Newly diagnosed and need support

Liz27

Hi all, I’ve been reading here for the past couple of weeks but finally have the courage to reach out and ask for help. I’m really struggling right now. I was diagnosed just before Xmas with lobular breast ca and will be having a mastectomy and left auxiliary clearance  in the next few weeks followed by chemo and probably radiation. I have a large ca in L breast and one node. Have had pet scan which surgeon said looks good but to have bone scan and CT on Friday just to be sure, but she said she’s confident from pet that there is no further spread. I was so relieved to hear that news but now my fear and anxiety is huge again and I’m really not coping well at all. I’m a single mum but have good family support so I don’t know why I’m not coping better, I’m just terrified.  I’ve opted for double mastectomy and meet with my surgeon and the plastics team next Friday, will have expanders put it. The surgery could be as early as the week after next and I to and fro between just wanting it done with to wishing I had more time to get my head around it all. Xmas was so difficult as I didn’t want my young kids to worry, they’re 14 and 7. I told them only a few days ago but I haven’t told my 7yo I’m having double mastectomy, just that I’m having surgery. 

I’m not even sure what I need right now but I’ve seen so much support on other posts I thought it’s really time for me to reach out and ask for the same, and seek some reassurance that it’s all going to be ok 😢

strongtogether

Hey Liz, 
Welcome to our club. 
We are all here to support one another. Please don't ever lose hope, because you can beat this.

Mazbeth

Hi @Liz27, you have come to the right place for lots of support and information. It sounds like you are in good hands and your doctors are being thorough and keeping you informed.
Your story could just about be mine except I joined this group 1 year ago when I was diagnosed with ILC in December 2019. There is never a good time to be diagnosed, but close to Christmas has another layer of challenge that’s for sure. I too took a bit of time to post, I was just terrified, shocked and struggled to make sense of everything that was happening. Take your time and ask as many questions as you need. I had ILC in left breast and I knew from the start that I wanted the bilateral mastectomy - my decision as I had dense breasts etc. I had chemo first (4 x AC, 12 x taxol) which gave me time to think about everything. 
I also had expanders put in and switched to implants in December 2020. Typing this reply almost feels like a letter I could have written to myself 12 months ago.
What you are feeling is very normal and it is normal to experience all different emotions in a day. I enlisted a psychologist who was excellent in helping me to process everything. Whilst I too have a very supportive family, I needed to be able to speak with someone who was emotionally removed from the situation. There is also support available for your children and your breast care nurse may be able to help you with connecting to it. I am a teacher and would definitely recommend making contact with your kids’ schools so that they can offer support as well. I am not sure where you are based, but schools are generally open the week before the kids start back.
I am going to tag @arpie because she is a wealth of information and will also point you to the separate ILC group on this network. 
Try to be gentle and kind to yourself. You have had a huge shock delivered to you and it kind of feels like everything is in a state of flux, but this is the hardest part - the waiting, the tests and the temporary uncertainty. Your medical team is going to come up with a plan and once you start, I think you will feel more secure. I had a fabulous breast care nurse, but I slipped through the cracks a bit because I did chemo first, so I really had to chase it up. I realised what I had been missing because she was really able to talk me through the surgery. 
My surgeon was very supportive of my decision for the BMX. Please make sure you ask your surgeon lots of questions especially if your are at all unsure about having the BMX. 
Now, this is so easy to type, but can be difficult to master - take one day at a time and don’t get too far ahead of yourself. This time will pass and you will get through it and you will be offering support to others who join us. If I can help in any way, just let me know. 12 months ago the fabulous people on here reassured me that I would get through what lay ahead and they were right and I want to pass that onto you -  you are going to be ok. Sending you a hug M x

Liz27

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. 

I am a nurse so I’m familiar with many treatments and side effects but tbh My knowledge of the different types of bc was limited at best, so I’m slowly learning. 

I too have dense breasts and said from my first appt please do a BMX. I have commenced hormone tx, I’m 49. My surgeon is also supportive of my choice for BMX. 

Thank you for the reminder to just take it one day at a time, my mind is always racing forward and that makes me feel so overwhelmed. 

Thank you so much for reaching out, it’s definitely helped me feel less alone through this xx

FLClover

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. 

I’m really glad you have great support from
your family, but don’t wonder why you’re not coping better and terrified. It’s because at the end of the day, you’re the one who has to go through the whole rigmarole of treatment, not them. You’re the one who is slapped in the face by her mortality. You’re the one who has to pretend she is strong when in reality her world feels like it’s crumbling. And your support people are also pretty terrified themselves. Ca tends to make people feel extremely lonely. So don’t feel like you have to be strong for them
and yourself. You are strong and you’ll beat this, but you don’t alway have to feel like it. You can admit you’re terrified and scared shitless and cry because you want to be the one to raise your kids, not anyone else. And you can be angry too. Because you have the right to feel all those things. You’ve just been diagnosed with one of the scariest diseases on earth. It’s treatable, but it’s f**king scary. So tell yourself it’s ok to be scared, don’t chase these feelings away because they’re part of the process. Each stage is different and brings about new feelings and perspectives about it. But you can’t jump the queue, you need to go through each one carefully and try to process what happens when it happens. And it happens quickly, so don’t stress about things not moving. Once this surgery is done they’ll fly. Just make sure to not think too far ahead, focus on the stage you’re in, feel what you need to feel, then move on to the next stage when it’s time. And please, don’t wait for this ‘whole thing’ to be over to enjoy yourself again and have fun. It could take a while, esp with chemo, so try to find pleasure in your days regularly, and treat yourself to things you love, even if they’re small. Your life does not have to stop just because ca decided to butt its extremely unwanted, unwelcome and ugly head in. You rule it, it does not rule you. 

As for the surgery, think about it carefully and ask a million questions if you need to. Make sure you’re really happy with your medical team. You should change them if you’re not happy cos it’s too important, and you’re too important, not to. I had a skin/nipple sparing DMX last year with expanders put in, which I still have. Need to be changed for implants soon. I changed my medical team after first surgery and it was best thing I did. I’m happy with all my decisions so far and feel 100% better than when I was first diagnosed, when I was an absolute mess. I’ve been seeing a psychologist for 6 months who has helped me enormously, so please think about that as they do help a lot. Wishing you all the best and keep in touch. Sorry for very long answer, I’m tired but can’t sleep 🤨😁🍀♥️.
Mon Xx

Sister

@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

Locksley

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

arpie

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

Liz27

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 ❤️❤️

FLClover

@Liz27 you bet you can!! 💪🏻💪🏻😁😘😘

MicheleR

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

sooziqu

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

Jen2019

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.