Newbie…long story
Hi everyone, Newbie here. Never dreamt I would be joining this club, but who does ?! This forum and website have been so helpful to me over the past month. My journey started last June when I decided to speak with my GP about a tender spot right on the inside edge of my left breast. She reassured me that tenderness isn’t typically a symptom of breast cancer, but we would check it out. Got an ultrasound and mammogram. US identified a small mass, mammo some calcifications. Got an us biopsy around October, all clear. Then around Christmas I noticed some brown nipple discharge (took a while to accept it was coming from the nipple, thought I had spilt something…. Every few days in the same spot!!!). Back to the GP, another ultrasound. The report said there was “debris” in the duct, couldn’t exclude papilloma, MRI would confirm, surgical consult recommended. So off for the consult, after which I was told the discharge was due to trauma to the breast from the biopsy (they didn’t send me for the MRI). This was purely based on discussion and very brief examination. In hindsight and knowing what I do now, I would have pushed back and demanded the MRI regardless. Relief! But my GP wasn’t convinced. She sent me for an MRI then a consult with a specialist breast surgeon who, after looking at the MRI, immediately sent me for some MRI and stereotactic biopsies…2 in my left and one in the right. That was a bit of a marathon! I was convinced it was all a waste of time and money! I turned up to the surgeon for results unconcerned…obviously rather naive! “You’ve got a lot going on in your breasts!” were her first words. LCIS and papilloma in my right breast, DCIS and invasive Mucinous carcinoma in my left. I was speechless. Shocked. Bewildered. Confused. We briefly discussed next steps, but I couldn’t get out of there fast enough! I called my husband in tears. We went back together to the surgeon the following Monday, after doing a bit of research, lots of reading, and chatting with a wonderful McGrath Breast Care Nurse. After asking more questions, I decided on a left mastectomy and right lumpectomy. Plus sentinel node biopsy on the left. But I was so angry. How could the first surgeon send me away without really being sure??!! I went through all the feelings, disbelief, anger, sadness, grief, a bit more anger, and finally acceptance (mostly anyway!!). I realise I have to let go of the anger, and am taking it on as a learning - it’s important to advocate for our own health and not accept something too easily if it doesn’t seem right. Hubby and I had a two week holiday booked up north the following week, which the surgeon said was fine, so we booked surgery for August 13, ten days after we would get home. The holiday was great, we hadn’t told anyone at that point (except my mum and work). We were able to not think about it and had some really special time together. It was good to have the space and time to process what was happening. so now I’m one week post surgery, contemplating the future, keen to get back to everything I used to do. I had been training for a half marathon in September, which of course now won’t be happening. We are hiking the Overland Track in February, so that’s what I’m aiming for. I’m so very lucky to have an amazing, competent, supportive partner. He has taken the same time off work as me to support my recovery. He even washed my hair for me yesterday :-) Recovery is going pretty well, although I’m often still uncomfortable in bed. Getting the drain tube out a couple of days ago was wonderful! We go back to the surgeon next week (two weeks after surgery) for dressings etc and results. Fingers and toes are all crossed! Thanks for getting this far, there’s something a little cathartic in writing this down. I’ve really appreciated reading others stories, it helps with knowing we are not alone and the feelings are valid. Thank you :-) Belinda xx
Early HER2+
I understand what Early is and I am grateful that I found something at the same time as my breastscreen mammogram and it is not in lymph glands, PET was also clear but they need a new name for Early. My treatment is starting 9/10 and will be Chemo (abraxane) & hercepton then surgery and radiation. I thought I had choice after doing a lot of research on trusted websites, listening to great podcasts and asking questions of my MDT but although they say I do they highly recommend the above plan. I am resolved to losing my hair and looking forward to the freedom no hair should bring me, I am self employed so can regulate my hours, I am active and look forward to keeping that going, as I know how good it makes me feel and again research shows, it helps us through chemo and everything else. What I struggle with is seeing others reactions to the news and seeing my husband frustrated by the time it takes to have tests and get things started. I would delay treatment even longer if I could but know that is not a good decision as the HER2+ is a grade 3. With a name like Early people seem to think 🤔 I will have an easy run, and I certainly hope I do but have read enough to know that I may not. People also say oh that’s good it’s not urgent then and not that bad. For someone who limits toxins as much as one can this is testing my self control to the limits and then having people say and think 🤔 it is going to be an easy road does not sit well with me. I am babbling and that is certainly something that has happened since diagnosis. I spent 24 hours in denial and 24 hours in why and have decided to tell only positive supportive people going forward and focus on things I can control and leave the rest to my team. thankyou for letting me rant and thankyou for all your encouraging posts and links which I have loved. Let’s kick this tumours out of here x
Hormone Replacement Therapy?
Hi all — I’ve been reading a recent research- esp. from the US, including the book Estrogen Matters, which questions the idea that women with breast cancer should automatically avoid Hormone Replacement Therapy (HRT), and how it can help with longevity etc. I’m planning to speak with my doctor about it, but I’m curious — has anyone here looked into this or discussed HRT after breast cancer with their team? Would love to hear your experiences or any studies/resources you found helpful.
Triple Positive HER2+
Hi everyone BCNA Online Network established a Group with Triple Positive breast cancer which is useful also for people who might be HER2+ but not positive for oestrogen or progesterone. This post is also to alert previously accepted Triple Positive Group members: you might not have been automatically transferred across to the Triple Positive Group with the recent upgrade to the new BCNA Network site. Please do request to rejoin the Group (I did)! Ned01CheriSukiCheriAnna15FeRnurserachMareealsoTriplebreast240Number2CaitySXC1947Herceptin treatment post-chemo
Hi there! I finished chemo for her2+ breast cancer 3 weeks ago and have just had a double mastectomy. I’m supposed to continue with herceptin every three weeks for a year. I’ve heard differing reports about whether this is an infusion or an injection. Does anyone have any experience of how this is given in Australia? Also, who can give this treatment? Is it only given at hospitals, or if it’s an injection can it be given by a GP or oncologist? My treatment up until now has been in France and I’m considering moving back to Australia during this year, but with doses every three weeks it’s a short turnaround for getting into the Australian medical system, so just trying to understand more about how this stage of treatment works. Thanks!What to ask the surgeon post surgery?
Last week, I was diagnosed with stage 1 last week, ER+PR positive, HER 2 negative. Right side, very deep tho. A week later (!) I already did a lumpectomy and removal of some lymph nodes to test if it spread and decide if I need chemo. I was told radiotherapy is recommended. It was an overwhelming whirlwind this past 10 days, and I'm now trying to get back some control... I have my post op meeting with the surgeon this Tuesday am. Any suggested list of questions? I've also decided to ask her for 2 referrals for further treatment. Private (Cabrini Melb, where I was so far) >> I didn't really understood I have a choice to go to public... The Alfred - public, which is a walking distance from me... I've decided to go public pending in how soon they can see me. Any thoughts? Thank you all in advance! so glad there is a place to share what we're going through atm
Anastrozole
Hi all. I was diagnosed with invasive lobular carcinoma in October 2024. I had mastectomy of left breast in February with all clear margins. I am 75 years old and went to see the oncologist yesterday. He has prescribed Anastrozole to be taken one a day for five years. After hearing all the side effects from him and reading more I wonder if it is really worthwhile going ahead with treatment. Has anyone else had this dilemma?
Here we go again...
I've decided I was a bit nieve (not sure of spelling) about original diagnosis/treatment in 2023 so facing it again in 2025 is a bit of a shock. I live in Bundaberg and can not fault the system from detection, diagnosis and treatment as it was speedy. Might have been why my attitude was.....got breast cancer, have treatment, get over it and move on so I didn't let it consume my life. I felt blessed it was found early, I was told if you have to get cancer it is the better variety(grade 2, invasive lobular carcinoma in situ er +, Pr - ,her2 - )and it wasn't in any nodes so it was lumpectomy, radiation and hormone blockers. I have to say none of that terminology means anything to me now so I need to do a refresher. As part of my annual checks, concerns arose around a lymph node and two months later I'm home from surgery having lymph nodes removed. That's about all I know so not sure where to from here other than changing my attitude and thinking I'd better pay more attention to cancer and connect with others. I do think I'll tell the medical oncologist I don't like being in the 20% band where the blockers didn't work 😉🙂 as facing cancer again was not on my radar.First appointment since diagnosis
Hi Lovely Ladies, I have my first appt on wednesday at Peter Mac and was wondering if anyone else went to Peter mac and what their experience was with the first appointment. Im hoping to come away with some dates of appointments to start my journey or am I being unrealistic and is it just really an information session? Thanks in advance
Learnt some new. Re HPV
I have been informed that my cervical cancer removed by cone biopsy 37 years ago has come back to life but not in the cervix of all places I never imagined appeared as pre cancerous changes to part of my anus. Through research since finding out is that being immune compromised can trigger the dormant virus to get moving. Didn't even know it could. I suppose if chicken pox can come back as shingles not so surprising. Just not talked about Seeing as my neutrophils rarely go above 1.3 not surprising I suppose. Here I was thinking it was a haemorrhoid. Probable minor surgery in February. Of course the specialist surgeon has to talk to oncologist glad they know each other well.