Learned something new today...

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knitgirl
knitgirl Member Posts: 10
edited June 2014 in High Risk for Breast Cancer
Learned something new today...
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  • knitgirl
    knitgirl Member Posts: 10
    edited December 2012

    I learned something new today - always ask for a copy of your imaging reports and not to trust the little post card in the mail that says its fine.

    I had a mammo two years ago as part of my screening when my gyno thought that I might have uterine cancer.  I received the 'post card' in the mail a few weeks after the mammo - said normal and didn't think another thing about it.  I also double checked with my gyno during my follow-up exam after my scope for possible uterine cancer.  He said - normal. Funny thing is that I've been asking about the results from that mammo report quite a few times in the last year and a half - guess my mind was picking up that something wasn't right.

    I have a lumptectomy scheduled for Dec. 18 for 2 tumors in my right breast.  In looking at my imaging report from my mammo last month - they reference my mammo from 2 years ago and mention that the area of concern is more prominent than in my prior study - WTF!!!  I was so upset at the fact that there was something 2 years ago and no one, not even my doctor mentioned it to me, nor did they schedule me for a 6 month or another mammo a year later. I was 38 at the time that mammo was done and because I wasn't 40 or older, yearly mammos aren't routine. 

    Now I have ADH, PASH, 2 tumors - one 2cm and the other 1 cm, plus a cluster of large cysts.  My tumors have irregular and angular borders.  Really hopful that this is not cancer, but my gut is telling me that this may not be the case.  I'm not as anxious and freaked out as I was last week... there is an end in sight and I'm now armed with my imaging and path reports.  By the end of the year, I'll be able to add to it my lumpectomy path report.  I feel like I've got a little bit of control over this whole ordeal.  I will never trust the post card in the mail again - I will now request a copy of all my reports.  I'm learning, allbeit a little slow, but I'm learning.

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  • Timbuktu
    Timbuktu Member Posts: 1,906
    edited December 2012

    Can I add another lesson?  Don't trust reports.

    Memorial Sloan Kettering will not see anyone unless they first provide the original slides.

    They discovered cancer in a node and lymph invasion, when my first hospital found neither.

    Had they just read the report my diagnosis and treatment would not have changed.

    Also, I originally agreed to be in a study.  My son, who is a researcher told me not to take part.

    Spit, urine, blood, ok.  But the study said they would use original tissue.  He said I might need that tissue at a later time.  Lo and behold, had i donated my slides the cancer would not have been discovered.

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  • knitgirl
    knitgirl Member Posts: 10
    edited December 2012

    Good to know. Thank you.

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  • glowturtle1
    glowturtle1 Member Posts: 1
    edited December 2012

    hi i'm new to this site... my concern is that i too had node and my surgeon look at my images and said if i wanted to take out find but no conern that ws 4yrs ago...my mammo where done every 6mths have a biosiy in right breast which i always think something is going on in my left...well after this last mamm i ws told normal both...i'm in my mid-fifties and had been meopause 2yrs...all of a sudden i get a menstural for 3days and before that i have and too this day my nipples on both breast have been so swollen & hurting...has anyone gone thru this...i have a dr's appt on wed of next week ...their is breast cancer in my family...(sister)...but i see so many questions but none to what i'm going thru...thanks...

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  • SarahsMom
    SarahsMom Member Posts: 1,779
    edited December 2012

    Yes, this has happened to me several times! The little thing in the mail says everything is great and the report paints a much different picture - increasing calcs, increasing areas of thickness, etc. I always get a copy ofthe report now. I am sorry you had the same experience. They act like we don't need to know what is happening with our breast disease (that's what we have!) I am always Birads 3 anyhow, so nothing is known or verified, it's mostly guessing.

    Hugs to all of you wonderful ladies!

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  • dlb823
    dlb823 Member Posts: 9,430
    edited December 2012

    All excellent advice here, and totally in line with some of my experiences, which are detailed on my bio page.  

    glowturtle, if you have concerning symptoms that don't go away within a couple of weeks and/or any lack of confidence about what you've been told about them or about previous mammos, etc., I would strongly suggest making an appointment with a breast surgeon/specialist for a thorough evaluation.  I'm not a doctor, but the unexpected period and sore breasts sound like they might be related to fluctuating estrogen levels, which is fairly common during menopause.  OTOH, IMO, PCPs and gynos aren't always as thorough when it comes to bc screening as a breast surgeon would be, especially if you have any lack of comfort with the screening you've had to date.  

    A sister is clearly a first-degree relative, so you have every right to be concerned enough to get a second opinion from a true breast specialist.  I also have a sister who is a bc-survivor, and, unfortunately, I didn't think it would happen to me and also let myself be lulled into a false sense of security because I didn't know enough to question my "normal" (albeit extremely dense) mammo reports.  No one knows our bodies like we do!      (((Hugs)))   Deanna

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