Advice please

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citrine
citrine Member Posts: 4
edited June 2014 in High Risk for Breast Cancer

I was dxd 4.5 years ago with LCIS/ADH/ALH, and I am 50 years old.  I had a partial mastectomy to remove part of my breast where they found the calcifications that led to my dx. I was going for 6 month check ups with mammo and MRI   on alternating appointments. After my last MRI over a year ago, and a biopsy to check out a suspicious spot that turned out to be ADH again, my dr decided that the constant biopsies (I've had about 10 in the past 7 years) was not mentally healthy for me. He cited some new studies that show that constant biopsies are detrimental to psychological well being. He decided that seeing him once a year was sufficient and that I should have a mammo once a year, and do the MRI only if something showed up on the mammo.  I was okay with that initially, but he is now staggering my appointments with him further apart and not signing off on a mammo every year. The result is that it has now been over 2.5 years since my last mammo and 1.5 years since my last MRI. I am seeing him next Tuesday (even though he wanted to see me only in July) since I am thinking that I should not be waiting so long between mammos. Can I please have some advice from you?  I want to insist that I have a mammo on Tuesday when I see him, and that we go back to my six-month schedule. Do you think I am correct?  Or do you think I can get a mammo every 1 or 2 years?  Any advice would be greatly appreciated. 

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  • NancyHB
    NancyHB Member Posts: 1,512
    edited February 2014

    It sounds as if your doctor is being dismissive of your concerns, as well as your increased risk.  That must be incredibly frustrating!!  Even if you weren't at high risk, now that you're 50, most doctors would order a mammogram once a year.  It's time to strongly advocate for yourself during your next visit:  insist on a mammogram.  Given your history, I urge you to give your doctor a good "talking to" as well - his dismissal of you for the last couple of years has probably played more havoc with your mental well-being than being seen every six months.  If he isn't responsive to your concerns, it might be time to find another doctor.

    Good luck, and please let us know how you're doing.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2014

    I have to agree with Nancy--even without the high risk of LCIS, you still should be having yearly mammos due to being over 50.  I was diagnosed with LCIS over 10 years ago (at age 46) and have family history of bc (my mom had ILC)---I continue with high risk surveillance of alternating mammos and MRIs every 6 months with breast exams on the opposite 6 months (by gyn and oncologist); I also took tamoxifen for 5 years and now continue prevention by taking evista.  I understand his concern that you have had to undergo numerous biopsies, but to dismiss MRIs completely and deter you from having yearly mammos, it just ridiculous with your increased risk. I would find another doctor if this one is not taking your situation seriously enough.

    Anne

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  • leaf
    leaf Member Posts: 8,188
    edited February 2014

    The NCCN (a nonprofit organization) guidelines for  LCIS are (if you haven't had bilateral mastectomies) to have once or twice-a-year clinical exams and once a year mammograms for women over age 50, unless you have other significant risk factors such as a significant family history, chest radiation treatment (not screening chest Xrays), etc.

    http://www.nccn.org/patients/guidelines/stage_0_br...

    I have LCIS, ALH, and DH (not ADH).  I have a weak family history (no first degree relatives with breast or ovarian cancer, but several second and third degree relatives with breast cancer). I see my oncologist once a year where I get a clinical exam, see my gynecologist or primary care doc once a year and get a clinical exam from one of them (about 6 months from my onc appointment), and get a yearly mammogram.

    I'm not saying this regimen is right for you, because we're all different.  

    If you are <50 years old, then there may be some  consideration about whether or not the radiation from a Screening mammogram outweighs the benefits, the closer you are to puberty.  (For example, they normally do not offer Screening mammograms to 20 year old women because of the increased risk of the radiation to the breasts outweighs the benefit of finding breast cancer in 20 year old women. The risk of breast cancer in a 20 year old is quite low, unless they have a BRCA mutation, or had radiation treatment to the breast/chest.)  Even many 'average' 40 year old women get annual mammograms.  Remember, the majority of women with LCIS and no additional more severe risk factors will never go on to get anything worse (DCIS or invasive breast cancer).

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  • citrine
    citrine Member Posts: 4
    edited February 2014

    Thank you everyone for the info/advice. I agree that I have to be a stronger advocate for myself. I will insist that I get a mammo on Tuesday.  If my dr refuses,then I will find another doctor.

    I will let you know what happens after my appointment on Tuesday. 

    Again, thank you. 

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  • citrine
    citrine Member Posts: 4
    edited February 2014

    I saw my doctor this afternoon and I had a mammogram.  The mammo shows a new area of calcifications.  I will see him again in six months, get another mammo and proceed from there.  I am okay with that since I had also had a magnified mammo to check the calcifications.  

    Thank you everyone for you words of support.

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