Forum Discussion
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)!
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19 Replies
Hilollyshopgirl im so sorry to hear about your diagnosis. I was diagnosed late last year with triple positive breast cancer and found this community helpful and supportive. I finished my chemo yesterday so please feel free to reach out if you have any chemo related questions, side effects or thoughts you’d like to share.
AlsoTri i am unable to join the triple positive group, are you able to add me in or give me a link I can use to add in? Thanks
HiJ_Nelly I just pasted the link in a separate standalone reply in this thread. If I try to incorporate it in with this message error messages pop up. If you request to join the online administrators usually join us fairly promptly within a day.
Just want to say huge congratulations on completing your chemo this week. It’s no cake walk so big salute for getting to this important milestone. Hope you’re feeling as well as can be. Once you are in the Triple Positive Group please do ask any questions and share your story there too!https://onlinenetwork.bcna.org.au/group/triplepositivebreastcancer
Hiya I’ve been diagnosed Feb with this triple cancer - positive.
not good with the names yet.
Im feeling lost totally adrift from the world I was in before February.
Start 1st chemo tomorrow morning , 3 weeks of chemo and I week of another for the HER2
Finally received link few mins ago to BCNA I’ve been told I’ll have a nurse back in Feb, went to appt to meet nurse - no one showed up left after few hours Breast Cancer Clinic waiting room Totally in the wilderness, can you point me in the right direction if this is not the group for Oestrogen + Progesterone + and HER2 in LobeThank you very much for taking time.
Hilollyshopgirl thinking of you 1 year on from your diagnosis. I hope you’re keeping okay and are beginning to see the finish line. Thinking back I remember how ready I was to get to completion ahead of the last two or three cycles of the very extended Triple Positive treatment regime. Sending you all the best!
I have tried to include a link to the Triple Positive Group in my first reply to your message but unfortunately I keep hitting a blocker lollyshopgirl
This link should take you to a list of all the Groups, just scroll down until you see the Triple Positive Group. There’s also a Lobular Group.
Category: Groups | BCNA Online Network
Thank you, I've joined the group and 2 others that seem applicable. Need to find how I work thru this BC I feel like someone shot me out of a rocket and I'm floating cold and icy through outer space....out there I know people are speaking... I can barely hear and no longer recognise the language.... nothing looks right anymore .
Smiles from me
I am sorry to hear about your diagnosis and yes, it’s absolutely ok to discuss being diagnosed with Triple Positive here.
Suki mentioned that there’s a private Triple Positive Group join by clicking through the link and requesting to be added.
Good wishes for tomorrow’s first treatment my experience was that the nurses provide quite a bit of information at this first treatment. I had my doses intravenously and at the first treatment the nurses discussed getting a “port” inserted for the duration of my treatment. I don’t know if it’s been mentioned but it was something that made things easier because I am always told my veins are hard to find.
I think the treatments affect each of us so differently so it’s worth keeping an open mind about it because you might have minimal side effects. I found I could always ask the nurse on the ward where I went for my treatments if I was uncertain about a side effect but also, you can always ask a question through this network about tips or suggestions. For example I found using Biotene helped with some of the side effects (a dry mouth) and having soups and crackers if I wasn’t feeling like a big meal.I echo Suki’s suggestion- even if you can manage 20-30 minutes walk or 3 x 10 minutes walk during the days after chemo I found being mobile and active useful. Eventually I discovered the oncology exercise rehabilitation program that was being offered by my hospital- a game changer for the good me.
Might I ask whereabouts you are located; there might be some of our members in the same area and they might know of other resources local to you?
Will be thinking of you tomorrowHiya there.
Thank you for your lovely reply. Things changed within hours of me posting. Date of 1st Her2+ and chemo starts today now. l
It's early am and I can't sleep or keep still. After having orientation to treatment instead of actual treatment and 1 hour plus of side effects
I'm a bit of a mess.
There is good news, I've been transferred to the smaller and nicer hospital in Lilydale Vic and will maintain the one Oncologist through entire treatment - hooray! Maroondah was overwhelming and a blood test takes up to 2hours waiting.
Lilydale's Oncology nurses do your blood tests etc Great news.
All a few mins from home.
I found lumb 1st Feb. diagnosed 7th Feb. Had many biopsies and then markers implanted. Then heaps of other things ie PET scan, MRI, loads of scans on other organs finishing up last week with a colonoscopy. PET showed flares in a few places, all had to be excluded. Except one biopsy couldn't be done, near top tier lymph... All negative. Exhausting
Treatment 1st thing this morning. Wish I could sleep instead of trembling.
First time I've been anxious - the whole lead up is like many body slams - was ready for Tuesday. Now I'm undone.
Sorry to go on. I've never said so much about myself. Not even my friends know yet.
I'm single mum with four adult sons. They've been wonderful - wow- who knew they were made of solid gold. For that I'm am truly humbled.
Big smiles and regards
Just an update, I heard from the BCNA online team that they’ve managed to send invitations to the previously approved members inviting them to rejoin. If anyone’s in this category the invitation might be in your email in box.
Yes but the Group members who joined pre-31 March 2025 are no longer showing as members. There’s only 5 or so of us, compared to about 30 of us prior to 31 March
