Ceasing hormone therapy
Hi Everyone. I am 43 and was diagnosed in October last year with Stage 1 ductal breast cancer in my left breast. I had a lumpectomy and sentinel node removal in November with clear margins and clear nodes. Completed a three week course radiation in January and started zoledex injections in December and exemestane tablets in January. Since late January I have had extreme pain in my right shoulder I’ve had an ultrasound, x-ray and a cortisone injection. My joint pain is quite significant and is really impacting on my lifestyle. I have pain in both shoulders, my hips and arms. I can’t get comfortable to sleep. I’ve been told that this all due to the hormone blocking therapy. I am seriously considering stopping therapy. I was pre-menopausal before commencing hormone blockers and feel that the impact of these side effects on my life outweighs the potential of reducing the chance of the cancer returning. has anyone here experienced the same and stopped treatment? If so did your side effects subside? Any information would be gratefully appreciated.🎧 Have you connected with our podcast: Upfront About Breast Cancer
Within our Online Network, we know how important it is to feel informed, supported, and connected at every stage of a breast cancer experience. One of the many ways we support our community is through our Upfront About Breast Cancer podcast. This is a resource created for you, where real stories, expert insights, and practical guidance come together in a way that is easy to access whenever you need it. A much loved part of the podcast is the What You Don’t Know Until You Do series, hosted by Dr Charlotte Tottman. Dr Tottman is a psycho oncologist who has supported many people through the emotional impact of cancer and, following her own breast cancer diagnosis. Her thoughtful and compassionate approach creates a space where the emotional side of breast cancer can be explored openly, helping listeners better understand their own responses and feel less alone in what they are experiencing. 💬 Real conversations from our community Upfront About Breast Cancer brings together the voices that matter most. People with lived experience share their stories alongside healthcare professionals and experts, creating conversations that feel both genuine and reassuring. These discussions reflect the reality of breast cancer. They explore the shock of diagnosis, the emotional highs and lows, and what it can take to adjust to life during and after treatment. For many, simply hearing someone else say “me too” can make a powerful difference. 🌱 Supporting you at every stage We know that every experience is different, which is why Upfront About Breast Cancer is designed to support people across all stages. Whether you are newly diagnosed, living with metastatic breast cancer, supporting a loved one, or moving through life after treatment, there is something here for you. Episodes cover important topics such as what to expect after diagnosis, how to communicate with your healthcare team, managing side effects, and navigating the healthcare system. This means you can return to the information in your own time, absorb it at your own pace, and feel more prepared for the next step in your journey. 👉 Listen to Upfront About Breast Cancer podcast here. 🌸 A gentle reminder Some topics may feel emotional or challenging. Please take things at your own pace and look after yourself as you listen. Support is always available, the online community and our Helpline on the phones are here for you. Have you listened to Upfront About Breast Cancer? We'd love if you shared: an episode that stayed with you something new you learned a conversation you would like to hear in the future 💪 Your experience may help someone else going through a challenging part of their journey. We are stronger, together.👣 CanSTEP Study – Share Your Views! (Sydney/Brisbane/Adelaide Residents)
Are you a cancer survivor living with tingling, numbness, or burning pain after chemotherapy? Researchers want to know: Can fun stepping games help reduce these symptoms and improve your quality of life? Join the CanSTEP study – a 6-month research project by Prince of Wales Hospital and Neuroscience Research Australia. What’s involved? ✔ Home-based step training using a wireless mat (just 80–120 mins/week for 16 weeks) ✔ Questionnaires & assessments on symptoms, balance, and cognition ✔ Random allocation to training or usual care (with option for training later) Who can join? ✅ 18+ years old ✅ Living in Sydney, Brisbane, or Adelaide ✅ Finished chemo at least 6 months ago ✅ Experiencing neuropathy symptoms affecting walking ✅ Able to walk 10m without an aid ✅ Have internet access 📞 Call 02 9399 1734 📧 Email canstep@neura.edu.au Approved by South Eastern Sydney Local Health District Human Research Ethics Committee. 👉 Interested? Comment below or reach out today!
Capecitibane
Hi there I now have secondary breast lung cancer nodules. My oncologist has trialed me on Pablociclib and Abemaciclib however nodules have continued to grow and increase in number. They are now suggesting a few other options, one of them being Capecitibane. Again symptoms sound awful, especially hand foot syndrome 😞 I would appreciate any accounts of personal experiences with symptoms and results after use. Thank you in advance 🙏🫶
Radiation Side Effects Broken Skin Tips?
Hi everyone. I am on day 8 of post radiation and the skin in my under breast and just below breast in the crease has peeled and is basically red raw. Is truly distressing and awful. I have large breasts so it's so hard to manage due to the weight. I am putting on StrataXRT and trying to let it dry by lifting the breast up but when working and walking around it's so painful and is so red and sore. I wanted to ask you all if you have any tips on this and how long it takes to stop weeping and breaking off? I got very upset about it as is so horrible and will be speaking with my nurse but wanted to reach out to the community to ask for any advice or similar situations. Hope I haven't over shared on the details of the horribleness.Abemaciclib and hair loss/thinning
Hi lovely ladies I have metastatic BC (adenocarcinomas in chest wall) and have recently switched from Pablociclib (as my immunity was being significantly impacted and ended up with cellulitis and sepsis as a result) to now Abemaciclib with the monthly Fulvestrant injection. I have only been on abemaciclib now for 4-5 weeks and my hair has thinned significantly all of a sudden...after losing my hair twice with two lots of chemo in 10 years I am now quite fond of the hair I have grown since my last chemo. Sounds silly but with everything else I don't want to lose my hair again. My beautiful BC nurse advised this would likely happen but everything you read suggests it will only stop thinning/disappearing when you stop the abemaciclib..potentially that won't happen. Can anyone share what has happened to them please in this regard - much appreciated thank you :)👣 CanSTEP Study – Share Your Views! (Sydney/Brisbane/Adelaide Residents)
Are you a cancer survivor living with tingling, numbness, or burning pain after chemotherapy? Researchers want to know: Can fun stepping games help reduce these symptoms and improve your quality of life? Join the CanSTEP study – a 6-month research project by Prince of Wales Hospital and Neuroscience Research Australia. What’s involved? ✔ Home-based step training using a wireless mat (just 80–120 mins/week for 16 weeks) ✔ Questionnaires & assessments on symptoms, balance, and cognition ✔ Random allocation to training or usual care (with option for training later) Who can join? ✅ 18+ years old ✅ Living in Sydney, Brisbane, or Adelaide ✅ Finished chemo at least 6 months ago ✅ Experiencing neuropathy symptoms affecting walking ✅ Able to walk 10m without an aid ✅ Have internet access 📞 Call 02 9399 1734 📧 Email canstep@neura.edu.au Approved by South Eastern Sydney Local Health District Human Research Ethics Committee. 👉 Interested? Comment below or reach out today!
It’s been awhile . Lobular and scans
I just wanted to touch base and say hello. I was diagnosed 2018 Denovo ILC to GI tract. First line of treatment Ribociclib/ Letrozole was on this for just over 5 years . Well tolerated until I could not handle the constant nausea. I am now on monthly Fulvestrant injections , on and off for a year or so . I did 10 weeks in Europe last year and had a break . Other than site soreness and constant nausea I’m doing ok . Unfortunately my Lobular does not scan well and tumour markers are useless , so symptoms are my way of knowing things are changing . Anyone else with Lobular have scanning issues ?Scar Tissue
Hello Members, I am new here. I had bc in my left breast in 2018. After 18 rounds of radiation I was all clear. I am just wondering whether anyone else here has pain that radiates from under their ribs up to under their breast. This started for me about 8 months after radiation with just a stabbing pain in my upper belly under my ribs if I deep laughed. It has now progressed and when I get the pain it moves from the upper belly up to the breast. I have had X-ray, ultrasound which were all clear and the GP thinks it is scar tissue. Has anyone else had treatment for this? Your feed back/thoughts would be appreciated.
