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Brandrew10's avatar
Brandrew10
Member
5 months ago

Advice please

Hi, I am a 36 year old mother of 4. 
I’ve recently had a breast MRI after chronic breast pain behind nipple. It returned a cat 3 for ILC. The breast surgeon recommended to wait 3 months, rescan then if results are consistent or increasing I will be referred for a MRI led biopsy. 
My question is around second opinions and when to be concerned. I know in myself that this breast has been symptomatic of something for so long now, with slight increase of volume, liquid coming out when expressed and the outer perimeter of my nipple is pulling to one side. 
When are you too young to be taken seriously? And when do you insist on further indication? Is this typical of ILC? 

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  • Tri's avatar
    Tri
    Member
    5 months ago
    hi @Brandrew10 this must be a very challenging time so sending you lots of positive vibes.
     If it were me I would also chat with my GP too and I agree with comments above.
    My breast cancer type was ILC and I agree with @arpie recommendations that ILC warrants further inquiry; it’s not as common a breast cancer type (as IDC) so worth checking the recommendation you received has been made to you by a specialist who is up with the latest on options for treatment of ILC. 
    That reinforces the recommendation that it’s worth checking if the surgeon you saw specialises in breasts (or not). 
    I would also ask the GP to refer you to an oncologist (who treats breast cancer) to seek their advice, as this might help inform your decision on how and when to proceed. I know it helped me.
    This can feel like a very disempowering and unwelcome phase and now, looking back, I think being given an opportunity to ask a range of different specialists about the treatment, and the opportunity to consider their perspective, really helped me fully come to terms with my diagnosis and to accept the recommended course of treatment and feel confident in it. A bit more information helped me understand why the approach and choices we ultimately made were sound options. 
    Sending you lots of positive energy as you navigate this phase. 🌸🌷
  • arpie's avatar
    arpie
    Member
    5 months ago
    So sorry to see you join us here @Brandrew10 - I agree with @Cath62.  

    Definitely chat with your GP about a 2nd opinion and ask for the biopsy to be done asap.  It is VERY important that you have faith (and a good relationship) with your surgeon - and right now, that 'faith' appears to be absent.  I bet if they knew that THEY had a cancer in them, they wouldn't be waiting 3 months for another 'check up' without having anything done!  Getting a biopsy is the only way to definitely confirm the diagnosis.  grrrr 

    ILC is a tricky one as it doesn't always show as a lump, so well done on noticing the signs & getting checked out - ILC is more like 'strands' and is much more difficult to see than the other forms of breast cancer & is often missed in mammograms, specially if you have dense breast tissue (ask them about that too!)
    We have a private ILC Group, if you'd like to join where you can raise any question, in private.
    https://onlinenetwork.bcna.org.au/group/23-invasive-lobular-cancer-ilc

    Is your 'current' surgeon a specialised breast cancer surgeon - or are they just a 'General Surgeon' who does breast cancer surgery?  There is a BIG difference. Are they local or did you go to Rockhampton?  I believe you would have more choices and more likely to have a specialist breast cancer surgeon if you were able to go to a bigger city.  

    Below is a pamphlet on all the 'Patient Assist Travel' schemes for each state in Australia to assist you getting to appointments.  xx  You will be subsidised for both fuel and accommodation - but you will need your GP (and/or) specialist to sign the documents re every visit requiring (in Qld) 50k or more travel (each way) to get to your appointments/surgery.

    Have you been assigned a Breast Care Nurse yet? If not, You can jump onto the McGrath Foundation site & go to your area & see who is available ..... contact them & you should be able to hook up with one xx  THEY should advocate for you regarding this and it will take some of the pressure off yourself.  There is one in Emerald, but she is only there on a Wed.  There is one in Rockhampton, who is there, Mon-Thurs.
    https://www.mcgrathfoundation.com.au/get-support/find-a-nurse/

    We also have a group for those living in regional or remote areas, where we share tips too.
    https://onlinenetwork.bcna.org.au/group/28-living-in-regional-rural-and-remote-areas

    take care - take lots of deep breaths.  With Christmas approaching, things will be getting hectic everywhere.  My own breast cancer story started in Oct with a 'discrepancy' identified by my GP (after clear Mammogram just months earlier) - then I had another Mammogram and ultrasound that suggested I have a biopsy which wasn't done til after Boxing Day - and I got my ILC diagnosis on Jan 5 ..... but all the surgeons were still on Xmas Holidays.  I was lucky to see a really good one in Sydney & had my surgery 2 days later, in Mid Jan.  

    If you feel a tad overwhelmed, on Monday, give out helpline a call on 1800 500 258 (Mon-Fri, 9-5) to have a private chat re your concerns. xx. 

    Take care
  • Cath62's avatar
    Cath62
    Member
    5 months ago
    Hi @Brandrew10, i would have a chat to your GP. It is always ok to ask for another opinion at any time. Trust your instincts.

     Alternatively you could say you want that biopsy now and tell the surgeon you don't want to wait another 3 months.

    If you in the public system complain about having to wait and the anxiety this waiting is causing you. 

    I didn't not have ILC so can't advise on the symptoms not i know it can be a bit tricky. 

    It is hard advocating for yourself. Do you have someone who goes to these appointments with you?  If you do i would be also getting them to help you push that surgeon or, talk to the gp about how you don't want to wait 3 months and want that biopsy now. Best wishes to you.