Insurance woes – is your health really covered?

In 2002 I took out an insurance policy with Southern Cross. It was a fairly high premium for Wellness B but I knew with my crazy family history that I needed to protect myself from a young age (I was 22). I signed the paperwork for ‘unlimited surgical cover’ and it certainly helped me sleep better at night, knowing I had this level of protection when it came to surgeries and future health hiccups.

I’m now 38 years old and I found out I had BRCA nearly 3 years ago. During that same year Southern Cross set a new clause to policies – a $40,000 limit for preventative surgeries. I was shocked they would do this for 2 reasons – firstly because the amount of $40,000 covers only 1 surgery and BRCA’s generally need 2 – 4 surgeries, and secondly because with BRCA we have an extremely high chance of developing cancer, sometimes nearly 80%, so the surgeries are in many cases necessary for the people living with the BRCA gene. But the view of Southern Cross seems to be – they would rather wait until the cancer has arrived (not to mention your life is in danger!) and pay out a much higher amount at that stage –  and chemotherapy, radiation is certainly not cheap.

Right now as I type I should be in hospital recovering form my oophorectomy (ovaries removal). No one can tell me definitively whether there is cancer in my ovaries right now, just that the chance is high and “we will know when we’ve removed them”. I have considerable pain in my ovaries, which is from enlarged cysts in my ovaries – PCOS Syndrome. This is not a great indicator to my ovary health. Compounding this is a history of ovarian cancer in my family.

So when Southern Cross cancelled my operation 6 days before it was scheduled, I was left feeling pretty low. They called me and said ‘we can see why this is a necessary operation for you, but your policy won’t cover it.” and that was that.

I have very real fears about what will happen if my ovaries are not removed soon and I am now on a waiting list in public.

A big thanks to journalist Melanie Earley and BRCA carrier Susan Mahon for putting this story together with me.

You can read it here…


Mum told six days before ovarian surgery that insurance won’t cover it

By Melanie Earley

Just six days before Auckland mum Anna Jobsz was due to have her ovaries removed she was told her insurer wouldn’t pay.

Now the mother-of-one and PR professional must fork out $15,000 for private fees or postpone the potentially life-saving surgery.

Jobsz, 38, has the BRCA2 gene which dramatically increased her chances of getting breast or ovarian cancer.

Anna Jobsz plans to have her ovaries removed after being diagnosed with the BRCA gene, which causes a higher risk of ovarian cancer.
CHRIS MCKEEN
Anna Jobsz plans to have her ovaries removed after being diagnosed with the BRCA gene, which causes a higher risk of ovarian cancer.

She already underwent a double mastectomy in 2016, and now wanted her ovaries removed as a preventative measure.

“They don’t know whether there’s cancer in my ovaries right now,” Jobsz said.

“Before my mastectomy they could tell me I was cancer-free but with ovarian cancer they can’t.”

However, her latest operation has been declined because the double mastectomy pushed her over the claim limit of $40,000 for preventative operations.

Jobsz has been insured with Southern Cross Insurance since 2001, with a $120 monthly premium. The plan originally provided unlimited surgical treatment for cancer.

In 2016 Southern Cross created the cap of between $30,000 and $50,000 per lifetime, depending on the member’s plan, for preventative operations.

The surgery to remove her ovaries was deemed “preventative” because it was not known if she had cancer of her ovaries.

“Anyone with BRCA requires more than one operation, so that amount covers hardly anything,” Jobsz said.

“I signed my policy in early 2000’s for unlimited surgical cover and I’ve been paying the full amount on my policy for many years. Their new rules don’t seem fair.”

Without insurance, Jobsz could not afford the $15,000 surgery and would have to go public. This could take up to a year.

“There’s no backstop for me, it’s a horrible position to be in, they’re asking me to prove I have cancer in my ovaries.”

Jobsz has already had a double mastectomy.
ANNA JOBSZ/INSTAGRAM
Jobsz has already had a double mastectomy.

​Jobsz said she spent a lot of time worrying about her son, who recently turned five, and what his future would look like.

“I worry about it all the time, I need to be here to take care of him.

“It’s something I think about every night before I go to sleep.”

Her doctor submitted her insurance claim form about three weeks ago, but the cover was declined less than a week before the surgery, she said.

Jobsz with her five-year-old son, Carlo.
ANNA JOBSZ
Jobsz with her five-year-old son, Carlo.

Southern Cross Health Society chief marketing officer Chris Watney said he was aware Jobsz’s claim had been declined.

“The Society recognised the wish for members to have access to surgeries to prevent the development of cancer in people at high risk of developing the disease,” he said.

“The allowance is not intended to cover the full cost of multiple preventative surgeries, but rather provide a contribution.”

Once the lifetime allowance was reached, any further procedures would not be funded, Watney said.

“This would place too much of a burden of cost on the collective membership of our society – raising premiums significantly.”

For Jobsz, the BRCA2 gene came from her father’s side where there was a strong presence of cancer in the breast, ovary and stomach.

Both her grandmothers were diagnosed with cancer, and her father also died from cancer when he was 39.

It wasn’t until her uncle was diagnosed with male breast cancer her suspicions were confirmed about having the gene.

Having her ovaries removed would cause infertility, but Jobsz said she needed to focus on the positive side of things.

She started a blog following her diagnosis to discuss her feelings and bring awareness to the issue.

“It is really scary to deal with knowing my risk of ovarian cancer is so high, and I’m not the only one dealing with this.”

Jobsz has found it hard to juggle motherhood with recovering from surgery.
ANNA JOBSZ
Jobsz has found it hard to juggle motherhood with recovering from surgery.

AUT lecturer Susan Mahon understood the struggle Jobsz faced. She found she carried the BRCA gene two years ago.

“I had my ovaries out a week after being tested, before I even had a mastectomy, and they found a large high-grade serous carcinoma in my right ovary.”

Mahon said she had been “lucky” her ovaries were removed so early, before she reached the $40,000 cap.

“If I had gone public and waited six months to go through the system I would be dead.”

Jobsz said she was considering taking her case to the Insurance and Financial Services Ombudsman.

 

READ MORE:
Remembering Helena McAlpine
Anna Jobsz undergoes mastectomy
Recovery from a mastectomy

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

 

The story of Karin Horen

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Karin taking Anna for a paddle on Lake Pupuke

 

I knew Karin from around Auckland as one of the Breast Cancer ladies who spoke at events and always looked energetic and fabulous. I spoke to her on occasion about her battle with Breast Cancer and in 2012 she spoke at a Pink Ribbon breast cancer event that I organized with my good friend Helena McAlpine (god rest her naughty soul!)

I always wondered how Karin managed to cope with 3 small girls and such a busy life!

It wasn’t until about 3 years ago, after finding out that I had BRCA2, that I also found out Karin was a BRCA1 carrier. From that day I called her my BRCA sister, and over the past few years we have shared many highs and lows together. We have supported each other through operations and the many variables that come with it…  helping with children, talking to each other through upset phone calls, infections and all the complicated things that come along with solo parents going through breast surgeries.

When I asked Karin to sit down and tell me her story, I was pretty sure I knew it all. But it’s funny how you think you know someone so well, but then you realise there was so much you didn’t know. That’s how I felt when when Karin shared her incredible story with me.

Now I share it with you…

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Karin with her three daughters, Pania, Mokoia and Huia

 

When did you first find out you had breast cancer?

My mother died in the year 1998 of a heart attack, which was a really hard time for me. Losing a parent is so devastating, and I was still in mourning her death when I found a lump in my breast. I will never forget, I was at the beach when I felt the lump. I was lucky that I could actually see the bump growing out of my breast, so I knew something was wrong. In 1999 there wasn’t much awareness of breast cancer, I had to really search on the internet really hard to find any information at all. All I could find was a story about twins in America who were also in their 20’s who had breast cancer.

It was 1999, I was 26 and living in Tel Aviv when it was confirmed I had cancer. I went on to have a partial mastectomy, then radiotherapy and chemotherapy in 2000. I tried to go to a support group in Israel but it was all much older women, so I knew that this kind of cancer was not normal for someone my age.

 

What happened following your treatment?

I’m not one to sit around in stillness, so 2 weeks after I finished my chemo I went for a job interview wearing a wig. When I went back for the recall interview I forgot to wear the same wig and they noticed my short hair. I told them I was going for a ‘racy’ hairdo and decided to go short. I landed the job at Ogilvy’s in Israel as a media buyer and after a few years in that role I moved to Australia in 2005 to study my Masters in Marketing at University.

It was two years later when I had my first daughter Huia in Australia, and then soon after moved to New Zealand. I had my second daughter in 2010 and finally my third daughter Pania in 2015.

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So when did you find out you had breast cancer again?

I managed to have three beautiful girls and I was so happy to be in remission. I believed the breast cancer had been an entirely random unfortunate thing.

4 years ago at age 40  I was doing breast check ups North Shore Hospital. They sent me home saying  I had some benign nodules. But soon after in 2013 I was told there were 10 tumors inside me. The doctor called and wanted me to come in, and at that moment that’s when I knew I had cancer again. I made her tell me the details on the phone and I felt like the whole room was falling away around me. I was home alone with the girls, so I rang my girlfriends to come and help me. I was just too overwhelmed to cope. I remember my adrenaline kicking in and immediately starting to sort everything out.

At this point I knew what I was in for which is partly what scared me. I remember at the time I was so frustrated to be going through it all again. I had been doing everything right. I was living such a healthy life and exercising! I was paddle-boarding and having a great life as a mum with three very small girls.

Telling my partner at the time was hard. He was in Canada and I had to skype him and tell him. I said ‘it’s back’ and we both knew what we were dealing with.

I had to make the decision whether to remove one or both breasts.  Pania was still a baby in nappies and I knew that my three girls needed me alive, so I chose to remove both breasts. And following that was chemo, radiation and all the hard months that followed.

The hardest thing was continuing as a mum and looking after the girls. I was often completely on my own with them and trying to deal with all the side effects at the same time. Thankfully through the paddle boarding community I created, I managed to survive this with help from them and the community. I opened up my story to people and I learned very quickly to accept help – and boy did I need it!

This is a big part of the reason now that I give back with Paddle For Hope, the charity I set up to help women recovering from breast cancer.

http://www.paddleforhope.co.nz

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When did you find out you had BRCA?

It wasn’t until 2014 I found out I had BRCA1. I’m Jewish Ashkenazi (an East European Jew) and I had only recently found out what BRCA was.  At that point I was having my ovaries removed, and the doctor spoke to me about BRCA and doing the test. I was a two time breast cancer patient and I was jewish, so it seemed possible I would have the gene.

I was so happy when I found out I was BRCA positive. I was excited almost. It was the moment where I could stop blaming myself for getting cancer. It wasn’t anything I’d done wrong or could have helped. It’s a mutant gene… my genetics.

There is so much more we know now about BRCA in 2018. Every day I see my daughters breasts growing and I feel the fear growing inside me. But at least they will have the option of testing at age 18, which is a blessing. I know they have a 50% chance. I make sure they are educated about BRCA. I don’t talk to them about it in depth but they are aware of my genetics and illness, and when they are 18 I will have an in depth discussion with them. It is my hope that my kids will be aware of the their risks and live a balanced healthy life.

 

How do you feel about the way BRCA is being dealt with in NZ?

While there is more awareness about BRCA and inherited breast cancers. Unfortunately people are still dying from BRCA cancer diseases. Testing is the first step, and I hope there will be advancements in both testing and treatment for BRCA in the near future. At the moment it does not seem like enough people are being tested.

It’s really frustrating that it’s such a simple test to do and I think everyone should be tested if they want to be tested. I didn’t have family history. So why should people have to prove they have family history to get this test? And BRCA cancers come on particularly early, so surely more testing is needed?

There are cases where people’s families are dead and they can’t prove the gene is in their family. Those people need to be tested but they often can’t – how is that fair? I want people to be knowledgeable about their chances to have BRCA and to understand. It’s better to have no regrets, than be sitting on your death bed and saying goodbye to your family, wishing you’d had the test. What we mainly see in the media are the survival stories and people who’ve found the gene. But I’ve buried some good friends over the years and these deaths are a sad reality in my world.

 

What are the next steps for your health journey?

Well after a total of 8 operations on my breasts and ovaries I’ve had significant issues with blood supply and skin being so thin. Mostly as a result of the radiotherapy from 1999. I’ve also had capsular contractions. So very soon I’m having an operation to reconstruct my right breast using fat and skin from my stomach. A few months after that I will have another operation, my left breast will have the expander removed and an implant put in.

 

How do you feel about BRCA and your health now?

I am lucky that I was able to be a mum that could breast feed all her babies. Had I known I had the BRCA gene 10 years ago, it might have saved me getting my hormonal breast cancer, but the reality is that I probably would have had my ovaries removed which means I wouldn’t have these beautiful daughters.

I exercise a lot to keep my bones healthy, I try to stay strong. I’m still on Exomestin to reduce estrogen production.  In all honesty, right now my breasts are really screwed up, and I’ve been through cancer twice, but at the end of the day I have my three girls and I am alive.

 

Any final words?

When you have an accident in NZ you have ACC that provides recovery support, financial support, help getting your kids to school and home help. It is my hope to have this available for breast cancer recovery one day, in particular for solo parents.

Part of my Paddle for Hope is called ‘Paddle on’ rehabilitation for people who have had breast cancer. It keeps them moving and strengthens their chest once they are ready for it. I invite women who would like support post breast surgery to get in touch if they want to be part of the community.

http://www.paddleforhope.co.nz

 

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Karin & Victoria at their big annual Paddle For Hope event

 

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Bridgette Jackson, Anna Jobsz & Karin Horen – comforting each other through a challenging time. Anna & Karin post surgery and Bridgette coping through her daughter’s heart transplant surgery #girlpower

 

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Rebecca Freeman-Greene, Karin Horen & Anna Jobsz. Rebecca was about to undergo her double mastectomy after finding out she had breast cancer.

 

About PADDLE FOR HOPE:

Paddle for Hope is a vehicle for fundraising for the ‘Paddle On’ rehibilitation programme. They use physiotherapists together with us ( starboard riders ) to help on the water and give people a better quality of life after cancer. Victoria and Karin have been fundraising for 7 years. The program is free around NZ.

 

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

Silicone Success!

My reconstruction was completed in August 2016 by Dr Michelle Locke. I am so happy with the results, my breasts are now the size they’ve always been and they are a great shape, complete with my very own nipples. Of course I have small scars on each side of my nipples and overall they arent exactly like the real ones, but I think they are wonderful.

Growing up I watched my mums breast operations, and after so many she was left without any breasts or implants – just one big long scar. So I feel very lucky to have had this breast reconstruction through St Marks Breast Clinic.

Now that 2017 has arrived I feel like I’ve really achieved something getting through the surgeries. I’m naming 2016 as my ‘discovery year’. I discovered so much about myself through so many challenges. I’m pretty sure that makes this year my year for living!

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You can read about my reconstruction here in magazine ‘The Beauty Book’:

 

Anna Jobsz is a do-it-all kind of girl with a boutique PR & Events business, series of ladies networking lunches, mineral cosmetics business and a 3 year old son.

In January this year Anna learned that she had the mutant cancer BRCA gene that significantly increased her odds of having Breast Cancer and other cancers. This busy single mum wasted no time in acting, and in April this year, at age 36, Anna underwent a double mastectomy with nipple sparing. This lifesaving procedure reduced her lifetime chance of Breast cancer from over 80% to just 1%.

Was it difficult deciding to have a Double Mastectomy?

No it was a very straight forward decision. I knew immediately that I was not comfortable with my extremely high cancer odds. With the BRCA gene from my dad’s side I had around a 60% chance of Breast Cancer but with my mum’s history of invasive Breast Cancer in both breasts – it raised my odds even higher. I wasn’t prepared to play the waiting game and inevitably end up with a life threatening cancer. I watched my dad die at 39 from a BRCA cancer and one of my best friends died last year from Breast Cancer at age 38, so I wanted to be proactive.

What was the hardest part of having a your big operation?

The single hardest thing for me was being away from my son every time I went to hospital. Not just because I missed him, but because he was too young to properly understand that I hadn’t just abandoned him. I think by the third hospital stay he was starting to understand that mummy was going somewhere to get better. Physically it was hard going, I was in a good deal of pain the first two weeks and unable to do even simple things. I had moderate to mild pain for 5 weeks after that. At no point did I regret my decision. I knew having a mastectomy would come with significant challenges and I was prepared to deal with whatever came my way. I also suffered a bad infection after my operation that put me back into hospital, it was a truly challenging time but the team at Auckland Hospital were amazing.

Tell us about your reconstruction and your cosmetic result?

After the removal of my breasts they pumped my expanders up each week with saline until I reached my pre-operation C cup size. Then you wait about 6 weeks for the skin to settle before having the reconstructive surgery to put in the silicone implants. I had an amazing team with Dr Vanessa Blair from St Marks Breast Clinic removing my breasts and Dr Michelle Lock doing all of the cosmetic surgery work. When I started this process at the beginning of the year I had no idea what my breasts would end up looking like, so to have such an amazing result has really been the silver lining on this bittersweet journey. I still have my original nipples and my size and shape is really quite incredible. I was told that BRCA operations are very tricky because they remove over 95% of the breast tissue which makes it hard to get an even result. So I’m very lucky to have such a great outcome.

What is your biggest learning from having BRCA and these procedures?

Firstly – I have had to accept that I am not always going to be in control. In the beginning I really struggled to accept the help, but once I gave in to my close friends life became much easier. They quite literally had a roster of pick ups, drop offs, sleepovers, washing, food, nursing and emotional support. I was blown away!  I’ve also learned that it’s not about ‘the right decision’ it’s about ‘your right decision’. I can’t keep trying to do what is right in life, I can only do what is right for me. That’s a biggie.

How have your surgeries affected your view on beauty?

Being beautiful isn’t just skin deep, it’s soul deep. If you feel beautiful in yourself people will feel it simply by being around you. When I first had my breasts removed it was an interesting process to go through. I had been worried pre-op that being ’breastless’ for several weeks would make me want to hide away. But it wasn’t the case at all, I felt brave! I rocked my A cup bras, it was surprisingly liberating. Now that I have my reconstruction complete I feel every bit the beautiful woman I was with my original breasts. Ultimately I think if you can’t be happy without your breasts then you have no chance of being happy with them!