Ann58
3 hours agoMember
floundering
Hey everyone Im new here and just found out I have invasive lobular carcinoma grade 2. I’m in shock after a whirlwind 2 weeks of tests. Today it’s hit me hard. I’m 68. I’m now taking Letrzole and...
Hi Ann58, I am so sorry to see you joining us here.
A BC diagnosis is a real rollercoaster of emotions - and it really mucks with your brain too xx. Being weepy is very normal (it happens to most of us) as is getting angry, confused and everything in between. xx Not sleeping is a very common side effect - talk to your GP about this. I hope that your husband and family are supportive of you - receiving a BC diagnosis is a bit like having a cricket bat hit to your head. :(
Whack up ANY question that you may have here - as others will jump on too & add replies xx
Remember that 'Cancer' is just a 'word' - NOT a 'sentence'! Make sure you take a trusted friend or relative WITH YOU to ALL your early appointments, up to and following your surgery - and with your Onc etc. Also consider recording the appts as well - as it is all very difficult to remember what's been said at the time. You can go over it again afterwards if you need x. Charlotte covers this topic in her first podcast below - information overload!!
I was diagnosed with ILC (Invasive Lobular) like you - nearly 9 years ago .... and had lumpectomy, followed by radiation and then hormone suppressing meds for 7 years. I was lucky & bypassed having chemo!
We have a 'private group' for those with Lobular Cancer - feel free to join it. We put up as much 'new info' that we can find on it - as it is a particularly 'tricky' BC - as it hides easier than other BCs. You can join here:
Group: Invasive Lobular Cancer (ILC) | BCNA Online Network
Are you receiving help for your CPTSD? Check in with your BC team about it too - make sure your BC team knows of their importance to your treatment as well xx
They usually take & examine the 'sentinel nodes' (the ones that the BC may 'drain to') just to make sure nothing untoward is going on xx. So that is 100% normal to have that done.
Moomincorn has given some wonderful advice xx As well as ringing the Helpline on 1800 500 258 (Mon-Fri, 9-5) consider checking out Dr Charlotte Tottman's podcasts "You don't know until you do''. She was diagnosed herself 5+ years ago & had a double mastectomy, choosing to remain flat. She's been helping women with BC for many years - so was quite surprised with her own reactions to her own diagnosis and treatment - and it wasn't always what she'd been 'advising' her patients previously. She is VERY easy to listen to - as she has had a LIVED experience of BC, surgery and other treatments, and she now has much better understanding of what we 'go thru'!(the first episode of Series 1 is here - then continue on with the other episodes as well.):
https://soundcloud.com/bcna/what-you-dont-know-until-you-do-with-dr-charlotte-tottman-episode-1-d-day-diagnosis-shock?in=bcna/sets/what-you-dont-know-until-you
Also, check out this thread too, that has a wealth of information on the forum, what to take to hospital and many more tips and important 'stuff'.
A big welcome to all New Online Network Members ..... | BCNA Online Network
Take care, look after yourself - try & keep as busy as you can (even cooking some meals & freezing them for when you get home after surgery - so you don't have to worry about cooking!)
Thankyou!
yes I have made an appointment with my trauma therapist for Friday (I also have ptsd from previous cancer 20years ago / cervical), so I’m triggered.
You’ve given me some great ideas and advice. Much appreciated. 🫶🏻