A tiny inflatable boat in a huge storm
Like many others, here I am joining this not-so-sought-after club- and feeling very much like a tiny inflatable boat in a stormy sea. I‘be just been diagnosed this week, although the process has been a bit back to front due to how busy things are during COVID. It feels like everything is happening all at once. Every day this week my understanding of my situation has radically changed. My brain is struggling to comprehend. What I know so far is that it is 99.9% likely that I have inflammatory breast cancer. Even before the biopsy the doctor was prepping me for the likelihood of chemo starting next week (🙀👎💩). But now, having received my FNA and core biopsy, the appointment has been moved up to tomorrow. Understandably I am freaking the @&$! out! My rational brain knows this is “bad but good”. Bad news, but good to have modern medicine, urgent care, to know this is happening in my body. I’m struggling to keep up with the pace of things, let alone telling people in my world AND figuring out what to do as a self-employed business owner. Finally I come to my question: for those of you who have been in this “new diagnosis shock” stage, what are the things you think can wait, and what are the things a person should focus on at this time? Eg/ should I be worrying about my business right now? How much should I let everything fall apart? Well, that turned into an essay-length vomit of all my feelings but having read other posts, I know I’m not alone in this weird state of diagnosis mind!!! (Thank you to all the posters on this site for your generosity in sharing your painful experiences, searching the threads has been really useful and helped me to gain a little more perspective with everything I read).
Grade 3 Triple Negative
hi!! I just wanted to say my first hello and what an amazing place this is to come for loads of wonderful advice and info!! I was diagnosed on 6th Nov with Grade 3 Triple Negative IDC and am having a double mastectomy with reconstruction next wed 4th Dec. I’m a mum of 3 (19,16 & 7) and had only just turned 40 when I experienced a sharp pain in my breast and went to have it checked. No staging as of yet, I had one swollen lymph node biopsied which came back clear and CT was clear apart from pre existing liver hemangiomas (just something else to add to the mix) but still waiting on bone scan results.........if that isn’t the most anxiety endusing thing on the planet I don’t know what is, Ive been hyper sensitive to every ache and pain I get!! Chemo is planned for the new year. Anxious but eager to get into it, all the waiting is the worst 😣
'About Me'
Just a suggestion to many. If possible could members of this Online forum, include a little more information about their diagnosis and type of Breast Cancer. In the 'About Me' part of their profile. I don't know if others have trouble. But sometimes I have trouble understanding a problem and or giving advice. Especially if pieces of information appear separately in different Discussions. Only a suggestion.
recovery and life
It has been a week since my surgery for the lumpectomy and node removal. Funny enough, I was not nervous. I went into surgery calm and with the attitude - I am in good hands. Surgery took a bit longer because I found out today they got a rather nasty surprise.....the lump measured 8.5 cm or 85mm instead of the 2.5 cm they thought it was going to be. In their words "it was angry". With my slightly dark sense of humour - all I thought was "you would be angry too if someone came and threw you out of your comfortable home!" However, i know that 'angry' is not a good phrase in medical terms. The nodes biopsy hauled out 5 and 4 came back positive with the 5th showing signs of being 'annoyed'...clearly another medical term for "Not happy Jan!' This afternoon, I am being 'rushed' in for a full body cat scan and on Monday a bone scan is to be done. The medical team were hoping for both scans to be done tomorrow so they could have the results to be back for the conference being held prior to our meeting Monday afternoon. Alas, they will only have the CT scan. The doctor was truly fantastic in her delivery of how things had gone and she gave me time to try and catch my breath again. Once we had finished talking, my Breast Care Nurse called and confirmed the appointments, requirements for them and then asked the important questions - "How are you feeling??" - shell shocked again but to be honest, I had a 'feeling' that there would be more to come. So, come Monday - a new ball game will begin and this time the team and I will be going in to win the game! Oh yes by the way - the scars have healed amazingly. had 1 really rough day out which had me in tears, I found as long as me and my new best friend - my little u-shaped pillow go everywhere together - I am comfortable. Hope you are all coping with the lock-downs and life is throwing you giggles, chuckles and laughter. Lois xx
Deep Inspiration Breath Hold (DIBH) - Radiotherapy for left sided breast cancer
Deep Inspiration Breath Hold (DIBH) - Radiotherapy for left sided breast cancer https://www.youtube.com/watch?v=yEKFoHT-4DE The radiation oncologist and the intern took the time to look into, discuss and understand my medical history, then explained their treatment plan for me. I was given illustrated booklets and the link above to prepare myself. Every treatment for BC has frightening risks/side effects, but I am grateful to be fully informed and able to process the information gradually, rather than stressing about 'the unknown", which is far worse. Thumbs up for public health radiation oncology - so far.
New and wanting to say hi 🙋♀️
Hi 🙋♀️ I have trolled on here since being diagnosed triple positive in October 2020! I had a bilateral mastectomy and left axillary clearance in November in which they found a 2nd lesion! so I have invasive lobular and ductal 🤦🏼♀️ Anyway I started AC chemo last Friday fortnightly for 8 weeks then taxol for 12 weeks. 25 doses of radiation and herceptin 3 weekly for 12 months. Then all going well 10 years of endocrine treatment! I just wanted to say Thankyou I have found this network a wealth of information and feel so grateful 🥰 Of course I knew nothing when I first started and felt like a deer in the headlights so to speak. 🦌
Hiding in plain sight
Hi everyone, just a ‘newbie’ here. My name is Julie & I was diagnosed with ILC on the 11th Dec 2019 & so far it’s been full on, appointments....appointments & one more scan, biopsy after another. Truth was, I was at the end of a very long work year & getting ready for a month long holiday mode & then my world was turned around with the diagnosis of Invasive Lobular Carcinoma. I didn’t have time for that little gem to drop it’s bomb on me. I had Christmas planned, not to mention a very long awaited trip all organised..... But now I’ve entered into the world of Dr’s, scans, MRI’s, biopsies....biopsies & then even more scans & even more biopsies. Meanwhile I’m sitting here, in plain sight hiding from the world & nobody can see the raging mess my head has become. I’ve found myself going to bed so tired I can hardly keep my eyes open, and then lying down, totally wide awake, as the words rattle in my head........... You’ve got Breast Cancer. You’ve got Breast Cancer. You’ve got Breast Cancer. I’m having a dye injected into my right breast this afternoon, then a hook wire inserted first thing tomorrow, then surgery tomorrow sometime. I guess I’m lucky things are happening so fast. Family & friends have been great, it’s just difficult to be totally honest with them & voicing all my fears - I can’t frighten them any more than they already are, so I’m here, writing down my thoughts and trying to get my head clearer. Thanks for the platform to do so. It’s helped.
Welcome New Members - 14th September 2023
Welcome to our new members to join the Online Network recently: @Daria @M_Cooper @LouLou_67 @Mirium17au @Cheri @Lizzee_O @73Nard @Readybluedragon @emmajuliet @CAS_33 @roxywaffle @Somsaysam @CISFJ @bigfoot @rachel_bayleaf You have found your way to Breast Cancer Network Australia's (BCNA's) Online Network. This is a forum where you are not alone and can engage with generous members who provide meaningful support to each other. You can share as much or as little as you feel comfortable with other members. Please explore our various Groups for members who are looking for greater peer-to-peer support. The following links may also be helpful in getting you started: If you would like to introduce yourself please read How do I post a new Discussion? How do I send a private message? Navigating the online community Community Guidelines My Journey Online Tool Newly diagnosed? Listen to BCNA's Upfront About Breast Cancer Just Diagnosed - What's Next? and What I Wish I Knew podcasts Metastatic breast cancer diagnosis? Webcast: Just diagnosed with metastatic breast cancer, what’s next? When is your birthday? Head to this discussion thread if you would like to share your birthday (no need to include the year unless you want to). We love an online celebration and on the day you will receive a virtual birthday cake that we can all share! Our long-time members (newbies too!) are a wealth of information regarding the useful discussion topics and information available through BCNA's Online Network, therefore please do not hesitate to post your questions. You have the option to add details about yourself to your 'Profile' and if you would like more targeted responses, you may like to add where you live (e.g. Sydney; Melbourne; Regional Victoria). If you need help navigating the Online Network please message myself @Mez_BCNA or one of our other moderators: @Denise_BCNA , @Risha_BCNA , @Pat_BCNA, @Kate_BCNA , @Daina-BCNA Please note: the Online Network is not moderated by staff/volunteers on the weekends, however if you need something actioned, the quickest way to resolve your query is to contact the Helpline Team via email helpline@bcna.org.au or phone 1800 500 258 Monday to Friday 9:00am-5:00pm AEST.
Screaming inside
I need to vent. I want to scream, slam doors, hit something Two days ago my daughter visited & told me she has been diagnosed with advanced breast cancer. She was strong, composed, not emotional as she talked about it being treatable, not curable, talked about updating her will. I think I am still in shock. We have since spoken on the phone, particularly about how & when she will tell her two children. We are taking her tomorrow to her first chemo appointment & I need to remain calm, as that is what is necessary. When I told her in 2011 of my diagnosis of early breast cancer, we were calm & positive together, though she did blink away tears. I always felt throughout my journey that things are more difficult for the carer than the patient - now I am experiencing that role & I can't stop the tears. My dear husband is quiet as he always is, but I know he is shattered. Now that he has gone to bed I can let tears flow & write this. We are angry - why didn't she have regular mammograms after my diagnosis? Why did no-one pick it up earlier? I feel guilty - is it genetic - my mother, myself - even though both diagnosed later in life? Guilty too because I just want to hold her while we both sob – but that won’t help her. Fortunately she has a best friend, one who supported her through her marriage breakup; there are also other friends, but my help will be needed too & I must be strong when I feel like collapsing in a heap. Any advice, suggestions on how best to support her & the kids would be welcome.
Second time around
Hello.... I was diagnosed with DCIS Invasive grade 2 breast cancer in my left breast in Nov 2009 when I was 43yo after been sent for a mammogram because I had never had one before. I had a lumpectomy and a sentinel nobe biopsy. A dot of inconvenience was found in one of the lymph nodes which led to a second surgery and an ancillary clearance removing a further 24 lymph nodes. This surgery had an ‘all clear’ result but I needed 4 rounds of chemo as a precaution and then 6 weeks of radiation. I then took Tamoxifen for 5 years as the cancer was hormone receptor positive. I have continued with my annual mammograms and ultrasound, have needed a couple of fine needle biopsies but generally had a pretty good run the past 11 years. Until Nov 2020 😢 my routine checkup resulted in a vacuum assisted core biopsy of my right breast and the diagnosis DCIS. F@@k her we go again! Abnormal cells were located as they had calcified so could be seen on imaging! How lucky was I? If the cells didn’t die, would have been a whole lot different in 12 months time as My surgeon requested that I have a MRI to check for anything else. An area of 3-4cms was located which meant the surgical margins were increased to get a ‘clear result’. I am now going through the motions of deciding what to do next? Can opt to just do radiation again and then roll the dice a third time and see what the future brings? But I am 99.9% decided to have a bilateral mastectomy.. I took the genetic test for BRCA 1/2 mutation...results were negative, so it’s just me 😜 I also found out from my surgeon that once you have had radiation on your breast, you can’t have it again so if it was in my left beast, I would have had it take off anyway. With radiation alone, the risk of breast cancer coming back would be 20% versus just 1% after having a mastectomy.. In my head it’s a no brainer but I am really starting to grieve about my decision and they haven’t even gone yet! I have spoken to a private reconstructive plastic surgeon and I would be eligible for a ‘Tram Flap’ recon which seemed quite appealing in the start as I would be getting a tummy tuck too (had to be a silver lining there somewhere) but the length of the operation and the out of pocket cost was a lot more that I expected and I have decided not to weigh myself down with that for the moment. The breast cancer support centre ‘Choices’ advised me to just put my name down on the public waiting list, so I think that is what I will do and decide that in a couple of years... I just need to get my head around what I am going to look like on the other side of the mastectomy surgery? I know I am stronger to cope with this having been diagnosed for a second time. The first diagnosis definitely made me stronger and more resilient in my life. I am not backward in coming forward, never hesitate to eliminate things in my life that cause me grief. That’s why I don’t feel any loyalty to my breasts as they definitely are not my BFF’s. I have breast fed 3 beautiful kids (now all adults) so I really don’t need them anymore and the thought of never wearing bras around the house is starting to feel pretty good! I am currently a DD size so I am quiet envious of my daughter coming home and the first thing she does is take her bra off!! In all seriousness though....I just need to get my head around this choice as it’s not like going to the hairdresser and having a bad hair cut and saying ‘it will grow back’. Once they are gone, there is no coming back. But I just don’t want to roll the dice again 🤔 thanks for reading my story, any advise would be greatly appreciated ❤️ Christine x
