Waiting, waiting, waiting….
Hi all, diagnosed 1st September, multifocal invasive lobular carcinoma. Surgeons appt scheduled for 17 September. Surgeon has referred me for an mri with contrast. The surgeon completed my biopsies (3) in breast screen clinic, so I’ve met her. My biggest question now is how long do you wait for the mri apointment? They acknowledge receipt of ‘urgent referral’ on 2nd of September and now it’s the 10th, they’re telling me they are waiting on ‘protocols’, my breast care nurse is wonderful and is following it up along with me, how long did you all wait? I thought I was coping not too bad, but today it all just seems really cruel……?
What would you do if you were me?
Hello everyone, I have a big decision to make and need to get some different takes on it. This is my basic situation in dot point form: New primary dx. of Stage 2b ER+ PR+ HER2- right sided IDC with some DCIS in July 2026 Lumpectomy and SLNB done three weeks ago Clear margins and 7 nodes taken, all clear but extensive lympho-vascular involvement on histopathology report Previous hx. of Stage 3a left sided ER+ PR+ HER2- IDC with some DCIS in 2016 Had neoadjuvant FEC-D chemo, lumpectomy and axillary clearance, radiation and hormonal therapy in 2016 with complete pathological response Oh and lymphoedema in left arm just because why not add insult to injury My oncologist says she and her buddies all concur that I need chemo again because of the extensive lympho-vascular involvement. She painted a very grim picture to me of possibly having a recurrence or distant mets if I don't do chemo again, but only do radiotherapy and hormonal therapy. She seems to think that some cancer may have slipped through my blood or lymph vessels and could come back as metastatic disease in the next few years if I do not have chemo, and could die within 2 or 3 years worst case scenario. My cancer is grade 3, KI67 45%. I told her I have been utterly traumatised by breast cancer treatment personally, and having just lost my Mum to advanced lung cancer with brain mets last September, I am basically going to be unable to cope with the mental and physical damage that undergoing chemo again would cause. I cared for my Mum for 3 short months and threw away my whole life, work, health and everything to keep her with me as long as possible but it was not enough. I was beyond heartbroken to lose her and still have had no chance to truly grieve, due to having to now fight for my own life again. I'm 48, single, no kids. I have no extended family still alive and living near me, and not estranged due to family grudges that I wasn't even a part of. I have PTSD and have been on worker's comp for a couple of years. I have a few good friends but they live in different states, and some are actually in their 60s and 70s, some younger than me. I live alone. I have to clean out and sell my Mum's house and use the income to live off until I can figure out what the next phase of my life will be. I'm devastated to have to have this all on my plate. If you've read this far, thank you! Bear with me. Can you please honestly tell me, having considered all of the above, if you would go ahead and do a second horrifying stretch of chemo, radiation and hormone blocking drugs, knowing the toll it takes on you even in 'ideal' circumstances let alone in my particular circumstances? Would you want to live through the next 10-15 years after treatment only to most likely get cancer again and know you would not be able to fight it again? Is quality of life and actually ENJOYING life, having freedom and independence, feeling like a woman, and not being a slave to this **bleep**ed disease more important than fighting all over again with no promise of success? I'd really like to hear your thoughts. Thank you.
DCIS diagnosis last friday
I found out Friday afternoon that I had DCIS, thought nothing of it till later in the evening when I was doing a bit of research . Totally overwhelmed & unsure what to do now, surgeon is having a team meeting Wednesday & then having a telehealth with me. AtM I’m trying to put together a few questions based on the pathology results I have. I want to be proactive & aggressive in confronting this disease. Any commments or ideas? I have had MRI, needle biopsy, ultrasounds, & then excision. This was all following my sister diagnosis of invasive lobular breast cancer recently. I had no symptoms prior & a negative mammogram last November .
First appointment with a surgeon
So my first appointment with a surgeon is this coming Wednesday. I am going through a public system in Brisbane. Will I be having any tests done on the same day or is it more likely that he will tell me to come back and get the tests done another day ? He’s got my mammogram, ultrasound and biopsy results already. Thank you!Predict - Breast Cancer app
I’ve just discovered an app called ‘Predict - Breast Cancer’. I may be late to the party on this one and you might all know about it but I’d like to know your opinions if you’ve used it and if you’ve discussed it with your oncologists. It strongly recommends that patients use this tool in consultation with their doctor. The app’s blurb says: “This tool applies to women who have had surgery for early invasive breast cancer and are deciding which other treatments to have.” ”Predict is a tool that helps show how breast cancer treatments after surgery might improve survival rates. Once details about the patient and their cancer have been entered, the tool will show how different treatments would be expected to improve survival rates up to 15 years after diagnosis. This is based on data from similar women in the past. It is important to note that these treatments have side effects which should also be considered when deciding on a treatment.” It claims: ”Development of the model was a collaborative project between the Cambridge Breast Unit, University of Cambridge Department of Oncology and the UK's Eastern Cancer Information and Registration Centre (ECRIC) (now part of the National Cancer Registration and Analysis Service) and was supported by an unrestricted educational grant from Pfizer Limited (the company had no input into the model at all). The website has been built by the Winton Centre for Risk & Evidence Communication at the University of Cambridge who are funded by a generous donation from the David and Claudia Harding Foundation and the Winton Charitable Foundation. Predict has been endorsed by the American Joint Committee on Cancer.” This is a link to the app: https://breast.v3.predict.cam/tool
Monash Health or Peter Mac
Hi I had gone private when first diagnosed with 1 lump and treatment would be lumpdectomy and radiation. Then after an MRI, results showed multifocal in the other breast too. The treatments, and surgery both sides, the out of pocket cost is so high. I would not be able to afford an immediate reconstruction or any private reconstruction. I am in Melbourne and would like to know anyone's experience with Monash and Peter Mac around having a double mastectomy and reconstruction please. I have booked with my GP on Monday to organise an urgent referral. Any experiences would be very helpful. Thanks everyone.
Discussion about surgery with Surgeon
Hi all, I have been diagnosed with invasive breast cancer and I have my first meeting with the surgeon on Thursday. I know to expect surgery soon but dont know if this will be lumpectomy or mastectomy. I know that this will be one of the things to discuss on Thursday but I am curious if there is a 'choice' - in a sense part of me just wants to be told which option but I wondered if anyone here made a decision one way or the other and how they felt about that? Am also putting this query in the treatment thread as I have not posted before and not sure which is better for this. Thanks for any thoughts.
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)! Ned01CheriSukiCheriAnna15FeRnurserachMareealsoTriplebreast240Number2CaitySXC1947Second Opinion
Hello 🌸 I’m just wondering if anyone had a second opinion before proceeding with surgery? each time I email the Drs clinic, I feel like I’m fobbed off & just told I have to have surgery (I’m ok with that if all my questions are answered and they haven’t been) not sure how to go about seeking another opinion. Any suggestions?
