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kiwisandy

I was diagnosed a week ago with triple positive Grade 2-3 Lobular breast cancer. Finally told my family and kids which was one of the hardest things. The information and scans, biopsies, tests, clip implants, chemo port op… it’s such a lot to take on so quickly. Hoping this will settle down once scan results are in and treatment starts.

arpie

So sorry to see you join the bus, @kiwisandy xx  It really is an emotional rollercoaster - with the highs & the lows & not many straight bits ... but everything they've lined up for you is to get the best result for you too xx

Whack up ANY question you have (there are no dumb questions!). WE were all 'newbies' once - so we know how it feels.  We should be able to help you with most queries .... I seriously reckon this disease mucks with our BRAIN even more than our bodies, as our emotions lurch from anger, to sadness, fear to hope and beyond ...  You may be surprised who (in your group of friends) actually step up to the plate & who wander off .... sometimes it is a real surprise!  You may lose a few but the ones that stick around are well worth keeping xx 

We have a private Triple Positive Group that you may like to join, as well as a private Invasive Lobular Group  .... there, you can ask any question & check up on other posts, in total privacy - as only members can see the posts.  Most of the other posts on BCNA are open to the general public, hence why we don't use our 'real names' .... 

We also have a Regional, Rural & Remote Group too, as living in Armidale, you may have big accommodation & fuel expenses to cover as well as getting to see specialists outside our area - so joining that group will give you some tips on getting reimbursed from IPTAAS (Isolate Patients Transport and Accommodation Scheme) within a year of the appointment.   You've got the triple whammy!   
All the groups can be access here:
https://onlinenetwork.bcna.org.au/groups

Telling the family & Kids would have been traumatic for all of you xx. Lean on them for support if you can - and with friends, you might want to let them know that you'll 'let them know' how you are going on a regular basis (via email or messenger etc) as there may be some days where you just don't want to answer the phone xx  And saying the same stuff over & over can wear you down a bit xx.   If your buddies offer to help in any way (looking after your kids, cooking meals etc, accept with pleasure, as it will help THEM to help YOU xx)

Feel free to Jump onto this thread to read a bit about the group in general - as it covers a lot of stuff you may find handy ... ideas on what to take to hospital for surgery .... and what to ask your team afterwards for your checkups ....   We have posts about our gardens & our pets, art & craft & we even have a couple of 'funny posts', to give us a giggle - I reckon it is important to still be able to laugh at stuff xx.
There are even 'tick sheets' that you can print off down the bottom, to keep a check on your mental and physical health too!    Sometimes it is easier to just give that to your specialist, rather than talking about it ... with all the relevant bits 'ticked off'!   If you'd like to talk to someone at any time (Mon-Fri) just give our helpline a call on 1800 500 258 in work hours (9am-5pm).
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latest

take care & wishing you and the family all the best xx

(I lived in NZ for 15 years too!  I loved it!)

Tri

Hi @kiwisandy sending you positive thoughts as you go through the whirlwind that precedes treatment. 

@arpie post there’s amazing kindness and support on this network and it’s really useful to have access to the experience of so many people who are managing their way through.
I was a bit late coming to the network but have found a lot of useful information, about lobular cancer and the different treatment regimes for different subtypes of breast cancer. I joined the Triple Positive group and the Invasive Lobular group. We are a small band!
The treatment phase will settle you into a rhythm and I’ve noticed a few tips that some of the members have posted like: write down the discussions you have about what treatment protocol you’ll follow and if you can get copies of your pathology reports for your safekeeping it’s useful later.
In view of you having invasive lobular cancer (ILC) I would ask your surgeon or oncologist if the results say you have dense breasts, or not. 

There’s a great ABC story about ILC that Arpie posted https://m.youtube.com/watch?v=E8QzL2uDNv8
There are some threads up here already about preparing for chemo and in the Triple Positive Group there’s a bit of a discussion about the HER2 targeted drug treatment and how people have found it. 

Getting a port was a good thing for me- mine went into the inside of my right arm just below the bicep. 
I hope you’re travelling well, it is incredibly humbling how caring our family, friends and colleagues are and I found that very comforting.
I completed my treatment in April and looking back I can only say it was a team effort. Sending you big virtual hugs and positive vibes 🌻🌼🌸

kiwisandy

@arpie

thanks so much for the information and heart warming words. It’s comforting to not feel alone on this journey which so many others have navigated and came out the other side ok.

there is so much to read about this new cancer world. I’m not even sure of questions I need to ask but I guess we figure that out as we go. 

Ive heard some friends disappear when this happens. I have a great small group of friends, family and work colleagues for support.

Music helps in the mornings, and meditation in the evenings to calm my mind from the panic I often feel. My dog is like therapy and partner is fantastic at making me laugh like we used to before being diagnosed. I hope that continues.

thanks again for the encouragement and group advice. I’ll be looking into it all. xxx

kiwisandy

@Tri

thanks so much for the kind words and help steering me in the right direction for the info I may need. 

From reading posts, everyone seems to go through the same emotional and unstable journey getting to where their treatment starts after diagnosis.

such a surreal experience so far, I’m looking forward to getting this show on the road and back to good health. A mastectomy doesn’t worry me much but loosing my hair will gut me. There’s a great wig library in town but mentally I’ll be ruined for a bit, vanity raises its head. Back to the meditation to keep me calm.

Im blessed to find this group of caring women who are happy to share, and maybe make other ladies days a little easier knowing they’re not alone. Thankyou xx

Suki

Hi @kiwisandy

Welcome to the forum - you will get heaps of support from here. 

I was diagnosed with grade 2-3 triple positive invasive ductal in Dec 2023 (so close, but not quite the same as you). While triple positive may be a bit more aggressive, it is highly treatable.  You've got this.

There are heaps of tests at the start, but it does calm down and you will probably start to feel less stressed once you have a treatment plan in place.

As Tri mentioned, you can join the Triple Positive private group.

kiwisandy

Hi Suki

thanks so much for taking the time to calm some of my fears. its so appreciated. It’s sad but great to know we aren’t alone on this journey.

I think the hardest part atm is waiting for test results to see if it has spread and treatment to begin either way. Too impatient lol.

you’re right though, I got this

Suki

@kiwisandy - how are you going this week?

kiwisandy

Hi @Suki

This has been my crazy week prepping for treatment. 

PET body scan in Coffs Harbour Monday, Radiation Oncology meet and greet Tuesday, had a CT to check my brain today, found something so had to have an MRI before having the clips inserted then a mammogram. By the end of those four hours I was exhausted. Work tomorrow (yay normal!) then portacath op on Friday in Tamworth… and need to meet my Chemo Onc somewhere in between so chemo can begin early next week *sigh* at least sleep comes very easily 😊 I hope it settles soon, next drama will be cutting my long hair… I may wait until after the weekend for that.

thanks so much for checking in

Suki

@kiwisandy

Busy times!  Good on you for getting through the bulk of it.  I may be reading your post incorrectly, but did you have a clip inserted in your brain?

Which chemo protocol are you starting?  I had TCHP and didn't cold cap for my hair, but you might want to consider it because the docetaxel (the "T - taxel" in the TCHP) can cause alopecia.  My hair is growing back now, but is a bit thinner on top - not sure yet if it will fully thicken up, although the thinning could also be caused by the anti-hormone treatment I am on though.

Sounds a bit weird, but once I was stuck sitting quietly in the chemo chair, I could just chill out and it was a nice change from the craziness of tests, appointments etc. 

kiwisandy

@Suki

I had clips put in my lymph node and Breast. There's another small (?) issue with my brain, not cancer related which will get sorted after treatment is done.

Im still waiting for my Onc appointment so aren’t sure of drugs they’ll use yet. If I can find a natural looking wig that suits, the pressure will be off a bit. Chemo during winter would be easier with hats and beanies etc.

one day at a time, that’s about all I can do atm, but that’s ok. I look forward to sitting still having chemo and relaxing as you said.

arpie

Wishing you all the best, @kiwisandy xx. You're being kept busy, for sure xx

take care

kiwisandy

@arpie

Thankyou, it’s so nice to have support and kind words from the ladies on here. The Journey is easier when not alone xx

Tri

Good wishes coming to you @kiwisandy and @Suki
Sounds like a hectic time having all the tests and getting the clips (no cakewalk!) but it’s good to know it’s all working towards getting your treatment underway. Glad your port a cath is going in from the start. 

@kiwisandy I borrowed a wig from my regional hospital’s wig library, then bought one, though I ended up mostly wearing scarves, beanies and hats.