ER/PR+ HER2- invasive lobular

I am so sorry to see you joining us here, PamQld​ (in the one group you never thought you'd be joining!)  You've found the right spot here tho, for support & info from those who've 'been there, done that'! So hopefully we'll be able to smooth the way for your own story.  Whack up ANY question - remember there are NO dumb questions!!!  Make sure you take a trusted friend or family member with you to your appointments, as a 'backup set of ears', as it is difficult remembering everything that is said.  Also, consider recording your sessions on your phone, so you can go over it again later, for the same reason. 😉

We have a private ILC group that you may like to join and also the Breast Reconstruction group as well, where you can place any questions in total privacy.   The ILC group (Group: Invasive Lobular Cancer (ILC) | BCNA Online Network) tries to keep up on all 'new things' that are ILC related - and the Breast Reconstruction group (Group: Choosing breast reconstruction | BCNA Online Network) will be able to give you tips & tricks, depending on what sort of reconstruction you go for.  If you apply to join up asap, as the Mods will be taking a break from the end of next week, til the end of the first week in Jan ... so you can read up on stuff & ask questions, as needed xx

Mine was ILC (Invasive Lobular Cancer) which is considered the 'sneaky one' as it doesn't show as a lump - more like strands of spaghetti, so is often more difficult to detect - I was lucky to only have the one lumpectomy, rads & tablets .... and have recently finished with the tabs now!

As you progress thru your appointments/surgeries ... let us know how you are going, by continuing to reply to this post ... it is a good way of 'keeping a diary' of everything you're going thru, in the one spot!!  I look back on my original post too (up til I started the hormone suppression) and am amazed at the wonderful support afforded to me, from BCNA members xx

This diagnosis can really muck with your brain too - so if you feel sad, angry, distressed - that is absolutely 100% NORMAL!  But you don't have to 'do it' on your own!  .... ask your GP (or your treating team) for a referral to see a counsellor .... or listen to Charlotte Tottman's podcast (link below).  You can also ring our Helpline on 1800 500 258 for a confidential one-on-one chat xx    Try not to get ‘ahead of yourself’ with the ‘what ifs’ ….. as they may never happen - and going down that rabbit hole (specially if using Dr Google) will REALLY muck with your brain  :(  A lot of info on Google doesn’t relate to your diagnosis or is out of date - so put any questions you have, to your medical team (or here!) xx   Take it one day at a time, one hour, if needed ..... but keep trying to do 'stuff you love' too .... so you have good 'down time' as well!  I treated myself to a holiday on Norfolk Island after all my active treatment ..... as a 'Well Done YOU' for going thru all that stuff - as a reward!!!

Charlotte Tottman  is a BC specialist counsellor who was diagnosed herself, also had a double mastectomy, so knows EXACTLY what we've all been thru, both emotionally and physically!  Her reaction to her own diagnosis was also quite different to what she 'thought' it might be, given that she'd been counseling women's reactions for some years before, so thought she 'new' what to expect!  She is VERY easy to listen to, too xx
http://www.drcharlottetottman.com.au/my-podcast.html. 

Raelene Boyle's video is also well worth watching! 
https://www.bcna.org.au/resource-hub/podcasts/upfront-about-breast-cancer/upfront-about-breast-cancer/episode-21-raelene-boyle-on-pulling-herself-out-of-the-darkness/

There is HEAPS of info in the link below to help you navigate the blog and also some tools to evaluate your own physical and mental recovery thru your ongoing treatment! xx.

https://onlinenetwork.bcna.org.au/discussions/general-discussion/a-big-welcome-to-all-new-online-network-members-/222737

Take care & all the best for your surgery & ongoing treatment xx

Hi PamQld​ , thank you for sharing this and I'm so sorry about your experience - it takes a lot of courage to process all of this while caring for your little one. Waiting for genetic testing results can feel like another layer of uncertainty, but those results will give you more clarity for your decision. Whatever you choose, there’s no “wrong” choice, only the one that feels right for you and your future. Please do reach out to this community whenever you need, keep us updated on your progress and call our Helpline when you need an extra bit of support on 1800 500 258 ❤️

Hi, I recently have just had the same diagnosis as you at 48 yrs old with a family history also. I have some positive lymph nodes as well and am heading for surgery this week. I decided upon bilateral breast conserving surgery with the axillary lymph nodes clearance. It’s such a hard decision to make and I just wanted to say I am thinking of you throughout your journey 

HiPamQld​ 

The decision to have a double mastectomy is a very personal one but that is the decision I made even though I had no family history of breast cancer.

I had DIEP reconstruction using my tummy fat - big surgery and recovery but I don’t regret it.

My story with photos is on the choosing breast reconstruction private group , there are many other stories on there and photos I found very helpful , so ask to join that group if you are thinking along those lines.

Best wishes and feel free to post on here with any questions or just a vent as we all “ get it” even though our experiences will all be a little different.