Just diagnosed IDC HR++ Her2 low mulitocal, still awaiting further tests and freaking out!
Hi all nice to meet you all but wish it were under better circumstances. I have just been diagosed earlier this month for a check up that I thought was going to show nothing so I was really thrown. I have a least two 1.5cm lesions and a number of smaller ones they are not sure about yet. Just met with the breast team yesterday for my first appointment. They were all lovely but not much info yet as they need to run more tests. They did two more biopsies of lesions not done initially and also ordered a bone and CT scan as well as an MRI. I was expecting teh MRI as I have Very dense breast tissue. I was not expecting the bone and CT scan, which they said are staging scans, as given the size of the lesions I thought I was considered early breast cancer. She reassured me this was just standard practice for lesions over 1cm but I have been in a tail spin since worrying it is already stage 4. I have a 9 year old son, his dad is completely unreliable and probamatic so does not and will not be living with us anytime soon. I havebnt even told him about it yet as he's not in a potisiton to do anythign right now and it would just cause more stress. I am the sole provider for us and all I can worry about is what happens if I go down. Who pays the mortgage, who puts food on the table. I know this is all way down the line and I keep trying to bring myself back but it's so hard. I am usually a very rational person so this is killing me. My next lot of scans are on Sunday and Monday and my follow up appointment will be a week after that to give them time to review the results and discuss my case before coming up with a plan. On one hand I am terrified it's going to be worse case senario and on the other I am terrified it if is bad news they won't wait until my next appointment and they'll call just before christmas and I'll have to manbage that on my own without ruining my sons day. He's already had to deal with enough of an emotional rollercoaster with his dad I don't want to add more to that. I thought I was doing ok but I'm crumbling. Every ache or pain has me over analysing. I know the waiting is the hardest part. I almost think I would be handling it better on my own as it would be ok to fall apart but I have to stay strong for my son.
Newly diagnosed and waiting for appt. breast becoming more tender as I wait :-(
Hi there, I feel I’m in the difficult position of waiting four weeks between diagnosis and first surgeon appointment. Invasive lobular ER+ PR + HER2 - lump that I noticed in right breast a month ago. I’ve had the MRI done privately this week so the information is ready at that appointment. Trouble is the breast and armpit just feels increasingly niggly and slightly tender while I wait. I’m worried that it’s just growing/spreading as I wait. I don’t have private insurance, do have savings. but wanted to hold out for public and it being a more multi-disciplinary team. I’m really struggling wondering if I should have gone private and quick :-( Thank you x
DCIS, DMX reconstruction new diagnosis
Recently diagnosed DCIS Stage 0. Opting for DMX and reconstruction using my tummy fat same day…. Videos and some social media groups are TBH quite confronting and disturbing. I would rather know but….. Reading and hearing how awful the recovery is, pain, discomfort, loss of movement and after some helpful tips to prepare please: particularly diet, did you change your diet pre surgery? High protein to help with recovery? Can you recommend a website or recipe site? Things post surgery: hire a recliner to rest in, did you hire a wedge or breast pillow as well? Button up shirts and pjs, anything else that you found useful please? I’ve heard about the drains which sound daunting… what do i need to do with them? Toileting and cleaning myself… I hear you can’t put your arm around your back to wipe? I’ve got wet wipes but …. Don’t want to ask my partner to wipe my bum? Diet after surgery to avoid constipation. Any tips would be greatly appreciated thank you so so much.
Triple negative recurrence
Hi I was diagnosed with Triple Neg last March 2024 and finished chemo and radiation end Sept. I got through it all fine-not too many side effects bar the usual and I was exercising, eating well, and feeling positive about it not returning but then in November I felt a lump but wasn't too concerned I thought is was just fibrous tissue post radiation but it has returned and not only that I now have a small oestrogen postive one in the other breast. In a week and a half i have gone from ultrasound, PET scan biopsy and starting chemo last week and had 2nd one today. As well as immunotherapy and a double masectomy when chemo has finished. I'm just finding it quite hard to cope with this time (even though) the PET scan shows it hasn't spread anywhere. I was so strong last time but this time I feel like the rug has been pulled out from under me and I'm finding it hard to stay positive. I sat and just had tears running down my face for a lot of the chemo today. I didn't really feel the need to use BCNA much last time but this time I think I need some extra support. Thanks for listening, just nice to know there are people out there who can empathise with how I'm feeling. Take care.
Post chemo / zoladex & letrazole side effects (hoping for some hope - please!)
Hello ladies, I finished 6 months of chemo (doxy then paclitaxcel) recently and then started on zoladex and letrazole last week. I am feeling VERY anxious all the time, very tired and flat - not like "myself" at all and really pretty non-functional. I can barely make a cup of tea and seem to just stare at walls when I'm home alone (often). I managed surgery and 6 months of chemo basically alone and unsupported and I coped. Now that I'm closer to family I seem to have really mentally crashed. Motivation is zero and the smallest things are an effort. I was more functional than this DURING chemo... Is this normal post chemo? A crash? Or is it the new hormone suppressants? Will it pass? Can anyone PLEASE offer me any words of wisdom or hope around recovering from chemo and the adjustment times to the hormone suppressants? Wishing you all so well. SDM.Raelene Boyle on Julia Zemiro's Home Delivery today (repeat)
Raelene Boyle has been a huge advocate for Breast cancer since her own diagnosis with BC nearly 30 years ago - what a GREAT spirit she has! Oh My Gosh ... I can relate to SO many things that she discusses with Julia Zemiro! LOL Raelene was diagnosed at the same time that the founder of BCNA, Lyn Swinburne was first starting her support for women with breast cancer (out of a Bakers Delight office!) just under 30 years ago. She was then diagnosed with Ovarian Cancer, twice, then Epilepsy! She is still going strong & is an Ambassador and founding board member of BCNA: https://www.bcna.org.au/resource-hub/podcasts/upfront-about-breast-cancer/upfront-about-breast-cancer/episode-21-raelene-boyle-on-pulling-herself-out-of-the-darkness/ You can watch her interview with Julia Zemiro on ABC here: https://iview.abc.net.au/show/julia-zemiro-s-home-delivery/series/6/video/LE1761H006S00
Working while waiting for surgery
Hi all, was diagnosed 3 weeks ago today with early stage and was told I’d be having surgery pretty quickly. Ended up having to have more tests to eliminate issues in the other side and thankfully that all seems to be clear. But that has meant I still don’t have a date for surgery (I should find out tomorrow hopefully). My question is about how you’ve all kept sane during this ‘limbo’ period. My emotions and anxiety are all over the place, I can’t really focus or concentrate so I’ve taken a fair few days off work. I’m lucky enough that I can work from home (when I’m up to it) and my boss is awesome but I weirdly feel guilty about taking time off as though I should be managing this better. I’m conscious my surgery might not be for another few weeks so feel I need to work out better ways to handle this. Any inputs welcome! Thanks.
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
