Invasive lobular grade 2 breast ca

Hi all, 1st post on here. Was diagnosed on 15th January with 15mm er & pr positive her neg. Put straight onto Letrozole which I'm fine on so far. Lumpectomy booked for 2 weeks then radio. Kinda got my head around it but had contrast MRI 2 days ago as my breast is very dense so have been told other lesions could be behind it or could be bigger than they thought in which case treatment plan will change.  Could be up to 10 days wait & finding it so difficult not to catastrophise. Any experience very welcome xx

  • Hi Mandalou sorry you find yourself on here.   I had Stage 3 Lobular breast cancer twelve years ago.  Lobular cancer is very hard to detect on normal mammograms etc.  I also had to have MRI .  I had lumpectomy then chemo and then radio therapy.  I think they will only know the treatment plan once they have done the lumpectomy and checked the lymph nodes in the armpit.  It is a hard and scary journey and the waiting room is the worst, which is where you are at moment.  I found it easier once I had the treatment plan.  There is so much support on this forum and the Macmillen forum has one just for breast cancer.  I am here if you want to chat.

    Lee x

  • Thanks so much for your reply & hope you are OK now x Yes I think once I know treatment plan it will be easier.  Yes it is very hard to detect & was only picked up as had a large lump which I suspected was a cyst but due to family history got it checked & confirmed it was a cyst but found this incidentally which I'm grateful for.

    They say no chemo at the moment but obviously depends on MRI results. 

    As for support I thought those was the one for breast cancer but all so new to me.

    Would be lovely to stay in touch but don't know how this all works but really appreciate you taking the time to reply.

    Take care

    Amanda x

  • I’m in the same position having picked up a minor distortion on a mammogram as part of an exec screening through work, followed by a biopsy, which confirmed invasive lobular carcinoma.  MRI has confirmed that it hasn’t spread to the nodes and scheduled for a lumpectomy in a week or so followed by radio therapy and 5 years of hormone therapy.  If anything changes once the lumpectomy is done I guess the treatment plan will change.  Finding this period between diagnosis and treatment just a weird place to be, knowing what’s coming but with no dates or idea how long radiotherapy will be or how it will affect me and the fear of chemo hanging over me if the lumpectomy reveals anything else.  Carrying as normal without really having much normality.  I’m feeling exhausted, apprehensive and wondering how I can balance all of this with work and family.  

    I think I’m saying, I hear and see you.  It’s a rubbish club to be in but we’re in it together.  Sending love x

  • Good morning,  sorry to hear that you're going through this too. Glad that the MRI didn't show anything worse as that's my fear but time will tell.

    It is the not knowing isn't it, have you been allocated a breast care nurse? I have & she's been very helpful & can call with any queries but obviously they can't give answers to what they don't know yet so still leaves us a bit in limbo.

    I have been signed off work due to all the appointments & getting my head around it all & fatigue caused by stress. I hope your work are being supportive too.

  • Sorry sent too soon. Sending much love & healing hugs & stay in touch, we've got this x

  • I have a breast care nurse assigned who has been great.  It’s the not knowing that’s the worst part.  Surgery has just been scheduled for 18th February so things are moving on. Just taking it one step at a time.  I have found that’s the only way to cope with it all

  • Glad you have a date now & your nurse is supportive.  My surgery is booked for 25th subject to MRI results.  Agree we can only take it day by day.  All so recent,  I put 15th Jan but that was day of biopsys, results were 28th so 2 weeks tomorrow .

    My consultant said if MRI confirms it is no worse than it appears then they will do magiseed guided lumpectomy as day surgery under General anaesthetic (magiseed put in day before under local) & also biopsy sentinel lymph nodes at same time as lumpectomy just to be sure regardless of MRI findings. Have an appt next week for marker to be put in for this.

    Assuming your plan is pretty similar,  have you started hormone blockers yet? I started 28th with adcal for bone protection & although worried by Google! No side effects so hope this will be the same for you.

    Sending my best wishes for your surgery & journey ahead keep in touch if you wish but also understand you have a lot going on so totally understand if you don't.  Sending positive vibes & healing hugs x

  • All very similar.  Unfortunately the bruising from the biopsy is still to significant for the seed so I’m have a wire put in the day of the surgery to guide the surgeon as she’s worried the seed will just move around otherwise.  They thought the carcinoma was 2 cms but the mri shows it as 3cms so I’m having a larger area removed to ensure a large and clear margin.  Everything else looks clear so hoping the results after surgery don’t throw that up in the air. 

    No hormone therapy yet, that joy is to come after radiotherapy I think. 

  • definitely up for moral support as we go through hp this journey.  Good luck with the MRI reaults.  Sending positive vibes in your direction! 

  • Hi - just checking in to see how you are doing and if you have any more info on next stepS for your treatment?