ADH Diagnosis - So hard not to feel like a ticking time bomb

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Bellafia
Bellafia Member Posts: 1 New Member
Hi everyone.  

I was looking for somewhere to connect and although I don't have a diagnosis of cancer, this seems to be the best fit.  I am 57 and have no recollection of any breast cancer in my family.  My story in a nutshell is that my last mammogram in late Sept (I have them regularly but was about 6 months late this time) resulted in a call back. First time ever but I figured they were just double checking as I moved from WA to Vic so I was new to Breastscreen Vic.  After my second mammogram they asked me to stay back (thank goodness hubby was with me) and although the packed room of wonderful women in robes were supportive to everyone, it was a very nervous time.  I was told I needed to have a vacuum assisted biopsy.  A week later and I went in to learn the diagnosis of atypical ductal hyperplasia (ADH).  They assured me that this is not cancer but that surgery was necessary.  So last week I had a surgical excision and the surgeon sent me a text a few days ago that the result is benign. The wait across the month has been so dreadful.  

I am seeing her tomorrow and have been told I will now be under her care and off the Breastscreen service as I need more frequent scans.  I have a lot of questions to ask tomorrow because of course I have searched for as much information as I can online about ADH.  I think sometimes that can be a bad thing though!  Yesterday I was particularly teary as I just felt like it seemed a matter of when rather than if.  I know that there are calcifications in my breasts as they showed them to me (they said that was normal, but it was the grouping in my right breast that raised the alarm), but I am just so unsure as to what ADH means moving forward.  I would love to know if anyone else started their journey like me.  Did it develop from ADH to DCIS years later?  Did you have mammograms 6 monthly?  There is cancer within my family (prostate and bowel) and a cousin had a lump removed that was benign.  I decided to fill in the iPrevent risk assessment online today, possibly not wise given my current fears, and it came back with a risk of 36% over my lifetime.

I will take it slowly and look forward to meeting with the surgeon tomorrow so she can answer the questions I have, but I suspect she simply won't be able to answer many of them.  And so that is why I am here, asking if anyone else found themselves in the position I am in.

My warmest wishes to everyone on this forum and thank you for reading my post.

:)

Comments

  • primek
    primek Member Posts: 5,392
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    I can't help you with your diagnosis and prognosis but I suggest you write down the questions you want to ask as surgeons can be quick to do...it's not cancer see you in 6 months....type thing,  and you have some very good questions to ask. 

    I do have family history but no known gene. One sister had breast cancer following 4 benign cysts. Another sister had multiple cysts that were removed and throughly investigated. She did not go on to develop cancer.
    My cancer developed with no apparent dcis or benign cysts. So I guess it's quite unique. 
    Hopefully your surgeon has much more knowledge and info for you. 
  • brightspace
    brightspace Member Posts: 445
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    Hi Bellafia
    All the best for moving forward 
    We are all very lucky to have access to up to date screening
    the outcome is often fraught with anxiety 
    Continue to do what you enjoy 
    Sometimes counselling is needed ...whatever the reason Reach out to professionals if you need and continue to come here
    All best with specialist followup
    Bright in hope