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Nickii2's avatar
Nickii2
Member
12 months ago

Recently Diagnosed - So Many Questions

Hello ladies 
 After going for normal mammogram, which I believed was completely routine as no lumps or signs etc, I got the call from my GP to come straight in and was told it wasn’t good news. Got in the next day for Ultrasound and Biopsies (1 core and 2 fine needle) and a few days later diagnosed with, at this stage, Stage 2 Invasive Lobular Cancer. I was lucky enough to get into see a breast surgeon the next day, just before the Easter long Weekend.

Unfortunately I didn’t take too many notes during that appointment and definitely have learnt my lesson, poor surgeon is going to be bombarded! Though I did hear that the size of the mass was smallish, it was discovered early, and showing signs of being hormonal. 

My surgeon then sent me off for 2 more core biopsies on the areas where fine needling was done the previous week, and she also booked me in for a breast MRI, both of these were completed last week and then a CT chest and pelvic scan along with a nuclear full body scan, which I have booked in for today.

For some reason the requirement for the full body scan is totally freaking me out, does she think it’s more aggressive or the like than what she is communicating with me? And yes thanks Dr Google 🤦‍♀️. 
Or, which is probably the case, she booked them all in now to cover all bases.

I am seeing in these chats that a lot of people typically have the surgery and then further scans. Is this right? Or are multiple of the same scan happening? I can’t stop thinking about it, and I can’t sleep, it’s doing my head in.
God I’ve rambled on haven’t I 🤦‍♀️. 
  • PrisMay1's avatar
    PrisMay1
    Member
    12 months ago
    Hi there. Sorry you have had this happen to you. Sounds like your surgeon is being super thorough and doing lots of tests before surgery. I had a lobular cancer diagnosed last year that was small and had a PET scan before surgery. Some have it after but I was able to get an appointment first.  Lobular cancer is different from the ductal cancer that most breast cancers are and is treated with a bit more caution. There’s some good information on this site about ILC.  
    Best of luck and let us know how you get on. 
  • Tri's avatar
    Tri
    Member
    12 months ago
    Hi @Nickii2
    so sorry to read about your diagnosis. ❤️🌻🌺In a nutshell not everyone will have surgery first up. I had 6 rounds of chemotherapy first, each one 3 weeks apart. So my diagnosis was in February and my surgery end of July. The good thing is my surgeon could see from the pathology that the chemotherapy was indeed doing its thing to my cancer cells. 
    I was diagnosed with invasive lobular carcinoma (ILC) too, and the other factors that shaped my particular treatment plan were that I was HER2 positive (which is uncommon for ILC) and Oestrogen and Progesterone positive. 
    Also uncommon for ILC, I had a lump. 
    I am going to reshare @arpies post about how ILC shows up differently and requires careful examination and certain types of mammograms (“3D”) for example, this was reported late last year and you might find it interesting. Unless you’re already feeling information “overload”.
    I hope you’re feeling a bit better today and are able to get some rest. It’s a really tough time but hang in there, it sounds like your team are getting all the information they need to help you. 

  • Tri's avatar
    Tri
    Member
    12 months ago
    Hi @Nickii2 here’s two more tips: find out if you have what’s known as dense breasts. This helps with future check ups, and you can find out whilst they’re looking at your images. 
    Secondly there’s an invasive lobular cancer group with specific resources on the BCNA online platform and it might be interesting for you to join it. 
  • Afraser's avatar
    Afraser
    Member
    12 months ago
    @Nickii2

    I had surgery first and a full body scan, but that was over 11 years ago and there seems to be a greater likelihood of chemo
    first and then surgery now. Your doctor is being thorough, best to know anything there is to know at the outset. Make a list of questions for your surgeon and, however tempted, lay off Dr Google! Cancer isn’t one single thing, it’s complex which is why all the tests, scans and so forth. Early is good, thorough is better. Deep breaths, it will all become a little clearer bit by bit. Just give yourself time. Best wishes.