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Survivorship struggles
Hi community, I'm not even too sure what I want to say or ask to be honest. It's just all feeling a bit heavy at the moment. I'm having a morning (yet another) where I've logged on to work from home but I'm struggling to focus and concentrate. (thanks Tamoxifen, lack of sleep, anxiety 🙄). Also, breast cancer awareness month is feeling like a bit much - especially following doing a fund raiser in the office yesterday. Plus last night I had a talk with my partner about what medical menopause is doing to my body and sex drive (he was supportive but a bit bewildered). Add to that over the last couple of weeks I've fallen off the wagon a bit with my diet and exercise, so that's affecting how I'm feeling. (Going back to gym this afternoon for weights and yoga - yay me). Anyway, I guess I'm feeling a bit overwhelmed with everything it means to be living in survivor-land. Don't get me wrong, I'm so grateful to be here and able to "find a new normal". It's just a lot. Some days it's really a lot. Thanks. Any words of wisdom or support? Maybe this will help someone else feeling the same way to feel less alone, too.123ViewsSign in to react to this post9CommentsTamoxifen and Blood Thinners
Hi there, Wondering is anyone else had situation like mine. I had lumpectomy, chemo and radiation 6 years ago for BC in left breast and since then I have been on Tamoxifen (full 6 years now out of recommended 10 years). Few months ago I had blood cloth (DVT) in my left leg (this all came after I took my teenager daughter to a concert and had to stand for over 5h), although I had problem with varicose veins after my pregnancies before the BC diagnosis and still have some aching veins on my legs. I was put on blood thinners and have been taking them for 4 months now (1 Eliquis tablet 5mg twice a day). I had a review with vascular specialist the other day and he advised I can stop blood thinners since I have been on them for 4 months and my cloth cleared a while ago anyway. After seeing vascular specialist I saw my oncologist few days later and they advised that if I continue being on Tamoxifen I need to take blood thinners as I have higher chance of blood clothing while on Tamoxifen and since I already had instance with blood clot I should take blood thinners for the next few years until I finish with Tamoxifen. I also had my usual monthly appointment with my chiropractor who advised that I shouldn't be on Eliquis blood thinner for longer than 6 months as I will have higher chance of aneurysm. I am getting really anxious about taking all this medication especially blood thinner (which by the way comes with lot of side effects like higher risk of bleeding, internal bleeding, liver problems if taken for prolonged periods of time., etc). Wondering did anyone else has been in similar situation and how did they go? Especially if you had to be on strong blood thinner like Eliquis (as it is not aspirin type of blood thinner). I feel like taking Eliquis would give me another issues but at the same I am scared of not taking it given I had a blood clot (pretty long one in one of the varicose veins in my lover leg which was connected to deep vein). Thanks NinicaViewsSign in to react to this postCommentsSecond TC with cold cap - should I chop my hair shorter?
Hello - This is my first time posting and wondering if people had more success with cold capping with shorter hair? My hair is only shoulder length but there's been quite a lot of pain over the last 5 days and I've lost a lot of hair. Second (of 4) TC tomorrow. Thanks so much for sharing your experience and advice if you are able to.ViewsSign in to react to this postCommentBeing flat chested :(
I have had my prothesis in ,firstly my right breast for 25 years, and then my left breast for 20 years . I so want to take them out. They have been in there a long time. And have helped me feel like I still have my breasts. But I want to remove them forever.I feel that having the prothesis in for such a long time is not healthy..... But I don't want to be flat chested. I know I should be proud to be a woman without breast. I know breasts do not determine who I am. I have watched shows about being flat chested. I really don't think I can do it. I love feeling like a woman and looking like a woman. Yes, I can get bra implants etc. Fake breasts. But I just can't be forever flat.....It's so confusing my head. Is there anyone else out there who feels the same ?ViewsSign in to react to this postCommentsInstagram Fam?!
Hi all :) I was just wondering if anyone else is sharing their Breast Cancer journey over on Instagram? I set up a page recently as I want to spread awareness about the realities of treatment & survivorship. I didn't quite have it in me as I went through the first part of my treatment (2 x surgeries, chemo & rads) to share as I went, but now i'm in the next phase (Ribociclib for 3 years + Zoladronic Acid 6 monthly + a bunch of other meds from side effects) I am starting to share more & recount my experiences. It's been lovely to connect with others as well. If anyone would like to follow you can find me at @breastcancerbanterViewsSign in to react to this postCommentsPatients Assistance Travel Schemes - rebates & rules as at July 2025
We have a private BCNA group for those living in Rural, Regional and Remote areas of Australia - join up if you have to travel distances to your treatment. Group: Connecting rural, regional & remote areas | BCNA Online Network If you live in a rural/regional or remote town and have to travel to access your specialists, surgery & treatment, then you are also eligible to receive rebates on both fuel and accommodation costs! If you (or someone you know) is aged between 15 & 29, there is additional assistance - you can read about it here: Accommodation thru You Can Stay if aged 15-29 for rural/regional/remote cancer patients | BCNA Online Network One of the biggest cost (and time) factors for rural & remote patients - is the travel from home to the hospital or Dr/Services that you require as the ongoing part of your treatment and also accommodation costs. Many of us don't find out about the Patients Assistance Travel Schemes until we are well into our treatment schedules & some may have missed the opportunity to claim at all, as most have a time frame whereby submissions need to be done - or you miss out. I have found a site called National Rural Health Alliance .... it might be worth keeping an eye on it, as a source of information - for all states. https://www.ruralhealth.org.au/publication/fact-sheet/patient-assisted-travel-schemes-guide/ They currently have a PDF of ALL the State's Patient Travel Assistance Schemes in the one document ..... Make sure you save it to your files! Most states now have a 'total' Km total per week available, not just the 'one way' Km. So if you are doing radiation Mon-Fri - you 'may' qualify under the 'weekly km' figure. NSW is 200k/week, but Vic is a huge 500k/week! 🤨 SOME states have special consideration for Oncology and Kidney dialysis patients .... it may be worth enquiring about that! Here is a basic guide to all states - This is the July 2025 'guide' - the Websites and Phone numbers should also help & I'll update the info if/when they put up the latest document. Click the link below and then 'click on' View PDF ... and download it to your computer ... even print off YOUR state's info!! https://www.ruralhealth.org.au/publication/fact-sheet/patient-assisted-travel-schemes-guide/ ACT: https://www.canberrahealthservices.act.gov.au/__data/assets/pdf_file/0007/1985479/ACT-Interstate-Patient-Travel-Assistance-Scheme-Assessment-Guidelines.pdf NSW: https://www.iptaas.health.nsw.gov.au/home NT: https://nt.gov.au/wellbeing/health-subsidies-support-and-home-visits/patient-assistance-travel-scheme QLD: https://www.qld.gov.au/health/services/travel/subsidies SA: https://www.sahealth.sa.gov.au/wps/wcm/connect/Public%20Content/SA%20Health%20Internet/Services/Regional%20Health%20Services/Patient%20Assistance%20…ViewsSign in to react to this postCommentschoices
just asking if anyone decided against taking estrogen blockers long term? I’m taking Letrozole at the moment until surgery. But I have decided that afterwards I will probably stop. I know it’s a personal decision for each one of us but I’d like to hear from others who decided against taking the estrogen blockers. 🌿ViewsSign in to react to this postCommentsPneumonia & how it can affect those who are immuno-suppressed.
With the sad and unexpected passing of Sam Neill this week, from Pneumonia - the reality is that Pneumonia is still a very dangerous infection to succumb to, specially if your immunity has been compromised, possibly from chemo and/or immunotherapy. It is still a dangerous infection ANYWAY, as we age! Yes, they can treat Pneumonia with Penicillin/Antibiotics .... but it only treats Bacterial Pneumonia - not Viral Pneumonia. The outpouring of grief for Sam Neill's passing is huge, after being declared Cancer Free just 3 months ago! I think many of us have almost 'grown up' with him being in the movies (if you are around my age - 73) & more recently, online so often during Covid, singing songs & generally being funny, just to give everyone a lift. He was that kind of man. He was a kind man. My brother was a personal friend of his for 50+ years, having met him in London, before he became famous. Please, Make sure you are up to date with the Pneumonia & RSV Vaccines! AND - if you DO come down with a cold/flu and the symptoms get worse with chest pains & difficutly breathing ... see your GP or if you are really in distress, just call for an ambulance. https://lungfoundation.com.au/lung-diseases/respiratory-infections/pneumonia/ https://www.healthywa.wa.gov.au/Articles/N_R/Pneumonia Pneumonia is the 4th most common cause of death GLOBALLY .... The top 5 causes of death worldwide, according to the World Health Organization, are: Ischaemic Heart Disease: The leading cause of death globally, responsible for approximately 16% of total world deaths. 2. Stroke: A major cerebrovascular condition that ranks as the second biggest killer worldwide. 3. Chronic Obstructive Pulmonary Disease (COPD): A progressive respiratory disease that accounts for millions of global mortalities. 4. Lower Respiratory Infections: The world's most deadly communicable disease group, primarily affecting the lungs. 5. Alzheimer's Disease and other dementias: The fifth leading cause, heavily impacting the aging global population. More info from the Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/pneumonia/diagnosis-treatment/drc-20354210 The different types of Pneumonia that can develop from a Flu, RSV or other conditions - are described here: https://hudson.org.au/disease/inflammation/pneumonia/ Know what to look for - Take care, stay well xxViewsSign in to react to this postCommentsAn easy explanation to understand CT vs MRI
My memory is never the best - and I often have difficulty remembering the difference between a CT and an MRI! Personally, I reckon EVERYONE diagnosed with ANY Cancer, should receive a full-body CT scan at the time of diagnosis, as a 'time capsule' of that moment ... so that further along, if recurrences/Mets occur - they have something to compare the NEXT CT scan with - to see if they 'missed' something in the first one! Have you had a full-body CT scan? I've only had specific areas scanned when I've been concerned about aches & pains since my diagnosis in 2018. CT scans use X-rays to create fast, 3D images of bones and organs, while MRIs use magnetic fields for detailed images of soft tissues, taking longer to scan. Here's a quick & easy comparison! And she explains it well in this 'Reel' too - check out her other Reels and 'Pics' of many things relating to BC!! https://www.facebook.com/reel/26962219740085934ViewsSign in to react to this postCommentsInconclusive Follow up Mammogram
Hi there everyone, I wanted to see if anyone out there has had a similar experience to me at their follow up scans. I was diagnosed with early-stage breast cancer about 2 years ago, had a lumpectomy and radiation treatment. I've been having mammograms every 12 months and up until the last scan it's been "nothing to see here". At my last mammogram, the radiologist said that they noticed some changes around the site of my scar as compared to the previous scan which could be calcification or something else but that they were not worried enough to do a biopsy so come back in 6 months. I have to say this was not as reassuring as my previous scans where I could walk away and not have to worry/think about things too much. I do feel like I am a bit in limbo and the fear of recurrence which I normally manage quite well is somewhat heightened. Just wondered if anyone else has had a similar experience with their scans (ie not conclusive but advised to sit tight for now)? Thanks AllViewsSign in to react to this postCommentsPartner Issues
Hi there everyone. I’m really struggling at the moment. I was diagnosed with Stage 3 IDC and had to have a unilateral mastectomy, chemo and radiation . Unfortunately my partner of 7 years was unable to cope with the physical changes and never wanted to see me naked after the operation. He wasn’t very sensitive about saying “no” to my offer either. He recently cheated and we broke up. I feel very alone but determined not to date again until I’m ready - if ever. Has anyone else experienced similar ? I think I am on grief and feeling very disillusioned.ViewsSign in to react to this postCommentsVeoza for hot flushes
Hi, my GP gave me a call last week suggesting this new medication Veoza for my hot flushes. It was only approved by the TGA in February this year. It’s apparently safe for hormone positive breast cancer patients. Given we can’t take hormone replacement therapy it sounds like an interesting option. After 4 years of suffering hot flushes & night sweats I think I’m prepared to give it a try. Has anyone else had any experience with this very new drug yet?ViewsSign in to react to this postCommentsTriple negative recurrence
Hi I was diagnosed with Triple Neg last March 2024 and finished chemo and radiation end Sept. I got through it all fine-not too many side effects bar the usual and I was exercising, eating well, and feeling positive about it not returning but then in November I felt a lump but wasn't too concerned I thought is was just fibrous tissue post radiation but it has returned and not only that I now have a small oestrogen postive one in the other breast. In a week and a half i have gone from ultrasound, PET scan biopsy and starting chemo last week and had 2nd one today. As well as immunotherapy and a double masectomy when chemo has finished. I'm just finding it quite hard to cope with this time (even though) the PET scan shows it hasn't spread anywhere. I was so strong last time but this time I feel like the rug has been pulled out from under me and I'm finding it hard to stay positive. I sat and just had tears running down my face for a lot of the chemo today. I didn't really feel the need to use BCNA much last time but this time I think I need some extra support. Thanks for listening, just nice to know there are people out there who can empathise with how I'm feeling. Take care.ViewsSign in to react to this postCommentsReturning to work and finding the new normal
Hi all, I was diagnosed with stage 2 IDC, ER and PR positive in January last year (2025). I had 2 lumpectomies followed by a mastectomy, then chemo and radiation. Radiation finished in October and now I'm on Tamoxifen. I've been off work since right before my mastectomy (thanks income protection insurance!), and I'm planning to return to work in a month's time. By that time I will have been away from work for just about 12 months. I'll be doing a phased return to work, I work for a large organisation and my employer is very supportive. I'm really nervous about returning to work. My job is pretty mentally demanding and can be stressful with pressure and tight deadlines. I'm really worried that my brain fog won't allow me to do my job effectively. I know I'm not going to be able to multitask at all. I don't feel like the same person I was a year ago and I'm concerned I won't be able to cope, that I'll embarrass myself and damage my reputation. Has anyone else had a similar experience with a positive outcome to give me some hope? Or any advice about managing brain fog and a demanding job? TIA Bec :xViewsSign in to react to this postComments5 months since diagnosis
Hi, I have posted a bit of my story here but thought I'd post a more complete summary here for posterity. I turned 50 in Jan24 and moved from Melbourne to Adelaide in Mar24. Shortly after arriving I got a letter from BreastscreenSA offering free screening and basically ignored it, Then I started a new job in Aug24 and there are BreastscreenSA flyers on the doors in the ladies' loo and those faces kept looking at me everyday so in Nov24 I buckled and book in for a screen in my lunchbreak. I was in and out in 10 minutes, it was a little uncomfortable but not painful. I thought nothing more of it until I got a call 3 weeks later saying after reviewing the images a spot had been noted and I should come in for enhanced imaging, ultra-sound and based on the outcome of those, possibly a biopsy. The appointment was booked in for 2 weeks later. I didn't tell anyone, partner included, and tried not to think about it. I was in the 'its probably nothing' phase. At the appointment I was shown the original mammogram images pointing out the bright spot in my right breast they thought looked suspect. It was small, quite high up and at the back away from the nipple. I had the 3D mammogram and based on that they went ahead with an ultra-sound. They showed me the same spot on the ultra-sound and recommended a biopsy. I went ahead. I had no choice at that point to tell my other half as I came out with a wedge shaped bruise and dressing on my boob I was not going to be able to explain away. I should also say that being a normally healthy person I hadn't bothered registering with a GP since relocating so I had to call around and settle for the only place that was accepting new patients and could do an appointment the next day. 4 days after the biopsy and 9 days before christmas, I went back to the BreastScreenSA assessment centre for my results. It wasn't good news, I had a ~6mm, Grade 2 IDC ER/PR + HER2 -, and very dense breast tissue. The nurse called the GP on my behalf to make an appointment for the next day for a referral for surgery. I was referred to the RAH and had my first appointment with the surgeon and met with the Breast Care nurse just under 2 weeks later, this was 30Dec. The surgeon talked me though the treatment plan. It was to be a lumpectomy with a sentinel node biopsy followed by a course of radiation therapy rounded out with 5 years on Tamoxifen. No chemo required. I'm sure I should have asked more questions about the treatment plan, but to be honest I was so relieved I wouldn't need chemo and he wasn't suggesting a mastectomy I just accepted what he was telling me. I had another ultrasound and they placed a carbon track for the surgeon to follow. I was also booked in for an MRI due to the density of my breast tissue to check for anything the mammogram and ultrasound may have missed. That happened 2 weeks later and thankfully I didn't have to wa…ViewsSign in to react to this postCommentsPersonal Injury Claim
Im &@#$@. I've had mismanagement of smx Still suffering. Had to discharge myself, due to safety. Been knocked back by 3 Lawyers. I'm gona fight this. Miscommunication, Breach of Duty of Care, Misconduct, incorrect medication, given meds with known side effects, denied my approved TGA CBD oil, discharged with cannula still in arm, the list goes on. I'm against. My family is horrified. I've sacked my surgeon.ViewsSign in to react to this postCommentsRaelene Boyle on Julia Zemiro's Home Delivery today (repeat)
Raelene Boyle has been a huge advocate for Breast cancer since her own diagnosis with BC nearly 30 years ago - what a GREAT spirit she has! Oh My Gosh ... I can relate to SO many things that she discusses with Julia Zemiro! LOL Raelene was diagnosed at the same time that the founder of BCNA, Lyn Swinburne was first starting her support for women with breast cancer (out of a Bakers Delight office!) just under 30 years ago. She was then diagnosed with Ovarian Cancer, twice, then Epilepsy! She is still going strong & is an Ambassador and founding board member of BCNA: https://www.bcna.org.au/resource-hub/podcasts/upfront-about-breast-cancer/upfront-about-breast-cancer/episode-21-raelene-boyle-on-pulling-herself-out-of-the-darkness/ You can watch her interview with Julia Zemiro on ABC here: https://iview.abc.net.au/show/julia-zemiro-s-home-delivery/series/6/video/LE1761H006S00ViewsSign in to react to this postCommentWork/grief/sadness
Hi all, apologies if this has already been discussed but I couldn’t find anything elsewhere. I’m 46, had a right mastectomy (Diep flap) and left reduction in early December for stage 2 invasive lobular carcinoma. My recovery went really well, no pain whatsoever. I still have another procedure to alter the flap and then have nipple tattooing but have to wait until later in the year. Started on Tamoxifen in Jan. I went back to work at the start of March and since then have felt the wheels come off a bit. I went back on reduced hours but in a different role to what I usually do (but just as busy!) 3 weeks in I was feeling overwhelmed and crying at the drop of a hat. This role was only to cover someone else and when I asked for more time on reduced hours/duties I was given yet another new role which is totally unfamiliar to me. Consequently I ended up leaving work early this morning as I was in tears. I think because my recovery went so well I hadn’t properly processed everything that had happened before (diagnosis to surgery was pretty quick). And work seems to have triggered a huge reaction that I didn’t expect. It feels like the reality of all this has hit all at once and I’m on a huge emotional rollercoaster. I am seeing a counsellor and she’s been amazing. Plus I’ve started acupuncture. I’m so used to be busy and I used to love it but at the moment, I just don’t have the capacity for it. Has anyone else had a similar experience?ViewsSign in to react to this postCommentsImmune system lowered
Hi Everyone, My oncologist transferred me to Aromasin mid April. I had been on Tamoxifin then Letrozole (which did not agree with me at all) previously. Since changing to Aromasin my immune system seems to be very low. In the last 4 weeks I have had a chest infection, a cold, laryngitis and finally tested positive for Covid last Sunday. I'm normally very healthy and maybe catch a small sniffle once a year. Has anyone else found themselves in the same situation and how have you dealt with it? I'm not dealing with it very well. I only need to look at someone and I seem to get sick. Thanks xViewsSign in to react to this postCommentsLymphoedema compression bra cost
After months of trying to use a sports bra with a lymph flow pressure pad my lymphoedema physio has just recommended I move to proper lymphoedema compression bras and am gobsmacked at the cost. I rang the State Wide Equipment Program who fund lymphoedema compression garments in Victoria who advise bras are not covered under this program. Does anyone have any other suggestions for how to get these at a subsidised cost? I don’t have $700 laying around to get 2 bras and a night time compression band.ViewsSign in to react to this postComments
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