Friday Update!
Hello and welcome to the first Friday update on our new platform! Community Highlights We have 35 new members. Please welcome Poppi, LittleBird, quicknumber11, bubbleeblonde and all our new members. This week we had 37 posts and 332 comments. BCNA News & Events MammaPrint test may help some women safely avoid chemotherapy, MINDACT clinical trial: A large international clinical trial suggests that MammaPrint gene testing could help thousands of Australian women with a common form of early breast cancer to safely forgo chemotherapy. To read more click here Federal government to fast-track approval process for new: Breast Cancer Network Australia has welcomed the announcement by Federal Health Minister Sussan Ley that will see some new cancer drugs, including drugs for metastatic breast cancer, made available in Australia more quickly than they are under the current approval processes. To read more click here Secondary breast cancer telephone support: Breast Cancer Network Australia (BCNA) provides professional one-on-one counselling support to women and men with secondary breast cancer, and their families. For more information click here BCNA Information Forums: Held in rural, regional and metropolitan locations around Australia, our Information Forums are free events for people diagnosed with breast cancer, and their partners, family and supporters. To find out where our next information forums are being held click here. Pink Lady Luncheons: It was wonderful to catch up with our Sydney supporters and hear The Hon. Nick Greiner share his breast cancer experience at our first Pink Lady Lunch in Sydney this week. Here are some pictures from both the Perth and Sydney luncheons. BreaCan Navigator: The BreaCan Information Navigator is a resource aimed at women who have been diagnosed with early breast cancer. It is a stepping stone to finding good quality, current information on a range of breast cancer related topics from reputable sources. For more information click here Have a lovely weekend, Ann-MarieFriday update!
Hello everyone, welcome to the Friday update! Community Highlights We have 29 new members. Please give a warm welcome to Kate13, MayaV, dtrif5, Effi and all our new members. This week we had 79 posts and 436 comments. Here are a few posts you may have missed - Big red Let me yell it loud and clear .....chemo is done! Surgery over Things I don't miss about ac chemo BCNA News & Events At BCNA we are committed to providing high quality, easily accessible support to all our members and we are proud to announce we are now National Relay Service friendly. This means if you are deaf or have a hearing or speech impairment you can contact us via the National Relay Service. Learn more about the National Relay Service at www.relayservice.gov.au. Have you received the second edition of BCNA's Hope & Hurdles pack (distributed since January 2013)? We are currently reviewing the pack and would like to hear from you! To help us improve this resource and better support people living with secondary breast cancer please complete the online survey before 12 June: www.surveymonkey.com/r/H-Hsurvey2016 BCNA is thrilled to be voted by its peers as number six on GiveEasy’s 2016 Index of Australia’s most innovative not-for-profit organisations. - Read more We are excited to announce that next month we will be visiting three locations in Western Australia to host breast cancer information forums. - Read more Have a lovely weekend. Ann-Marie x
Friday Update
Hi everyone. It's time for another Friday Update. Community Highlights We have 24 new members. A warm welcome to Last, Rockette, sparker66, and all the new members. This week we had 74 posts and 418 comments. Here are some interesting and thoughtful posts you might have missed: Post chemo blues Hormone therapy Reflections We've been seeing a lot of spam in the online network lately. We have measures in place to prevent spam robots from getting through the registration process, but these other spammers are actual people. They register, verify their accounts, log in, some of them even complete their profiles, and then post spam, usually overnight. We are working with our web developers on finding ways to block them without it affecting users like you and me. In the meantime, if you spot spam, help us out by clicking on that Report button that appears under every post and comment. Thanks very much for your patience. We're also working with our developers to bring a big improvement to the online network around how comments are displayed beneath posts. You know how they keep getting narrow? Yeah, we're working on fixing that. Stay tuned! In other news, you might notice that all BCNA staff members who are also members of the online network are clearly identified in our user names. This is to give you a better sense of who's who in the online network. BCNA News & Events Pink buns are here! Help us sprinkle some change. From 21 April to 11 May nearly 600 Bakers Delight bakeries will donate 100% of the sale of Pink Buns to BCNA in support of all Australians affected by breast cancer. So, get out and have a pink bun, or just say 'thanks' to the staff the next time you're in Bakers Delight. BCNA is planning to develop information resources in Greek and Chinese for people affected by secondary breast cancer. We are looking for people diagnosed with secondary breast cancer (i.e. whose breast cancer has spread to other parts of the body) and their family members to participate in focus groups which will help guide the development of these new resources. If you are from a Chinese or Greek speaking background and you are living with secondary breast cancer or support someone who is we would love to hear from you. Please contact BCNA research coordinator, Riki Long, on (03) 9805 2585 or via email rlong@bcna.org.au for more information and to get involved. That's pretty much it, I think. I'm looking forward to a quiet weekend at home reading a book I just picked up from the library earlier - Cloudstreet by Tim Winton. What are you up to this weekend? From 21 April to 11 May nearly 600 Bakers Delight bakeries will donate 100% of the sale of Pink Buns to BCNA in support of all Australians affected by breast cancer. - See more at: https://www.bcna.org.au/online-network/members/Christine_BCNA%20CEO/blog/help-us-sprinkle-some-change#sthash.ef4HPs92.dpuf
initial diagnosis of stage 4
Hi everyone, I was lying in bed last night thinking thinking as you do, and i am wondering just how many of us out there were initially diagnosed with stage 4 metastic breast cancer, I had been having my mammograms every two years and then three months before my next one I had excrutiating pain in my left breast, went to my gp, straight to adelaide for ultrasound mammogram and three fine needle biopsies, then off to breast surgeon as we thought it was early breast cancer, he then ordered the scans and bone scan to do the staging process, when we went back for results, it was off for a ct of my liver there and, fortunately his rooms were adjacent to a radiology rooms, so the results were given to him in 20 minutes, then we got the news, it was in my liver, so then the merry go round really started, I went in to FIX IT mode, we went and so my oncologist, and fortunately for us he is fantastic and has an amazing skill set, so then it was chemo, then tamoxifen, then feamara, which worked well for 9 months, now its affinitor and aromicin, last mri showed up more spots on my spine about 30 or more, now its more scans on Fri.30th jan, results on 3rd Feb, app. with radiation specialist on Feb9th due to a lot of pain in my hip, I will see him and see what he has to say, and so it goes on and on. However the reason for all this is to try and find out just how many of us on diagnosis received the news it was already stage 4, I have had the braca gene test and that came back inconclusive, I have to believe that it was just the luck of the draw, even though I had had regular mammograms since I was 40, this came about because my mother had just died of non hodgkins lymphoma and it really scared me, I had to really push my gp to have a mammogram at that age but for peace of mind he agreed, my query also is how long would it take for stage 4 to set it self up in my body no one seems to be able to answer to question and it makes me feel guilty that I should have done more,somehow, not sure what I could have done though, well thanks for reading this, and any information would be helpful. Is there a database for women with an initial diagnosis of stage 4, and how many of us are there with the advanced cancer diagnosis in the country, many thanks and look forward to hearing from anyone with information.
What a Year
Given the time of year, I want to share some joy and much happiness. I have been living with Secondary Breast Cancer for 8 years. I am HER2 Positive and my body has been through the mill many times with bone and brain metastases. This is my reality which I now embrace as part of me and consequently I enjoy every day and moment. Sure I am now experiencing some long term problems such as nerve damage due to years of chemotherapy, radiotherapy and surgery but I am taking it in my stride. My wonderful medical team have kept me going this long with a good quality of life. I have advanced cancer, however, incurable does not mean untreatable. With the development of HER2-targeted therapies I have treatment options which I believe has lengthened my life and given me quality of life. Earlier this year I started on Kadcyla paying the first three doses as its not yet on the PBS. Kadcyla belongs to a group of medicines known as anti-neoplastic (or anti-cancer) agent, designed to target and deliver the anti-cancer emtansine directly inside HER2-positive cancer cells to stop the growth and spread of the cancer. Thus far this drug has done wonders for me. I have never felt better! My bone and brain metastases are in check. I really hope this drug becomes available on the PBS very soon so everyone can access it. It’s bizarre, I have never felt better. To such an extent that I planned a wonderful European holiday with my husband and close friends. We spent time in Paris, went on a Mediterranean cruise and finished in Venice for a few days before coming home. I would not have entertained the notion of travelling that far in 2013 and here we are 2014 having the time of our lives. This was followed up by a fantastic surprise 60 th Birthday party for my husband John and my Brother-in-Law Jon this weekend. My husband still has a smile on his face. I have a book I refer to every day called Pausitivity and this verse pretty much sums up how I am feeling right now:- “When you recover or discover something that nourishes your soul and brings joy, care enough about yourself to make room for it in your life.” Jean Shinoa Bolen Here I am feeling great, looking forward to Christmas with my family and friends. Wishing you and yours a very Merry Christmas for 2014. Karen Cowley BCNA Consumer Advocate Secondary Breast Cancer Survivor Lover of LifeMeeting with Pharmaceutical Company Eisai
On Tuesday 16 September I represented BCNA as a Consumer Representative as a guest speaker at a luncheon being part of an internal conference run by Eisia, Eisai is a global research orientated pharmaceutical company committed to improving the health and all individuals worldwide regardless of wealth or geography. A drug called Eribulin is soon to be added to the PBS. It’s a monotherapy for advanced disease in patients with locally advanced or metastatic breast cancer who have progressed after at least two chemotherapeutic regimens. To qualify for its use, prior therapy should have included an anthracycline and a taxane, unless patients were not suitable for these treatments. Eisai is new to Australia and approached BCNA to send someone who has advanced breast cancer to share their journey. I was honoured to be asked to represent BCNA and myself. I addressed a group of 20 people, some local, some from the UK. The group included Doctor (researcher), Brand and Marketing Managers and Medical Detailers (sales reps to doctors). I have metastatic bone disease in the sacrum and spine as well as metastatic brain disease and have lived with cancer for 8 years. Eisai were keen to understand my relationship with my Oncologist. I said that over time it had changed. When I had early breast cancer, it was a formal doctor/patient relationship. Now that I have Advanced Breast Cancer for a long time, its more of a collaborative relationship as I understand my disease, body and do my homework. Always looking for something that will continue to give me quality fo life. Fortunately I paid $15K for Kadcyla, That combined with stero radio surgery to the brain, my disease is in check and its the first time in ages that I feel I'm not a tightrope. It maybe a honeymoon, but I'll take it. They wanted to know if I had treatment options. I am a private patient and I have always been given options. Another question was navigating the hospital system. Overall I have not had too much trouble except for the Austin Hospital when I had radiotherapy on my spinal cord. Radiotherapy had only moved from the Repatriation Hospital in Heldelberg and their staff were less than satisfactory. I would suggest that its probably better now but first and foremost patient care comes first, not massages and painting classes. I am now at Peter Mac for radiotherapy. Question was asked re Breast Care Nurse and oncology nurse support. I for one have never met a Breast Care Nurse. I have a wonderful relationship with my oncology nurses who are very helpful and supportive people. They also wanted to know who else I relied on. I have two wonderful friends who have been my chemo buddies for 8 years. I love them dearly. Being a pharmaceutical company, they were keen to learn about my side effects and how I deal with them. They have been numerous side effects over the years and depending the medical regime, sometimes I felt overwhelmed by side effects. These included chronic pain, chronic fatigue, irritable bowel (diarrhoea and gastric reflux), peripheral neuropathy, hand and foot syndrome and migraine. Today I have peripheral neuropathy, dry mouth and a runny nose. Kadcyla is a much gentler drug. They also wanted to know other therapies, support groups to cope with the disease. I have and now will do again Palliates to increase my core strength in conjunction with exercise in water. I have always walked and have a very balanced diet. For support I spoke about BCNA and the online network. They wanted to know what the emotional game changers were throughout my journey. From the outset I told the audience that living with cancer for a long time, I have totally accepted it and taken ownership of my disease but early days I treated cancer as an alien and I was going to defeat it. Hereunder is the list. Game Changers over journey 1. Being diagnosed with breast cancer 2. Being well and taking poison making you feel sick 3. Losing hair 4. Being thrown into menopause 5. Being diagnosed with Metastatic bone disease - morality really kicks in 6. Your life is now in a holding pattern as it’s dictated by “cancer” which is king. 7. Giving up work 8. Cashing in my superannuation 9. Being diagnosed with metastatic brain disease and terrified what this would mean to my quality of life. 10. Going on a disability pension. In summary, I really enjoyed interacting with people in a work environment again and didn't feel awkward telling my story. Eisai were very welcoming and thanks to Carlyn Villani, Brand Director fo Eisai for thinking of BCNA. Feedback was that they got a good insight from the patient's perspective which had not been previously considered. They are now more empathetic and hopefully gives them a more rounded approach in their work. Karen Cowley BCNA Consumer Rep
10,000+ members!
I would like to post about my story, how BCNA helped me, and how I try to give back some of the wonderful support I received. Despite regular mammograms and ultrasounds, I found my lump in the shower last year. It was a large fast-growing mass, and a core biopsy showed high grade malignancy, suspicious for lymph invasion. My GP immediately referred me to a breast surgeon, and said to walk there now, and hand the referral in personally. I did, feeling as though I had been hit by a train. After the longest Easter break ever, I saw the surgeon. Because there was some family history, we decided on a bilateral mastectomy to take place 4 days later. This when I first went to the BCNA website, and the women there inspired me with their strength and their courage. They responded with so much support and advice I will forever be grateful. I was being strong for my 4 sons, all grown, but who always thought I was immortal, and for my husband, who is a positive-thinker and always my rock in any storm. We both took a very positive approach from Day 1 – it is what it is so let’s deal with it! My tumour was 3.5cm with no node involvement and clear margins. But it was Triple Negative and Metaplastic – a nasty little bug. My surgeon referred me to my Medical Oncologist, who started chemo 3 weeks later, first implanting a portacath for the 12 weekly infusions. The time passed very fast and apart from a few aches and the expected fatigue, I came through well. It was decided to do 28 radiation treatments, and then a hysterectomy. It all flowed from one thing to another with impressive efficiency, and suddenly it was all done. I will be forever grateful for my multi-disciplinary team here at Premion Place on the Gold Coast. They were absolutely wonderful. Throughout the whole journey I was in contact with my pink sisters on BCNA, and their unfailing support was the glue that held the whole thing together. Since then I have regularly contacted newbies to the site, who were as frightened of the unknown as I was before them. Together we have all become more informed, held each other’s hands over rough spots, and spread love and support wherever it was needed. Words could not explain how much the site has meant to me, and still does. Happy Christmas everyone – we are still here and we are still fighting – love to you all, Michelle xxx
Happy Mother's Day
Yesterday I celebrated Mother's Day a week early with my three beautiful kids and my Mum, Dad and sister. I will be in hospital three hours away from home on the real day, having neurosurgery on my brain metastase, hence the early start. It was a beautiful day that started with a two course brekky in bed cooked by my kids! My compliments to the chef, it was delicious! After much excited gift giving, including Pandora bracelet breast cancer ribbons, we all went out for a lovely lunch at Tranquility Gardens at Legana. The food, company and walk around the lake was exceptional and relaxing. The day was topped off with a roast lamb dinner cooked by my Mum, sister and niece. Thanks ladies I hope you enjoyed Mother's Day as much as I did!
Women Living with Advanced Breast Cancer
Just looking to encourage anyone diagnosed with Advanced Breast Cancer to join the online group 'Women Living with Advanced Breast Cancer'. Many topics are discussed in regards to treatment, side effects, encouragement,friendships,creating a voice for Metastatic cancers. Also anyone looking to meet others diagnosed with Advanced Breast Cancer and are interested in having face to face contact in the Illawarra with others can respond to this blog.
