Newly diagnosed and need support

Liz27 Member Posts: 3
edited January 2021 in Newly diagnosed
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
    strongtogether Member Posts: 167
    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
    Mazbeth Member Posts: 199
    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
  • MicheleR
    MicheleR Member Posts: 343
    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.  

  • sooziqu
    sooziqu Member Posts: 37
    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.