Feeling lost

I am so sorry to see you joining our select little group ND87​   …. everyone still remembers the shock of hearing the ‘diagnosis:  “You've got breast cancer” ..... Causing sadness, distress and even anger.  It really mucks with your brain, sometimes even more than your body!  It is highly stressful & upsetting in the early days of diagnosis - so if you feel a bit overwhelmed by it all, give the Helpline a bell on 1800 500 258 for a confidential chat with one of the Mods xx.

I am also sorry your first interaction with your BC Nurse wasn't helpful.  Are you in a city area, where you might be able to find a different one?

Definitely join the Triple Positive group, where you can read previous posts & chat with those on the same path xx

Make sure you take a trusted friend or relative with you to your meetings from now on & also consider recording them too, on your phone xx. It is almost impossible to remember everything that is said & this way you can go back over it in the quiet of your home & take notes. xx

Also, Consider listening to Charlotte Tottman's Podcasts on her own experience with BC - as she explains it all very well xx  She is a specialist breast cancer Counsellor who had a double mastectomy following her own diagnosis, choosing to stay flat. She was surprised at her own reaction to the news/surgery/treatment, as she'd been counseling others for many years & thought she 'knew it all'!   She has done 2 ‘podcast seasons' ... check out the 1st season, right from her diagnosis onwards and how she coped, then move on to the 2nd season. She is very easy to listen to & you'll probably recognise your own reactions in many of the podcasts. 

http://www.drcharlottetottman.com.au/my-podcast.html

Check out this thread too - there is a lot of general info on the forum & what to take with you to hospital - even 'tick sheets' that you can fill in to take with you to your appointments on your mental & physical health .... this info has been gleaned from many of our members over the years ... I hope it helps you xx
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latest

take care & all the best

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. 

I'm sorry to hear about your recent news and experience. You've had a lot thrown at you in a short amount of time, and it sounds like you've had a disappointing experience with your breast care nurse. 

I was diagnosed end of September 2025, started chemo the following week for 4 months, had a month break before a double mastectomy and reconstruction. Since then I've had ovaries removed and have some revision surgery and carpal tunnel correction coming up. 

I'm on anastrazole as a lot of us are, and was on tamaxifon before ovary removal.

In my experience I had access to a couple of breast care nurses, maybe you might be able to connect with a different one through your hospital or talk to someone at BCNA? 

Everyone finds treatment different. The advice I was given which helped was to share your side effects with your treating team, there's usually something they can do to help, to prioritise rest (that was absolutely key for me, no rest days were generally not pretty for anyone!) and take care of nutrition/hydration as best you can. 

You've got this, once you start treatment you will find your "rhythm" and can start ticking off the rounds until you are done. 

Other random stuff that helped me:

• Dedicated chemo bag (keep a charger, a book, drs notes etc in there for each appointment)
• Lots of water... Lots! Sodastream helped me there. 
• As much rest as you can get before you get overtired
• Walking as much as you can manage during chemo 
• Strong flavour herbal tea for my weird taste buds changes
• Heat packs for chemo pains. 

I wish you all the best and really hope you find some support through BCNA or an alternative breast care nurse. 

X