stage 4 cancers, METAvivor designed a base ribbon of green and teal to represent metastasis. “Green represents the triumph of spring over winter, life over death, and symbolizes renewal, hope, and immortality while teal symbolizes healing and spirituality. The thin pink ribbon overlay signifies that the metastatic cancer originated in the breast.”

Also use this month as an opportunity to broaden your understanding of breast cancer awareness. In the words of Terri Coutee, founder of DiepCFoundation,  “Without the metastatic community, I cannot understand, learn, or appreciate their experience of living with breast cancer. The men in the breast cancer space who are living with or have been treated with this disease have amplified their voices over the years to level the breast cancer awareness campaign to let us all know, breast cancer does not discriminate.”

Above all, don’t let breast cancer awareness in all its many shades be for one month alone. “When I began my advocacy, I hopped on the October bandwagon to bring awareness to a disease that has affected me, my own family, and dear friends too often, “ says Terri. “ Now, I look at it as only one month out of a year we need to bring awareness to latest studies in oncology, clinical trials, surgical best practices, emotional recovery, support, all mixed in with a bit of gratitude for the friends I’ve made along the way and to mourn those I have lost.”

Fact or Fiction: 10 Common Breast Cancer Myths Busted

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October is Breast Cancer Awareness Month, and while many of us may think there is already plenty of awareness of breast cancer these days, it’s quite surprising how many myths exist alongside the facts.  Some breast cancer myths still continue despite a lack of evidence. A survey found that agreement with the phrase: “It seems like everything causes cancer” is on the increase. The danger is that when people believe this, confusion and misinformation about risk factors also increase. This can lead to unnecessary worry and can even hinder good prevention and treatment decisions.  So let’s untangle the facts from the fiction by busting ten of the most common myths which persist about breast cancer.

 

Myth #1: Finding a lump in your breast means you have breast cancer

Fact: Most breast lumps are caused by benign (noncancerous) changes, cysts, or other conditions.

Breast tissue is changing all the time because of fluctuating hormone levels, especially during times of menstruation and breastfeeding. It’s important to be aware of how your breasts normally look and feel, and know what changes to look for.

Take Action: While most breast lumps will not turn out to be cancer, lumps that feel harder or different from the rest of the breast (or the other breast), or change over time, should always be checked by your doctor.

 

Myth #2: Feeling pain in your breast is a symptom of breast cancer

Fact: Most breast cancers do not cause pain in the breast (although some do).

Many women experience breast pain or discomfort in the week leading up to their period. The pain usually goes away after menstruation.  Other breast conditions, such as mastitis (an infection of the tissue of the breast that occurs most frequently during breastfeeding), may cause a more sudden pain.

Take Action: If you have breast pain that is severe or persists and is not related to the menstrual cycle, you should be checked by your doctor.

 

Myth #3: Breast cancer is a hereditary disease

Fact: Only 5% to 10% of breast cancers are thought to be hereditary. The other 90% are largely due lifestyle and environmental factors. 

The risk in a person believing this myth is that they might think there is nothing they can do to prevent breast cancer if it is already in their family. Genetic testing can help you understand your inherited risk and allow you to make choices about your future care.
Some high-risk women also choose to have a prophylactic mastectomy to decrease their risk.

Take Action:  Cancer is a complex group of diseases with many possible causes, including lifestyle factors such as smoking, diet, and physical activity. Lower your risk of developing breast cancer by maintaining a healthy weight, exercising regularly, and limiting the amount of alcohol you drink.

 

Myth #4: Only women get breast cancer

Fact: While the incidence of breast cancer in women is significantly higher than in men, men can get breast cancer.

Many people don’t think of men as having breasts. In fact both men and women have breast tissue, although men have much smaller amounts than women. According to the National Breast Cancer Foundation, men carry a higher mortality than women do, primarily because awareness among men is less and they are less likely to assume a lump is breast cancer, which can cause a delay in seeking treatment.

Take Action:  Know the signs of male breast cancer. Symptoms include a hard lump underneath the nipple and areola and color change in the surrounding area.

 

Myth #5: Breast cancer only occurs in post-menopausal women

Fact: While it is true that the older a woman is, the higher her breast cancer risk becomes, breast cancer does occur in younger women.

Although breast cancer in young women is rare, more than 250,000 women living in the United States today were diagnosed with it under age 40[1]. In young women, breast cancer tends to be diagnosed in its later stages and be more aggressive. Young women also have a higher mortality rate and higher risk of metastatic recurrence (return of breast cancer in areas beyond the breast).

There is no effective breast cancer screening tool yet for women under 40, most of whom have dense breast tissue that prevents routine mammograms from being a useful screening tool.

Take Action:  Being breast aware is very important. Become familiar with how your  breasts normally look and feel and, if you notice a change, you should see your doctor as soon as possible.

 

Myth #6: Wearing an underwire bra causes breast cancer  

Fact: Claims that underwire bras cause breast cancer have been widely debunked as unscientific.

According to the myth, wearing your bra every night or for too long daily prevents your pores from being able to breathe. Sweat accumulates and toxins build up which are believed to cause breast cancer. Another version of this myth is that wearing a bra which is too tight or sleeping in your bra can cause breast cancer. The American Cancer Society (ACS) states “we do not know of any epidemiologic studies published in scientific journals that suggest bras directly contribute to breast cancer.”

 

Myth #7: Deodorants can cause breast cancer

Fact: There is no evidence to back the claims that deodorants and antiperspirants cause cancer.

People sometimes worry about whether chemicals in common products such as cosmetics or toiletries could cause cancer, but there is no good scientific evidence to show that these products affect the risk of cancer. According to Breastcancer.org, even the strongest antiperspirant doesn’t block all perspiration in the armpit. Most cancer-causing substances are removed by the kidneys and released through urine or processed by the liver. Toxins are cleared by lymph nodes and not by the sweat glands.

Take Action: If you still have concerns about the link between antiperspirants and breast cancer, see the NCI fact sheet on Antiperspirants/Deodorants and Breast Cancer for more information.

 

Myth #8: Breast cancer is a single disease

Fact: Breast cancer is not one disease, but a complex group of different types of tumours.

Until quite recently, breast cancer was thought of as one disease, so everybody got much the same treatment, which led to overtreatment for some patients.  We now know that at a molecular level tumors act and respond to treatments differently.  Researchers have to date classified breast cancer into 10 different subtypes.  Having a more detailed system of tumor categories can help tailor treatment to individual patients and predict women’s survival more accurately.

 

Myth #9:  Stress causes cancer

Fact:  The scientific evidence that stress causes cancer is not conclusive.

Despite studies which show weak evidence of an association between stressful events and a diagnosis of cancer, many people still hold the belief that stress is a factor in causing cancer. It’s unrealistic to think we can avoid stress completely. Everyone feels stressed at some point in their lives. But long periods of stress can cause mental health problems such as anxiety and depression and can contribute to physical health problems such as high blood pressure, heart disease, and ulcers. It makes sense then to get our stress levels under control.

Take Action: Adopt healthier coping mechanisms, such as learning stress-management techniques, taking the time to eat healthily and exercising more.

 

Myth #10:  Mammograms cause breast cancer

Fact: While mammograms do involve radiation exposure, the dose used is extremely low.

A mammogram (an x-ray of the breast) currently remains the gold standard for the early detection of breast cancer. Mammograms can detect lumps well before they can be felt, and the earlier that lumps are caught, the better one’s chances for survival. While it’s true that radiation is used in mammography, the amount is so small that any associated risks are tiny when compared to the benefits.

Take Action: According to the National Cancer Institute, the standard recommendation is an annual mammographic screening for women beginning at age 40. Base your decision on your physician’s recommendation and be sure to discuss any remaining questions or concerns you may have with your physician.

To wrap up, certain myths about breast cancer, though inaccurate, can nevertheless seem to make sense when we hear them repeated often enough.  While some risk factors for breast cancer are out of our control, knowing and understanding our risks will help us make the best choices possible for ourselves and our loved ones.

[1] Young Survival Coalition statistics on breast cancer in younger women.

 

For information on galactocele, please check out the blog What is a Galactocele, and What Can I Do About It? and 12 Breast Cancer Myths And Facts You Should Be Aware Of

Six Lessons Learned From Breast Cancer

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“The period of greatest gain in knowledge and experience is the most difficult period in one’s life.”  — Dalai Lama

Writing in Oncology Times, radiation oncologist, Matthew Katz MD, described cancer as an illness of transformation. “Biologically” he wrote, “it represents a change in growth and homeostasis. Metaphorically, a cancer diagnosis can transform how you see yourself and the way you experience life afterward.” When the dust settles after the cancer storm has passed, it is not uncommon for patients to reappraise their lives. Cancer forces us to slow down and look at what really matters. Caught up in the routines of daily living, it is easy to avoid doing this; but cancer stops us in our tracks and pushes us to the edge of what is familiar. With cancer there is no hiding place; its sharp glare strips away pretence and artifice, revealing the true nature of our lives and relationships.

Cancer is an invitation to take stock and re-examine your life, to discover ways of leading a more meaningful and fulfilling life. Richard G. Tedeschi, PhD, professor of psychology at the University of North Carolina Charlotte, reports five common growth outcomes from interviews he conducted with trauma survivors.

  • A deepened appreciation of life.
  • Enhanced relationships with others.
  • An appreciation for personal strength and endurance.
  • Setting out on new pathways or pursuing new interests and opportunities.
  • Spiritual growth and development.

As part of breast cancer awareness month, I extended an invitation to six women to share what they have learned from their personal experience of breast cancer. Their answers to the question, “what did cancer teach you?” reflect the themes identified by Dr Tedeschi. The women’s experiences span a trajectory of breast cancer from recent diagnosis and active treatment, to several years’ post-treatment.

Elizabeth McKenzie, a licensed psychologist who lives in Seattle, WA, was diagnosed with breast cancer in 2012. She learned to appreciate the value of stillness and find healing in solitary pursuits.

“When I was diagnosed with cancer in 2012, I knew that I had just been enrolled in a crash course with countless learning objectives. Some of the lessons, however, have been unexpected.

I learned to appreciate stillness, the silence in life. I am an extroverted person. I work as a child/adolescent psychologist. I am married. I am a mother. I am a daughter and a sister. I have many friends. Before cancer, I thought that the foundation of my life was largely my connection with others. The time I was forced to be alone to heal from many surgeries for my own health, led to my pursuing other solitary pursuits, mindfulness meditation, nature photography, personal writing, and exercise.

Over time, I have learned that my individual experience was also part of that foundation; to have time alone to live in mindful stillness is a basic need for my mental and physical health, one that I had long neglected. In working on this solitary foundation, I have also strengthened my connection with others. I am now giving serious consideration to attending a residential mindfulness retreat, one that would require that I be silent, except for counseling with teachers, for 3-7 days. That is something that in the past, I would have considered myself neither able to do nor willing to give myself that kind of time. Today, I feel emotionally and physically ready for the experience of being by myself, with myself, surrounded by nature, for days on end. This gives me sense of peaceful willingness, a gentle hopefulness, in a life full of uncertainty.”

Becky Hogue, a PhD Candidate (Education) at the University of Ottawa, was diagnosed with breast cancer in 2014. Becky wanted to share a cautionary tale so others could learn from her hard-earned experience.

“When I think back about one thing that I’ve learned, it is that treatments change over time but advice is full of ‘old wives tales’ which are often based upon older treatments. This was never more poignant than during my last round of AC chemotherapy. Throughout AC chemo, I had been suffering from nausea. I knew from support group that people who tolerated it well only had nausea for three to five days. I had nausea for at least eight days. Given I was on a 13-day cycle, this meant more days with nausea then without. Now, my nausea was never really bad. When I complained to my oncologist, he asked me “when was the last time you threw up?” Never. My nausea was never that bad, it just lingered.

The folks at support group (especially those a year or so ahead of me) would talk about different nausea meds. The meds I was on were not the meds that everyone was talking about. I found myself wondering if I should be on different meds? In my mind, a change of meds would mean less nausea. I would tolerate the chemotherapy side effects so much better.

What I didn’t realize was that these different nausea meds were the old school meds. The meds my oncologist had me on were the new ones. People in support groups, and some of the older chemo nurses, were not familiar with the new meds. The recommendations I was getting about ‘what works’ were ‘old wives tales’, and I bought into them instead of trusting my oncologist.

For my last bout of AC chemo, I tried a different combination of anti-nausea meds. My oncologist was away, so his nurse practitioner changed my meds (in part because I asked for it). I’m sure that if my oncologist was there, he would have explained that I was on the new meds, but also that they were doing their job. I didn’t know the other option was the older option. I didn’t realize that the folk lore about the effectiveness was in part just because it was the older meds. The new meds had not been around long enough to be part of the lore. With the change my nausea was no better, but the side effects of the meds were much worse. I ended up with terrible mouth sores (so bad I needed liquid morphine to manage the pain). One of my biggest regrets regarding my treatment was that I changed anti-nausea meds for the last cycle of AC chemo.  I had forgotten my own advice. I had forgotten who I had decided to trust (my oncologist), and let the ‘lore’ effect my treatment.

This tale is meant to be a cautionary one. Not so much about seeking advice, but about remembering that people who have followed this path before you did so at a different time. The treatment options (and side effect management options) available to you today may not be the same ones that were available for someone else a year ago. Although older treatments may work, chances are the newer ones are better. Before changing treatment plans based upon what you are hearing on the net or in support groups, ask yourself ‘is this an old tale’? And finally, decide who you are going to trust, and trust them.”

Audrey Birt, a two-time breast cancer survivor, focussed on lessons of courage, connection and resilience.

“Cancer taught me I’m more resilient than I would have believed, it helped make me braver. It also taught me that life cannot be controlled. This made me more able to live in the moment and for the moment and that’s probably not so good for my bank balance but it’s great for my life balance in a way. It taught me to reengage with writing through my blog and in a funny way it changed my life and connection to others. But it also taught me my fragility and that’s a lesson I’m still learning, one day at a time!”

Author of From Zero to Mastectomy, Jackie Fox, has written of how breast cancer “gave me part of myself back”.

“One of the obvious benefits of cancer is reconnecting with friends and family, but old loves like art and music may reappear in your life as well. In my case, I started writing poetry again. I hadn’t written or published anything for nearly 20 years and I really thought that part of my life was over. I’m so grateful to have it back and I hope I never lose it again.”

Liz O’Riordan was diagnosed with breast cancer in July 2015. From her unique perspective as a consultant breast surgeon, she is learning what it’s like to be a patient from the other side.

“Being a patient in my own speciality has opened my eyes to a lot of little things that could be changed to improve patient care. I learned that the language of cancer is completely different for a patient compared to a doctor. I have been made acutely aware that some of the phrases I’ve used in clinic when breaking bad news, that I’ve heard others say, or come up with myself, now make me cringe. A lot of women get recalled from screening with tiny low grade cancers (<1cm), and I’ve said “If you’re going to get breast cancer, this is a good one to have”, or “You’re lucky that we caught it early”. All of these phrases were said with good intentions, to try and reassure the women that they were unlikely to die of their cancer, and would not need chemo. And most women are still in shock, so I never see them truly react to what I have just said. But no cancer is a good one to have, and no-one is lucky to get cancer. I will pay close attention to what I say to patients in the future.”

The final lesson is one of authenticity and integrity, something Eileen Rosenbloom who was diagnosed with breast cancer in June 2010, believes cancer cannot take away.

“Although I often felt like cancer was a thief that had taken everything from me, being so ill also created an opportunity to see what it could never take — the very essence that is me. Sometimes I’d look at my eyes in the mirror and think: There I am, right there. I’m still me. It felt empowering to realize no matter how dark things got, I still had control over some part of myself. My very essence remained intact, even if stripped down to a raw version without any frills.”

Whatever place you are at with a diagnosis of breast cancer, there are lessons to be learned. These will be unique to you; but you can also learn from those who have walked this path before you. Reach out to them, and lean on their experience to help make the way a little smoother for your own journey.