How did I get here?
Hi everyone, what do I say…I am in shock! I felt it was time I reached out to the community as I’ve been reading all your posts the past few weeks and now I really need support and reassurance. I am 56 and have a wonderful husband and three beautiful 20 something children. I had a routine mammogram in April (12 monthly due to Mum and sister both having BC in the past - both early and doing fine now) and diagnosed on 13 May with invasive carcinoma with micropapillary features, 17mm in size, ER/PR+ve HER2 2+equivaocal from biopsy and ultrasound/3D mammogram. A further weeks wait for HER2 ISH testing which was negative before surgery options were discussed. As I have size G breasts and the lump was apparently so small I opted for WLE with oncoplastic breast reduction as my Mum and sister had both had good outcomes with lumpectomy so I was confident with the reduction they would get good margins. Surgery was performed on 30/5 and I’ve recovered well. Here js the kicker…I went back for the surgery and sentinel lymph node biopsy results and first the surgeon tells me the tumour was 64mm not 17mm! Then he tells me there were mega metastases in the lymph node which was removed. On the pathology report it say ‘the lymph node is almost completely replaced by metastatic carcinoma with similar histological features’. The sentinel node was 28mm. Does this mean I have metastatic cancer? I am reeling…how did they get it so wrong??? And what now? The surgeon has said the next step is an auxiliary dissection which he has booked me in on 30/6 to do…20 days away! He said he needs to wait for things to settle properly after the last surgery with reduction. Meanwhile this cancer is travelling all through me… I am booked in for a PET with CT scan on Thursday which I guess they are looking for more metastases. Should I also be asking for a bone scan? I have not been referred to an oncologist yet, apparently that is after the next surgery but I really don’t understand why they wouldn’t be thinking to get me started on that now rather than waiting even longer. I just can’t comprehend the results I got yesterday. I have so many questions and I just feel like the surgeon is following a routine but I don’t understand why. After a sleepless night of anxiety through the roof I would love some words of advice from this amazing community. Thank you x
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)! Ned01CheriSukiCheriAnna15FeRnurserachMareealsoTriplebreast240Number2CaitySXC1947
Genomic Testing experiences
Hi all, I’m a 46 year old mother of two older teenage boys and was diagnosed with breast cancer in April 2025. I have since had a lumpectomy and sentinel node clearance and been advised I had Stage 1 Grade 2 invasive ductal carcinoma with lobular features with clear margins and no node involvement. My tumour was 16mm and is ER/PR positive and HER2 negative. I saw my medical oncologist on Friday and we discussed will be radiation and hormone therapy with Tamoxifen for up to 10 years if I tolerate it. My online prediction is that chemo will be of no benefit to me but my oncologist did discuss the genomic testing and that it was my decision as to whether I have it or not but if I did want to go ahead I would need to make a decision quickly as I am already nearly 3 weeks post op. I am looking for advice or peoples experiences as to if they were offered the test and what they did. I know everyone is different and that the cost would be prohibitive for a lot of people. We can afford to do it but I’m unsure as to if it is a good idea or not. thank you in advance for any advice or experience you’d like to share and good luck with all your journeys x
? Chemotherapy
Please HELP!! Hi everyone, i am 45 years old and i have recently been diagnosed with; ER positive Ki-67 positive Tumour size 12mm Toumour has been surgically removed 6 weeks ago with clear margins from right breast. Tumour grade 3 2 x Negative nodes I was told that i need radiation therapy and endocrine therapy. But i was given the option to decide if i want to have chemo as well! I am really struggling with making this decision whether i should have chemotherapy or not. Or do i just do Radiation and endocrine therapy. I was wandering if anyone has been in similar situation as me and how did they decide on treatment plan?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?
Surgeon or oncologist first?
Hi, I had a lumpectomy for early breast cancer four weeks ago and have possible further surgery pending as didn’t get clear margins. With all the time one gets between the steps of the treatment process, husband has just asked why I was directed to a breast surgeon initially and not an oncologist. I feel foolish to have not considered this. I tend to “trust the process” and perhaps don’t question enough. I think I understood, perhaps wrongly, that surgeon consults closely with oncologist prior to surgery in multidisciplinary meetings… Is it standard to only meet oncologists once ready for radiation and endocrine treatments? Wouldn’t an oncologist be the best to advise on appropriate margins pre-surgery? I’m interested to learn about the sequence of your interactions with specialists if anyone is happy to share please.
Hello Fellow Peeps
Hello - Lovely to meet you all! Didn't expect there would be so many of you! Didn't expect to be here - but here we are! Thanks to BreastSceen Qld and team of pathologists - they found DCIS G#3. What an amazing group of caring people. Next is an appoint re treatment - only 17 more days to wait - not that one needs to be impatient about such things. Ha. In any case I kind of know the options - but would love to hear from anyone regarding their treatment and recovery and choices - especially if you're a runner/jogger and a multiple dog mum who loves 2 walks a day. Thanks so much and take care everyone :-)
Do I stay or do I go?
Not your average post. Originally a backpacker from the UK, been in Aus 5 years and have moved onto a work sponsorship visa with my employer. I live in a very remote area and it is a 4 hour flight to my nearest 'treatment centre'. Two weeks ago it was confirmed (via biopsy) that in my left breast I have a 2mm invasive mass, and 10cm of non invasive DCIS. I had a contrast mamo and PET scan (no result yet) and scheduled for an MRI on the 6th June, and appointment with the surgeon to discuss options on the 10th June. My breast dr said the surgeon will recommend a mastectomy due to the large area of DCIS. Possibly chemo, radio and hormone therapy. They are also talking about what I want to do with my eggs. I am so scared, and I am not sleeping. I am only 34 years old without children. I don't know what to do, do I stay here in Australia and undergo the treatment recommended and stay near the hospital with the mother of a friend (who has also had breast cancer and has said she is more than happy to support me through required treatment). I love my life here that I have built over the past 5 years, and I love my job. I am scared I will lose my job with the next few months of treatment coming up (very little can be done remotely), my visa is tied to my job. I may get deported mid way through treatment? I dont know? I know I should speak to an immigration lawyer but I am already inundated with administration from cancer. My family back home are very supportive and will support whichever decision I make. They and I am also wary of the health care system back at home (which isn't in great shape). If I go home, I will take all my diagnosis letters and scans, but I will still have to start this process again from the start and basically be told twice I have cancer and they want to chop my breast off. I wont be able to get a job due to appointments and treatment, and wont be entitled to benefits as I haven't paid tax in my home country for 5 years. Its not just cancer anymore, I am not scared of the cancer as such as my whole life here being ripped away from under my feet. Sorry for the long post. I just don't know what to do for the best. Either way, I need to stay here until I have the full picture and know what the surgeon wants to do.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.DCIS - Mastectomy - Recon - clear for two years....now potentially something else
My situation in a brief paragraph: At 50 years of age, I was diagnosed with DCIS in my left breast. I opted for a bilateral mastectomy and recon. Sentinel nodes were clear. No radio or chemo required. That was almost two years ago. Apart from now suffering all the typical effects and symptoms of menopause due to no HRT, I've been blessed with a dream run and fantastic road to full recovery from BC. Completely grateful and thankful for the team and support I've had around me. The latest situation is that I've just been for my second annual post BC ultrasound with a view to reducing visits with my surgeon from three monthly to annually. I was looking forward to kissing cancer goodbye!! However, the sonographer has found an inflamed and vascular looking lymph node in my right armpit (opposite side to original BC diagnosis). It was explained to me that this can be due to a number of reasons: fighting off an infection, breathing in smoke, recent flu vaccinations or, at worst, something more sinister like cancer. My surgeon reviewed this and wants another ultrasound in three months to check on it and if need be, will biopsy then....I have a sick feeling about this. Since I don't feel like I'm fighting an infection, I haven't breathed in smoke lately & my flu vax was done 10 weeks ago in the opposite arm .... I am feeling extremely anxious that cancer has returned and that it's found a spot in my right armpit to grow and spread. A three month wait to see if this is or isn't the case seems like absolute torture and a return to 'the waiting game' that only cancer sufferers know. I'm sure that most of you reading this post can relate to the worry of 'the wait' when you have that initial cancer diagnosis. The awful feeling of being out of control and the unknown picture of what's up ahead. Sleeplessness has returned. Constantly thinking about it has returned. The worry has returned. I have back and neck pain that I'm sure is due to the stress, but am naturally concerned it's cancer returned. Since my mastectomy and recon, I've been able to put all of that aside - until now. Has anyone here experienced a vascular anomaly with their lymph nodes post having BC and recon? If so, what was it attributed to? How was it handled by your team? Should I be asking for a lymph biopsy or intervention earlier than waiting three months or am I worrying unnecessarily? I'd be grateful for any thoughts, honest advice or similar experiences & decisions that anyone can offer.