Lynkuet - where can I buy it?
Hi All - I am struggling with the night sweats and disturbed sleep and I was given a prescription today from my breast surgeon oncologist for the new version of Veoza called Lynkuet. I have tried calling around multiple pharmacies but no-one stocks it and its not available from their suppliers. Has anyone been able to get it in Australia? If yes, how much did it cost? I live in Melbourne. I have been using Veoza for almost a year and whilst it was brilliant at first, I have found it has pretty much stopped working - I have tried doing a "reset" for anything between 3 days to a week to get it to work again and the effectiveness has continued to diminish.11ViewsSign in to react to this post0Comments
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.189ViewsSign in to react to this post9Comments
Instagram 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 @breastcancerbanter129ViewsSign in to react to this post2Comments
Pneumonia & 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 xx73ViewsSign in to react to this post0Comments
Inconclusive 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 All314ViewsSign in to react to this post7CommentsReturning 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 :x263ViewsSign in to react to this post2Comments5 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 wait long for the results, 2 days later I was told there was nothing else identified on the MRI so we would proceed with the treatment plan which meant surgery 2 weeks later on 30Jan. I had the surgery on the Thursday, up to this point I hadn't really been too emotional or anxious. I was taking each day as it came and going by the 'it is what it is' principle so I wasn't overthinking it. My partner was also determined not to let me give into anxiety and worry, we are both of the British stiff upper lip type, we rarely get over-emotional and the approach worked well. Until I walked into the operating theatre, lay on the bed and burst into tears! It just all became very real and I started sobbing, they asked me to confirm the procedure they were going to be doing, which I did, then all I remember is the nurse holding my hand telling me they would take good care of me and me blubbing 'I know'. Then I woke up in recovery and started crying again, this time with relief. I was in the hospital overnight, I had very little pain - probably due to the pain killers, and I was discharged the next morning. I was given a prescription for some strong painkillers but I didn't need them, I was able to manage with just paracetamol. I was back at work on the Tuesday. I only told 2 of my closest colleagues about my diagnosis, one I sit opposite so I felt it only fair to explain why I might seem 'a little distracted' and was having so many medical appointments. The other is a friend. The only issues I had in the days following surgery was difficulty sleeping as I had to sleep on my back rather than my side/front which I prefer and some swelling which turned out to be a seroma that was drained when the dressing was removed. The special little pillow I was given by the BC nurse was helpful for sleeping a little more comfortably too. I had my post-op follow-up 10 days after surgery and got the news that they had removed a 9mm tumor with clear margins and the lymph nodes were also clear, so no further surgery required. The dressing and stitches were removed and the seroma drained. I was given a prescription for Tamoxifen then too, with instructions to start them sometime after the radiation therapy was finished. Then it was all quiet after that for a few weeks, I was left to heal and I was feeling pretty good, I still had numbness in my underarm area but the swelling was coming down and the bruising fading. 5 weeks after surgery I had my first appointment with the radiation oncologist who explained I would be having 15 fractions over 3 weeks. The planning CT was scheduled the following week, I had my little tattoos and treatment started 2 weeks after that. Call me weird, but I actually rather enjoyed the daily ritual of going to the hospital for my little 10 minute lie down. I might have felt differently if it hadn't been so convenient. I can get to the hospital from home in less than 40 minutes and it is only 10 minutes from where I work, so travelling wasn't an issue and I was able to have the sessions scheduled either before work or during my lunch break. I had very few side effects from the radiation, the only one of note being my nipple itched like crazy, I used the sorbalene I was given and the nurse gave me some silicone dressings that really helped, anti-histamine worked wonders when the itchiness was at its worst. My only other side-effect from treatment so far is a little bit of cording in my right arm which is being managed with massage and exercise through a lymphoedema physio. That brings me right up to the present. The only visible signs are a single scar about 6cm long in the crease of my right breast just below my underarm that is smoothing out and fading nicely, and some residual discolouration from the radiation that is also fading. Yesterday I went to the pharmacy to fill the tamoxifen prescription and took the first tablet this morning. My next appointment is in early August. I'll post more if/when side effects of the tamoxifen kick-in. This the phase of treatment I have been most worried about. I feel well and would rather just leave the whole thing behind me. But I know I can't do that. It was dumb luck that I went for that first mammogram when I did, that the BC was picked up when it was, and was able to be treated to simply. I feel very lucky to have come this far with so little disruption to my life, knowing it could easily have been so much worse. This was a very long post so thank you for persevering if you are still reading, and thank you to all that post, reply and like the posts on this forum. I've read so many stories that just reinforce the gratitude I feel for the support that is their for us all as we travel this journey.459ViewsSign in to react to this post4Comments
Immune 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 x191ViewsSign in to react to this post2CommentsRecovery with other chronic illness/disease
I'm through treatment (surgery and radiation) and the stress of making the huge decision not to take AI’s (pure mucinous carcinoma) and. Y onco team is fine with that. But I suspect like many, breast cancer is not my only life or health issue. Five weeks after radiotherapy I’m so fatigued I’m having trouble doing much. I also have diabetes, severe kidney disease and heart failure, the latter managed by a device that restricts my heart rate range. Not whinging as these are things I have under fairly close to optimal control. And it is what it is. But I don’t know how to get past this fatigue. I'm exercising in small doses, increasing strength training (also in small doses) but my zest for life has disappeared. Is this normal? I usually paint, and crochet and garden and cook and read and play my guitar. Not sure where to turn to or whether to just wait it out in hope. I’m either under or overdoing it. Ideas?192ViewsSign in to react to this post3CommentsNeuropathy
I would really like to connect with someone who has been on a similar journey. I was diagnosed with TNBC in April 2024 . Had chemotherapy, lumpectomy and 3 weeks of radiation. The Neuropathy began as I finished chemo and has not improved. I find it difficult to use my hands and to walk. I find it difficult to explain to friends and family that I cannot cut up vegetables or turn pages or pick up anything small. I feel quite isolated as I'm unable to drive any more or ride my bike which I relied on for exercise. The loss of of independence is just awful. Thank goodness for my precious husband who I now rely on. I am 73 and just need to know that I'm not alone in this terrible journey.277ViewsSign in to react to this post4Comments
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