Friday update 24 September 2021
Friday update 24 September 2021 Hello members, Well, we have had an interesting week here in Victoria with an earthquake that was felt across the State and by some of our neighbours in New South Wales, Canberra, Adelaide and Launceston – Did you feel it? It is also a public holiday here today in Victoria therefore the BCNA office is closed, however there is still time for a Friday update. For those of you who follow the AFL and/or one of the grand final teams, I hope you enjoy the game on the weekend. Community highlights New groups PALB2 gene support– This is a private group for individuals and family members affected by the PALB2 gene to come together for support and help spread the word about this gene mutation. The very brave Kerr Family spoke up about this largely unknown gene that has greatly affected their family and the main reason behind the Online Network's new PALB2 group. CLICK HERE to access the article. Popular forum discussions Members new and old may have missed some of the forum discussions that have received the most comments: 1. More cancer 2. New fees for radiation therapy as of 1-7-21 3. How did you find out about BCNA 4. Friday Funnies These funny posts are welcome any day really – bringing something light hearted to the forum credit @arpie Community News BCNA NEWS 16 Sept 2021 - Removal of Herceptin from PBS From October 2021, there will be some changes to Herceptin, one of the drug therapies that is available for people with HER-2 positive breast cancer – Access the full article via link below: https://www.bcna.org.au/news/2021/09/removal-of-herceptin-from-pbs/ BCNA NEWS 23 Sept 2021 – Breast Reconstruction Report The Breast Reconstruction in Australia 2021 report details the findings from BCNA’s survey, which received 3,350 responses from women across every state and territory, from metropolitan, regional and rural areas, and from ages 18 to over 80 - Access the full report via link below: Breast Reconstruction in Australia 2021 report | Breast Cancer Network Australia (bcna.org.au) The Pink Bra Project (Launching 26th September) The Pink Bra Project is an initiative created by Berlei and Breast Cancer Network Australia to support those close to our heart who have been affected by breast cancer. Berlei have created a special pink bra collection where $10 from the sale of each bra will be donated to BCNA in support of those affected by breast cancer. The collection includes a post-surgery bra, two t-shirt bras and a wirefree bra, and will be available to purchase online and instore from 26th September – Check full details of project via below link https://www.bcna.org.au/news-events/the-pink-bra-project/ Webcasts and conferences you have have missed Managing the cost of beast cancer: tips and resources There were 1,157 registrations and it was very interactive and informative one hour session. A few frequently asked/mentioned topics from the night were: · Access to long service, annual and sick leave · Out of pocket costs · Accessing death insurance before you pass · TPD insurance · Help available for self-employed/small business owners · Accessing superannuation early · Added costs for rural and regional members to access metro health care systems · Employment issues If you missed the webcast, you can still register via the link above and watch on demand. Upfront About Breast Cancer Podcast If you haven’t already, subscribe to BCNA's Fortnightly Podcasts . Podcast 35 coming up in the last week of September will be in relation to ‘Young Women & Sexuality’. We will also provide details very soon of an upcoming mini-series with clinical psychologist Dr. Charlotte Tottman. Books / Movies/ TV Series/ Documentaries Recently I re-watched Netflix documentary ‘Minimalism: a documentary about the important things’. You may have also heard of the producer’s podcast ‘The Minimalists’. Good reminder that we don’t have to accumulate ‘things’ for fulfilment. What have you read or watched lately? That’s it from me for another Friday update and I hope you enjoy the read as you head into the weekend. In the meantime, if you have any concerns while online, please contact one of the moderators - @Jenny_BCNA @Carissa_BCNA @Anna_BCNA @Pat_BCNA @MichelleP_BCNA @Mez_BCNA If you need to speak with someone regarding your concern, please call 1800 500 258 alternatively, you can email contact@bcna.org.au (We will be back on deck Monday). Take care, The mod team – Mez, Carissa, Jenny, Anna, Pat & Michelle ‘I can be changed by what happens to me. But I refuse to be reduced by it.’ – Maya Angelou
Here I go again!
Hi there. Newbie to this online group. I had my first diagnosis in 2006 at 46. A grade 3 ductal cancer for which I had a lumpectomy, radiation and hormone blockers. I had Tamoxifen until developed uterine polyps (3yrs) and then switched to Arimidex (another 5 yrs). My maternal aunt had BC first in her mid 30’s and then late 50’s before she died of mets in her mid 60’s. I’d had annual mammograms since 40 because of my family history but have no genetic markers. All going well until my last mammogram which showed another BC in the same breast. This time a lobular cancer. Luckily very small and no spread but still devastating. I’ve had another lumpectomy- because I would not speak the M word! I’m now recovering from that and have started hormone blockers - again. I can’t have radiation again in the same side - which I’m thankful for - and I don’t need chemo - again very grateful. However I feel my surgeon would prefer me to have had a mastectomy ( that word I will not speak of!). I see home again in a few months and I’m thinking this is what he will recommend to keep me safe. At least I’ve had time to get my head around this and find out more about it - I just didn’t feel I could make that decision in the days between my biopsy results and surgery. Anyway I’ve been reading lots of posts here and finding out more each day. I have a bit more knowledge under my belt from my previous experience and in some ways that makes it worse! I worry about the impact of hormone blockers on my long term health and my ability to keep fit and keep the weight under control. And I’m concerned about a reconstruction and how long the recovery will be. One of the worst things about the past few weeks is that we had to cancel a much anticipated overseas trip. We haven’t travelled since 2019 so we are keen to get back travelling but not to be! I keep saying to our kids I’m not sure how many good travel years we have left and there’s so much still to see! ��🤣
Today's feelings in poetry
Lucky So lucky, people say. That they caught it when they did That it hasn’t spread That they got it all That I have insurance So, so lucky. That my friend told me about her cancer That I finally moved my arse and Went and had that mammogram That I live in the lucky country So lucky That my prognosis is good That my job will be there for me That I am surrounded by family and friends With their love, soup and casseroles. Lucky. That my new set are perkier Smaller, Scar-rier, numb-ier. A bit lopsided Like me. Some days though, I just feel A tiny bit Unlucky.
Surgery choice
I have just been diagnosed with Stage 2 Breast Cancer. My surgeon's recommendation is a lumpectomy and radiation, but she will support me in whatever surgery choice I make. In my Mum's immediate family, her Mother (my Nana), two brothers and her sister (breast- then bone) have all had cancer. Three of them developed secondary cancers and passed away within two years. I want to reduce the chance of mine cancer coming back so have decided on a double mastectomy and reconstruction. I would be interested in any feed back. Has anyone else made this choice and if so, are they happy or disappointed with their decision? I am finding that just making this decision is more stressful that having the actual diagnosis
DCIS
Hi everyone, I am new to this forum - and any forum really - I have a horror of any sort of social media. But I am struggling so badly emotionally right now. I have been diagnosed with extensive DCIS in my left breast - 60mm high grade (grade 3) with comodo necrosis - confirmed via lumpectomy surgery. Another 5mm high grade DCIS found under the left nipple in a separate nipple delay surgery. They have also found focal LCIS as part of the lumpectomy pathology. I still do not have clear margins. DCIS has been classified as ER/PR- and HER2+. Family history - my mother was diagnosed with breast cancer at age 44 and died at age 47. Youngest sister diagnosed at age 42 (triple positive type) and underwent double mastectomy and chemo. She is still thankfully NED 8-9 years later. I have one sister left who has no diagnosis (as yet). My mother and all three of us daughters have been noted to have dense breast tissue. I am 53 years old however given the extensive size of this lesion and looking back at some of the mammograms which did show mild calcifications several years ago- I expect this has been growing since my late 40's (if not earlier). The mammogram only showed a 15mm area calcifications, so the bulk of this DCIS lesion did not ever show on imaging. My sister underwent genetic testing at the time of her diagnosis which did not show any known genetic mutation. However, geneticist does believe there is likely some genetic link due to the very young age of both my mother and my sister at diagnosis. I will be having genetic testing at some stage as my sister's testing was 8-9 years ago now. Breast surgeon has now recommended mastectomy of the left breast including removal of the left nipple due to involvement in the DCIS lesion. He has said that I could reasonably argue "both ways" with regards to my right breast (i.e. there is an argument to take both breasts given family history etc. However, could also make an argument to keep the right breast and monitor. So it's my decision. I have (at this stage) decided to have a double mastectomy with Diep Flap reconstruction. The surgery is scheduled for 10th July. Part of my decision to go bilateral is because the diep flap is a "one chance only" surgery. I also have already had some biopsies on the right breast (benign to date) but am aware LCIS is generally bilateral and may indicate a higher ongoing risk to the right side. It's also a very big surgery and I do not want to have to ever face this again if possible. I am so so terrified of the surgery. Here's the main thing - I am absolutely shattered about losing my breasts. It seems such a radical surgery for a non-life threatening diagnosis. I am in so much mental and emotional pain and I have been having a LOT of suicidal ideation (although I don't think I would act on it - I just literally don't want to wake up most days). I can't bear the thought of having no feeling in my chest. I am so worried about possible ongoing permanent nerve pain and post mastectomy pain syndrome and "iron bra" syndrome. My breasts are the ONLY part of my body that I actually like. I already know that I will have massive body image issues and loss of confidence after this. I am incredibly depressed. I am seeing a psychologist (Dr Charlotte Tottman actually - she's so wonderful). I am trying very hard to deal with all this. I feel like I will be so judged that is my key pain when so many others would do anything to change places with me and my diagnosis. I am so very aware of that and it's very hard to be honest about this because I feel like I should be focussing on the health part and not my physical loss. It's not that I'm not very grateful that this was found so early and I should be able to avoid all the awful treatments (radiation/chemo etc) and even more so, that my life is not at risk like so many others. I just can't believe I still have to lose my breasts and nipples with this very early diagnosis. I can't believe it. I'm also really struggling with some health professionals (including my breast surgeon and plastic surgeon) calling DCIS "pre cancer" or saying it's not "real" cancer. I just can't bear it. I can deal with calling this bloody thing Stage 0 breast cancer or pre-invasive cancer. But to hear health professionals say DCIS is not even cancer when I have to suffer such a radical lifechanging permanent surgery - it feels like such a slap in the face. It also makes it SO much harder to accept this recommended surgical treatment. If it's not 'real' cancer, I'll keep my breasts thanks very much. Why do they do this? I cannot understand it - if it's to keep us "calm" - I can deal without being patronised?? So sorry for the long post. I don't know what to do with myself.
Going public - will I have any choices
Hi all - I received a call last week telling me that my biopsies show cancer in one of my breasts. It's not a total surprise as there is a very strong family history of it - I always felt like a ticking time bomb. Regardless, I feel like a bit of a zombie at the moment, the situation is consuming me. The shock of it and not knowing what is ahead is awful. I have an appointment with a surgeon at a public hospital tomorrow. I suspect they will recommend lumpectomy with radiation, but I would prefer to just have a bilateral mastectomy and be done with it. I watched my mum go through 5 years of anxiety wondering if it was coming back. Ideally I would have the immediate reconstruction, but I presume that wouldn't happen in the public system. Has anyone gone through the public system and been given choices as to the treatment they have, or do you have to go private to make these choices? How can I find out what it would cost if I was to fund it all ourselves? Just wondering if we can find the money, how much would we need?
Advise please - tidy up of dog ears etc
Well out of the blue I received a phone call tonight 6:30 that " would I like to come in on Monday 7.00am to Peter Mac to have a 'tidy up' ie dog ears, lipo on reconstructed boob and a nipple". Now this has been in the back of my mind, and I had 2019 behind me as I was constantly worried about further cancer. So 2020 was a year that I did not want to think about it. Now do I do it - or then have to wait another how many years to get it done if needed. Have you had it done, was it OK, and do I need a nipple? Just some of your thoughts would be appreciated. Thanks Julie.
