📣 Survey Invitation: Tucatinib (Tukysa) and Metastatic Breast Cancer
Dear members, We'd like to invite you to take part in a short survey about tucatinib (Tukysa) for people with human epidermal growth factor receptor 2 positive (HER2+) metastatic breast cancer. This survey is for people who have either taken tucatinib (Tukysa), or tried to access it. Your feedback will help us understand the day-to-day impact of accessing (or not accessing) this treatment, including physical health, emotional wellbeing, financial pressures, and overall quality of life. The insights you share will be used to support a consumer submission to the Pharmaceutical Benefits Advisory Committee (PBAC), the body that decides which medicines are made more affordable through the Pharmaceutical Benefits Scheme (PBS). Take the survey here: https://www.surveymonkey.com/r/LJXB3KT The survey is open until 12 September. The survey is anonymous, voluntary, and takes about 10 minutes to complete. You can skip any question you don’t feel comfortable answering. Thank you for lending your voice to this important advocacy. If you have any questions or concerns about this survey, please contact policy@bcna.org.au
I just found out today
I had my first appointment with my oncologist this afternoon. I had had a PET scan and MRI earlier in the week. I received the results today that the cancer has metastasised. They found a spot on my sternum, back and pelvis. I need to go have a biopsy on my sternum. I was diagnosed with breast cancer on 8 February. 4 days after my father’s funeral. I just feel shocked and numb. I want to feel hopeful but at the moment I just feel hopeless. What do I do to change my mindset? Has anyone else been through similar? I really need to feel like this isn’t a death sentence. I have 2 kids, 15 & 13. I want to be here to see them grow up! Do I even have a chance???
New member
Hi. I was diagnosed with mbc in 2021. An MRI done of my hip (me thinking I needed a hip replacement) revealed a bone lesion and further scans showed I had lesions in my skull, breast bone and right shoulder blade. Radiation helped with the pain in my hip and I am now able to walk unaided. I have been on letrozole and Verzenio (abemaciclib) since mid 2021 and so far results have been positive. Lesions have either shrunk or stabilised and there is no sign of cancer in organs. I know that one day treatment may cease to work but in the meantime I remain positive and enjoy every single day. I love to travel, cook and spend time with family and friends. I’m forever grateful for Bcna, my medical team and all the research that goes in to treatments for this disease. I know others are not as lucky as me and I wish everyone well on their individual journeys.Dupuytren Contracture
Moderator moved @jaynie_000 comment to dedicated discussion post: This is my first post on this platform. I see my oncologist tomorrow, but I have developed a painful and growing nodule on my ring finger / knuckle on the underside of my palm. It’s getting larger and more painful. I am on femara since 2020 when I got diagnosed with stage 4 metastatic breast cancer at age 53. My first / initial diagnosis with early breast cancer was in 2009 and I was 42. I took Arimidex for 9 months but couldn’t cope with the pain in my feet. I changed to Aromasin and it ultimately dissolved my Achilles tendon. I required it to be grafted after it broke. I was on Aromasin for 6 years and gave up on AI’s due to their effect on my tendons and continued pain in my joints and feet. Fast forwards to now and I have had plantar fasciitis (pain in arch of foot) and now I’ve discovered the nodule on my palm. I can’t hold the steering wheel of my car well or open a jar with a tight lid. Any action that requires grip hurts. My oncologist has previously said that Femara can cause tendinitis so I’m ready for her to say give femara a rest for a while. But she has also told me that aromatase inhibitors essentially are the only drug that holds the cancer at bay. Because my cancer is hormone receptive. Ultimately my cancer will recognise an AI and work a way to get around it. When that happens it’s a whole new approach to treatment. So I’m not keen to go off Femara for any period of time. I will put up with side effects. I live in Sydney close to the CBD. I have most of my treatment and appointments through the Mater hospital at north Sydney. I have huge trust for my onc. a professor and specialist when it come to MBC. I am keen to know how you have found the radiation treatment. Did it work? I know an excellent hand surgeon but if I can avoid surgery then I will pursue that option. And my biggest question is …Femara the cause of your Dupuytrens
Little known sign of metastases
I was diagnosed with metastases in 2020, and I recently experienced a strange symptom, which I thought I'd mention here, as it's something that could be a red flag for anyone who is being monitored for recurrence of cancer. I recently started experiencing numbness down one side of my face, chin, lips and tongue. I'm told that this may be due to a trapped nerve, or nerve damage caused by cancer in my scalp or base of the skull. Apparently, sometimes it is the first sign of breast cancer, or of breast cancer that has metastasized, but I had never heard of it before. Anyone who is interested can Google "numb chin syndrome." I'm off to get an MRI of my head this afternoon, to discover exactly what is going on.'Getting on with life' tips
Moderator moved @Batjam to the main discussion section of forum: Batjam Hi all - I’m new to this group. I’m 52 diagnosed St4 Breast Cancer after ending up with a fracture in my hip in Dec 2022. I’ve joint to connect with others - get any ‘getting on with life’ tips etc. Say hi if you are in a similar situation and feel like chattingBCNA Leads First National Roadmap to Collecting Metastatic Breast Cancer Data
A roadmap to finally count the number of people diagnosed with incurable and life limiting metastatic breast cancer (MBC) is a step closer thanks to the $1.5 million announced over the weekend by Prime Minister Anthony Albanese to fund a cancer data alliance. Almost two years ago a group of Breast Cancer Network Australia (BCNA) consumer representatives living with metastatic breast cancer told us they feel invisible. They wanted to be made visible by being counted properly on all our cancer registries across Australia. Currently this data is not consistently collected across all states and territories. Last November BCNA launched the roadmap to address the lack of national cancer data for those living with MBC at Parliament House, Canberra. The roadmap was the result of a roundtable that saw experts from across the sector work towards recommendations to improve Australia’s cancer data, which aligns with one of the priorities of the first Australian Cancer Plan, launched last year. BCNA Director Policy Advocacy & Support Services, Vicki Durston acknowledged everyone who had come together to make this roadmap a reality, including the late Peta Murphy MP who stood with BCNA for many years to have people with MBC made visible through national data collection. “She would have been so incredibly proud that we are now closer to ensuring that the many thousands of invisible Australians with metastatic breast cancer will no longer be hidden in plain sight,” Ms Durston said. “We know that cancer sectors in other countries around the world are watching Australia, this is our chance to build on progress being made and to become a world leader in health data.” This $1.5 million funding to the Australian Institute of Health and Welfare will ensure the formation of an Australian Cancer Data Alliance, which will see state and territory cancer registries supported to work towards routinely collecting cancer stage and recurrence data. “This Federal Government funding will help the sector pioneer the collection of this important data to inform and drive policy, innovation, planning, treatment and care,” Ms Durston said. “How can we possibly support this population living with metastatic disease and meet their needs when we don’t know how many people in Australia are living with metastatic breast cancer? “Today we can begin consolidating a way forward for better quality data not just for breast cancer, but for all metastatic cancers.” BCNA has been calling for improvements to Australia’s cancer data since 1998 and will today mark this key milestone alongside all those with a lived experience of cancer and their advocates. Read BCNA’s report Time to Count People with Metastatic Breast Cancer – A Way Forward
Sadly, Wendy55 passed away on March 3rd, 2024
I have just heard the sad news from Wendy55's partner, Ron, that Wendy passed away on March 3rd, 2024. He asked me to thank everyone for their friendship and contact with Wendy over the years. xx She was first diagnosed with Breast Cancer 11 years ago - and had the most amazing Oncologist who fought for her all the way - she was on many new tests and trials with many good outcomes. Most Oncs will only give you 2-3 'lines of treatment' ... Wendy's Onc gave her 10 or 11. She was on many trials & tests & given meds on compassionate grounds .... but late last year, things started getting really tough. It was Wendy's wish that her friends on BCNA be advised of her passing. She wanted the Dragonfly Motif to grace her name. Wendy was just the most amazing, uplifting, wise, wonderful woman - so tolerant of the treatment she was going thru - yet wiling to share SO MUCH of her story with all of us. Wendy had been the beacon for so many members here (particularly those with Mets) and was so supportive of everyone else, even when she was feeling so crook herself, particularly in the last 6 months of her life. She was incredibly supportive of me, when my beloved husband was diagnosed with Mets in 2020 and passed away in May 2022 .... for which I will forever be grateful. They really could write a book about her Breast Cancer story - as she never stopped fighting. Vale Wendy - Rest in Peace my friend. Fly high xx I have advised my siblings that I, too, want members to know of my demise and the dragonfly attached to my profile, when the time comes. They will email BCNA when appropriate.
Attend our next event - In person (Shepparton, Vic) or online! Wednesday 26 June
We're heading to Shepparton, Victoria on Wednesday 26 June for our next Information Forum - bringing leading experts to the local community to provide insights on a range of breast cancer topics. Plus there's an online option, so you can join in no matter where you are! Just click 'attending virtually' when registering. This Information Forum is for anyone who has recently been diagnosed with breast cancer, who may be living with or after a breast cancer diagnosis and supporters. There will be two simultaneous information sessions throughout the day – one for people with early breast cancer and one for people with metastatic breast cancer. Please register for the session you would like to attend. Joining us on the day will be: Dr Michelle White, Medical Oncologist Dr Carrie Lethborg, Oncology Social Worker Professor Neil Piller, Lymphologist Michelle Parish and Melissa Gilmour, McGrath Breast Care Nurses Local BCNA members sharing their experience Event details: Date: Wednesday 26 June Time: 9.00am for 9.30am start – 3.00pm Refreshments will be served on arrival from 9.00am and a light lunch will be provided. Location: Quality Hotel Parklake, Shepparton Registration: Please register via Eventbrite We would love to see you in person or online. If you have any questions, please comment below or email events@bcna.org.au
