Forum Discussion

Nutmeg's avatar
Nutmeg
Member
20 days ago

Hormone Therapy

I had a double mastectomy two weeks ago and need to take letrizole. I have also been told to have a bone scan and PET scan. I have a few questions, firstly, when should I begin taking letrizole, do I wait till I heal more or start now? I am worried about the side effects while I am still recovering from the surgery. 

I have the same question with the two scans, (bone density & PET) should I do those now or wait till I have recovered more from the surgery?  I know I should have asked my surgeon at my last visit, but I was concentrating on her explanation of the pathology results and didn't think of it. The last 5 weeks since my diagnosis has been a rollercoaster of emotions and I still shake my head that I am where I am! I know that I tend to worry about the 'what ifs?'  too much, and probably delaying all the inevitable instead of just getting on with it. Thank you for your advice.

letrozole
mastectomy
side-effects

7 Replies

  • Ann58's avatar
    Ann58
    Member
    19 days ago

    Hey nutmeg 

    sorry you are going through this too šŸ„¹šŸŒø Iā€™m newly diagnosed and I have received such wonderful support here.

    wishing you well as we walk this path together šŸ«¶šŸ»

  • Nutmeg's avatar
    Nutmeg
    Member
    20 days ago

    Thank you for your reply arpieā€‹, I haven't been referred to an oncologist. I had 2 lumps both showing that I had invasive ductal carcinoma, both hormone receptive positive. During surgery I had my sentinel lymph node that showed I had a 1mm micrometastasis (I was assured that this was really small) and that I had clear margins. I am thankful that I have been told that I can avoid chemo & radiation, this is probably why I wasn't referred to an oncologist? I had a breast care nurse who saw me before my operation & once in hospital but I haven't spoken to her again. A lovely community nurse visited me a few times till last Sunday, when drains were removed. Unfortunately during this whole diagnosis I have discovered that my GP who I have had for 30 plus years has retired too. It is after all the rush of appointments, biopsies and the operation & last visit with the surgeon that I am trying to work out when to have these next scans and when to start taking the letrozole? I feel a little overwhelmed, the rush of all that has happened & trying to be relieved but still feeling fearful of hormone blockers and whats next.

    • arpie's avatar
      arpie
      Member
      20 days ago

      Golly gosh Nutmegā€‹ - I am sorry that your GP has retired :(  It is just an added bit of stress that you didn't really need.  :(   

      To be honest, I am quite surprised that you haven't been referred to an Oncologist and/or rad Onc too.   The fact that there were micrometastasis in the sentinel node tests .... really indicates you should have at least ONE appt with an Onc and also a Rad Onc, just to confirm your surgeon's decision not to refer you or needing other treatment.   

      Is your surgeon a dedicated Breast Surgeon or is she a 'general surgeon'?  

      I really think you should contact your Breast Care nurse again - and ask her why you weren't referred to see an Onc and/or Rad Onc.   They should also be able to help you with your ongoing scans & other appointments.

      take care xx

      • Nutmeg's avatar
        Nutmeg
        Member
        20 days ago

        Yes, she is a Breast surgeon and had an assistant Breast surgeon (who originally owned the practise for many years) working with her so I have felt I was in good hands. Oh dear, this is a little nerve racking. I will try to get in touch with my breast care nurse tomorrow. Thank you.

  • arpie's avatar
    arpie
    Member
    20 days ago

    Sorry to see you joining us here Nutmegā€‹ xx I hope you are healing well from your surgery without issues xx  It really is a roller coaster of emotions - from tears right thru to anger & everywhere between!  WHY ME, too??  ALL these reactions are totally normal.  But if you feel very sad ..,.. give the BCNA helpline a call on 1800 500 258 (Mon-Fri, 9-5) to have a confidential chat with the mods xx

    As well as ringing the Helpline consider checking out Dr Charlotte Tottman's podcasts "What You don't know until you do''.  She is an Onco Psychologist who was diagnosed herself 5+ years ago & had a double mastectomy, choosing to remain flat.  She's been helping women with BC for many years - so she was quite surprised with her own reactions to her own diagnosis and treatment - and it wasn't always what she'd been 'advising' her patients previously. 
    She is VERY easy to listen to - as she has had a LIVED experience of BC, surgery and other treatments, and she now has much better understanding of what we 'go thru'! (the first episode of Series 1 is here - then continue on with the other episodes as well., then go onto Series 2 as well):
    https://soundcloud.com/bcna/what-you-dont-know-until-you-do-with-dr-charlotte-tottman-episode-1-d-day-diagnosis-shock?in=bcna/sets/what-you-dont-know-until-you

    Have you seen your Oncologist yet?  Or was it your surgeon who said you'd be on Letrozole?  My surgeon said I'd be on Tamoxifen - but when I saw my Onc - I was put onto Letrozole!  So, anything your surgeon has said about hormone suppression .... take with a grain of salt, as it really isn't HER expertise!!  It is your Oncologist who will be guiding you thru the Hormone Meds - and probably even your ongoing scans.

    Have you been given contact with a Breast Care nurse yet?  They will also be your first port of call for any questions eg, regarding the bone density & PET scans.  Sometimes they organise them for you as well.  It just takes the pressure off you from having to do these things too.  Your surgeon should have lined one up for you (either their own BCN - Breast Care Nurse) or a McGrath BCN.

    Also, check out this thread too, that has a wealth of information on the forum, with many tips on important 'stuff'.  eg - recording all your ongoing appointments so you CAN go over them afterwards as it is almost impossible to remember EVERYTHING that is said at the time!  
    A big welcome to all New Online Network Members ..... | BCNA Online Network

    Take care, look after yourself