Hormone inhibitor treatment decisions
Sorry this is a long post. 70 year old, between August 2024 to April 2025 diagnosed DCI, PR+, ER+, HR -, R partial mastectomy and reconstruction, radiation, Anastrazole(such awful, awful side effects ) 4 months then Exemestane 2 months. Completely crashed from side effects of Aromatase Inhibitors, had to stop multiple antidepressants in preparation for Tamoxifen, so crashed even further, quality of life so low only my family kept me here. Stopped Exemestane end of March couldn’t keep going. All this on top of Fibromyalgia, chronic pain, major long standing treatment resistant depression. Have been having positive ketamine pain management treatment and psychological support from onco-psychologist and with concerned calls from onco-endocrinologist and clearer mind realise have realised that i need to review my treatment decisions. I am still scared of restarting Exemestane but more afraid of Tamoxifen side effects. I’m due to see endocrinologist in 2 weeks to discuss what to do next but am appealing to you all to suggest some options or feedback so I go with as much information as possible.
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 xDouble mastectomy and immediate reconstruction
Hi all, new member of this exclusive club nobody wants to be a part of! Just found out the lump in my right breast is cancer 5 days ago. I’m 43 and considered young for cancer (how nice… been a while since I’ve been called young 😅) I am still in shock so have gone into plan mode. I Still don’t know what stage type or grade yet but scheduled for a breast MRI and biopsy tomorrow. My question is if anyone has ever been through Peter Mac as either a public or private patient? What was the experience like? How long was the wait for surgery and reconstruction? I’m not sure if my private will cover all costs of surgery as my surgeon (who operates privately) so far says I’m a candidate for a double mastectomy but is waiting on biopsy report and MRI. Ideally I am leaning towards an immediate DIEP reconstruction. Anyone had that before? Thank you 🙏
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.
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
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.
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.
2nd operation DCIS
Hi all, Was diagnosed in Feb this year with high grade DCIS, 3 small tumours. Lumpectomy 3 weeks ago. Pathology report came up with not clean edges. The surgeon said I have two options, do another re-excision with most likely radiotherapy and endocrine therapy, or mastectomy. I have a family history of breast cancer. Has anyone been through this desición before? What was your experience like? outcomes? Thanks for sharingMoving from private to public for follow up care?
Hi all I was diagnosed with Stage 1 ILC (E+ P+ HER -) in August 2024 after a diagnostic lumpectomy. I completed active treatment in October last year - second lumpectomy and sentinnel node biopsy and radiation. I did all my treatment privately at the time as I was unaware I could have private surgery then public rads/oncology which was a costly mistake. I’m unhappy with my surgeon and will be seeking someone new for ongoing follow ups and am wondering if this is the time to switch to the public system? I’ve been advised out of pocket costs will be about $1500 between required consults and 3D mammogram with contrast and ultrasound if I stay in the private system which feels like a lot when treatment last year pretty much wiped out our savings. I’ll still stay with my private oncologist who I really trust. Keen to hear any experiences or thoughts. Thanks in advance.? 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?