Stage 0 (DCIS) with widespread microcalcifications

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EmCee
EmCee Member Posts: 21
edited March 2019 in Newly diagnosed
Hi, am very new and slowly (or quickly?) getting my head around my diagnosis and the terminology.  It's like learning a new language which is probably the most pleasant thing I can say about this experience so far.

I have widespread clusters of microcalfications across one breast.  Three different biopsies have established that at least 2 of those clusters at atypia hyperplasia and at least 1 is low/intermediate grade DCIS.  It's all very manageable and treatable however they clearly cannot biopsy all of the clusters as there'll be nothing left of my breast and an MRI has not provided any information one way or antoher on the risks or status of the other clusters.  My surgeon was originally thinking of advising on a mastectomy given the widespread nature however, given the indeterminate status of many of the clusters she is concerned that this might be too drastic a step at this stage.  She has come up with an alternative - wide local excision - which involves removing a wide section of my outer right breast containing the 3 sampled/confirmed areas, then testing the edges of the sample to assess whether there are any cells of concern at the edges.  If no suspicious cells in the margins then they will proceed with a perforated flap reconstruction and will screen the remaining clusters annually. All sounds very sensible, however...

...I am afraid that testing will reveal further suspicious cells at the margins and I will end up with a mastectomy in any event.  Equally, I may not.  I would be keen to hear from anyone who's had a similar diagnosis and how it fared for you.  If you 'only' had the wide local excision and microcalc clusters were left behind how have these clusters behaved since your surgery?  I realise everyone is different I am just looking for strength, comfort and knowledge from hearing others' (similar) stories.  Thank you x
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  • Blossom1961
    Blossom1961 Member Posts: 2,419
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    I had three cancer cells plus a widespread white something. My surgeon went for a mastectomy to be on the safe side. I had chemo before my mastectomy and it had killed all the cancer off but we didn’t know that until the breast was all sliced and microscoped. I am not regretting my decision as I would always be wondering.
  • EmCee
    EmCee Member Posts: 21
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    Blossom1961 that is good to hear.  That is the exact trade-off, though, isn't it?  Losing a whole breast when (in my case) it's not yet clear if that is needed/gaining certainty vs less drastic surgery/increased uncertainty.  I suppose the 'worst' that could happen at this stage is I have the excision, they test the margins and end up telling me I still need the mastectomy.  Had convinced myself a week ago that mastectomy was they way to go but then they came up with this new plan which, I must admit, makes me feel less scared and emotional but comes at a cost to certainty.  
  • Blossom1961
    Blossom1961 Member Posts: 2,419
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    @EmCee Do whatever you are comfortable with. If the margins aren’t clear or if they suspect the widespread area has cancer then they will advise you accordingly. All of us have to deal with this in our own way. Sending big hugs as you make your decision and start treatment.
  • deh
    deh Member Posts: 79
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    Hi EmCee, I experienced a similar situation back in 2011. I remember feeling overwhelmed with weighing up my options and making 'the right decision'. I  decided on a wide excision initially and awaited anxiously for the post surgery results. With "no clear margins' and high grade DCIS detected, I subsequently decided to have a mascetomy with immediate reconstruction. It was a big decision - as I never expected to lose my breast - but it was my decision, based on me accepting that I could live with the consequences (physically & emotionally). I don't compare or judge my past decisions - I just accept that breast cancer challenged & changed me. I am now a happier & healthier person. Take good care of yourself and keep in touch when you need to. Warm regards, Di
  • EmCee
    EmCee Member Posts: 21
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    @deh thanks for sharing.  I think that is the most shocking part of this (for me at least) - I don't have invasive cancer yet am losing some/all of my breast.  Pre-emptive strike and all that.  I had my wide area excision on Friday, losing 20-25% of tissue on my right breast (hard to say as I'm swollen etc) and now anxiously/impatiently awaiting Monday 15th April for the histology results and judgment on the margins.  I think I am mentally prepared for 'no clear margins' (my surgeon tells me they had to keep cutting more and more tissue as they kept finding more and more cells during surgery) but will obviously be relieved if the margins are clear and we can now proceed to reconstruction.  I must say my surgeon has done an amazingly neat job.  I am completely in awe of her and the surgical team.  To complicate matters she is concerned I have Paget's disease (cancer of the nipple) so yet another unknown to possibly deal with...I suppose it is 'helpful' that all of these challenges are coming at the same time as I hate drip-feeding of bad news!
  • Cashbrown
    Cashbrown Member Posts: 6
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    @EmCee similarly to you I was diagnosed with widespread clusters of DCIS on my right with one large non palpable area next to my chest wall in upper right quadrant.
    I also had a 1.4 cm invasive ductal carcinoma ina a similar place on my left. Hormone receptive.

    i opted for breast conserving surgery ... mainly as prognosis seems similar with radiation as full mastectomies and I am not quite ready for that.

    the left side tumour was larger than they thought and had spread to one lymph node - I was told a week later they removed eight rather than just the sentinels.

    the right side with DCIS turned out to contain an invasive beast which was not detected on mammogram, ultrasound or mri.
    this meant I went back in yesterday for sentinel biopsy and will get results next week.
    i am 52 and only just menopausal so i still have no idea what is in store - apparently margins were clear but I have to admit that the conversations were hurried and I was tired and confused.
    i still don’t have an appointment with oncologist yet - my advice is take someone with you to every meeting you can and you can take time to make your decisions :) 
    good luck and keep us posted ! 
  • kmakm
    kmakm Member Posts: 7,974
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    Gosh @Cashbrown, you are having a time of it. Have they advised you of your breast density? It's a bit of a shock when you realise how less than perfect mammograms etc are at detecting breast cancer. The sooner they get the blood test happening the better.

    Anyway, welcome to the forum! K xox
  • EmCee
    EmCee Member Posts: 21
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    @Cashbrown that is a long journey you are on,  I'm sorry there are so many twists and turns and wish you the best outcome that gives you the most certainty. Rest up x

    Interesting that your lesion was not detected on MRI etc.  My DCIS also hasn't showed up on my MRI making ongoing monitoring very challenging. I think my surgeon called it "non-calcifying DCIS" but I can find little info about this.  Do you have any further info on why yours isn't detectable? 
  • Cashbrown
    Cashbrown Member Posts: 6
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    Thanks @kmakm and @EmCee
    i haven’t been advised of breast density - I assume the invasive cancer didn’t show up as it was hidden in a mass of calcifications. The calcified DCIS they said had probably been there for years - it was found on my first mammogram. ( I was 18 months overdue for it and yes could possibly have been diagnosed earlier and saved my lymph nodes 😟) 

    Having invasive cancer in both breasts at the same time and in the same place is apparently quite rare - although one is more advanced than the other.

    I have no idea what ongoing monitoring will look like but have found through reading this forum I have better questions to ask. Thank you ladies !! And best of luck to you @EmCee I hope it goes smoothly for you 


  • arpie
    arpie Member Posts: 7,754
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    @EmCee - all the best for your results - then you'll have a clear idea of your ongoing treatment.  Fingers crossed it isn't Pagets.  I am guessing they've biopsied that at the same time as your surgery?   Take care xx

    @Cashbrown - gosh - you have been thru the mill already!  Definitely ask about your breast density - all women should be told when they have their mammogram - as both cancer and dense breast tissue shows as 'white' (as possibly your micro calcifications were too) - so is not readily identified & picked up. Especially in the case of invasive lobular cancer.  Mine wasn't picked up and I'd been having mammograms for 14 years - and I'd had one just months before my GP found mine.    

    BCNA is actively campaigning for women to be advised of their breast density (as is currently done in Western Australia & just recently, in the whole of the USA.)   All the best for your sentinel node biopsy xx




  • Cashbrown
    Cashbrown Member Posts: 6
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    Thank you @arpie - yes I have noted that would have been good to be notified as I could have managed my expectations a little more realistically.
    i will lobby where I can for change 
  • Sister
    Sister Member Posts: 4,960
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    Don't beat yourself up about not having the mammo earlier - there's no guarantee that an earlier one would have picked anything up.  I hadn't had a mammo for a long time before the fateful one, although I always checked myself.  My cancer (ILC) being recognised as a possible problem from that mammo was described by the surgeon as an amazing pick as it was so difficult to see.  It was already 4.5cm with no clear margins, and had spread to 3 nodes - not that that was known until after the first surgery.  It was also estimated that it had only been around for 12 months, maybe up to 2 years.  Quite possibly, if I had gone for that screening mammo a few months earlier, it would not have shown up.  A few months later, and it would have spread much further.  So, you may have done the "right" thing and walked away thinking you were fine when all the time it was just undetected.