💛 Help Shape a New Text Message Support Program for People Living with Metastatic Breast Cancer
We know that living with metastatic breast cancer brings unique challenges, and having access to the right support at the right time can make a real difference. Researchers from The University of Sydney, in partnership with Breast Cancer Network Australia, are seeking feedback from people living with metastatic breast cancer to help adapt the EMPOWER-SMS text message support program so it better meets the needs of this community. The EMPOWER-SMS program was originally developed for people recovering from early breast cancer and was found to be helpful, motivating and supportive. This project aims to ensure the program is relevant and meaningful for people living with metastatic breast cancer. What is involved? 💛 Complete a short online survey reviewing sample text messages 💛 Share your feedback on the content and support provided 💛 Survey completion time is approximately 15-20 minutes Your feedback will directly contribute to the co-design of a support program for people living with metastatic breast cancer. Before you decide 📄 Please take a moment to review the attached Participant Information Sheet, which provides further details about the study, what participation involves, and how your information will be managed. Interested in participating? 🔗 Complete the survey here: https://redcap.sydney.edu.au/surveys/?s=KTCAYNM83FTPY37L Ethics approval ✅ This study has received ethics approval from the The University of Sydney (Reference: HE000885). 💛 Thank you for helping ensure the voices and experiences of people living with metastatic breast cancer remain at the centre of research and support programs.22ViewsSign in to react to this post0Comments
Complete Metabolic Response De Novo TNBC
In July of 2023 I found a lump. It was a few weeks after turning 38. 5 weeks later I was diagnosed with De Novo TNBC, with lung mets. I didn't have any symptoms that indicated my lungs had cancer in them at the time, but while waiting to see if I was eligible for a clinical trial, and which clinical trial, I developed a cough, struggled to walk quickly and couldn't finish a sentence without forcing the air out. The cancer was so aggressive and "hungry" for my blood, my arm would go numb if I tried to exercise, as the primary tumour wanted it more. I needed treatment ASAP. Life was becoming harder everyday and I wanted that valuable time with my children who were 3 and 6 at the time. I was given 1-2 years to live with usual treatment. I went into a clinical trial, Ascent 3. I wasn't suitable for immunotherapy and was lucky enough to be allocated the trial drug, Sacituzumab Govetican, as a first line treatment. So it began on the 4th of October. The first dose was wonderful, it felt like a cold cloth on hot sunburn. After the first cycle, I could hug my children without pain in my breast and read a book to them without becoming breathless. I became determined to win, and to beat this dismal disease. I became unrelenting in my pursuit of being cured. For a year I was on the highest dose of Sacituzumab Govetican. Most of the lesions in my lungs had resolved, but for 8 months I had 2mm spot that was dormant. It became active again and also cleared. In October 2024, I had a lumpectomy with clear margins. I continued treatment with no evidence of disease until July 4th, 2025. Eventually my body couldnt take the treatment any longer, and the trial was interfering with my life. Over 21 months, I had 27 cycles of Sacituzumab Govetican. It's been over a year now, and I've remained in complete metabolic response. I hope I continue to stay this way and eventually be told I'm cured. For now it's been PETs every 3-4 months, but between them I live my life normally. I wasn't sure this was the right area to post my story, but hope can be an important symptom when facing dire circumstances.ViewsSign in to react to this postComments
Men don't like Hormone Tablet side effects for Prostate - trying new meds
On NBN News some years ago ... watch the video! https://www.nine.com.au/australia-news/new-drugs-trials-testicular-cancer-australia-20181226-p5wt63.html Hydroxychlorquine GH (for arthritis) and Lozanoc (Anti Fungal) medications - a mix of which appears to reduce unwanted hormonal side effects for men. Some men who require taking Hormone tablets to reduce the amount of testosterone (and other hormones) that feed their Prostate Cancer - don't seem to like the side effects that the tablets produce. Weight Gain, brain fog issues, emotional issues, aches & pains ...... HELLO?? So they are trialling the use of a combination of 2 drugs to kill the cancer cells -Hydroxychlorquine GH and Lozanoc are showing promising results. Further down the track, they will trial it on ovarian and breast cancer, apparently!ViewsSign in to react to this postComments
67 Male Metastatic Breast Cancer
Good Morning My 67 year old dad was diagnosed at the end of February with Her2 negative breast cancer. He had a mastectomy of the left breast and sentinel lymph nodes removal in March. A week later he had a second surgery to do axilla node removal as 3 of the 5 nodes removed were positive for cancer from the first surgery. The second surgery removed a further 17 nodes all were negative. He had a PET CT scan just before first surgery which came back all clear except for some haemangioma which was not mentioned to us at the time. He was classed as a 2B stage and referred for chemo, radiation and hormone therapy. Things looked positive. At the first appointment with the medical oncologist she booked dad in for chemo, but also mentioned that the PET scan he had done previously showed an area in the T 1 of his spine that should be investigated further as it could be a possible metastasis or a haemangioma. No idea why the breast surgeon missed that in the PET report. Dad did a MRI which unfortunately showed possible metastasis in his T1, T6, T9 and L1. He then had a bone scan which showed same results along with 2 small spots on his ribs. Oncologist has canceled chemotherapy and radiation before it’s even started and put dad on tamoxifen and abemaciclib. He will start denosumab bone injections in about 2 months as he had to pull 2 teeth out to be able to get dental clearance for them. He did a bone biopsy of his L1 yesterday even though oncologist was adamant he didn’t need to do it as the metastasis is confirmed with the scans. Results are pending. His bloodwork is ‘normal’. No radiation has been recommended for now as dad has no pain. The last 2 months has been an emotional rollercoaster. There is very little information out there on male breast cancer. We’re unsure why the PET scan was cleared by the breast surgeon but it turns out there is actually metastatic disease on his spine and ribs. We’re not sure the wait and see approach is ok with us. Do most metastatic breast cancer patients receive chemo and radiation or just hormone blocking therapy. Also not happy bone injections are delayed for 2 months but nothing is replacing it for now. We’re tempted to see another oncologist for a second opinion on treatment. What are your thoughts on dad’s situation?ViewsSign in to react to this postComments
Did you have a Mirena in place like me when diagnosed with breast cancer?
I was diagnosed with breast cancer 3.5 months ago and had a double mastectomy 3months ago. I am 44 years old. I started doing some research as a number of people I know with breast cancer who were young also had a Mirena. There is new research coming out of: -Europe that indicates that there is a 40% higher risk of breast cancer if you had a Mirena, and -Germany that shows that the Mirena can change hormone levels in the breast based on scans I had breast ultrasound scans that show I did not have breast cancer just before my Mirena was inserted 5 years ago, and that it developed post Mirena insertion. I had no genetic factors (based on testing), and no risk factors for breast cancer. It seems highly co-incidental. I also looked up the FDA documentation for Mirena approval and it states that "Spontaneous reports of breast cancer have been received during postmarketing experience with Mirena. Because spontaneous reports and voluntary and from a population of uncertain size, it is not possible to use postmarketing data to estimate the frequency or establish causal relationship to drug exposure..." I am keen to connect with other women who had a Mirena in place and then were diagnosed with breast cancer. If this is you, please respond to this post- I would love to hear your story!ViewsSign in to react to this postComments
WIDER clinical trial
Hello everyone Is anyone participating in the WIDER trial for riblociclib? After much indecisiveness over the last 4 weeks I have decided to participate, and I go in tomorrow to sign the consent forms. But now I’m having doubts!. The thought of putting another drug in my system after just getting back to ‘functional’ after the hardest 12 months of my life, is making it really difficult to know if I’m doing the right thing.ViewsSign in to react to this postComments🗣️ Share your views: Finding My Way Advanced+
Finding My Way-Advanced was one of the first self-guided web-based programs designed to improve wellbeing for people with metastatic breast cancer. Flinders University are now seeking participants to take part in Finding My Way-Advanced+, which aims to test whether adding human support and/or guidance to Finding My Way-Advanced, improves how much people use, and benefit from, the program. The aim is to find out whether guidance improves engagement with the program and outcomes, such as quality of life and distress, and if this differs by whether people received guidance via email, phone-call, or video-call. Recruitment is open for 12 months, with the closing date expected to be mid-2026. You can particpate in this program if you are a person who has been diagnosed with metastatic breast cancer. If you are interested, simply complete the following baseline survey and the researchers will be in contact with you shortly; https://redcap.link/findingmywayadvancedplus.ViewsSign in to react to this postComments📣 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 [email protected]ViewsSign in to react to this postComments
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