Radiotherapy (5 weeks)
If you haven't been through it yet and are worried, please don't. It sounds much worse than it is. The receptionists, nurses and radiographers are really lovely. It doesn't hurt. It doesn't take long. I was in and out within an hour or less. My boob was a bit itchy throughout the treatment and became redder as the treatment progressed. But it wasn't sore. I felt tired for about 30 minutes after the treatment. The first week after finishing radiotherapy, you could clearly see the area and a clear line where the radio was targeted, it was a bit bumpy but not blisters. From the beginning I put sorbelene on twice a day until my friend told me about Tallow cream, I alternated them at first but after a while just used tallow because I found the sorbelene made me more itchy. Second week after finishing; there where a few changes to my skin. It was the same as the after ejects of sun burn without feeling the burn. My skin turned a darker brown, then peeled back to a nice tan colour. I've had quite a few headaches since finishing radiotherapy but I get migraines anyway so it could just be normal for me. I wish you all the best throughout your journey with breast cancer. I hope I have helped to take some worry out of the whole experience. Think happy thoughts, love Becky
Considering EndoPredict before accepting Chemo
Hi everyone, I did a search and this topic hasn't been mentioned in a while since 2023. The main difference seems to be that EndoPredict ($2980) is now eligible for partial Medicare rebate ($1103). However, it is still a considerable cost for many of us. I'm having to decide whether to take the test and hope that maybe the outcome could be that Chemo is not of benefit to me. Going by what the medical oncologist told me it is doubtful that Chemo would not benefit me - the use of "aggressive" to describe my stage 3 cancer makes me think that. Though he did still mention the testing to me so I had a choice. I'm torn and scared. With my previous cancer (liposarcoma) I didn't have Chemo so it is an unknown scary beast. My two main concerns with Chemo are the heart and bone damage risks. I get that the decision to have the test is a very personal one and nobody can make that choice for me. For me it isn't just financial, the main choice is whether I consider Chemo is worth it. Even if the test comes out a low percentage for recurrence, is that enough for me to say no to Chemo? After all, the test is the risk of recurrence in 10 years and personally, I'm now on cancer number 2 (different types) in a 14 year period. Have many of you have taken the test? Or would you take it now that it is partially rebated by Medicare? Thank you for reading and being sounding boards.
Early Access Program - Kisqali / Ribociclib for EBC
Hi there, My medical oncologist called me yesterday to discuss the issues with the current early access program for early BC and Kisqali / Ribociclib. Apparently, the current formulation contains very small quantities of 'nitrosamine' which have been shown in studies to potentially (in a very small number of cases) cause another cancer. The new formulation will not be available for a few months from the manufacturer. Has anyone else who is on Ribociclib had this discussion with their med onc / decided to pause the drug - or decided that the risks are OK and chosen to continue with the medication? Noting there is a BC conference in Berlin next week (my med onc is going but not presenting) and there are a number of sessions discussing CDK4/6 inhibitors for early BC with high likelihood of recurrence. Not sure also if this affects mets patients who are on Ribociclib already too? Just when I think I'm on a certain path things change ... again. Kelly (totally acknowledging personal choice etc - but keen to know what others have been told, and if anyone is OK to share, what they have decided to do).
Are you experiencing pain following treatment?
Register for the Persistent pain, addressing quality of life webcast on Wednesday 7 February, 7pm - 8.15pm AEDT. Register now (and if you miss it, we will email you the recording) This webcast will address types of persistent pain associated with early breast cancer treatments, strategies to manage pain and further resources and support that may be available to you. We will be joined by three experts on the night, Professor Paul Glare, Pain Medicine Specialist, Dr Charlotte Tottman, Clinical Psychologist and Naveena Nekkalapudi, BCNA Consumer Representative. Naveena will be sharing her experiences of persistent body pain and why quality of life is paramount to her. You will have the opportunity to put forward your questions when you register or during the event. For more information about the webcast and speakers, and to register, please visit https://www.bcna.org.au/event-directory/webcasts/persistent-pain-after-breast-cancer/ Please feel free to pop any questions below in the comments or get in touch with the events team via events@bcna.org.au. We look forward to seeing you there!
Ask the Expert: Managing side effects of hormone blocking treatment with Dr Michelle White
Hello everyone! We will be hosting our next Ask the Expert Digital Event on Managing side effects of hormone blocking treatment with Dr Michelle White. Click here to register for the event. Approximately two thirds of all breast cancers are a type called hormone receptor positive. This means they use the hormones oestrogen and/or progesterone to grow. The recommended treatment for people with hormone receptor positive early breast cancer usually includes hormone-blocking therapy, a tablet taken daily for between five and 10 years. For people with metastatic breast cancer, hormone-blocking treatments can provide long term disease control. The side effects of these treatments may be mild and easily managed, but for some people they can significantly impact their quality of life. At this Ask the Expert event, we will hear from medical oncologist Dr Michelle White and BCNA Consumer Representative Kym Berchtenbreiter. Michelle specialises in treating women diagnosed with breast cancer and is the lead investigator for several local research studies and the development and conduct of clinical trials. Kym was diagnosed with early breast cancer in 2009 and will discuss the side effects she experienced from hormone-blocking treatment, her strategies to manage them and her advice for others. This session will address what you need to know about hormone-blocking treatment, including common side effects and how you can manage them, and how to ensure a good balance between quality of life, risk of recurrence and control of disease progression. During this event you will be able to ask Michelle and Kym questions. Please share your questions prior to the event via the question box on the registration page or email events@bcna.org.au. During the event you can submit questions via the discussion box on your screen. If you have any other questions prior to the event, please email events@bcna.org.au. For any technical difficulties on the evening, please contact Redback Studios on 1800 733 416. Event Details Date: Wednesday 29 June 2022 Time: 6.30pm - 7.45pm AEST Where: Online – from your computer, tablet or laptop Your Local Time: WA: 4.30pm NT, SA: 6.00pm QLD, ACT, NSW, TAS, VIC: 6.30pm
Clinical Trials Update
Hello members, Our BCNA Senior Policy Officer has provided the below information regarding clinical trials that may be of interest to our members. These are also being shared in our Health Professionals Network News and the Metastatic Advisory Group (I shall post in the mets private group re EMBRACE Phase II trial). Nivolumab neoadjuvant/adjuvant clinical trial The CA209-7FL neoadjuvant/adjuvant breast cancer trial continues to be open to recruitment, running in South Australia, New South Wales and Victoria for patients with estrogen receptor-positive, human epidermal growth factor receptor 2-negative early-stage breast cancer. Bristol Myers Squibb will be implementing a digital advertising campaign expected to launch in October/November 2021. This will target both health professionals and patients. More information on the trial can be found here. EMBRACE Phase II Olaparib clinical trial EMBRACE is a Phase II clinical trial of the PARP inhibitor, Olaparib, in HR-deficient metastatic breast and relapsed ovarian cancer in patients without germline mutations in BRCA1 and BRCA2. Patients with metastatic triple negative breast cancer (TNBC) or relapsed platinum-sensitive high grade serous ovarian cancer (HGSOC) after first line/adjuvant therapy who have an eligible tumour molecular analysis result are suitable for the trial. There are 11 sites open in Australia in NSW, QLD, VIC, SA and WA. More information on the trial can be found here or by emailing embrace.study@sydney.edu.au We encourage members to talk with their treatment team in the first instance about any clinical trials.
