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
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
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.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.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
Double 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 🙏
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 sharing
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.