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
To Chemo or Not to Chemo
Hi everyone, Im 8 weeks post surgery (lumpectomy for ILC). I transferred from Peter Mac to my local public hospital under the impression i’d be doing Radiation.. moving between hospitals has lengthened my time waiting for treatment. After both multidisciplinary meetings, both medical teams have recommended chemotherapy. Everything I read says ILC doesn’t respond to Chemo. I’m so confused! I borrowed money to do the Oncotype test and have now been told it’s not accurate for premenopausal women. Anyone have a similar experience or suggestions on who I can talk to about how to make the right decision. To chemo or not to chemo? Medically: 2 x 2cm tumors removed, Clear Margins post surgery, one 1.4mm deposit found in one of three lymph nodes.The 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
AWAITING SECOND OPINION FROM WBCI
* Previous post was accidentally deleted by myself (fml) * Is there a cancer hiding somewhere in this moderate to highly dense Fibroglandular breast tissue of mine? HISTORY: Age: 36yo Menstruating since 11yo Endometriosis - surgery in 2022. 2 children - 10yo and 5yo Recurrent mastitis infections since the birth of first child. Spontaneous and recurrent mastitis infections since 2019 - NOT related to pregnancy or breastfeeding. Every time was treated with antibiotics except for this most recent episode which started a few weeks ago (July 2024). Struggled to breastfeed both children. No supply or milk production despite starting motillium. Also paid a private lactation consultant with my second child. She alerted to me to my dense breast tissue and said I must have regular scans as cancers can hide. My new GP said 'this is not normal - let's get a mammogram'. FAMILY HISTORY: Significant family history of hormonal cancers on paternal Fathers side. Both paternal Grandmother and paternal Grandfather have significant cancer prevalent on their entire family bloodline. Every female on both of those sides has had breast, cervical, ovarian cancers or precancerous cells Every male on both sides has had prostate cancer, enlargement and /or precancerous cells. SYMPTOMS THIS TIME: Pain and swelling in right breast Pain deep into my right armpit Right side Pea size palpable lump - felt by both GP and breast surgeon Red rash that comes and goes - also a ring around the lump Profuse night sweats hot flushes - in the right breast only! Nausea Loss of appetite Lost 10kgs within 6weeks More frequent bowel movements As of 01/08/2024 - yellowing of my eyes BLOODWORK: FBC completed. CRP was 1.2 - previous confirmed mastitis infections were 138-147 where I was hospitalized. NO true mastitis infection this time. Increased Albumin levels Increased Iron saturation and ferritin (over 10x my normal levels) Lowered phosphate Further bloods were ordered yesterday to check extra things as my eyes have started to yellow. MAMMOGRAM AND MRI Haven't even found or noted the palpable lump that myself and both doctors can clearly feel. Both mention moderate to high dense fibroglandular tissue. Mamm - says I should have routine 6 monthly checks / scans possible ductal ectasia evident MRI - says I am fine - notes a cyst - but this is not a round or oval - there is only spiculated mass in several areas, so where the hell is this apparent cyst?? *GP has confirmed that the Mamm and MRI are inconsistent and has requested both radiologists contact her urgently. She has also requested the Breast Surgeon follow through with a guided biopsy at minimum. As we all know, these little pests can hide in dense tissue. GENERAL BREAST SURGEON Advised me that he is a 'general' breast surgeon and all my symptoms etc are pointing towards something rarer like IBC. He was transparent with me and said he would refer me on to a specialized surgeon if the mamm and MRI come back clean, as he is also suspicious of my symptoms, bloods, and significant family history of hormonal cancers - including my Father and Biological Sister. He is continuing to see me until we can get an appointment with Westmead Breast Cancer Institute, as he does not want anyone to drop the ball on this. He agrees, I need urgent second opinion from surgeons / specialist who specialize in this field. I am impatiently waiting for the WBCI to call me with an appointment. Their booking nurses were on holidays or had covid last week so no bookings could be made. GP and Breast Surgeon have referred me to Prof Elisabeth Elder and Dr James French for a further investigation. So, I am awaiting their call as they are part of WBCI. My questions - How can radiologists get this so wrong? I have snapped all the images that look sus and will attach. How do I advocate really bloody hard for someone to do a biopsy? I have deep dived into research from all over the world to find answers, case studies etc. And thank god I did, so I know to push really bloody hard for further investigations. Seeing case studies with reputable surgeons and oncologists who see women being misdiagnosed every day due to the density of their breast tissue. Its petrifying! I am not Dr Googling. But I am definitely researching reputable studies so I can best advocate for myself so I can live a long healthy life with my family!! *********************************************************** any advice, surgeons' recommendations, words of wisdom welcome. See my images attached.
Invasive Lobular Carcinoma Diagnosis
Moderator moved @LJS comment to own discussion post in 'Newly Diagnosed': LJS Brisbane, Qld I have just been diagnosed with early stage invasive lobular carcinoma in my left breast. The shock and horror of the diagnosis has left me a mess. For a very healthy person, I couldn't believe it. Always had my two yearly mammogram and no symptoms at all! The staff at Breastscreen Qld have been amazing...so kind and empathetic. I am now to make an appointment with the surgeon. Trying to stay positive and work out how to tell my family is so hard. This online group seems a wonderful support. Be strong everyone says. So hard.ILC Stage 2
Moderator moved @tarshy post to 'Newly Diagnosed': tarshy Well hello! My last post failed as terrible at computers and unless straight forward, well.... First "fist full" of breast removed for ILC stage 2. Know this differs from other forms of breast cancers and interested in other people's treatment plans. Awaiting results at present.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/
