Got what I wanted...but had to fight!!

SarahsMom
SarahsMom Member Posts: 1,779
edited June 2014 in High Risk for Breast Cancer

Ladies, why do we have to fight so hard to receive the care we deserve?? Why do people treat us like we are worryworts? Drama queens? Uneducated morons? UGHHHHH. 

I finally received a referral to a breast care clinic in the area that will put their arms around all of my records, all of my films from 3 hospitals, will do the right diagnostics, any blood work, and determine whether I need genetic tests and counseling. Finally, the experts! Ahhh. What a relief.

Speaking with my doctor today, I learned my radiologist did not complete the paperwork on my diagnostic compression mammo last month, so not sure what BIRADS (it's usually 2, but sounded like this one might have been a 3?), what kind of calcs I have (micro, macro, scattered, pattern???), nothing.  Nothing! Ugh. I am done dealing with "amateur hour", on to the experts. If they tell me to relax, go away and come back in 6 months for my usual mammo, I will do so and do so happily, knowing I am receiving the best care for me.

Honestly, I've already had breast surgery, why wouldn't I be worried about these things? Why wouldn't they worry more about me? How many people just go away and don't fight, only to find out later something is wrong? I've read some of those stories here and it scares me.

My medical record is very small for 45 - I've had two surgeries - breast 3 years ago (ductal excision, atypical hyperplasia), and an unexpected hysterectomy 7 months ago due to huge uterine fibroids that I never had before. Then to be looked at like a hypochondriac? Seriously, I have a full life and better things to do than sit in traffic on the beltwayand hang out at the hospital. I am sorry for venting here, but I have been immensely frustrated with the way I've been spoken to by everyone up until today, my primary, general practice doctor. God Bless Her!

How can they write off an area that is getting denser as I age, that we can't see into -- and just tell me to come back in 6 months so we can look at again? Look at what? 

Thanks to all of you for the support and information out here - I felt armed and ready for this discussion today. Thanks to all of you, I was asking all sorts of questions and I could tell they felt overwhelmed, thus the referral to the breast care center where I should be seen, obviously.

Just had a celebratory glass of wine, one is ok, right? Smile 

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Comments

  • Jelson
    Jelson Member Posts: 1,535
    edited January 2011

    glad to be the first to say Good For You, too bad you had to fight to be treated properly. I would say, another glass of wine is in order for you today!

    and yes, I hope that you are ultimately given the all clear - but that you will feel confident about it this time. 

    Julie E

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  • SarahsMom
    SarahsMom Member Posts: 1,779
    edited January 2011

    Thanks, Julie! I am feeling so much better today just having this referral process behind me. Now just need to lock in an appt and move forward. I did have 2 glasses of wine, btw! My husband is deployed for a year and he sent me the "wine of the month club" as a Christmas gift :-)  Great (understanding) guy!

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  • Cydz
    Cydz Member Posts: 157
    edited January 2011

    You are so wise to fight. I wish I had been as wise as you. The area where my tumor developed was in exactly what you are describing. A very dense area, that I had looked at the the age of 24 by mammogram, ( I was dx at 50). So dense, in fact that nothing could be felt until it was larger, 3.2 cm., and I was a religious self-examiner. Yes, we are our own and sometimes only advocates. But, we are our BEST advocates. We are talking about our lives here!!!

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  • Peppi1
    Peppi1 Member Posts: 54
    edited January 2011

    Wow. You had a history of atypical hyperplasia and had to fight to be seen by breast specialists. That's nuts. Glad you are on track now.

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  • SarahsMom
    SarahsMom Member Posts: 1,779
    edited January 2011

    Hi Peppi - that surprised me, as well. I received no extra scrutiny because of the past surgery and pathology. I guess it's not the red flag I thought to the medical system?!  But I will keep taking care of myself. Cydz post is exactly why I will push until we look in that area and make sure nothing is cooking - thank you, Cydz!

    Hope you both have a nice evening. 

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  • Peppi1
    Peppi1 Member Posts: 54
    edited January 2011

    Carpe...keep us posted on what the breast specialist says. I am so glad that you will be in much better hands.

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  • SarahsMom
    SarahsMom Member Posts: 1,779
    edited January 2011
    Thanks, they open their appt books first thing in the AM and I will be on the phone at 6AM. Hoping to get in as soon as possible to see the experts. Smile
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  • CameoBarbie
    CameoBarbie Member Posts: 125
    edited January 2011

    I am so glad for you too.  I have names and numbers for better care too but have to be referred again by my Doctor who says your fine, oh wait, come back in six, oh, it's nothing, but come back .......

    It's a dance, isn't it.  I wish I felt or totally trusted them too.  Going for a thermography scan on the 20th.  At least they sit down and show you and discuss what the heck is going on.  AND if all this is normal than I can relax a bit more.

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  • mdoak
    mdoak Member Posts: 219
    edited January 2011

    Carpediem I know exactly how you feel! I was diagnosed with ADH many years ago and when I told my current radiologist (at an excellent breast center) he said "oh, who knows what that was." And despite the fact I have extremely dense breasts with about 3 dozen fibroadenomas in them (at least, they look like fibroadenomas on ultrasound), a history of 10 biopsies and a recent very suspicious area (biopsy came back benign) he was going to put me back into "screening". Uh, no. That's when I applied to a high risk clinic -- it's a three hour drive, but I don't care. Got the appointment for February and breathed a sigh of relief.

    Good for you for fighting! You go!

    Melissa

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  • carcharm
    carcharm Member Posts: 486
    edited January 2011

    Not related to BC but had to fight to save my son's life. Since birth - now 25 - he never slept thru night, screamed with every BM- looked as if in pain. I took him to seveal specialists who thought I was a nutty first time mom till at age 3 1/2 he developed c-diff out of no-where than discovered he had megacolon and finally a diagnosis of imperforate anus. The first surgeon butchered him so he leaked constantly. The second, a man at a well know childrens' hospital, put him under anesthesia for a year-once a month- and dilated his anus until he retired. Than, low and behold, his partner, a female and the only one in the surgical practice was given the case. Guess what? She did her dissertation on kids with imperforate anus. She took one look at him without touching him and said you're son needs a pull thru surgery and if you don't want to do it find someone else cuz this will cure him. OMG... I honestly fell on me knees and wept... she thought I was nuts but why couldn't that male surgeon that retired turn him over to her in the beginning since she had so much experience with kids with these problems? She is/was an expert? I think it was his ego... didn't want her to look better than him and in the meantime my son suffered horribly... fight... fight for the care you deserve...sad that we have to but I learned my lesson from that.

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  • feh
    feh Member Posts: 63
    edited January 2011

    Just a note that atypical ductal hyperplasia is just a finding; such extreme measures are being taken with ADH.  I've said it before - I don't understand why such gravity is being placed on it at all.

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  • msippiqueen
    msippiqueen Member Posts: 191
    edited January 2011

    This topic is spot on. If you are not a Nurse or Doctor it must be flabbergasting to find you must become well versed in your care to be fully informed and armed for decision making.



    Too many out there have to learn about disease, procedures, terminology, surgery, recovery, tests, medical devices and that's for starters. Then have the presence of mind in an unsettling situation to go on and advocate for herself. Then there's paying for it. Whole 'nother ball of unpleasant and complicated wax.



    The overwhelmed, sick and traumatized must press on and hope some compassionate and trustworthy health care provider will shine some light. In this day of CYA health care priced out of everybody's income (except Oprah) or in the US, those with govn't sponsored care (Medi-) we all need a very strong paddle.





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