ER/PR+ HER2- invasive lobular
I’m a 47 yr old mum of one 6 yr old. I received my ER/PR+ HER2- invasive lobular cancer diagnosis this week. Due to strong family history (mum passed away at 62 in 2012 with triple negative BC- and her mother also passed away at similar age from BC type unknown as it was late 1970s) - my sister and I had started the process of having additional screening etc. My mammogram and Ultrasound in Jan this year was clear - MRI last month showed something- which following a core biopsy has revealed 3mm ER/PR+ HER2- invasive lobular cancer. As I was already under care of private breast surgeon due to wanting extra screening etc- I feel grateful to have already talked to her about surgery options and possible surgery week of 12th January. I went for genetic testing this week and now wait to see results. Am weighing up option of double mastectomy(and reconstruction) - though surgeon has advised its very early and very small so lumpectomy and sentinel node surgery is a very feasible option too. Followed by radiation therapy and tamoxifen. If I chose a mastectomy it may reduce my need for radiation and tamoxifen.
Looking at the 3rd surgery in 1 month
Hi all, I have been diagnosed with Stage 1 breast cancer with two less than 2cm but fast growing grade 3 tumor in mid Sept and had the lumpectomy surgery to remove the tumor . however pathology report came back saying they found DCIS cells at the margin. So I quickly done a re-excision surgery in mid Oct. The second surgery hit me really hard for not only I felt more pain but also i felt way weaker. But this tues, the surgeon told me they find IDC cancer cells at another margin. Now the surgeon is saying you should do another lumpectomy re-excision surgery. Emotionally I am devastated. But I cannot understand why can't they do a MRI to double check the margin? Or is this newly grown mass? My surgeon was not very open in sharing information. I am now seeking 2nd opinion. But i am so worry it will delay my whole treatment process. Anyone has similar experience to go through multiple surgeries?
Recommendations-North Brisbane -Public v Private- Surgeons
Hi Everyone, I do hope everyone is travelling as well as they can be. Was hoping to hear of experiences and recommendations about Public v Private -North Brisbane. My GP has advised if I choose to go private then I need to find surgeon and they can send referral. Not sure where to start…have rang some surgeons, am feeling like I am looking for a needle in a haystack. Has anyone had experiences with going private and having significant out of pocket expenses? Or going Public and what wait times/facilities are like, that they are comfortable in sharing. Preliminary advice is that it is likely treatment will be Chemotherapy then surgery, nothing confirmed until appointment with surgeon.
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
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
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
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 🙏
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
Recently diagnosed DCIS
Hi, Like everyone I never thought I would be here...yet here we are! I have recently been diagnosed with IDC Er/pr + HER2- tumour was 9mm grade 3 ki67 40, lymph nodes negative but there were 3 cells. I'm 53 and postmenopausal with ovaries removed 2 years ago. I've had 2 surgeries in 4 weeks. The tumour was successfully removed, however the margin in one section showed DCIS right to the edge so they took a little more tissue which came back all clear. I met with my oncologist today and he has recommended 4 cycles of chemo, radiation and then hormone therapy. The Chemo he is recommending is TC, oes anyone have any experience with this treatment please. I'm pretty sure I will do it as I want to give myself the best chance possible for full recovery. Thank you
