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.
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
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.
Moving 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.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?