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
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 [email protected]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.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.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.
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.
small steps forward
Hi everyone, just a little hello as I’m joining you on this journey and now feel brave enough to say hello. I was diagnosed June 28th, following a random self check, two weeks before a planned 5 week trip overseas; and since then I have commenced the journey of small steps through appointments and surgery, cancelling (postponing) the holiday, and I’m now 4 weeks post op - lumpectomy and lymph node removal/biopsies, I have a diagnosis of left IDC. no lymph node involvement, but dcis around the tumour found and also removed. It was a shallow tumour so whilst just enough clearance obtained near the skin, not as much as they’d like. So I’m about to start radiotherapy (in two weeks) with a little extra thrown in for good measure to ensure the skin is treated and be certain there’s no spread there. To say I’m anxious about this is an understatement!!! I also met the medical oncologist today too ( I’m 52 and well into perimenopause) and to commence tamoxifen post radiotherapy too. What a whirlwind/rollercoaster! I’m so very grateful it’s been found early and is being treated, sad that’s it’s happened and angry that life changes so quickly. But currently my fears are the radiotherapy side effects, particularly with the ‘extra’, and then the ongoing meds. I know treatment is optional, but I want to reduce risk of recurrence so will definitely go ahead with it, no question in my mind. But words of wisdom re how to do it ‘well’ or just knowing I’m not alone in my thoughts would be welcomed. Progressing with one small step after another, next step is mapping. Wishing you all well xNewly 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.
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 [email protected]
