Newly diagnosed and need support

Hi Liz27,

You have the right to feel all your emotions. We are emotional beings, complex at times and BC makes it even more challenging. Reading your post gave me a sense that you have what it takes to get through it. You are also at the right place to share what is bothering you. This online community is all about support, kindness and willingness to share experiences to help alleviate concerns and worries. Like you, it also took me a couple of months to decide to join in and participate because I was too hesitant. I feel for you, it is not easy being diagnosed with BC. I was diagnosed August 2019, had left breast mastectomy, reconstruction and currently on hormone therapy. I have learned to adjust as I go and there is plenty more for me to learn. I still have my fears and doubts but when I pull myself back to the present it helps me bring things to perspective.  The struggle is real but your inner strength is MORE real.

Hi @Liz27,

I was diagnosed with lobular cancer in my right breast in November 2020.  I had a benign lump in my left breast and all the tests you've had done as well.  I opted for a double mastectomy and diep flap reconstruction at the same time.  So I had the benefit of what was essentially a tummy tuck and woke up with two nice looking boobies.  I am now just over 4 weeks post surgery and it's gone quickly.  From diagnosis to surgery was only a month to the day because there was a cancellation just before Christmas and I grabbed it.  I'm glad too.  I didn't want more time to worry, overthink, search the internet and generally exhaust myself with options and what ifs.  Don't be me wrong, it's good to be informed and know what your options are.  I decided I didn't want to worry about my other breast for another 5 years and potentially go through surgery all over again but they'd have to take muscle from my back or thigh to rebuild the right breast.  This way I had symmetry and the worry is gone.

I'm getting along really well since surgery and back to driving and more normal activities.  I'm very glad I got things sorted quick smart.  I'm happy to chat to your further about the op and what it's like afterwards if you would like to pm me.

All the best for your surgery.  Be gentle with yourself, and you are allowed to feel any way you want to.

Sooz

Hi @Liz27,

I was diagnosed with ILC in June 2020. Sorry to hear you have it too. 

Ive had a mastectomy and just finished chemo. I still have some treatments to go but im not feeling too bad.

I think as ive gone along ive digested it more. In the beginning it is very scary. I cried a lot whenever i thought about my kids despite being told i had a good prognosis. 

I would try not to read Dr Google too much. The ladies here are much better at giving good balanced view.  

Michele

@Liz27 you bet you can!! 💪🏻💪🏻😁😘😘

thank you all so much for your replies, I’m so grateful to talk with women who’ve experienced all of this awfulness and come out the other side. You’re a strong bunch and I hope I can harness the same in time ❤️❤️

Hi @Liz27 ...
 welcome to the club that no one really wants to join!  :(  As the others have said so eloquently, chuck up any question that you may have and someone who has experienced it, will jump on with an educated reply.  We all know the absolute turmoil that comes with the bc diagnosis - and the distress.  

Accept any any assistance that is offered ... be it mowing the lawn or frozen meals .... you will be limited in some things post surgery (eg hanging out the washing etc ..... ). Many people don’t know what to say but may show their support in other ways xx

My ILC surgery was 3 years ago, mid January (first cab off the rank after the surgeon came back from Hols) - some months after finding the lump in Oct! Things move slowly in regional areas - so I know how stuffed up Xmas/New Year is after the diagnosis!  I was lucky tho and didn’t have to do chemo .... just lumpectomy and rads and TABs .....

There is an ILC Group that you may like to join, plus the Reconstruction Group as well? You can raise personal matters there, as only members can see the posts.

The waiting and going from here to there then back again, really sucks as you want it gone NOW ....  but once you have your surgery, you will feel SO much better, and even more so after your pathology results and get your final game plan.  

Definitely try not to overthink it, and DON’T use Dr Google, As EVERY BC case is different and a lot of info on the web is out of date and just plain irrelevant. 

Make sure you take someone with you to appts for both support and a 2nd set of ears. Also consider record your meetings on your phone for future reference.  It is so easy to miss what is being said, whilst pondering the previous point!

That’s terrific that you have good family support and you’ve met your breast care nurse already and you get on well.  The Cancer Council has heaps of booklets available on all things ‘cancer’, including one on kids and cancer ..
https://www.cancer.org.au/assets/pdf/talking-to-kids-about-cancer-a-guide-for-people-with-cancer-their-families-and-friends

Personally I found that it mucked with my BRAIN more than anything else!  And sometimes that is very hard to control, as it has a mind of its own! I’ve found that Keeping BUSY doing things you normally do, is the secret .... get back into your hobbies or take up a new one - even more so now with Covid as we can’t get together with buddies as readily as before.  

As the girls have said, It is totally 100% normal to skip between anger, denial, sadness - but if your find the sadness is overwhelming you, please seek professional help! Your GP may be able to refer you ... or your local Breast Cancer Centre May have help there .... where you are more likely to find a bc specific psychologist.  Just talking about it openly and sharing it with a professional should be able to give you coping mechanisms

Try & keep your sense of humour 'up there' - we have a really good 'funnies page' (called Friday Funnies, but we add them every day!!)  Just click on the link to add pics and posts ... 
https://onlinenetwork.bcna.org.au/discussion/19116/friday-funnies#latest
If you are into arts & crafts, we have a 'Creative Corner' 
https://onlinenetwork.bcna.org.au/discussion/14979/creative-corner#latest
 and if into your garden, a Gardening post as well!! 
https://onlinenetwork.bcna.org.au/discussion/comment/186078#Comment_186078

We have some posts here on what to take with you to hospital, to make it 'easier' on you.  The small pillows to support your arms when sleeping and in the car are essential for reducing pain. Any knock in the car (specially going over gutters into petrol stations, shops and home) can really jolt and hurt.
https://onlinenetwork.bcna.org.au/discussion/16442/prep-for-surgery/p1

For your annual checkups, some ‘tick sheets’ to help you put your questions together for your medical team - on your mental as well as physical well being. (Click on the documents at the bottom of the first post, not the pics.)
https://onlinenetwork.bcna.org.au/discussion/21973/questions-to-ask-post-surgery-of-yourself-to-your-specialists-tick-sheets-self-assessment#latest

take care, All the best with your ongoing appointments xxx. You can do this xx

Hi @Liz27
Welcome to the network.  You will find so much support here.  Be kind to yourself. Sending hugs.

@liz27 - welcome.  You will get through this.  I was diagnosed with ILC in Dec 2017 just in time for Christmas.  Those first couple of weeks, comprehending what it meant and having the tests and scans were a nightmare of tears and disbelief.  I also had 3 kids, two still in primary school, who knew that my sister had died from this before they were born.  Lumpectomy, mastectomy, chemo and radiation followed over the next 9 months.  I have always told my kids that I would not hide anything from them (but I don't tell them my darkest fears, of course).  I do let them know when I am anxious but also that my anxiety is not necessarily based on reason.  Kids can pick up on things but it's secrets that are scary.  I won't say that everything for them was plain sailing.  Of course it wasn't.  They all struggled at different times and those struggles had to be addressed but on the whole, I am very proud of how we navigated that year.  So, my advice is don't hide things, and don't underestimate their ability to rise to the situation.

You'll probably find that as treatment starts, your mind settles a bit as you have a plan of action but at some time in the process, you may find that you need some counselling.  For me, as for many others, that came towards the end of active treatment.  

Be gentle with yourself.  Your world has been knocked completely off balance.  Use your support network as you need to and don't be afraid to ask for specific help.  A freezer full of meals might not be the best option when you really need help to get a kid to after-school sport.

Take care

Hi @Liz27,
Very good of you to ask for support. I waited about 3-4 months to post, and was madly just reading as much as I could until then to inform myself from those who had already experienced it. Definitely the hardest time for you is now. I often think about those feelings of terror when initially diagnosed, for me around this time last year, and how much they have changed since then. I almost forget sometimes, unless I really focus and then it all comes rushing back, then I wish I hadn’t 😆. As much as I’d love it, I realise it’s impossible to avoid those fears. No matter what others say to you, in the very beginning everything is too new, unfamiliar and frightening for you to be able to see the bigger picture, and that you are definitely going to be ok, especially if you truly want to be. By coming on this forum though, you’re already taking fast steps to overcoming those first feelings of hopelessness and being more confident that things will be fine. Not easy, but fine. 

Thank you so much for your reply, I can’t tell you how much I appreciate it. Wow! Your story sounds so similar to mine. Originally I was told I’d be doing chemo first however it was changed to surgery first at my last appt. I met my breast care nurse just before Christmas, the day before she was going on leave for 3 weeks, she was so lovely and I’m looking forward to her returning so that I can reach out to her.