Bilateral mastectomy - no more screening mammograms!

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lekker
lekker Member Posts: 594
edited June 2014 in Advocacy

Is it too much to ask? Through its website, I asked Kaiser to remove "mammogram" from my list of scheduled screenings. I received a very terse email saying there was nothing they could do as it was a "standard" screening test for all women. I responded that it was unacceptable and hurtful to see a screening test that I could no longer have even if I wanted (I sure don't as it didn't show my palpable lump) since I no longer have breasts. Every time I go to an appointment (pretty darn often), I have to see that on my receipt. At least now they changed the date to "not needed" but why can't they just take it off my list? After my upset response, I received another terse email saying my request was being filed as a formal complaint and I would get a response within 30 days. If there are any other Kaiser members who feel the same about this, would you be willing to contact them? Women with other insurance providers - do you have to deal with this and do you care?

Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited February 2013

    Hi Lekker,

    I also have Kaiser in CA and have had a bmx. It doesn't bother me to see the mammo notation on my appointment receipts but I can certainly understand how it might be upsetting. Please pm me and let me know what I can do to support your effort.

    Caryn

  • coraleliz
    coraleliz Member Posts: 1,523
    edited February 2013

    lekker- I don't have Kaiser but I get letters in the mail saying my mamogram is overdue & it is particularily important for me to have continued mamograms with my history of breast cancer. I went to the imaging center to have a DEXA scan done & the technician in a nice voice told me she could also do my mamogram for me. I told her "i don't get those anymore" & she responded "oh, OK". I still get the letters but I ignore them & sometimes chuckle at them. Apparently in parts of Canada(other women have posted this), mamograms are still done on women with BMXs without reconstruction. They pull any & all the skin they can & compress. Having had a BMX & no recon, I'd refuse!!

    Maybe the formal complaint will lead to a change(eventually)

  • LAstar
    LAstar Member Posts: 1,574
    edited February 2013

    You should not have to go through such hassle! They are not calling you for prostate exams or other tests you don't need. I just got a notice for my annual mammo and was surprised at how bothered I was by it. I was diagnosed from my first over-40 mammogram and was surprised that no one took me off "the list" when I had bmx. I left a somewhat emotional message with the radiology dept to not send me any more notices. It just blind-sided me, I guess. It's all still so fresh! I told my hubs last year that my mammo was his valentine since I had it on Feb 14. We had no idea what was coming!

  • Beesie
    Beesie Member Posts: 12,240
    edited February 2013

    Okay, a different perspective here.  Even if you have a BMX, you still can get breast cancer.  Yes, the risk is low but there is a 1% - 2% chance.  This means that one or two women out of every one hundred women who have a BMX who will get BC again - and this isn't referring to a distant recurrence (i.e., mets, which is a separate risk for those who had invasive cancer) - this is a recurrent or new breast cancer in the breast area. When you think of all the women who have a MX or BMX (probably about 100,000 every year in North America), this means that quite a number of women will end up with a local recurrence. 

    So despite having a BMX, it's important that you be diligent and do BSEs and/or screenings. I've been hanging around here for 7 years and I've seen several cases where women thought that they had no risk of BC after a BMX and didn't do their BSEs or screenings, and ended up with a more advanced diagnosis than they would have had it they'd caught it earlier. So maybe you aren't getting mammos anymore, but why not use the reminder to get your mammo as a reminder to do a BSE and get checked?

    I'm 7 years past my UMX. Because it was a UMX, I've continued to have screenings for my remaining breast. I get mammos and MRIs every year - the MRIs are because I have extremely dense breast tissue and a history of BC. The MRI is bilateral so it also provides a check of my implant reconstructed breast. Until this year, I'd never had a mammo on my reconstructed breast. But this year when I went in for my annual mammo on my natural breast, the tech offered up that they are now doing mammos on reconstructed breasts and she asked if wanted to have a mammo done on that breast as well. I was pretty surprised and worried that it would hurt but I figured "why not give it a try?" If it hurt, I'd just ask her to stop. It turned out that it didn't hurt at all. And with the results being clear, I left with the comfort of knowing that there is nothing going on against the skin or chest muscle or in the nodes on my mastectomy side. All these years I'd thought that having a mammo on a reconstructed breast was kind of silly but it turned out to be easy and reassuring. I'd glad I did it.  

    So maybe those notices aren't so silly or inappropriate after all. But like I said, that's just offering up another perspective on this. 

  • michellej1980
    michellej1980 Member Posts: 342
    edited February 2013

    That's interesting, Beesie. Although my main worry is of a distant recurrence, I am also concerned that a local recurrence or even a new primary might go undetected after my BMX and that that might lead to what could have been unavoidable mets. My new breasts are lumpy and so I've no idea what is normal anymore. 

  • lekker
    lekker Member Posts: 594
    edited March 2013

    Kaiser said there's nothing that they can do to remove it from my list. I'm disappointed. I understand the points made above as to why it might be valuable to be reminded, but that wasn't Kaiser's point at all. They just said they couldn't do it. While it's still on my list, it says "not needed." Then please remove it!



    Frankly, I won't need any kind of reminder to keep vigilant. I'm the one who emails my gastroenterologist when it's time for my screening colonoscopies and I've been doing that for the past 13 years. I am painfully aware that I am still at risk of developing a recurrence or a separate primary breast cancer. I have a feeling I will be the one hounding my MO over the years for (reconstructed) breast screening - only to be told that unless you have symptoms, they won't do scans.



    Oh well. I have my total hysterectomy/oophrectomy in a few weeks. I guess I'll have to see "Cervical Exam/PAP - not needed" on my list forever now, too.



    I know I sound angry and I guess I am. I had to wait over an hour to see my GP yesterday (very unusual thankfully) and there was a TV in the waiting room looping segments with Kaiser docs expounding the virtues of colon and breast cancer (my two) screenings. And every nurse had "got mammo?" T-shirts on. Do I begrudge all of that? No because it might help someone show up for a test that could help them. I just want my personal profile to reflect my personal reality. I worked in software for years and I just don't see how this isn't a simple checkbox. Enough ranting, I just figured I should let you know how it ended.

  • NatsFan
    NatsFan Member Posts: 3,745
    edited March 2013

    Lekker - I'm in IT as well and I share your frustration.  Even if they're using some kind of COTS product and aren't programming it in-house, they should certainly be able to make an enhancement request to the vendor for that change.  At least you'd know they're trying. 

    I'm not with Kaiser, but one of my pet peeves is when I go to see my PCP, gyn, etc. and the perky little assistant who does the intial intake asks, "So, are we keeping current on our mammograms?"  I always say, "Gee, I don't know if you are, but I'm not because I don't have any mammos to gram."  I say it sweetly, but firmly. Eventually they understand what I'm saying. I've been doing this for the couple of years and apparently I'm getting through to them as I haven't been asked the question lately.  Geez, I know they're busy, but if they'd take a few seconds to review my file before coming in the room they'd know my history.

    Beesie - I have DIEP flap recon and would be very worried about doing a mammo on the flap.  My ps said that trauma could still impact the flap, even years later.  A good physical exam along the scar lines and of the chest wall is sufficient according to my onc.  I'm on an annual with her.  She suggested that since I also see my PCP and my gyn annually, and they do extensive exams of scars and chest wall, that I schedule each of those visits approximately 4 months apart.  That way I'm seen and examined by a doctor every 4 months. 

  • indenial
    indenial Member Posts: 504
    edited March 2013

    I have no experience with Kaiser but I've heard nothing but bad things about them! No, you wouldn't likely need to deal with this with another insurance provider. No one has ever sent me a "list" of screenings or tests -- that alone would make me angry, my doctors and I decide what tests I need, not my insurance company!

    I don't blame you for being upset about this. My guess is that they have some sort of standardized list and they really can't remove it (like the computer won't let them or something). I can understand why it would be upsetting to you, and I'm sorry they aren't being responsive! 

    Kind of reminds me of my post-surgery (BMX) nurses asking me if I was having "breast pain." I get that they wanted to understand where my pain was located, but if I don't have breasts, I can't have breast pain, and it hurt to hear that over & over.

  • lekker
    lekker Member Posts: 594
    edited March 2013

    In general, I've been a very happy Kaiser member for over a decade. At my first meeting with my GP over 13 years ago whe I was only 30 years old, she immediately referred me along when I told her about the dramatic bleeding I had going to the bathroom the day before. Because of her referral, they eventually found a villous adenoma with severe dysplasia and carcinoma in situ - stage 0 colorectal cancer. Every other doctor I've told that story to (within Kaiser and others) has said that because I was so young, they would've sent me away and told me to let them know if it happened again. The polyp never caused any other bleeding in the weeks in between that meeting and the time it was removed. How far advanced would it have been when it did?



    It was my Kaiser OB who found the breast lump that didn't show up on my screening mammos from one and three years prior.



    It was my Kaiser genetic counselor who has worked with me to continue testing after BRCA came back negative even though these tests cost thousands of dollars.



    I just need the IT team to live up to the standards of excellence I've come to expect from the medical providers.

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