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 ....Awaiting surgery pathology, so many questions re treatment possibilities, timing etc.
Hi everyone, this is my first post here. I was diagnosed with ILC 24 Feb, had a left mastectomy 17 March with ALND as there was cancer in the sentinel node/s. I have an appointment with my surgeon this week (30 March) where I will find out my treatment plan and pathology results. I had 2 tumours biopsied 20 Feb, both were grade 2, one pleomorphic, the other non-pleomorphic, both are ER and PGR positive, HER2 negative. I was not given the option of reconstruction as the cancer was too close to the skin to safely conserve it. I'm 49, fit and healthy, have been cardio and strength training 4 days per week for over 6 years and have been walking my border collie puppy about 25km per week since Christmas, so I'm really hoping this will help my body get through treatment as best I can. Now for the questions, For those who had ILC with lymph node involvement, were you always offered chemo and then radiation and if so how long / frequent was your treatment? How long after surgery did you start chemo? I have been offered to go on a fantastic relaxing holiday 10-17 April and am hoping to go as we've had to cancel our original holiday plans that were to start at the end of this week. I have booked in to have my eyebrows tattooed (featherbrows), if you had this this done prior to chemo treatment, were you glad you did? If you originally had a single sided mastectomy did you choose to remove the other breast at the end of treatment? The CT scan I had recently found no signs of matastasis which I'm clinging to, however a rather large mature teratoma was discovered on/near my ovary so it is likely I will also have a full hysterectomy including removal of ovaries and cervix. Given that estrogen needs to be blocked and I'm currently premenopausal, this is the likely recommendation given my diagnosis. I will find out soon, but I'm expecting this surgery would occur after radiation therapy. Any other advice is most welcome, xoThe Breast - scientific papers on all types of BC & conditions .... a great resource
I have found these Very recent publications re breast cancer & related topics .... there are many topics covered. ALL Volumes (about 6 articles in each volume), and about 6 'volumes' a year .... https://www.sciencedirect.com/journal/the-breast/issues The Aims & Scope of the Website: You can put any subject in the 'search' area - I put in Invasive lobular & these results came up .... recent scientific papers. https://www.sciencedirect.com/search?qs=invasive lobularPDF Guideline to Invasive Breast Cancer ...
Here's a very 'in depth guideline' on invasive breast cancer - ductal/Lobular ..... explaining everything from go to woe .... I've recently joined NCCN.org - and it has info on all different sorts of Cancers ...... with intensive GuideLines on each. Check the PDF doc at the bottom - In case you can't read the link below (unless a member). I've added it as a PDF to 'click on' as well .... https://www.nccn.org/patients/guidelines/content/PDF/breast-invasive-patient.pdf If you are interested in any other Cancer Guidelines, I am happy to download them for you ...Annabel Crabb - Q&A on Recurrence & Fear of Recurrence - 11th May 5-6.30pm
Annabel Crabb is doing another online presentation on Recurrence & fear of recurrence this time (last one was on mets) I have registered & will hopefully watch it later as that is hubby's chemo day, so I may not be able to watch 'live'. You can also put up a specific question if you like when you register (tho as thousands attend, it may not be addressed 'live') I've put one up about Lobular recurrence - as it can also recur in the bowel/gut/stomach/bladder - but if a biopsy is done & the pathologist doing the tests is not aware of the Lobular status - it can be missed if they only use 'regular' cancer testing ..... it has to be specifically added on the 'request' to look for lobular. Symptoms are cramping, diarrhoea, pain, bloating, reflux, incontinence .... so if you ever get any of this & it persists - get checked out & if you are ILC - mention it. Join us for our next online Q&A all about breast cancer recurrence. We're bringing together leading Australian breast cancer researchers to answer your questions on this important subject. Moderated by Australian TV presenter, commentator and author Annabel Crabb. https://www.breastcancertrials.org.au/news/qa-events/qa-registration/Verzenio now on PBS for early BC, as well as Advanced BC, from 1st May 2024.
Great news - on the News tonight - this reduces the cost of the drug from $100,000 over 2 years to under $32 (approx) a script ($7.70 concession)! Media event date: 28 April 2024 Date published: 28 April 2024 Media type: Media release Audience: General public For the first time in 15-years women with an invasive form of early breast cancer that has a high risk of returning after initial treatment will now have access to an additional medicine thanks to the Albanese Government expanding the listing of abemaciclib (Verzenio®) on the Pharmaceutical Benefits Scheme (PBS). From 1 May 2024, Verzenio will be expanded on the PBS to treat patients with hormone receptor positive (HR+), human epidermal growth factor receptor 2 negative (HER2-), lymph node positive, invasive, resected early breast cancer at high risk of disease recurrence. Sadly, these women face a one-in-three chance of their cancer coming back despite surgery, chemotherapy, radiotherapy and ongoing hormone therapy. Breast cancer is the most common cancer among women and each day about 57 Australians are diagnosed. Early breast cancer is invasive cancer that is contained in the breast and may or may not have spread to lymph nodes in the breast or armpit. HR+, HER2- breast cancer is the most common form of breast cancer, accounting for around 70% of all cases. Verzenio works by blocking the action of specific overactive proteins that signal cancer cells to grow. This helps to slow or stop the growth of cancer cells. This life-changing listing is expected to benefit around 2,400 patients per year. Without subsidy, patients may pay $97,000 per course of treatment. The PBS listing of this medicine means eligible patients will pay only a maximum of $31.60 per script, or just $7.70 with a concession card. Quotes attributable to Minister Butler: “Every year thousands of Australian women get a life-changing breast cancer diagnosis. “The Albanese Government is working hard to ensure each one gets the latest and the best treatment at a price they can afford. “This listing of Verzenio will benefit thousands of Australian women, and is yet another example of how the Albanese Government is delivering on its promise to provide cheaper medicines.” https://www.health.gov.au/ministers/the-hon-mark-butler-mp/media/new-hope-to-treat-women-with-early-breast-cancer and on NBN News on Facebook: https://www.facebook.com/photo/?fbid=827492942746796&set=a.635131171982975 https://www.canberratimes.com.au/story/8608673/new-hope-for-aussies-battling-early-stage-breast-cancer/
