Forum Discussion

Bj's avatar
Bj
Member
3 months ago

Newbie…long story

Hi everyone,

Newbie here. Never dreamt I would be joining this club, but who does ?! This forum and website have been so helpful to me over the past month. 

My journey started last June when I decided to speak with my GP about a tender spot right on the inside edge of my left breast. She reassured me that tenderness isn’t typically a symptom of breast cancer, but we would check it out. Got an ultrasound and mammogram. US identified a small mass, mammo some calcifications. Got an us biopsy around October, all clear. Then around Christmas I noticed some brown nipple discharge (took a while to accept it was coming from the nipple, thought I had spilt something…. Every few days in the same spot!!!). Back to the GP, another ultrasound. The report said there was “debris” in the duct, couldn’t exclude papilloma, MRI would confirm, surgical consult recommended. So off for the consult, after which I was told the discharge was due to trauma to the breast from the biopsy (they didn’t send me for the MRI). This was purely based on discussion and very brief examination. In hindsight and knowing what I do now, I would have pushed back and demanded the MRI regardless.  Relief! But my GP wasn’t convinced. She sent me for an MRI then a consult with a specialist breast surgeon who, after looking at the MRI,  immediately sent me for some MRI and stereotactic biopsies…2 in my left and one in the right. That was a bit of a marathon!

I was convinced it was all a waste of time and money! I turned up to the surgeon for results unconcerned…obviously rather naive! “You’ve got a lot going on in your breasts!” were her first words. LCIS and papilloma in my right breast, DCIS and invasive Mucinous carcinoma in my left. 

I was speechless. Shocked. Bewildered. Confused. We briefly discussed next steps, but I couldn’t get out of there fast enough! 

I called my husband in tears. We went back together to the surgeon the following Monday, after doing a bit of research, lots of reading, and chatting with a wonderful McGrath Breast Care Nurse. After asking more questions, I decided on a left mastectomy and right lumpectomy. Plus sentinel node biopsy on the left.

But I was so angry.  How could the first surgeon send me away without really being sure??!! I went through all the feelings, disbelief, anger, sadness, grief, a bit more anger, and finally acceptance (mostly anyway!!). I realise I have to let go of the anger, and am taking it on as a learning - it’s important to advocate for our own health and not accept something too easily if it doesn’t  seem right. 

Hubby and I  had a two week holiday booked up north the following week, which the surgeon said was fine, so we booked surgery for August 13, ten days after we would get home. The holiday was great, we hadn’t told anyone at that point (except my mum and work). We were able to not think about it and had some really special time together. It was good to have the space and time to process what was happening. 

so now I’m one week post surgery, contemplating the future, keen to get back to everything I used to do. I had been training for a half marathon in September, which of course now won’t be happening. We are hiking the Overland Track in February, so that’s what I’m aiming for. 

I’m so very lucky to have an amazing, competent, supportive partner. He has taken the same time off work as me to support my recovery. He even washed my hair for me yesterday :-) Recovery is going pretty well, although I’m often still uncomfortable in bed. Getting the drain tube out a couple of days ago was wonderful!

We go back to the surgeon next week (two weeks after surgery) for dressings etc and results. Fingers and toes are all crossed!

 Thanks for getting this far, there’s something a little cathartic in writing this down. 

I’ve really appreciated reading others stories, it helps with knowing we are not alone and the feelings are valid. Thank you :-) 

Belinda xx

6 Replies

  • Hi Bj​ What an ordeal you have been through.  No wonder you were shocked and bewildered when you were given the diagnosis.  How awesome is it when the drains come out! I was sooo happy to get rid of both of mine.  It's great your partner is supportive of you and your journey. Hoping for great news for you with the results!  Something to consider for your recovery - my breast care nurse strongly recommended me to book in with a physio for around the 6-8 week post op mark. I found the physio incredibly helpful with getting full movement back in both my arms after my double mx and sentinal node removal. 

    All the best for your ongoing recovery!

    • Bj's avatar
      Bj
      Member

      Thanks for your messageMay2024​  that’s great advice re Physio. I’ll chat with the BC nurse about recommendations. 

      I hope your own recovery is going well x

      • Mez_BCNA's avatar
        Mez_BCNA
        Community Manager

        Bj​ Thank you so much for sharing your story. It takes courage to speak openly about personal experiences, and your honesty is truly appreciated.

        Great advice from May2024​ re engaging with physio, which reminded me of Breast Cancer Network Australia's Strengthen Your Recovery' Pilates Program you may want to explore. It’s designed to help people rebuild physically and emotionally after treatment, offering practical tools and guidance. 

  • Golly Gosh Bj​  .... it should NOT have taken that long to identify your BC - so well done YOU and your GP for continuing to push for tests and a definitive diagnosis!!  

    I am SO Sorry to see you join the club that no-one every thought they'd be joining 🙁.  I hope you are recovering well from your surgery - make haste slowly  .....  your fitness level will assist you in your recovery, I reckon - so don't worry about 'losing' fitness by having a break  .... let your body heal just now . .. and your base fitness will still be there, when ready to train again xx  

    You've found the right spot here tho, for support & info from those who've 'been there, done that'! So hopefully we'll be able to help smooth the way for you from here on. 

    Your hubby is a definite keeper too 😃  How lovely of him to wash your hair - That would have been really 'special' xx. 

    When you see your surgeon next week, consider recording your sessions on your phone, so you can go over it again later, as it can be difficult to remember everything that is discussed. 😉  If hubby isn't able to be with you at all your early consults - take a trusted friend or family member with you both for support and an extra set of ears.

    Mine was ILC (Invasive Lobular Cancer) - I was lucky to only have the one lumpectomy, rads & tablets .... and have recently finished the tabs after 7 years! 

    Whack up ANY question - remember there are NO dumb questions!!! This diagnosis can really muck with your brain too - so if you feel sad, angry, distressed at any time .... ask your GP (or your treating team) for a referral to see a counsellor .... or give the team a call here on the Helpline on 1800 500 258 (Mon-Fri 9-5) for a confidential chat.

    You could also listen to Charlotte Tottman's podcast (link below). 
    She is a BC specialist counsellor who was diagnosed herself, and had a double mastectomy, so knows EXACTLY what we've all been thru, both emotionally and physically!  Her own reaction to her diagnosis was also quite different to what she 'thought' it might be, given that she'd been counseling women's reactions for some years before, so thought she 'new' what to expect!  She is VERY easy to listen to, too xx
    http://www.drcharlottetottman.com.au/my-podcast.html

    Raelene Boyle's video is also well worth watching - what a star! 
    https://www.bcna.org.au/resource-hub/podcasts/upfront-about-breast-cancer/upfront-about-breast-cancer/episode-21-raelene-boyle-on-pulling-herself-out-of-the-darkness/

    There is also HEAPS of info in the link below to help you navigate the blog and also some tools to evaluate your own physical and mental recovery thru your ongoing treatment! xx.
    https://onlinenetwork.bcna.org.au/discussions/general-discussion/a-big-welcome-to-all-new-online-network-members-/222737

    Take care & all the best for your ongoing appointments & treatment & let us know how you go next week xx

    • Bj's avatar
      Bj
      Member

      Thanks so much Arpie, going slowly today :-)

      I have found the podcast and started listening, it’s been really helpful. Thanks for highlighting some of the great resources available. 

      Great to hear your tablets have finished, that must be a wonderful feeling! Worth a little celebration! Hope you are going well.

       Many thanks x

      • arpie's avatar
        arpie
        Member

        Terrific xx.  It does take a bit longer than we 'think it will' .... and not doing any lifting is really important! (not even reaching up or down into cupboards as well as the more obvious, picking up kids and/or pets or carrying & hanging out the washing!)  Just rest up & heal well.  

        Many thanks Bj​,   I am so glad to be off them & I am going well - and I celebrated by going to WA for a 3 weeks, both kayak fishing & catching up with a dear friend (from this group) & we got up to a lot of mischief together!  😉  

        Take care & all the best for your results next week xx