So far pathology etc result of grade 3 invasive carcinoma NST .ER- PR- HER2 pending. Got results via zoom at my request because I was on the road.Off to GP today for referrals then into BSQ tomorrow for info session. Trying to navigate my way through the lingo 😩. Not sure whats ahead…..feeling lost.

Hi @Number2 Sending you hugs for your neoadjuvant chemo.I did TCHP for triple positive IDC last year. When my hair started falling out, I did a number 4 with the clippers. I didn’t need to shave as the rest fell out anyway, but there was less mess as it was shorter. I wore a bamboo beanie as it was warm (for winter) and soft for my head.Hopefully someone else can help with the nostrils and armpits, as I didn’t have those side effects. Definitely contact your oncologist if you are concerned about the armpit swelling.My tongue would be thick and horrible in the first week after chemo. Everything tasted bad, including water so I struggled to eat and drink. I would gargle warm, salty water all throughout the day or Oral7 mouthwash. Also try chewing gum.All the best

hi @Number2 I am so sorry to hear about this diagnosis for you. Understandably you are wondering about how this could change your plans in 2025. I echo @iserbrown - it’s a frustrating wait for you because the duration of your active treatment will depend on your results. It will be tailored to take into consideration many things including your pathology (noting you have had a biopsy already) your family history, and a CT scan/or MRI or PET scan along with the size and location(s) of your breast cancer.When I was diagnosed I remember being astonished there was so much variation in the types of breast cancer and therefore so much variation in treatment. I really didn’t absorb quite how long I needed to make space for my specific treatment in my life. If it helps I can share my treatment timeline.The main thing was my diagnosis as HER2 positive (only 15-20% breast cancer diagnoses are HER2 positive). I was also oestrogen positive and progesterone positive.HER2 positive treatment is usually administered over a 14 months timeframe. On the upside the treatment is very targeted and effective. I commenced in March 2023 and finished 14 months later at the end of April 2024. Luckily the treatment didn’t cause side effects for me that required the treatment, surgery or radiation therapy to be stopped. I hope it gives you an insight into the duration and if it turns out you are HER2 positive please sing out if you have any questions. Sending you lots of positive energy for the days and weeks ahead as you continue to work through your diagnosis and what 2025 could look like for you.

Hi @Number2 some great tips there from @Blossom1961 and @iserbrown 🌺🌻🌸🌷Nails: I think the medical term prefers you to wear something that isn’t too hard to remove. My surgeon required nail polish off for my lumpectomy. I had the chalkiness, splitting and discolouration but also, one of them became infected* (fairly late into the 6 cycles) so think about polish that’s kind on the nails and easy to remove. *My GP prescribed antibiotics to fight the infection.I agree with @Blossom1961 and encourage you to feel confident about asking your medical team if you’re not feeling too good after treatment. On the couple of times I needed to, the nurses were very kind and responsive and constantly assured me they would prefer we erred on the side of caution and called them, or that we present to emergency if it’s after hours, to be on the safe side. Here’s some suggestions, in line with @Blossom1961 ”be prepared” I received a care basket from my lovely niece with a few of these items in it … Biotene (you may get mouth ulcers) soft bamboo tooth brushsensitive toothpasteCanesten cream (thrush under the breast was an issue for me)box of Mylanta [the nurses and doctor will dispense the anti nausea prescription “big guns” immediately before and after chemo], Hydralyte or GastralyteGastro-StopMovicol (some people experience constipation whereas I was the opposite)Moo Goo moisturiser Hylo Forte eyedropsTissues or hankies (I never knew what a great job nose hair does until mine went MIA during chemo 😃)Facemasks (it’s advisable to avoid big crowds during the first 6 doses but if you have to be out and about you might be more assured masking up) A notebook to keep a record of how you’re feeling and the information you’re given.

SO sorry to see you joining our select little group here, @Number2 xx We all still remember that day that we were told 'You've got cancer' .... and it is a bit like a cricket bat to the head :( You don't remember much after it! We'll do our best to help you thru this .... it sounds like you've already had your surgery? Or are these results from your biopsy? See if they can send you through a written report on your pathology results - and if you've been assigned a Breast Care Nurse, you can ask her all the questions ... but feel free to put stuff here & those with similar results will be able to help you understand it all, in plain English. If you feel a tad overwhelmed, please consider calling our Helpline to have a chat with a sympathetic person xx. 1800 500 258 - Mon-Fri, 9-5. Just talking to someone should help calm the nerves & prepare for the 'next step'.Check out this thread for lots of 'general' info about the forum - including some other threads that may be helpful to you. Some 'off topic' threads may give you a bit of a giggle, or if you are into art & craft, pets or gardens, you can show off your bits there xx We have lots of informative threads too .... and some 'tick sheets' down the bottom that may also help you self assess your mental & physical health - that you can print off & take with you to your appointments - sometimes it is easier to give them the 'ticked sheet' than to actually talk about it, when it is all so 'fresh' .... it does get easier, with time tho xx https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latesttake care, remember to take it just one day at a time, one hour, if necessary .... try not to get ahead of yourself with the 'what ifs' ..... and definitely stay away from Dr Google. A lot of info there is just plain outdated, or not relevant to your own diagnosis xx. Whack up any question that you have, here & we'll do our best to give you an honest answer .. as we've 'been there' and 'done that' .... and understand what you are going thru just now.Wishing you all the best xx

Good morning @Number2 that’s progress 🌸🌷I really hope Friday goes well for you when you meet with your surgeon. Their recommendation and guidance at this first interview usually gives us an initial idea of the treatment plan. From the information you have you’ll see the next steps can be really variable, it all depends on your specific diagnosis, and your particular situation.Some people have surgery straight away, whereas in my case surgery was 6 months after my diagnosis. Because of the particular characteristics of my case the usual approach was to have chemotherapy first, before surgery and, if needed, a bit more afterwards. Will be thinking of you on Friday. 🌻☺️

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53 Replies

arpie
Member
1 year ago
Wow, that is unusual @Number2 tho I am sure we have more members who are only Her2+ ...

There isn't a dedicated Her2+ group, but as @Tri says, definitely join the Triple Positive group & whack up any questions you have xx. There may be others there that are only Her2+.

take care xx
Tri
Member
1 year ago
Hi @Number2 I don’t think there is a HER2 positive group but perhaps you can join the Triple Positive group - you might find discussions about the HER2 targetted chemo and immunotherapy of value to you 😊🌻
Number2
Member
1 year ago
Thanks @arpie is there a Her2 positive group? Im negative for the other receptors
arpie
Member
1 year ago
Did the rash clear up? I hope so. Probably just the heat?

All the best for you meetings @Number2 ... take someone with you if you can as a 2nd set of ears - and also record the meeting too on your phone, so you can go over it again later, as it is difficult to remember everything that is said xx

All the best for the port insertion too - that will make the chemo a lot easier (make sure they give you some numbing cream to put onto the skin before you arrive at Oncology, before the needle insertion xx)

You may like to join the Triple Positive Group, where you can discuss all things TNBC in total privacy xx
https://onlinenetwork.bcna.org.au/group/31-triple-positive-breast-cancer-tpbc

take care xx
Tri
Member
1 year ago
good morning @Number2 in beautiful Townsville. It must feel a bit more settled to have a plan. For me having a port was a good thing - no need for the nurses to struggle to find a vein for the IV drip.
Hope what you’ve heard so far is giving you a bit more insight into how 2025 could look for you. 🌸🌻🌺
Number2
Member
1 year ago
Well had a busy time but glad things are moving along. Oncology had not seen a biopsy result of my type so needed to consult outside of Townsville as there is noone here experienced enough to know whether to class me as Her2 positive or negative ☹️. They have decided after consultation with others to class me as Her2 positive. Orders are in for port insertion and chemo to start within the next week or 2. Off to see surgeon and dr this morning to discuss results of the last week of tests.
Number2
Member
1 year ago
Have just noticed I have a small rash on the underside of both breasts, should I be concerned? Maybe its from the heat?
Tri
Member
1 year ago
Well done @Number2 that’s all progress- I had a little fortune cookie message on my desktop at work that used to motivate me during some big projects “the journey of a thousand steps begins with a single step” - every ‘little’ thing counts!
Number2
Member
1 year ago
PET done, MRI done, Heart scans done. Waiting on appt to meet with oncologist and have scout put into tumour, supposed to be done before I meet again with Breast Surgeon and dr on Friday the 13 th 😳
Tri
Member
1 year ago
Haha 😆 @Number2 you’re bringing your sense of humour to this - I salute you 🫡 that’s a wonderful attribute to have in the kit bag!!

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