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Advocacy is nothing new to Rethink. In 2011, Jill Anzaurt wasn’t able to gain access to the drug Herceptin, a potentially life-saving but expensive targeted treatment that can help patients with aggressive HER-2+ breast cancer, because her tumour was deemed too small to treat. Rethink worked with Jill, a brave and determined young mother of two, and launched a letter writing campaign to the Ontario Minister of Health, which spread like wildfire! Jill’s powerful story coupled with the advocacy efforts of Rethink and other breast cancer organizations played a major role in the announcement of Cancer Care Ontario’s Evidence-Building Program, which approved OHIP coverage of Herceptin for eligible patients with HER2 positive breast cancer and tumours of all sizes.

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Fast forward to 2016 and Rethink is stirring the pot again by putting young women at the center of making changes to improve the lives of all women.

Currently in Ontario there is a 1-2 year wait time for breast reconstruction. Yes, you heard me 1-2 YEARS until women can feel like they can move forward from their breast cancer! Unacceptable? We think so too.

Timely access to breast reconstruction is an important issue for Rethink specifically because younger women are more likely to opt for preventative surgeries and reconstruction and rates of mastectomy in women younger than 40 are rising quickly.

On October 19th Rethink Breast Cancer descended on Queen’s Park to advocate for women affected by breast cancer.

Breast reconstruction wait times was on the Question Period agenda that day and we were psyched to hear the Minster of Health acknowledge that it is “unacceptable” for women to be waiting that long for breast reconstruction. We agree!

“it is unacceptably long for women who have to go through this traumatic physical and mental procedure—the challenges that they’re facing. We’re obligated to make sure that we’re providing a better system and better support for them, and we’re making the changes to deliver just that.” Honourable Eric Hoskins, Minister of Health, Ontario

We need your help to ensure the Minister stands by his word and commits to truly reducing the wait times for breast reconstruction.  We are calling on the Minister of Health to Increase surgical resources in the province (like Operating Room time) to benefit all patients looking to access breast reconstruction.

Like in 2011, let your voice be heard by joining our letter writing campaign to the Minister of Health and be part of the change HERE.

Want to get involved with more advocacy initiatives? Join our movement here.

Rethink Breast Cancer’s national needs assessment shows that young women’s unique needs continue to fall through the cracks. Young women with breast cancer are finding out about potential fertility loss too late in the treatment process. Young mothers with breast cancer are struggling in isolation rather than being connected with services to help their unique needs. The quality of care received can change depending on your postal code. We believe all young women should receive the same level of quality care, no matter where they live.

Rethink Breast Cancer launched Care Guidelines for Young Women with Breast Cancer earlier this year. The purpose of these guidelines is to inform young women of the care they should be receiving and to inform health care professionals of the unique issues that young women face which should be addressed when treating young breast cancer patients.

We want to see our Care Guidelines displayed in every cancer centre and hospital across Canada. It’s an ambitious goal we know, but we are up for the task!

To achieve this, we are working with site champions and Rethink Young Women’s Network (RYWN) across Canada to share the Care Guidelines with both young women who are diagnosed and being treated for breast cancer, as well as with all healthcare professionals who treat young women.

We are educating the healthcare community on the unique needs of young breast cancer patients through conferences. We recently attended the Canadian Association of Nursing Oncology (CANO) conference. Many of the attendees signed our poster in support for our Care Guidelines and the amazing work Rethink is doing for young women affected by breast cancer.

We are also really excited to be selected to present our Care Guidelines at the prestigious San Antonio Breast Cancer Symposium in December. This international symposium is the world’s largest breast oncology meeting attended by the top academic physicians and researchers involved in breast cancer.

Although we’re making strides, we still need your help! Join our campaign and help us spread the word so we can ensure that young women’s needs are addressed. Share this post, get on Twitter, and use your voice to support young women with breast cancer. For more information about our Care Guidelines and different ways you can get involved visit our website rethinkbreastcancer.com/careguidelines.

If you have ever had to experience the healthcare system in this country you know it’s very complex. Most people refer to it as the Canadian Healthcare System, but what people don’t realize is that Canada has 15 different healthcare systems representing every province and territory. This means that federally The Canada Health Act represents the overarching system in the country, but how each system operates is determined provincially. Confused yet? You should be!

We try our best to stay out of this uncharted territory, but if we get sick, we don’t have a choice but to face the storm head on.

I’m very fortunate to be well-versed in advocacy through my career. My background is in politics, but my passion is helping people and it’s through melding the two I found myself developing the advocacy program at Rethink Breast Cancer.

Armed with advocacy knowledge, I found myself in this unchartered territory in 2008 when I became very sick, and later diagnosed with auto-immune hepatitis. This type of hepatitis (which is rare) is when your immune system mistakes an area of your body as an invader and decides to attack it. In my case, my immune system chose my liver. I presented with flu-like symptoms and it wasn’t until almost 2 weeks later when my skin and eyes turned a lovely shade of yellow that I decided that maybe it wasn’t the flu.

And just like that, without warning, I was a patient. There are a few different types of patients: the persistent, won’t take no for an answer; the neutral, when push comes to shove they will speak up; and the compliant patient, who doesn’t like to rock the boat. I fell somewhere between persistent and neutral .

Regardless of what type of patient you are, navigating the healthcare system is overwhelming!

Where do you even start? It’s not like you plan to get sick and you have the luxury of researching your illness and your course of treatment prior to getting there.

I’m here to give you some advice and hopefully make your experience a little easier through self-advocacy. Self-advocacy is the ability to advocate on behalf of yourself to create change in your life. This change or changes become important when you are trying to get the best care possible.

Listen to your body. I figured I was young, active and healthy and that I couldn’t get sick. I was wrong! I didn’t want to see a doctor because I thought it would be a waste of everyone’s time. As a tactic to lure me to a doctor, my husband bet me if I could eat a Big Mac meal and keep it down, we wouldn’t go to the hospital. The very thought of eating a Big Mac made my stomach turn! That’s when I found myself at the head of the line being triaged at our hospital. I lost the bet…  I was sick.

Don’t ignore symptoms! When something is not quite right see your doctor. No one knows your body better than yourself. Give as much information to your doctor as possible. No detail is too small to mention. If it’s easier, write them down before your appointment and talk them through with your spouse, partner, or family member to make sure you don’t miss anything. My husband was the one to notice I was jaundice, not me; I was too busy making excuses for my illness.

Know your rights. Even though you’re a patient, you still have rights. The internet is so overwhelming that it’s often hard to filter out the helpful sites from the not so helpful sites. Rethink Breast Cancer has developed a set of 10 care guidelines for newly diagnosed women. The guidelines are meant to notify young women of the care they should be receiving and to inform health care professionals of the unique issues that young women diagnosed face. Personally, I think these guidelines can be adapted to any illness and used to help you when speaking with your doctor.

Having someone on the ‘inside’ is also helpful. Depending on where you are treated there may be a nurse/patient navigator who is there to guide you through your cancer journey. This person may be able to help with setting up appointments, answer your questions, or just be there to listen. Sometimes you are referred to a navigator and sometimes the onus is on you to seek one out. At your first appointment, ask if there is a navigator available to assist you with questions you may have or in making difficult treatment choices.  And speaking of questions…

There are no dumb questions! What I found helpful when going through my treatment was writing down all my questions as they popped into my head. A day or so before my appointment with my specialist I would go over the questions with my husband to make sure I wasn’t missing anything.

I know some patients feel like they are taking up too much of the doctor’s time if they have a laundry list of questions to ask. You may want to confirm with your doctor at the beginning of your appointment how much time you have. Let the doctor know that you would like to take 10 minutes at the end of the appointment to answer any questions you have that may not be covered during the appointment.

Bring a friend or family member to take notes because it’s really hard to listen and take notes at the same time.

If you have any unanswered questions or follow-up ask your doctor if you can email them or set up a follow-up by telephone. Many physicians are happy to use email as a means of communication.

You are not alone. Even though you may feel like you are the only person in the world that is going through a crappy time, you are not alone. There are a number of people out there that understand exactly how you feel right now.

There are various supports systems that are tailored to what you need at this moment. Let’s face it, some days you don’t feel like sharing, so reading a blog might be just what you need or posting a question about your treatment plan on a message board. Other times you may feel like picking yourself up off the couch and having some in-person interaction. Some ways to stay connected:

Remember: you are worth fighting for. Don’t ever feel that you are not entitled to having all the facts, asking all your questions, or sharing all of your concerns!

As Thomas Edison once said, “Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time.”

If you have been following the news lately you may have noticed that medical marijuana has been receiving some headlines. Recently the Supreme Court of Canada ruled that medical marijuana patients are allowed to consume marijuana in different forms beyond the “dried” form as stipulated by Health Canada.

The Supreme Court found that by restricting medical marijuana to only its dried form violates the right to liberty and security “in a manner that is arbitrary and hence is not in accord with the principles of fundamental justice.”

Last week, because of this unanimous ruling, Health Canada announced that they would be “clarifying its rules” to allow licensed medical marijuana producers to sell cannabis oil, fresh buds and leaves. This change came into effect immediately.

What does this mean to a patient?

This ruling will have a big impact on patients who use cannabis to treat medical conditions such as advanced breast cancer. This will allow patients greater access to a different form of therapy that is suited to them.

If you are a patient who is interested in obtaining medical marijuana there are a few things you need to know.

According to Health Canada’s program there are a few steps for you to follow:
Step 1: Consult with a Healthcare Practitioner
Step 2: Obtain a Medical Document from your Healthcare Practitioner
Step 3: Register and order with a Licensed Producer
Step 4: Receive shipment of your marijuana for medical purposes

There are a total of 25 Licensed Producers (LP) across Canada. These LPs are approved under Health Canada’s Marihuana for Medical Purposes Regulations (MMPR) program. Each LP sets their own pricing. According to the Medical Marijuana website, patients can expect to pay $7-$12 per gram. Several licensed commercial producers do have compassionate pricing models for patients receiving disability or assistance payments.

If your healthcare provider supports the use of medical marijuana he/she must complete a medical document on your behalf. You must then contact a LP to receive a registration form. The medical form and registration form must be submitted directly to the LP.

Remember: one size doesn’t fit all when it comes to treating breast cancer. We believe that every patient should have access to the best available treatments to ease the effects of this terrible disease. If you require further information please chat with your healthcare provider. You can also view the FAQ section of Health Canada’s website.

Big news today in the world of medical marijuana! Health Canada has updated its rules so that licensed medicinal marijuana producers can now officially produce and sell cannabis oil and fresh marijuana buds and leaves (in addition to dried forms). The new rules come after a recent ruling from the Supreme Court of Canada.

What does this mean for Canadian patients who are seeking access to marijuana to help with the effects of cancer treatment? Stay tuned for an upcoming post from Ashley, our Senior Advocacy Manager, who will break down what you need to know and how this might affect you.

For the full article from the CBC, click here.

Last week I had the unique opportunity of being in the same room with a number of multidisciplinary leaders from the breast cancer community, who were in Toronto for the Canadian Breast Cancer Symposium. The Symposium’s goal was “developing a personalized approach in the management of breast cancer.”

The day kicked off with a keynote address by Dr. Dennis Slamon, Director of Clinical/Translational Research Jonsson Comprehensive Cancer Centre or better known as the developer of the ground-breaking breast cancer drug Herceptin. Dr. Slamon complemented Canadian investigators for thinking outside the box and getting behind high risk-high gain research. He said, “Categorizing cancers by organ of origin, such as breast, doesn’t begin to define the complexity of cancer.”

We heard from a number of guest speakers talking about genetics/screening, radiation oncology, systemic therapy and surgery.

Here are my key takeaways from the Symposium:

*New mutations are being discovered beyond BRCA which will help us further understand hereditary breast cancer.

*30% of patients referred to the Ontario Breast Screening Program are genetic carriers of BRCA.

*MRI is vital as part of screening for high risk. Over 90% of breast cancers detected in OBSP involve MRI.

*Patient stratification is key to efficiency of breast cancer screening programs.

*Through more research into genomic assays we will be able to personalize adjuvant chemotherapy in breast cancer.

*New data is emerging on anti-estrogen treatment for young women.

*There are many complexities of triple negative breast cancer. We are moving forward from biology to treatment.

*The future of hormonal therapy in ER+ metastatic breast cancer will be combined with targeted agents.

This is a really exciting time for breast cancer research and delivery of care. I see a shift from a blanket approach to a more personalized approach to the treatment of breast cancer. In my work as Manager of Rethink’s Advocacy Program I will continue to stay informed and ensure that young women receive equal access to much needed treatments.

Rethink Breast Cancer is calling on the Minister of Health in Nova Scotia to fund a diagnostic test called Oncotype Dx.

On October 8th, Rethink’s Founder & Executive Director, MJ DeCoteau & I traveled to Halifax, Nova Scotia to meet with Members of the Legislative Assembly and the Deputy Minister of Health. The purpose of these meetings was to introduce them to Rethink and also highlight the importance this test could have on women diagnosed with breast cancer in the province.

oncotype-stat1Oncotype Dx helps identify which women with early-stage, estrogen-receptor positive and lymph-node-negative breast cancer are more likely to benefit from adding chemotherapy to their hormonal treatment. This test also helps assess the likelihood that an individual woman’s breast cancer will return. More than 12,000 patients in Canada have benefited from the additional information that the Oncotype Dx test has provided.

During Question Period on October 23rd, Progressive Conservative Health Critic, Honourable Chris d’Entremont raised this issue with Minister Glavine. Read their exchange here.

Oncotype Dx is considered a standard of care in the United States and has received approval from various committees including the Ontario Health Technology Assessment Committee. This test has been approved in 6 other provinces and with your help we can ensure that women of Nova Scotia receive equal treatment as women in other provinces such as Alberta, British Columbia, Newfoundland and Labrador, Ontario, Quebec and Saskatchewan.

writealetterNSConsider joining our letter writing campaign to voice your support on the importance Oncotype Dx will have on young women diagnosed with breast cancer in Nova Scotia. Visit here for more information.

One size does not fit all when it comes to a breast cancer diagnosis. This test will hopefully lead to a more personalized approach in breast cancer treatment, which may be more cost effective in treating cancer patients.

 

As part of Breast Cancer Awareness month, I had the unique opportunity to travel to Nova Scotia (aka home) with Rethink’s Founder and Executive Director, MJ DeCoteau. Now that I live in Ottawa I don’t usually spend much time on the East Coast in the Fall and forget just how beautiful that part of the country is this time of year. The colours on the trees were near their peak and the smell of the salt water in the air brought me back to my childhood, growing up on the west coast of Cape Breton Island.

Ashley in Halifax
It’s good being back home in Nova Scotia.

The purpose of this trip was to meet Members of the Provincial Legislature (MLAs) to introduce them to Rethink Breast Cancer and to advocate on behalf of young women for greater access to evidenced-based treatments and diagnostic testing to empower these young women facing breast cancer to make more personalized treatment decisions.  Joining MJ & I at these meetings was Amanda Hudson-Frigault, a young woman who was diagnosed with breast cancer at the age of 32. Amanda spoke eloquently about her breast cancer journey as a young woman and of the many unique challenges she faced.

The MLAs we met with were very engaged in our cause and it is my hope that we can continue to foster these relationships and work with them to improve the lives of young women diagnosed with breast cancer in Nova Scotia.

Next, MJ and I head to Manitoba to meet with MLAs there.