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.pdfThe Lobular Breast Cancer Alliance survey for those with ILC - closes Dec 26th
The Lobular Breast Cancer Alliance is conducting a survey of people living with invasive lobular carcinoma and their experiences with surveillance, meaning the monitoring for a local recurrence or disease progression. While the survey may not benefit you directly, it may be of interest to clinicians and researchers, which could inspire additional much needed research in this area. The survey should take no longer than 10 minutes to complete and will close December 26, https://www.surveymonkey.com/r/surveillancesurvey2024 I've just done it ....Global Lobular Breast Cancer Awareness Day on Tues Oct 15th - Zoom Webinar in Qld
The first Global Lobular Breast Cancer Awareness Day on Oct. 15th is coming up this Tuesday! With more than 20 events in 10 countries, this inaugural awareness day is set to have tremendous impact in the US and around the world. From live events, educational webinars, lunch and learn sessions, mini-conferences and more! Be sure to check our map online here for in-person events in your area. About Lobular Breast Cancer Webinar, QLD Join Associate Professors Pete Simpson and Amy McCart Reed for a webinar in celebration of Global Lobular Breast Cancer Awareness day. Chaired by Professor Sunil Lakhani, a world-renowned breast pathologist, we will discuss the latest in research, treatment and diagnosis specifically relating to lobular breast cancer. Featured speakers Professor Sunil Lakhani, Group Leader UQ Centre for Clinical Research; Executive Director for Research, and Breast pathologist, Pathology Queensland. Associate Professor Pete Simpson, Theme leader for Cancer and Group Leader UQ Centre for Clinical Research; Senior Lecturer MD program Associate Professor Amy McCart Reed, Senior Principal Research Fellow, UQ Centre for Clinical Research. Amy is working to understand the molecular basis of Lobular breast cancer – in particular what makes it a special type. Dr Anna Sokolova, Consultant Pathologist, MPhil candidate, Breast Cancer Trials Fellow. Anna is working to understand if there is the potential to repurpose some targetted therapies in lobular breast cancer. Dr Tivya Kulasegaran, Consultant Medical Oncologist, MPhil candidate, Breast Cancer Trials Fellow. Tivya is working to identify a liquid biopsy to better detect recurrence. You need to register to be able to attend the Zoom Meeting. Here is the link to join the ILC Conference in Qld on Tues 15th Oct 1pm-2.30pm https://clinical-research.centre.uq.edu.au/event/session/9573
New to This
Hi I had a mammogram, followed by an ultrasound and a core biopsy last Friday and today saw the specialist and found out I have Invasive lobular breast cancer, possibly stage 2. Not all results have come back yet. I have to have a bone scan on Thursday and a CT scan followed by an MRI the following week, then surgery the week after. I cant stop crying and feel like a weakling as I know there are many others that are worse off in this world. But I am so scared. I keep thinking they will find it everywhere. At this stage my doctor doesn't think that it is in the lymph nodes but checking the rest of my body just in case. I am a counsellor and think that I should be able to handle this, I think about how I would treat a client going through this but it doesn't help, its all doom and gloom. I hope this doesn't trigger any bad or negative feelings in anyone as when I read back what I have written I start crying again. Well thats me, hello everyone.BreastScreen NSW and Qld may be advising of your Breast Density in 2025 - cancer or not!
This article was in the Sun Herald yesterday ..... yet another woman who was given the all clear from BreastScreen NSW (same as me) only to have Breast Cancer diagnosed just months later. USA & UK are now advising their clients of their breast density & explaining the reason why a mammogram alone is not sufficient for women with dense breast tissue. BreastScreen WA and SA are also advising their clients too ..... WHY NOT ALL THE OTHERS? So it will be another year before this study is concluded, then they will no doubt argue long & hard on the 'yay' or 'nay' factors ...... whilst other women are being NOT diagnosed correctly, when they should have been. This is the article, below - you may need to expand it to read a couple of columns at a time, to make it easier to read ... Make sure you daughters/sisters etc are all aware that those living in NSW, Qld, Vic, Tas and NT - are NOT receiving the same 'duty of care' that BreastScreen WA and BreastScreen SA are giving THEIR clients. :( Mods - @Mez_BCNA - can Dense Breast Tissue please be added to the 'Popular Tag List' .... the only one I can see there is 'breast density' ... if you search by 'dense' or 'dense breast tissue' - nothing comes up
