Thinking about BRCA during this important month…

It’s always good to remind ourselves of the real life risks of breast cancer during Breast Cancer Awareness Month. For me, getting out on the streets in October is so uplifting when I see the collectors dressed in their vibrant pink outfits, banded together and eagerly chatting to passersby.  Not only are they fundraising for one of the biggest ‘killer diseases’ in New Zealand, but they are also spreading awareness and reminding us to – check our boobies!

So lets for a moment shine a light on the 10% of breast cancers which are ‘inherited genetic breast cancers’. Why? Because those breast cancer gene carriers are able to drastically reduce their risk through preventative surgeries. In other words – stop breast cancer and ovarian cancer before they arrive!

I reached out to Mollie Erskine, Health Educator at NZBCF, and asked her to update me on her latest publishings relating to genes and inherited breast cancer information.

“The field of genetics is expanding and holds a very promising future. If you are tested positive for a gene associated with an increased risk of breast cancer you now have the power to make an informed decision.”

Read more about it here:  What I need to know about genetic risk of breast cancer?

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Closing note from Erskine’s story:   To find out more you can watch our latest webinar: Genetic Risk of Breast Cancer, or ring our 0800 BCNURSE line. If you already have a confirmed mutation, you may also want to take a look at the New Zealand Familial Breast Cancer Study.


 

Every now and then I come across a story about BRCA that I really want to share on my blog, and this is one of them. 

Last week at The Basser Centre, New York City, there was a BRCA storytelling night where 4 speakers joined to offer their own candid experiences with the BRCA Mutation. Read about it below…


Evening of Storytelling Speaks to Future of Cancer Research

BY BRITTANY LOVELY - PUBLISHED OCTOBER 09, 2018

“There are a few aspects of this story that are a bit unsettling. I’m sorry about that, but I’m not going to pull any punches, it’s a real story and if it’s going to be told, it has to be told the way it happened.”

This is how Rob Sorin opened his story at the “An Evening of Storytelling” event, presented by the Young Leadership Council (YLC) of the Basser Center for BRCA, part of Penn Medicine’s Abramson Cancer Center.

The room of sponsors, family, friends and colleagues were treated to a night of personal stories from three individuals touched by BRCA mutations. Each speaker touched on their personal journeys as a mother, a caretaker, and a single woman embarking into the dating world post-preventative surgery.

Each story was laced with humor and heartache, but they all spoke to the promising future that research will provide for future patients and the newly BRCA-positive population.

The Caregiver’s Perspective – 1 man’s BRCA story

Sorin told his own story from a caregiver’s perspective. His wife’s journey began in the early days of the BRCA discovery. A lawyer by training, Sorin found that his workplace skillset came in handy taking on the role of researcher.

“I was going to handle the mental task of being the advocate, doing all the research,” he said. “(My wife) was going to fight the physical battle. I was going to push her doctors to think about her case individually.”

Plowing through pages and pages of the latest research, at the time, gene testing was not on doctors’ radar. Though expensive and not covered by their insurance, it was a no brainer for Sorin and his wife to pursue since it could inform a new course of treatment. After chemo, Sorin’s wife, Helene, was scheduled for surgery.

Then, on a normal Tuesday morning, Helene went to work on Wall Street and the Towers fell mere hours later. Sorin remembers thinking, “I spent the last eight months doing everything I could to save her and for the next eight hours I thought I had lost her.”

Helene made it out of lower Manhattan, having ensured that everyone from her floor got out first. Her surgery was one week later.

He mentioned that while the role gave him a sense of control, of being part of the solution, as a caretaker he needed support as well. “I felt it was my responsibility to be positive and always offer a pep talk when Helene was scared. But I think as a spouse my fear was no less intense than Helene’s,” Sorin said. “I decided to see a therapist who was an expert in this area. However you can, I think it is very important for a caregiver to have a caregiver.”

Helene went on to carry the torch in the Salt Lake City Olympics and live for 12 years cancer-free. A self-identified lump led to another malignancy, a case so rare, doctors made a case study of Helene’s second fight with the disease.

After beating the disease for a second time, Sorin and his wife discovered the Basser Center. Their daughter, Jenny, decided to have her genetic counseling at the center and discovered that she is positive for the BRCA mutation.

“Unfortunately, cancer is complicated and there is an art to fighting it. The good news is that the science is growing and the art is shrinking,” Sorin said.

As Jenny begins her journey living with the BRCA mutation, Sorin says that his role as a caregiver has shifted. “Jenny needs to be empowered as a young adult to make her own decisions about her body. I’ll always be there and offer advice if she should ask, but ultimately, she will decide what is best for her. Most importantly, Jenny has knowledge and knowledge is power. Jenny has choices, and hopefully with more advances from Basser she will have more choices.”

READ THE OTHER BRCA STORIES HERE

 

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My NZBC Month Pink Post!

ANNA JOBSZ INSTA HERE

 

Pink & Blue – not just women?

Learning to live with the BRCA gene and what comes along with that gene in your life is a big task for anyone. But for me the biggest shock was realizing that this is not just a pink female thing. After all the breast cancer events I’d been to with my darling friend Helena and all our ‘pink’ crew – I hadn’t realized the implication of BRCA on males. But it was about to smack me in the face!

I originally tried to get tested for BRCA because my mum had experienced breast cancer twice, and we also had ovarian cancer on my grandmothers (maternal) side of the family. So I was pretty surprised to eventually find out the BRCA2 gene had actually been passed to me by my father who passed away in 1993 of stomach cancer. And around the time of my testing in 2015 my uncle (fathers side) was struggling with male breast cancer.

Then in 2016, not long after my own mastectomy, my brother was tested in Australia and confirmed he also has the family BRCA 2 gene. And I now know that my 4 year old son Carlo has a 50% chance of carrying the BRCA 2 gene, which weighs heavily on me as a mother.

So when I recently learned about this documentary Pink & Blue I was really excited about it.  I’m really hoping this award winning doco will come to NZ soon so that more people can gain knowledge about BRCA and it’s affects on women and men!

I will keep you posted when I find out about screening. Watch this space…

http://www.facebook.com/pinkandbluemovie/

 

More about Alan Blassberg the director here!

Soundcloud link to the documentary here!

And if you want to know more about BRCA1 & BRCA2 genetics, symptoms and treatments for men, check out the story below from this oncology nursing website.

http://www.oncnursingnews.com/publications/oncology-nurse/2018/march-2018/promoting-brca-awareness

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PROMOTING BRCA AWARENESS

I recall asking my mother’s oncologist in 1997, when BRCA gene testing was still in its infancy, about the possibility of testing her blood for this genetic mutation or freezing and storing her blood for future analysis. My mother was dying from recurrent metastatic breast cancer and, 5 years ear­lier, had been treated for primary ovarian cancer. As a fam­ily nurse practitioner, I was not only interested in this new testing for the sake of science but also personally concerned that my older sister, brother, and I might have inherited an increased risk of cancer associated with this genetic anomaly. My inquiry was dismissed with the nonchalant response that BRCA testing was just “too new to worry about right now.” In retrospect, a definitive result for my mother back then would have guided future healthcare recommendations for us.

After recently viewing the 2015 documentary Pink & Blue: Colors of Hereditary Cancer, I began to question why I had not sought genetic testing for the last 20 years. Pink & Blue not only educates the viewer about the BRCA gene mutations but also powerfully highlights the personal stories of both women and men with positive mutations, depicting their subse­quent journeys, including treatment, restoration, remission, or death. The documentary advocates that “knowledge is power” and speaks passionately about the need for increased awareness of genetic testing and breast cancer prevention.

One goal of Pink & Blue is to raise awareness of male breast cancer. Despite the overwhelming “pinkness” of the breast cancer world, men inherit BRCA mutations as fre­quently as women do. Regardless of gender, a parent with an inherited mutation has a 50% chance of passing it on to each of their offspring, whether the baby is a girl or boy.1 It struck me that if I were BRCA-positive, even my son could have a genetic mutation that might be transmitted to his children someday.

Up to 10% of all breast cancers may be linked to genetic mutations, with BRCA1/2 being the most common.2 A woman with a BRCA1/2 genetic anomaly may have up to an 80% lifetime risk of developing breast cancer, as well as ovarian, colon, skin, and pancreatic cancers. Although breast cancer is rare in men, the American Cancer Society estimated that about 2470 new cases of male invasive breast cancer were diagnosed in 2017 and that about 460 men would die from the disease.3The average lifetime risk of breast cancer in men is about 1 in 1000 (0.1%) compared with 1 in 8 (about 12%) for women. A man with an abnormal BRCA2 gene has a life­time breast cancer risk of about 8%, 80 times greater than that of the average man without a genetic mutation, and is 7 times more likely to develop prostate cancer than men without an abnormal gene.4 Although survival rates are simi­lar for men and women with the same stage of breast cancer, men are often diagnosed at a later stage. This is often because men did not report early symptoms and/or the cancer spread to adjacent structures due to less breast tissue.5 Healthcare providers routinely document medical histories and cancer risk of their patients, but many do not always refer high-risk patients, including men, for genetic counseling or testing.

Genetic counseling and subsequent testing require serious consideration. Some individuals may not wish to have addi­tional medical testing or recommended prophylactic sur­gery if faced with the knowledge of a positive result. Because genetic mutations affect all biological relatives, there may be emotional tension and fear within the family, factoring into decisions regarding marriage, childbearing, and career choices. Fear, hesitation, and doubt abound in the areas of employment discrimination; potentially higher health, life, and mortgage insurance rates; test reliability; and financial coverage for genetic testing. Individuals who may have posi­tive genetic mutations might also experience feelings of guilt and loss of control. However, the federal Genetic Information Nondiscrimination Act of 2008, along with many state laws, prohibits discrimination based on genetic information in rela­tion to health insurance and employment, although it does not cover life insurance, disability insurance, or long-term care insurance.6

In addition to films like Pink & Blue, many online resources address cancer risk. A risk calculator on Bright Pink, a national nonprofit organization (BrightPink.org), quickly pro­vides information regarding the user’s chances of developing breast or ovarian cancer. The Male Breast Cancer Coalition, a nonprofit organization, reminds the public that “men have breasts, too” and offers a related series (HISbreastcancer.org). Both organizations add blue to the traditional pink ribbon to recognize breast cancer in both genders.

Today, I am bold enough to pursue genetic counseling and testing for not only BRCA1/2 but also the comprehensive 34-gene panel that may identify my risk of as many as 8 dif­ferent cancers. My decision was based on neither my own 25 years’ experience and medical knowledge as a nurse prac­titioner nor my healthcare providers’ prompting. It was made after I viewed Pink & Blue and heard the powerful stories of people whose lives were positively changed by knowledge of their genetics. By taking the nonthreatening approach of consulting a genetic counselor, plus the simple act of sending out a freshly collected 1-cc sample of saliva, I will affect not only my health but also the well-being of my daughters, son, and grandchildren.

Some high-risk individuals might also be stirred to action by modalities such as film, social media, websites, and blogs. But why is it that we as healthcare providers do not consistently promote awareness of breast cancer risk to both women and men, as well as genetic counseling referral (when indicated) to our patients? When taking the family medical history, we all can address breast cancer risk, symptom recognition, and pre­vention. A caring, sensitive attitude is crucial to dispel myths and alleviate fears, especially those of a man who may feel emasculated by talk of self-breast exam, areolar masses, and nipple discharge. When indicated, providers must encourage patients with multiple breast cancer risk factors, regardless of gender, to consider genetic counseling and/or BRCA testing. For those who opt for testing, the results, whether negative or positive, not only deliver the power of knowledge but also afford healthcare providers the ability to make better manage­ment and treatment decisions.

Donna R. White, DNP, RN, CRNP, FNP-BC, is the director of graduate clinical faculty and clinical affairs at Duquesne University School of Nursing in Pittsburgh, PA.

The super-human parent juggle!

Sometimes I worry that what we see on social media isnt ‘real life’. We project the best versions of ourselves and try to look like super-humans, and often-times life can be so very different. That’s one of the reasons I wanted to do this story with the NZ Herald.

Being a single mum with a busy career is a full and rewarding life. I have many amazing supermum moments where I high five myself. Many days I juggle PR campaigns, run my beauty business, mentor juniors, make lego rocketships with my son, fit in a yoga class, cook an awesome dinner and fall asleep after meditating. But some days my car breaks down, my son is sick, technology is fickle and my work is so piled up so high that I don’t know where to start.

So when you start loading things on top of this, like major surgeries, recovery time, and trying to take care of children on your own – things can be pretty tough.  Through this blog I have met some amazing women. Many of them facing mastectomies and major surgery and most as single parents. I hope to see more general support available for these parents, and in paticular more short term benefit options so they can get through these tough times and avoid ending up on long term benefits.


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Single parents struggle in the face of illness

Prominent public relations specialist Anna Jobsz is calling for agencies to offer more support to single parents who undergo major surgeries or illnesses.

Jobsz has opened up about her struggle caring for her son alone, while also recovering from two major surgeries.

After discovering she had a mutated BRCA gene, in April 2016 Jobsz opted to have a mastectomy to reduce her considerable cancer risk.

Months later she had reconstructive surgery. All the while, she cared for her 3-year-old son full time.

Her family is overseas and Jobsz could depend on friends occasionally, but Jobsz was disappointed to be told by Work and Income New Zealand her only options were to receive a long term benefit, or nothing.

“I think most single parents want to keep working despite illness, and they don’t want to get into further debt because they take three weeks off work to recover,” Jobsz said.

“When I came home from hospital I would have friends come over the first few days if they could spare an hour or three away from work, which was a big help, but the hardest part was at night.

“My son would often wake up two or three times in the night because he was unsettled after I’d been away in hospital and at that point I could barely walk and I was still on heavy meds. Getting up at night and lifting him out of his cot was difficult mentally and physically.”

anna & Carlo first day homeShe recalled five days after leaving hospital having to take her son to his own surgery to receive grommets. They were at the hospital all day. The appointment had been a long time coming and she didn’t feel she could cancel.

“I had to drive him, and get him into the hospital in his pram, upstairs in the carpark, and help him through the day while I was on heavy meds and just wanted to sleep. I had waited months for him to get on the operating schedule for grommets, and his hearing was so bad, I had to go. Those moments are truly tough.”

Following her surgeries Jobsz was readmitted to hospital after contracting infections, and at that point the hospital appointed a social worker because they could see she was struggling. The worker said a WINZ staffer would visit her to explore options, but no one showed up, Jobsz said.

After following up she said she was told to call her family, or go on a long term benefit. Dismayed to discover there is no short term option available, she’s calling on the agency to introduce one for solo parents who find themselves in her position- juggling work and a child, and extra costs including medication, childcare, and travel.

Only after her surgeries did ACC contact Jobsz to tell her what payment options she might be eligible for, and Jobsz fears that single parents who don’t think to ask, won’t receive.

She wants WINZ, ACC, and hospital staff to work together to ensure patients like her get the right support.

“I hope that together we can find a solution because with an alarming rate of breast cancer in New Zealand, especially amongst Maori women, I can imagine that many future single mothers will have to deal with this issue. How can we find a way to take care of our parents in a short term way without them ending up on long term benefits?”

A social media post where she spoke about her struggles received strong support from others, including Minister Nikki Kaye, who recently battled breast cancer.

Breast cancer survivor and breast cancer charity Paddle for Hope founder Karin Horen said the gap in support was a major issue.

Horen was first diagnosed with cancer at 26, which returned in her 40s. She has three children whom she cared for after her surgeries.

“There’s people who have no access to anything. You sit in this hospital for days and they don’t give you any idea what you’re entitled to. The problem with cancer is that it doesn’t finish with chemotherapy, or radiation, or an operation. It’s the ongoing effects that you’re dealing with.”

Breast Cancer New Zealand spokeswoman Adele Gautier said breast cancer survivors were often surprised at the financial impact on themselves and their families.

“We have a free healthcare system and getting surgery and drugs is not a problem, but the additional costs can cause a really hard time. It’s a tough situation made even tougher.”

A WINZ spokesperson said it had a range of benefits available for single parents and that what they were eligible for was dependant on individual circumstances. In emergencies assistance could also be provided for accommodation, childcare, and medical costs.

Pink Ribbon Breakfast @ MR TOMS

Every year NZ Breast Cancer Foundation empowers thousands of New Zealanders to take part in Pink Ribbon breakfasts. This year there were over 3000 breakfasts held in NZ during the month of May.

I held one in partnership with MR TOMS bar & restaurant in Ponsonby. They created a beautiful cooked breakfast, with goats cheese omelettes, salmon eggs bene and gorgeous pink cupcakes.

It’s important to me to support Pink Ribbon because they are the voice of the messages that help save women’s lives. And more than that, their ground breaking research will save countless lives in the future. Right now NZBCF is putting money into researching a vaccine to prevent young women developing breast cancer. That would be such a blessing for our future generations. It would stop Breast Cancer in its tracks, and hopefully eliminate the need for mastectomies.

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Evangelina, CEO NZBCF came and said a few words. She talked about the alarming rate of women getting Breast Cancer in NZ, and the even greater risk for Maori women. I spoke about my journey with BRCA and the breast cancer in my family.

My dear friend Helena McAlpine was greatly missed. She was always the star at these events with her bold messages and insane sense of humour. Hosting these events without her feels a bit like going dancing without my high heels, but it was also a good reminder of how special she was, not just to me but to so many people in the room.

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Helena’s husband Christopher Barton joined us in saying a few quick words of support for NZ Breast Cancer Foundation and there wasn’t a dry eye in the house.
Our brave speaker for the event was Tamzyn Adding, who was only diagnosed with cancer a year ago and has bravely fought through her mastectomy and treatment. She talked about how hard it was to tell her three children about her illness, and how scared she was on her initial diagnosis. But ultimately how hard she has fought to be alive. She is one brave woman!

(Tamzyn on the right & her sister on the left)

I thank everyone who made the effort to come to our special Pink Ribbon event… to listen, to connect and give money to this wonderful cause.

A special thanks to Essano – natural skincare products who donated a beautiful gift for every guest and prizes for the raffle. Along with the NZ Boutique Wine Festival, Tui Fleming from Dear Mummy NZ and Dani Strong from Dani Vitality Nutrition – who all kindly donated to the cause.

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All together we raised over $900 for Pink Ribbon and which was the cherry on top of an awesome event, filled with important messages.

A big thanks to Olivia Mullholland, the Marketing support at MR TOMS who so passionately helped pull this event together.

And to Mianetto Prosecco who put together the sparkling pink Mimosas for guests to drink on arrival.

For more information on breast cancer in NZ check out… NZBCF Website

To work with MR TOMS on an event MR TOMS Website

Mediterranean diet could reduce your risk of Breast Cancer by 40%

We all know that eating a healthy diet can greatly improve our health. And in many cases we hear of ‘wonder-foods’ and superfoods that can boost our health and wellbeing in specific ways. But more recently researchers have started to look at diets from around the world, and the health impact on the people who eat these diets.

This huge study in the Netherlands followed 62,000 women aged 55 to 69 over a period of 20 years. The researchers found a strong link between the Mediterranean diet and reduced oestrogen receptor (ER) negative breast cancer.

Around 20 to 25% of all breast cancers diagnosed in New Zealand are ER negative, that’s 1200 – 1500 women diagnosed every year. According to this study, if we all followed the Mediterranean diet, 40% of those cases could be avoided.

The Mediterranean diet is rich in olive oil, fruit, nuts, fish, vegetables and whole grains, and is already known to reduce the risk of heart disease and stroke.

READ THE FULL STORY HERE!

More information about eating a Meditteranean Diet HERE!

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Canadian Woman raises awareness for BRCA

Canadian woman, Laura Kelly carries the BRCA gene. After losing both her parents to cancer her odds of getting both breast cancer and ovarian cancer were extremely high. A few months ago she had a double mastectomy at Women’s College Hospital in Toronto.

I feel so many parallels with Laura, as though we are living almost the same life in another place.

Check our Laura’s story and her brave message here: http://www.orilliapacket.com/2016/08/25/washagos-laura-kelly-who-carries-rare-genetic-mutation-wants-testing-to-be-more-accessible

Laura’s blog here:  http://www.laurakellybrca.ca/

Laura Kelly

Information from the story:

According to the Canadian Cancer Society, most breast and ovarian cancers are not hereditary. Some women have a family history of breast cancer, but only a small number are due to an inherited gene that increases their risk of cancer.

“BRCA mutations account for about 5% of all breast cancers and 4% to 11% of all ovarian cancers,” the agency says on its website. “Genes are not the only factor that affects cancer risk, so not every woman who inherits a BRCA gene mutation will develop breast or ovarian cancer.”

Pretty In Pink #PinkRibbon

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Photo at the Generator Pink Ribbon Breaky – on my right is Evangelina from NZBCF and in the pink vest is Breast Cancer survivor and BRCA carrier – Karin Horen

Today I was invited to speak at the Generator Pink Ribbon Breakfast. They asked me to share my story about having the BRCA cancer gene and my experience having a double mastectomy.

I was excited to see a few familiar faces in the room and I felt so much warmth and support from people I’d never even met before. It’s times such as these that make me proud to be a Kiwi!

I should also note the strong presence of males in the room. These are men who are brave enough to surround themselves with pink cupcakes and hear chicks talk about boob issues. Good on you boys!

 

They kicked off by playing this video:

http://www.newshub.co.nz/tvshows/story/finding-out-your-cancer-risk-a-hard-fought-battle-2016021119#axzz49ii4L08j

It was weird watching that video back and thinking about the stage I was going through at that point. I was making decisions about my mastectomy and talking to specialists at St Marks. It’s amazing to think how far you can come in just a few months!

Yesterday I sat down to write my story and I wondered where to start? I came to the conclusion that you can only really start at the beginning. So I talked about my first experiences of Breast Cancer as a child – finding out that my mum’s best friend had Breast Cancer and going to see her for the last time. The realization that Cancer isn’t an old person’s illness and that young parents can be taken away.

I went on to talk about losing my father to stomach cancer when he was age 39, and my own mother’s journey with breast cancer. Watching her lose both of her breasts and then the lengthy struggle to stay alive – she has been inspirational to say the least.

The final part was about my own BRCA journey and my experience having a double mastectomy. There’s so much to say about that it’s hard to squeeze into one post.

This morning was tinged with bittersweet feelings. I couldn’t stop thinking about Helena and I realized walking into Generator that it’s the first time I’ve ever been there without her. If those walls could talk! So many parties including numerous breast cancer events, Birthday parties and even a singles party – all with Helena.

It was comforting to have Helena’s husband Christopher at the event today. He never ceases to amaze me with his brave face and total strength of character. Some people deal with a lot in their lives but they always manage to keep on smiling from the inside out.

Now I deserve my pink cupcake!

Kia Kaha

Anna x

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Collecting with Christopher Barton & the Helena gang in 2015

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