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.

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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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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#MumLife

busy mum

We are ‘do it all’ 21st century mums with active children, busy careers, partners (or not!), friends, hobbies and passions. But how?? How did we become these women who take on so bloody much and manage to juggle everything around us on a constant basis? I’m still working that out!

I am always on the quest for the perfect balance… the balance of ‘mumness’, PR Girl duties, being a good friend and daughter, whilst trying to be a healthy happy individual. Sometimes I wonder if I’m so focused on finding my balance that I’m missing out on fun stuff along the way? But I guess that’s all just part of this thing called LIFE!

In this blog I will share posts about me, Anna Jobsz, a 36 year old mum with an energetic toddler and a busy PR & Events career. I have a bunch of amazing girlfriends here in New Zealand who I will invite to share their own ‘career mum’ journeys on this site.

Kia Kaha,

Anna X

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