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angel_11
angel_11 Member Posts: 8
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

Hi all. I am new to the board and so glad I found this site. So here is my history/story:

On 24 November 2009 I went for a routine checkup at the doc who felt something in my breast and sent me for a sonar (no mammogram as I was 24). Sonar picked up something that was diagnosed as atypical hyperplasia. I was then send for a biopsy and it was reclassified as being DCIS. I don't really know all the terms and lingo but this is how I understood it. 

The doctor advised me to go for a mastectomy as I have a very strong history of breast and ovarian cancer in the family, and I had basal cell carcinoma when I was really young. I went to three different doctors and all had a very similar suggestion. I went for a modified radical mastectomy on both breasts as I wanted the risk to be as small as possible for any future cancer. I had that done on 8 December 2009 with immediate silicon implan reconstruction. 

My tests came back that there was no invasive cancer. In April 2010 I went for scans that showed all clear, however my blood tests showed irregularities (I live as an expat and the doctors here don't always explain things properly). They then told me to wait for 6 months till my next scan which was this past week. Again, blood tests was done, blood shows normal, but the CT/MRI ??? scan showed "something". The doctor just called me and said it is showing irregularities on the same breast again, under or on the side of the tissue next to the implants. Now I have to wait for a biopsy to be done which they can only schedule in a few days time. 

So my question is what are the possibilities? What could this be? I know it is really difficult to say but I just want to be more informed about this. When they first diagnosed the DCIS the doctor explained it to be "very aggressive" as my first scans on diagnosis showed nothing in the milk ducts, and within weeks it spread to there. 

When I first went for my April post op scans, the doctor was worried about the blood and my history and wanted to do adjuvent chemotherapy to be on the safe side. But he decided to wait. Now, his comment was "we should've been more aggressive in approaching this". 

Can it be DCIS (or can DCIS only ever be in the milk ducts). Can it now actually be an invasive cancer like IDC. 

Again - sorry I don't have all the info. I am new to all of this. I do know that they didnt test the DCIS for any hormone receptors.

thanks in advance 

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  • Beesie
    Beesie Member Posts: 12,240
    edited October 2010

    angel, I'm sorry that you are going through this.  As for what this could be, hopefully it's a false alarm.  MRIs are pretty notorious for showing things that turn out to not be serious.  So maybe this is scar tissue or something like that.

    Could it be DCIS?  Yes, a recurrence after a mastectomy is possible.  With a mastectomy, although the objective is to remove all the breast tissue, there will always be a few microscopic scrapings of breast tissue - and possibly milk duct material - left against the chest wall or the skin.  It's simply impossible for the surgeon to remove every cell of breast tissue.  That's how recurrences happen.  And if it is a recurrence, it's also possible that the cancer cells may have developed to become invasive.  So both are possibilities, although generally the recurrence rate after a mastectomy for DCIS is only 1% - 2%.  So the odds are much greater that this is something else, such as scar tissue.

    Fingers crossed for you, hoping for benign results.

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  • angel_11
    angel_11 Member Posts: 8
    edited October 2010

    Hi Beesie. thanks for your very knowledgeable and clear answers. I will be going to the doctors again today for bone tests (?) and a further explanation, but what the doctor told me last night over the phone is that further scans now show 2 lumps/masses under the implant on my left breast against the pectoral muscle. He says one is <1cm and one is between 1 - 2cm. He says they are clear and well defined and that they tested negative for ER and PR and double positive for HER. This is all a bit greek to me but I do have some idea from what I have read on here. He also says my oncotype score is 30. He strongly advises chemoteraphy and says that my other doctor should have been more aggresive in his approach when I was diagnosed with DCIS and should at least have done radiation after my mastectomy as I classify as a high risk cancer patient. 

    He also says he would not suggest removing it surgically as I have had a double mastectomy and says that even if he would, he still would do chemotherapy. He suggested CAF as a chemo regimen and wants to start this coming week. He also said my cancer is stage 1A. Luckily they removed my lymph nodes during my mastectomy so I don't have the chance of having cancer in there. 

    Not sure if this makes any sense?

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  • HantaYo
    HantaYo Member Posts: 280
    edited October 2010

    Namaste!

    Angel:  Did they do Bxs or just scans?  Where are you having your medical care?  You said you were expat.  I am wondering if they missed an invasion on pathology.

    I had DCIS grade 3 with comedo necrosis and had BMX with SNB. My follow up regimine is self skin exams and once yearly an MD skin exam.  I have been told scans, blood tests, more frequent MD visits are not indicated for DCIS. I did not have any scans or blood work at time of DX.  Now I am concerned that my follow up should be more intense.

    Beesie:  Should I ask for more frequent/extensive testing?  The oncologist I saw said that when DCIS recurres that it is because an "invasive nature" has been missed.  Since two pathologists here reviewed the tissue and two from Mayos reviewed the tissue and they all agreed on the DCIS grade 3 with Comedo Necrosis DX that I had the most minimal risk ever, did not need any further treatment and I could consider myself cured and move on with my life.

    Karla

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