enough is enough?

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lightning
lightning Member Posts: 12
edited June 2014 in High Risk for Breast Cancer

I'll try to put my history in a nutshell as best I can.  I have no family history except for a maternal aunt who died of breast cancer.  But in the last 7 years, I have had (at last count) eight biopsies.  One fine needle, four core needle, and three excisional.  Some were one right after another - first the fine needle, then the core to get more tissue, then an excisional.   Nearly every one of the tests was ADH. The ones that weren't were intraductal papillomas and apparently not a problem. I am now at a special practice for high risk patients.  I've just had yet another suspicious mammogram and ultrasound so they wanted to send me for an MRI.  Since all of my MRIs have come back BIRADS 5 but after biopsy have been ADH, I said nope, I'm done. I am now ready to have the bilateral mastectomy they offered up a year ago and which I have discussed at length previously with the breast surgeon and the plastic surgeon they work with.  But now they're telling me that because of the mammo report, I still have to have another biopsy before they'll do the mastectomy because if I don't and the pathology on the mastectomy shows cancer, it would be more difficult to do the lymph node testing afterward.  This was never raised with me before, and I do NOT want to suffer through another biopsy and waiting for results.  I'm told my case has been presented at roundtable meetings so I gather I am unusual, but I see the breast cancer clinic staff more than some people do who actually have cancer and the radiology staff knows me by name. I feel a bit like a guinea pig.  I have remained pretty calm over the last few years about all of this, but not this time.   Anyone have any like experiences or thoughts on all of this? 

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  • LISAMG
    LISAMG Member Posts: 639
    edited December 2010
    lightning, i completely understand your reasoning for being upset & "enough is enuff" now. I also understand your thought processes for seeking risk reducing surgery, if this is what you want. Been there & done that myself.  Its a highly personal decision and your history is quite compelling. However, prior to any mastectomy, the breast surgeon needs to be fully aware of what is going on with your breasts. Understandably, it may not seem so now, but he/she seems to have your best interest in mind. If a biopsy should come back positive, then your surgery plans could change. When was your last MRI performed? If this was done within the last 6 months, I would push for the mammo guided biopsy. If not, I would want to know why not??  Multi-focal ADH is considered a pre-cancerous lesion(s) and you mentioned several intra-ductal papillomas, both are within reason for pursuing a mastectomy. Again, the surgeons do not want any further surprises during/after surgery ...therefore, ruling everything out beforehand is considered to be standard of care. A sentinel node biopsy and/or lymph node dissection can be avoided by performing this final biopsy. Why risk possible complications of infection, pain and/or lymphedema un-necessarily? I know I wouldnt, for sure, but only u can decide what is best. Do explore ALL your options too, skin sparing vs. nipple sparing and the type of reconstruction u want. I highly recommend getting a copy of Kathy Stilego's book, The Reconstruction Guidebook, that discusses all your choices...if u want reconstruction.  Best wishes and keep us posted.
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2010

    Lightening-----I would have to agree with Lisa. The last thing you want or need is any surprises. It's better for the doctors and for you to know as much as you possibly can beforehand, so the appropriate course of action can  be taken. Go for the biopsy. Praying no invasive bc is found.

     (I have LCIS and also have been doing  high risk surveillance for over 7 years)

    Anne

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  • lightning
    lightning Member Posts: 12
    edited December 2010

    Thank you for your responses.  They had already scheduled me for the core needle before I wrote my post, but I just didn't really get why it is better to do another biopsy when they could do the surgery and get all the tissue samples they need. But you both are right - better to know going in what I am looking at. 

    LisaMG - I will check out the book - thanks! 

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  • mawhinney
    mawhinney Member Posts: 1,377
    edited December 2010

    There are different types of mastectomies.  Doing biopsies and other tests prior to surgery provides your doctors with information to help guide their decision on the type of treatment you will need.  Tests and procedures can be anxiety producing but they are beneficial. Consider yourself fortunate to have a team of doctors looking out for your welfare.  Sort of like extra pairs of eyes watching over your treatment.

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  • feh
    feh Member Posts: 63
    edited January 2011

    lighting - I'm with you.  I don't understand why they would subject you to further biopsies if you are opting for mastectomy.  But then again, I do not understand why anyone is having so much done for atypical ductal hyperplasia.

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  • lightning
    lightning Member Posts: 12
    edited January 2011

    Had the biopsy since they wouldn't consider doing anything unless I had it anyway. Was negative, which obviously is good news.  This last biopsy, while painful was not has horrible as some others I've had, but I still have a cold dread of having yet another.  Therefore, I am still considering the mastectomy option, and not (as Twiddles thinks) just because of ADH.  I know that is a benign finding.   But after all this "high-risk" monitoring, all I have left is a very small, badly beaten, scarred and very painful breast. Since my other breast is fine, and this biopsy was negative, I am having some second thoughts about having a bilateral, since they tell me I should since the risk factor in each breast is equal and it makes reconstruction easier for them to "match".  Mine don't match anyway, so I don't really care about the latter reason. It's always the one side that has problems (9 biopsies on one side, 1 on the other).  Anyone have a bunch of biopsies (say >5)  and finally ended up with a diagnosis of BC?  I know the risk stuff is lifetime, but the idea of doing this every 6 months for the rest of my life is just awful.  For those of you who had prophylactic mastectomies - how much screening do you have to have after it's done, and has anyone had to have a biopsy AFTER the surgery? 

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  • HelloFromCT
    HelloFromCT Member Posts: 280
    edited January 2011

    Hi lightning,

    So sorry you are going through all of this pain and worry.

    I had ADH and family history and decided to have proph bilat masts with immediate DIEP recon.  I am so glad I followed my gut instinct and did it.  I now have peace of mind, have lowered my risk of bc dramatically, and I have a great recon result as well.

    As far as follow up, I was told no more mammos.  My BS said yearly exams, period.

    What matters is what you think and how you feel and following your gut. 

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