Member: Tri | BCNA Online Network

User Widgets

Contributions

Re: Waiting, waiting, waiting….
I hear you J_C and your feelings of rising anxiety, worry and sense of being given information that does not stack up for you sounds totally understandable. Everything turns on the diagnostics, so the delay in accessing them prolongs the experience. Sorry you’re going through this and sending hugs and positive vibes your way.
8 days ago Place Early breast cancer
Views
0likes
Comments
Re: Waiting, waiting, waiting….
HiJ_C I am sorry to hear about your diagnosis and hope you’re doing okay, the first few weeks can be a whirlwind of uncertainty. I am glad you’ve had your biopsies completed (they are tough). Everyone’s experience is different but yes I did have at least a week to ten days wait after the initial ultrasound and biopsies before I had the contrast die MRI and other diagnostics like the PET scan. I don’t know what could be meant by “protocols” … sorry. Maybe it’s to do with checking what subtype you have. There’s several different subtypes of breast cancer - I was ILC and a HER2 positive, oestrogen positive and progesterone positive subtype (aka Triple Positive, there’s a Group in this network) and the treatment for this was very targeted. Sending you solidarity- the waiting and uncertainty phase you’re in was something I found to be challenging as I was worrying about re-arranging my life and workplans. Just the wait for a clear plan tested my stress levels! There’s some great podcasts that I recommend as helpful- by a psychologist who has herself had breast cancer (Charlotte Trottman) - you can find these on the BCNA resourced menu. wishing you all the best 🌸🌻🌺
8 days ago Place Early breast cancer
Views
2likes
Comments
Re: Triple Positive HER2+
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!
8 days ago Place General
Views
2likes
Comments
Re: Discussion about surgery with Surgeon
HiRSVP I am sorry to know you’ve had this diagnosis. I had a “choice”— technically - my breast surgeon’s recommendation was for me to have breast conserving surgery/lumpectomy. Similar toMoomincorn’s experience my surgeon’s recommendation was based on her assessment of a range of factors after she had the diagnostic information. My surgeon and my oncologist recommended that I start 6 cycles of targeted chemotherapy prior to my surgery (Neoadjuvant treatment), as this would shrink the tumour size (it did shrink from 3.8 cm to <1 cm) reducing the quantity of breast tissue she would need to cut out. It might depend on your presentation and cancer type - I had HER2 positive and hormone positive breast cancers (triple positive) which has a very targeted chemotherapy and immunotherapy treatment. The outcome was that my surgery was very smooth and 3 years on from I have no evidence of disease. It’s hard to know if it’s the lumpectomy or the radiation but although I had a speedy recovery after surgery the breast remains sensitive and there’s a little bit of tenderness. The mammogram technician said to think of it like having a suitcase packed differently with parts of the breast contents packed back after surgery. I didn’t but perhaps it would be useful to inquire about a genetic test in case that has interesting insights. I don’t regret my choice to go with the recommendation. All the very best!!
9 days ago Place Early breast cancer
Views
3likes
Comment
Re: Feeling lost
I’m sorry for your diagnosisND87 I had HER2+, ER+ PR+ too - in January 2023; the waiting before you get started treatment is very hard - some great suggestions fromBoobVoyage I had Neo adjuvant treatment and it shrank my tumour from about 3.8cm to less than 1 cm - in some cases it can actually disappear. After my lumpectomy I also had radiation therapy and then 11 cycles (doses) over a period of a period of another 6-7 months. It’s now over 2 years since I finished the treatment and was started on Letrozole (an oestrogen suppressing medication (called an Aromatase Inhibitor) after the radiation. The treatment has been very effective so far - I have a check up every six months- no sign of recurrence so far. It is really different for everyone but I found the following things were helpful: having a portacath in my arm for the IV treatment; Betadene for mouth ulcers and a very soft toothbrush; signing up to an oncology exercise rehabilitation program; having a very soft cotton beanie to sleep in (I lost my hair) to keep my head snug, and having soups and bone broths. LikeBoobVoyage my tastebuds and appetite were a bit knocked around, it’s important to try and stay hydrated, somehow I found having a soda stream made it easier to keep up my fluids. We have a Triple Positive group thread here and it might be helpful for you if you join it? It’s not as common a breast cancer type as hormone positive only, maybe the nurse you have been assigned has not encountered it before. Sending you lots of virtual hugs and best wishes. Sing out with any questions- it’s great that you have found the online forum- there’s a lot of care and wisdom in this group.
26 days ago Place General
Views
1like
Comments
Re: Survivorship: The Part We Don’t Talk About — But Should
Hellomelclarity I appreciate your candour and thank you for how you thoughtfully outlined the benefits but also the legacy impacts for you of the treatment you had. Your reflections resonate with me, I am grateful for the positive outcome of this incredible treatment I received - to be here still is a blessing. I reconcile myself to the fact that the side effects are manageable and a necessary trade off. But it doesn’t cover up the fact that there’s changes, I try not to feel troubled by what feels like a sudden lurch towards a more aged version of ourselves. Hair, skin, sight, strength, sure footedness, vigour and stamina were central to my identity, something I took for granted so now - in the blink of an eye- they are not what they used to be, it is still something I need to process! The way I turn myself around is to reflect on how soooo much better I am now, compared to when I was in the thick of treatment. There’s little things: the walks I love on the coast and conversations (now my brain is working better), I can use an electric toothbrush again and my cholesterol and liver function numbers have found their way back to normal! I’m 3 years post diagnosis and this week received my annual “no evidence of disease” results (woot!) so I’m happy.
3 months ago Place General discussions
Views
4likes
Comments
Re: Feeling overwhelmed
Sending you positive vibesmadamcaptain76 I’m sorry for your diagnosis- it’s a moment and it sounds like you are a naturally thoughtful person by default (you feeling your GP’s pain) so good job allowing yourself to speak about your fears and feelings. The links below take you to some really helpful resources. You might even find these resources helpful to go back to later when your surgery and radiation are behind you. Once treatment is over it can feel a bit surreal. I found the BCNA podcasts really helpful after I completed surgery, radiation and chemo because it was only then that I felt ready to focus on and process the roller coaster I had experienced. I certainly appreciated finding the lump I had at “early stage” and salute you encouraging your friends to check and be screened! Wishing you all best for your surgery and radiation.
3 months ago Place Early breast cancer
Views
3likes
Comments
Re: Who to ask about pathology details?
HiMintyChicken I didn’t pick up on a lot of the details at the start of my treatment, only that it was Oestrogen+ Progesterone + and HER2+ but eventually I asked my breast surgeon about the type (ILC) because she held the records having received the pathology results after my initial biopsies and then surgical biopsies. All the best for obtaining the information you need and for your ongoing recovery.
3 months ago Place Early breast cancer
Views
3likes
Comments
Re: Happy Birthday @Arpie
Ditto from me - wishing you a Happy Birthday 🥳 and many happy fishing adventures! I always appreciate your wisdom and kind words on this network - lucky to have you!
3 months ago Place General
Views
2likes
Comments
Re: Post surgery pathology
I am so sorry to hear this for our Tasmanian friends 😢
3 months ago Place Surgery
Views
0likes
Comments

Groups

Work and breast cancer
PUBLIC GROUP - This is a space to connect around the challenges and questions that come with managing work and breast cancer. Whether you're navigating time off, returning to work, dealing with workplace conversations, or exploring your rights and options, you're welcome here. This group is open to the public (not just members of our online network) to help broaden access to important information, practical advice, and peer support.
1 month ago17 Posts
Triple Positive Breast Cancer (TPBC)
This group is for people diagnosed with triple positive breast cancer (TPBC), a subtype that is typically characterised by higher levels of ER, PR and HER2 protein . While we share personal experiences, please remember that the information in this group is not medical advice—always speak with your healthcare team for guidance.
Let's talk: vaginas, menopause & me
PRIVATE GROUP. This group is a safe, supportive space to talk about sexual health and emotional wellbeing during and after breast cancer. We discuss topics like menopause, vaginal dryness, pain during sex, UTIs, and changes in libido, and share ideas and products that may help. Whether you're navigating intimacy with a partner or reconnecting with yourself, you're not alone here. This is a place for open, respectful conversations and shared understanding.
Invasive Lobular Cancer (ILC)
This group is for anyone diagnosed with invasive lobular breast cancer (ILC), which begins in the milk-producing lobules and accounts for around 10% of invasive breast cancers (US statistics). Connect with others, share experiences, and access peer support from people who understand the unique aspects of an ILC diagnosis.

User Profile

Tri

User Widgets

Work and breast cancer

Triple Positive Breast Cancer (TPBC)

Let's talk: vaginas, menopause & me

Invasive Lobular Cancer (ILC)