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
Season 2: Podcast Series "What You Don’t Know Until You Do, with Dr Charlotte Tottman"
Charlotte is back with an 'unlimited' season! Season 2 of our popular Upfront About Breast Cancer podcast What You Don’t Know Until You Do with Clinical Psychologist Dr Charlotte Tottman is available now (You have direct access via the bottom of the Online Network homepage) With over 58,000 listens, Season 1 proved to be a valuable resource that shared the reality of what it’s like going through a breast cancer experience. We heard about Dr Charlotte Tottman who established her own private practice in psycho oncology, before being diagnosed with breast cancer herself. Charlotte shared her lived experience with breast cancer, exploring common psychological triggers and responses, while providing tips of what helped her. (Read the popular Online Network discussion for the Season 1 via link Upfront About Breast Cancer – What You Don’t Know Until You Do, with Dr Charlotte Tottman) This new season is 'unlimited' to reflect a broader experience from a clinical perspective, stripping away the common limitations imposed by the discomfort associated with difficult topics, while providing practical strategies to help people at any stage of their breast cancer experience. Start your day with Charlotte and Kellie as they have meaningful conversations about many topics including anxiety, advocating for yourself, causal beliefs, metastatic breast cancer, re-starting life after treatment, behavioural changes, boundary setting, different perspectives, side effects and the inevitable; death and mortality. Listen to What You Don't Know Until You Do: Unlimited via BCNA or wherever you get your podcasts. https://www.bcna.org.au/understanding-breast-cancer/bcna-resources/podcasts/charlotte-tottman-podcast-series/ Note: We recommend that listeners exercise self-care when listening to this podcast, as some may find the content upsetting. BCNA’s Helpline provides a free confidential telephone and email service for people diagnosed with breast cancer, their family and friends. Our experienced team can help with your questions and concerns and direct you to relevant resources and services. Call 1800 500 258 or email helpline@bcna.org.au
Share your views: Artistic tattooing of breast-cancer mastectomy scars
Hi everyone! Following up on my previous post, I’d like to invite you to participate in a PhD research study being conducted by Tina-Maree Newlan of Charles Sturt University on artistic tattooing of breast-cancer mastectomy scars. The study aims to investigate the experiences of women who have had breast cancer mastectomy surgery and their experiences with making choices and decisions to decoratively tattoo mastectomy scars and what do those experiences mean for them. This request has been reviewed and approved by BCNA, and the project has been approved by Charles Sturt University Human Research Ethics Committee (Protocol number H24311). You are eligible to participate in this research study if you: are a women aged 18 or over have had an early breast cancer diagnosis, breast cancer mastectomy surgery and completed, or are in the process of completing, professional decorative artistic tattooing of mastectomy scarring Would like to participate in an interview and are English speaking sufficient to participate in an interview What does the study involve? Eligible participants would take part in an initial 60-minute interview (via Zoom or face to face, depending on geographical location relative to the Gold Coast) and then a subsequent second 30-minute interview around two months later. How do I take part? If you are interested in participating in this study or have any questions, please contact the researcher, Tina-Maree Newlan at tnewlan@csu.edu.au
Questions for your surgeon/medical team when diagnosed - ILC based but also relate to other BC types
This document has a huge number of questions that you may like go over - and put to your Surgeon, Onc, and/or Medical team at some stage of your diagnosis and treatment ..... Altho it is based on those with Invasive Lobular Cancer (ILC) .... many of these questions also relate 100% to all BC Types .... the more questions you ask, the more you understand your diagnosis. Go thru them and see if any may relate to you. If some questions specifically refer to ILC - you could replace ILC with 'your' BC type ..... and see if you'd like to put any of them to your own medical team? https://lobularbreastcancer.org/wp-content/uploads/2023/03/Questions_for_My_Doctor_FINAL_-2023.03.21.pdf
Is everyone sleeping or just not posting?
Hi there Not sure at what point I go from newly diagnosed (August 2024) to more? Or if I’m no longer considered “new” if I’ve just had surgery early October? Like many others I’ve been busy just getting ready and preparing and being overwhelmed. These few days post surgery at home are the time I can now think. Only I can’t really think, it’s just blank and nights are the worst.New here...my story so far
Hello, I’m new the group and haven’t shared my story yet. It’s taken me a little while to be able to read some of your stories and not have ‘freak out’ moments. Thank you to all of you for sharing your stories. It is important to see the full gamut of what is happening and what is to come. In my initial moments I was overwhelmed reading here because I was so scared every time I read and got caught up in thinking if it would happen to me too. So I selfishly took myself away from reading and gave myself time. I was diagnosed with EBC (early breast cancer) in August after a Breastscreen appointment that picked it up. I have a fibroademona that was detected and checked when I was in my 20-30s so I fully expected that would come up in scans. In fact, I had noted a lump in my breast and had managed to convince myself that it was just the fibroadenoma that had grown. It’s amazing how we can easily convince ourselves isn’t it? Not quite delusion, not quite outright denial but I did have a few things going on at the time. I lost my job of over 20 years, Covid shut down the world and just when I was finding balance and working again I fell down some stairs and broke my leg. So for two years, I let other things take priority over having my Breastscreen checkup. I’m one of those cautionary tales and I’ve had to give myself grace and not blame myself too much over it and think on the ‘what ifs’. If I keep on the ‘what if’ I will just go crazy and overwhelmed emotionally and I have to get on with it. Decisions have to be made and now knowing what I know, I can’t wait any longer. Here is where I tell you all that this isn’t my first time with cancer. In 2010 I had surgery and radiation for a liposarcoma in my arm. I was finally cleared and cancer free by 2018/9. So I’ve had a few years of not thinking about it except when I see my scars. To say that I am scared is a huge understatement but I’m a planner and practical person mostly so I cope by finding solutions. I don’t know what the stats are on survival rates for my situation, it’s one of the questions I haven’t asked yet. Partly because I’ve gone into solution mode and partly because I am just that bit too scared I guess. My EBC journey so far has been all about finding a surgeon which I was lucky enough to be able to do from my specialist physiotherapist. I’d been seeing that physiotherapist for my arm and knew she also worked with many women with breast cancer. She referred me to my cancer surgeon. The decision to have surgery was an easy one after the sarcoma I knew it was necessary. Having the choice of breast saving surgery and reconstruction is a blessing. I chose to have my other breast symmetrised at the same time. To my thinking, if I was going for surgery I preferred to do it all at the same time. My surgery was 8 October so I am now 2 weeks post surgery this week and healing amazingly well. I’m grateful that my body heals so well. I am also grateful that I was able to read up on tips on the BCNA site. I chose to go private so that I could choose my surgeons, both of whom are excellent in their fields and have been wonderful. So what are my numbers? My EBC lump was 37mm Grade 3 invasive carcinoma, ER and PR 75% 3+ positive, HER2 negative with clear surgery margins. However, 2 of 3 lymph nodes showed metastasis with largest tumor deposit 22mm. That is the current concern and so I’m due to have a PET body scan this week and consultation with a radiologist and oncologist. My surgeon tells me that she wanted more information before deciding my radiation protocol and further treatment. I know I will also have hormone suppression treatment but am not there yet. I am thankful that the research on breast cancers is so extensive that treatment protocols are updated often. My surgeon tells me that previous protocol for lymph node involvement would have meant instant removal of all lymph nodes. Whilst I am grateful I may not lose all of my lymph nodes and that I may have options, a part of me is also really sad and scared knowing that the reason there is so much improvement in treatment is because there are so many women that have had to go through this before me. That’s me, my story so far. I was brief though wordy. I will continue to read and share where I can, you may have noticed that I struggle with sleeping 😊 Sad to be here, grateful to have your support.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.Newly Diagnosed - Intro
Moderator moved @OTISMYCAT post to dedicates post in 'Newly Diagnosed': OTISMYCAT BRISBANE QUEENSLAND June 10 Hi my name is tanya. I was diagnosed last wed with invasive globular carcinoma.i have to have a mastectomy.im 62 yes ols. A mammogram picked up one lesion then an ultra sound found three more.my first visit with my oncologist is June 18rh.my whole world has been turned on its head.
Confused & Overwhelmed
Hi everyone I'm brand new & so overwhelmed. My nurse has passed on theses details & I'm looking to share my story, offer my support & hope my new sisters can help & guide me please. I've got a small 11 x 8mm cancer. Grade 2, invasive ductal, ER 95%, PR 95%, Her negative & I'm booked for surgery 24 October. I've been told to have the Mirena removed & stop all HRT immediately. I'm 57, fit & in good health. I'm in menopause & have been on my HRT for a bit over 12months. I'm currently on Ovestin three x week & Sandrena & Androfeme daily as well as having the Mirena. From all I've read I'm really concerned about stopping the HRT as I feel that the risks I will expose myself will outweigh any benefit. I also wasn't sure about stopping "cold turkey". If anyone can offer any info about this type of cancer & has continued with their HRT etc I would be extremely grateful. Thanks.
Time to process
Hi All, my intro post. Such a roller coaster of emotions and processing suddenly going from perfectly healthy to not! I had a Diagnosis 22/12/23 IDC with 2.9cm tumor and lymphnode involvement from BreastscreenSA. ER and PR +, Her -. (Xmas is harsh to get such news, both in the slow down of services and in telling nearest and dearest) It has taken a while (necessary tests, scans and byopsies), but looking at treatment beginning Wed 28/2/24 with surgery (partial masectomy, axillary node clearance). Then most likely chemo, radio, hormone therapy. Overactive imagination has been a problem, general stress/anxiety, and not sleeping well. It is settling a bit now, as Ive met surgeon and feel comfortable I am in good hands, met with Breast nurse (and now have a bright pink pillow and lovely accessories pouch for fluid tubes). I am participating in a clinic trial that I meet criteria on that I decided yes to assist. I am going ahead on a planned and booked holiday next week (which several family are also going), the surgeon was supportive on proceding with this as mental health positive. Then it is full steam ahead! I am fortunate to have supportive family, and some great friends, some who have had a bc journey themselves. Was concerned about work for a while, but Ive let the h.r. depts know (two jobs) of upcoming medical, and am scaling back for as long as I need (casual events hospitality - high energy, physical and customer facing, they will still be there when I can manage again!) So I think I am in about the best positive I can be for now! Not keen on whats to come, but ok to get on with what needs to be done! Thanks for reading, and thanks to all those sharing posts and info themselves - it has helped.
