Mandermartini Member Posts: 4
edited September 2019 in Newly diagnosed
Hi There,
I'm posting my story on here as I am feeling lost - my family and friends are really supportive but I just don't feel understood.

In 2015 I was diagnosed with low grade DCIS - my treatment was mastectomy, SNB with reconstruction in February 2016, followed by a prophylactic mastectomy of my remaining breast in November the same year.  Based on my pathology and treatment, recurrence was a low risk.  However last month, when I had my annual appointment I had a FNA on a lump which I was told last year was a cyst.  Pathology suggested malignant cells so I was rushed in for scans - fortunately, there were no metastisis but I had surgery to further excise the tumors and another SNB.  3 days after my surgery I was readmitted for a second operation as there were 2 tumors identified (8 and 5 mm respectively).  The second operation removed all of my skin (first mastectomy was skin sparing) and revealed a 3rd tumor, 4mm.

Pathology was ER/PR+, Her-, micro mets to one lymph node.  I will undergo radiotherapy but no chemo.  I also found out yesterday that my bone scan revealed a benign hyperostosis on my skull and my surgeon has told me she isn't worried but wants a CT scan in a few months to check. 

After 3 weeks of scans, testing and surguries, and the additional worry now that the benign hyperostosis is actually a metastasis I am just at a low - for a disease that I thought I had treated 3 years ago I'm now left wondering (obsessing) about another recurrence.  I just feel like I'm being denied a life but really I should be out there enjoying every minute of it.  I have 2 gorgeous boys and a wonderful husband and it is so hard to see them deal with the events of the past 3 weeks.  

My surgeon has said that she hasn't seen a case like mine before so I feel quite isolated and scared.  I've always been so healthy and now I feel like this will never end.



  • iserbrown
    iserbrown Member Posts: 5,511

    Hopefully this link from the BCNA website gives you a clearer understanding

    Deep breath!

    It's a fear we all have and so sorry to read your story. Hopefully it's early detection and lots of tests and radiotherapy to rid it all.

    Take care and please keep posting on here as someone is usually online regardless of time of day 

  • primek
    primek Member Posts: 5,392
    @sillysam83 had a recurrence after her first surgery and had to go on and had further surgeries. @mum2jj also had a recurrence. 
    Both well since but I'm sure they could share their wisdom. 
    I totally get the fear. Whilst I haven't had a local recurrence, I have had lots of health issues that I was terrified was metastases but sll turned out not to be.
    They certainly don't give stats but i guess with all of if us there would have to be tiny breast cells still left behind which of course can still mutate.
    I'm hoping for you this time it's successful and you start to feel happiness in your life again. 
  • Flaneuse
    Flaneuse Member Posts: 899
    @Mandermartini What a rough time you've been having. All the best. Big hugs. xx
  • arpie
    arpie Member Posts: 7,450
    What a bugger @Mandermartini - you have certainly been thru the ringer!    

    As the girls have said - deep breaths and try not to overthink it (difficult tho it is.) 

    Your surgeon and medical team will be monitoring you closely - just try & get out there with your lovely boys & hubby & do whatever you love doing ..... a busy mind & body helps drive the blues away

    Take care  xxx

  • Michele B
    Michele B Member Posts: 136
    @Mandermartini, thinking of you, and wishing you the very best going ahead. Im currently waiting results from my annual checkup. No matter how positve we are, the niggle that it might not be great news, is always there.
    As others have said, try to make ypurself busy enjoying t8me with your family. We are all lucky to have med8cal teams that will be doing their very best for us.
    Love and hugs to you xxx

  • Di1965
    Di1965 Member Posts: 19
    Mandermartini. Gee you poor darling. I am sending you love and hugs. Try and get some counseling i always feel better after talking with professionals. We are all here for you too. You need lots of TLC. So look after you.    :)
  • lrb_03
    lrb_03 Member Posts: 1,267
    Hi @Mandermartini. Sorry you're going through all this... again.

    I, too, have been diagnosed with hyperostosis, on a bone scan that was otherwise normal. I will admit to having been concerned, like you. Over the couple of years since, I have come to the conclusion that it's something that is going to show up more as imaging methods improve, but that at this stage, noone really knows what the significance is. 

    I am a nurse, and it's still taken every bit of those couple of years for it to sit semi comfortably with me. 

    Thinking of you
    Take care
  • iserbrown
    iserbrown Member Posts: 5,511
    edited September 2019
    Excellent advice from @zoffiel -  can't emphasise enough her statement "...the key is to push it back so it's not the only thing you think about. Easier said than done. Keeping looking forward and try not to let this define you. Which really, really is easier said than done.."

    It's a heightened awareness we have of ourselves now that we have the badge, been there done that!

    Take care and hopefully the treatment suggested will rid your body of it for good!
  • jennyss
    jennyss Member Posts: 1,935
    Dear @Mandermartini

    from jennyss in Western NSW
  • mum2jj
    mum2jj Member Posts: 4,322
    Hi @Mandermartini,
    yes I too had a recurrence. My first diagnosis triple neg and I had a lumpectomy, chemo and rads. At the time had one positive lymph node (10mm). 18mths after that diagnosis had a recurrance in same breast, also triple neg. it was devastating. I went on and had a single mastectomy and more chemo. Later when I decided to reconstruct I had my healthy breast off (both my diagnosis were 8 mths and 6 mths after clear mammograms). It is now 10 years since first diagnosis and 8 1/2 since the recurrance. It sucks big time, but I try and take each day as it comes and as a blessing. Sending you much love and what I hope is a sense of hope too. 
    Pau,a xxx
  • dodg113
    dodg113 Member Posts: 53
    HI ,so sorry to hear of your recurrence - an can relate to how you feeling.I have just been diagnosed with new breast ca in opposite breast at 5yr check up.
    Had high grade dcis rx with lumpectomy and radiation ,now have grade 1 er+pr+ her2 - in opposite breast.
    Am feeling so betrayed by my body and petrified of thsi happening a 3rd time.
    still deciding on treatment but thinking of skin,nipple sparing mastectomy for new cancer, not sure what to do for old as more difficult as had radiation.
    I also have a son doing his HSC so decided not to tell my kids till he has finished.
    Have told 2 friends but sadly they have not been v supportive,my hubbie is great but doesnt really understand how scared I am feeling