Newly Diagnosed - story so far

Mez_BCNA

Moderator moved @hays post from activity section to main 'Discussion' section:

hays
Hi all. I am amazed at reading everyones journey on here thus far - the type of thing you don’t realise how common until it affects you personally. I just turned 34, and instead of celebrating, have been dealing with Stage 1, Grade 2 Estrogen and Progesterone receptive Breast Ca. Have had a lumpectomy and sentinel node biopsy and have been fortunate lymph nodes are clear. I have been told, radiation, chemo and hormone suppressant therapy will more than likely be my journey - first appt with Oncology team tomorrow. I am a nurse, and unsure how to be a patient - and to be honest, I am terrified, and knowing too much is awful. I just feel like my world has been turned upside down, and I don’t know how to even move forward. 

AllyJay

Hi there @hays...I'm so sorry you've found yourself on the other side of the bed and now a member of our 'not so special' group. I suppose it's a bit like for a pregnant woman...for a first timer, she's scared because she doesn't know what to expect in labour, and for a second (or more) time mother...she's scared because she knows exactly what she's in for. I won't cover it in pale pink icing...it's no cake walk, but it's manageable. Initially, until a firm plan is sorted out by your medical team, it can be the case that Monday, it's this...and then Tuesday, it's that, but that is what frequently happens. Try to avoid DR Google as a lot of what's on some sites is outdated as are the statistics, and statistics are just that, numbers, and nobody knows which side of the numbers they will fall on. Trust your oncologist...this is their bread and butter and it's a beastie they know well...in all its forms. Other members will hop on with more nuts and bolts advise, but I just wanted to say hello and we in this group understand the way you feel Big (((hug)))..Ally.

arpie

SO sorry to see you join our exclusive little club, @hays ... if you keep updating this thread with your ongoing treatment plans & questions .... it will become a bit of a 'diary' for your active treatment.

Great that you've had your surgery and hopefully going well - you'll be relieved that it is 'out' ....  Where abouts are you, roughly?  We may have members living nearby who may be able to point you to services in your area - or even meet up for a coffee & a chat!  xx

Do you have a trusted friend or family member to go with you to your meetings for support & an extra set of ears?  Consider recording your meetings from now on as it is easy to miss one bit, whilst thinking of what was just said!  grrr  

Being a nurse yourself, may be a tad challenging too, as you know a lot of medical stuff - but this is really specialised ... and even experts who are diagnosed, find it really challenging .... feel free to ring our Helpline on 1800 500 258 (Mon-Fri work hours) to have a chat xx

Have a listen to the Charlotte Tottman podcasts (she is a specialist BC psychologist who was diagnosed  about 5 years ago & had a double mastectomy, remaining flat) as she only realised after her own diagnosis, that it is SO much harder than she thought.    Her podcasts are VERY easy to listen to.  (Click on the block showing LOTS of podcasts (show 22) - and start on No 13, which is the FIRST one of Series One.  
https://soundcloud.com/search?q=charlotte tottman

Also check out this post ... where we cover a heap of 'off topic' subjects like our pets, our gardens, hobbies, art & craft & even some funny posts (god knows we all need a laugh now & then.). There's lots of other stuff to check out too xx
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest

I hope you've got good support from family & friends .... Sometimes, it can be a bit confronting for them & many won't know what to say & some will say nothing (which really hurts.)   Maybe set up a monthly email or blog to 'fill them in' in the one hit - so you don't have to keep repeating yourself all the time (which can just be SO upsetting.)   You may even have to learn how to say 'No' now & then too .... 

take care, be kind to yourself - take each day as it comes, try not to get ahead of yourself - and write down any queries that you want your team to answer at the meeting x

hays

Thank you both so much for all of that information and kind words. I am in Sandringham, Victoria. 
I am so glad it is out - currently doing x2 Egg freeze cycles before I start chemo. Also have genetics involved now as the conversation after chemo is radiation vs mastectomy. I am feeling semi better since there is somewhat a plan - but all the appointments are exhausting. And I have amazing support around me, but sometimes that in itself is exhausting and I am already needing to learn when to pull back, say no and concentrate on just myself. Thank you again - you give me confidence to be able to get through this. 

iserbrown

Being a nurse equals heightened awareness!
As you noted a treatment plan does give a sense of calm as the direction is being set.
We all get it!  No question is silly!  It's an emotional roller-coaster.  We are all here to help you through!
Your Oncologist is a major part of the plan.  I have just gone 9 years, one more to go!
Best wishes