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Comments

  • panthrah
    panthrah Member Posts: 140
    edited March 2016

    completely annoying. I dont have time for this. Ive got things to do. :p Before... for every biopsy and lx I had to take time off work ( i worked with special ed who are boob level at head butting) now Im working as an ASL interpreter so at least this time.. I should be able to sign and not get beat up by students :P so these dont just impact me they impact my students and coworkers and the kids i coach ( I coach jr roller derby) . I thought about just taking them off too.. but I cant find time in my schedule for the down time. So I thought about giving a limit.. is it after the 4th lx? 9th? 6th? Im barely an A cup. I did read on here of one lady who had 9 lx and countless biopsies ...but this was also over several years. Im only on yr 2. so for now.. ( until dr appt) I dont really think about it..I just go about my disney trips ( going today) and work and not let it take over my thoughts. :)

    image

  • Ddw79
    Ddw79 Member Posts: 217
    edited March 2016

    Interestingly my boobs ache / hurt much less since being in the Evista. I find this particularly curious since I know from testing that I had almost zero estrogen anyway

  • tinkerbell49
    tinkerbell49 Member Posts: 176
    edited March 2016

    it's funny you say that I feel like my estrogen levels are low.

    My boob's hurt too one day one the next the other.

    I wonder why they can't test estrogen levels before prescribing estrogen blockers. I know the goal is to completely block estrogen but I'd still like to know where I'm at with it.





  • marijen
    marijen Member Posts: 2,181
    edited March 2016

    I asked the same question months ago and no one ever answered. I always felt I had too much estrogen but didn't know the connection until too late

  • Ddw79
    Ddw79 Member Posts: 217
    edited March 2016

    You can definitely get your estrogen levels tested. I did the hormone testing through Genova Diagnostics which is how I know that I have none . Nonetheless I ended up with ADH

  • marijen
    marijen Member Posts: 2,181
    edited March 2016

    I asked three doctors why they didn't test and got evasive answers from each.

  • Ddw79
    Ddw79 Member Posts: 217
    edited March 2016

    😩. Ridiculous. Insurance covered it to

  • tinkerbell49
    tinkerbell49 Member Posts: 176
    edited March 2016

    I'm going to call my gyn and ask if he can have my estrogen levels tested. Even though ddw like you say, you still got adh but not anything worse. I think that's definitely a good sign for you.. I know mine are not completely gone because I still get my period. Ugh!!!!!

  • Ddw79
    Ddw79 Member Posts: 217
    edited March 2016

    Here's the thing with that Tinkerbell. Most standard docs don't have a clue how to do this. Insurance covers part of it only and you need a Functional type Med doc to order the hormone tests from Genova Diagnostics. You can do 24 hour complete hormone testing ( which is more expensive ) or just estrogen. I found it elucidating . But will almost zero estrogen at twenty years post menopause I am now on estrogen blockers and I can't help but wonder wh

  • marijen
    marijen Member Posts: 2,181
    edited March 2016

    Ddw79, my Endocrinologist said the Femara was such a good drug at controlling estrogen (evasive answer), Hormones is his job!! MO said Femara was a very strong drug, as if it wasn't necessary to know what the baseline was. But my point is if women were tested BEFORE they got cancer that would be PREEMPTIVE, and save us a lot of grief! Also they don't test before they put women on hormone therapy after menopause. It's such an important hormone - I don't get it. I know holistic doctors will check hormones. One doctor put me on hormone therapy after menopause and it didn't make me feel good at all so I stopped. I think it added weight, bloating, and itchiness, remember feeling too warm.

  • Ddw79
    Ddw79 Member Posts: 217
    edited March 2016

    Functional Med docs wil

    Do Genova testing . I have like zero estrogen but here I am now in a SER

  • marijen
    marijen Member Posts: 2,181
    edited March 2016

    Yes, next time I interview a new doc, I'll ask if they are functional!! lol

    I'm going to check - very expensive? There are at least three estrogen, all three or?

  • Ddw79
    Ddw79 Member Posts: 217
    edited March 2016

    you will know because generally they don't accept any insurance

  • tinkerbell49
    tinkerbell49 Member Posts: 176
    edited March 2016

    Hi my mri got moved up to March15 something to do with me getting my period today. I'm glad I'm getting it over with sooner. My anxiety is starting again. Keeping my fingers crossed.

    Ddw if you have no estrogen then why take an estrogen blocker. All this is so confusing.Shocked

  • djabi53
    djabi53 Member Posts: 97
    edited March 2016

    Dear friends - I am being monitored every 6 months for bilateral faint calcifications - birads 3. I am 63. Last year was my 1st mammogram - they have nothing to compare. Last year, had biopsy in one breast because calcs were starting to form a line - benign fibrocystic changes - no abnormal cells. Last week I had my 2nd six month follow up and was told by the radiologist - no changes. Come back in 6 months. The radiologist I saw last August told me she is not worried about my calcs - they are scattered - and it is their protocol to follow all calcs for 2 years. The nurse from my GYN office called today to tell me I need to go back in 6 months. She said the report said no changes - they are monitoring for stability. She also mentioned the report said "loosely grouped" calcifications. Different radiologist said "scattered" last August. Is "loosely grouped" more worrisome than "scattered." I'm wondering if I should request a biopsy - although they told me these don't warrant a biopsy. I am going to a breast imaging center of excellence where all radiologists are fellow trained. But hearing the word loosely grouped this afternoon instead of scattered has me worried again. Thanks for any comments. Frankie

  • Ddw79
    Ddw79 Member Posts: 217
    edited March 2016

    I would feel

    Comfortable with what the pros told you Frankie. They are so " on it" when they have reason to consider it cancer ( as in my case within a week all the diagnostics and lumpectomy done , because the calcifications were truly worrisome. I'd be doing a happy dance right now if I were you because as I said, it sounds and looks ok to them and they know the difference between birads 3 and 4. I think you could rest easy

  • momoschki
    momoschki Member Posts: 218
    edited March 2016

    I'm guessing that the difference between "scattered" and "loosely grouped" is just semantics, especially since you've had two different radiologists. What is most important is that you were told there are no changes and that the calcifications are stable. I think you'd be fine to wait 6 months

  • djabi53
    djabi53 Member Posts: 97
    edited March 2016
    I found this information in a 2015 article:


    Distribution modifiers (grouped or clustered, linear, segmental, regional, diffuse) are used to describe the arrangement of the calcifications. Historically, the termsgrouped or clustered were used to describe suspicious calcification. Now, these terms are neutral and may be used to describe benign or malignant processes.Grouped or clustered should be used to describe calcifications that occupy a small volume (< 2 µL) of tissue.[15]


    So perhaps my calcifications are "scattered," but also occupy a small volume and that is why they are using the words "scattered" and "loosely grouped."


    Thank you so very much Ddw79 and momoschki for your replies/reassurances - I think you are both exactly right. Praying for continued good news for all of us.


    Tinkerbell49 - I'm so glad your appointment is moved up for you. Check in with us and let us know how you are doing as it gets closer.


    Frankie







  • alicki
    alicki Member Posts: 85
    edited March 2016

    hi,

    Just stopping by, Time for mammo and ultrasound soon (6 April). Hère we go again. Feeling relaxed.

    I remember from last october that qui te a few ladies are due for tests in March, how are you?


    Best

    Alicki

  • momoschki
    momoschki Member Posts: 218
    edited March 2016

    April 11th for me-- ultrasound this time around. I feel like I'm caught in a revolving door. Five years of this! Best of luck to us all

  • trish01254
    trish01254 Member Posts: 30
    edited March 2016

    mine is the 16th. Hope just mammo. Had the mri last oct so shouldn't be any questions on pictures. Taking my tamoxifen nightly.

  • alicki
    alicki Member Posts: 85
    edited March 2016

    Dear Ladies,

    Lovely to hear from you all! I have a question. I went through 4 years of nightmarish B9 issues with inflammations and breast reduction complications etc-

    I only have usual ductal hyperplasia but it's florid and widespread and they are still watching me carefully because of the damage caused by the breast reduction, which was repaired but, even if we got rid of most of the fat necrosis, it's still a mess in there....and weird things keep popping up.

    I need to discuss with my doc, a surveillance plan for 2016 and 2017. (If I'm ok beyond that, I can probably go back to once a year).

    Any ideas? I am allowed to have MRIs, mammos and ultrasounds, our private insurance is a little different where I live.

    I was thinking mammo and ultrasound now in April and then MRI in October. I have an appointment for 21 March to discuss with the doc. BUt I have already made an appointment for 6 April with the breast centre because they know me well....(I just need to confirm which exam I will be doing...!)

    MOMO: I'm not quite sure, but are you the one who had a Breast reduction to lower risk? I know someone went that way too. Could you give me any advice on how to go about surveillance now that the operations are over?

    Trish or anyone else: if you have ideas, I'm happy to hear them.

    DW79: So glad you're doing ok on your Evista medication. I know the idea of taking it scared you out of your wits. Glad you're ok

    THanks

    Alicki

  • Ddw79
    Ddw79 Member Posts: 217
    edited March 2016

    Thanks Aliki! You are so right about me and Evista.


    I have the same follow up quandary so glad you posted.


    What I don't understand is why I've never been referred for follow up by US. I have ADH. Do you ladies think I should ask about this ? I never had a lump. Would US pick up linear calls? Or maybe they do this to detect a lump? Any thoughts ?


    Why are you all doing this?

  • momoschki
    momoschki Member Posts: 218
    edited March 2016

    Alicki,

    Yes, I'm the one with the bilateral reduction following the excisionsal biopsy to reduce risk (if I'd known about the reduction as an option earlier, I definitely would have had the two procedures simultaneously). Not all doctors are on board with this, but I found a great oncoplastic team and proceeded after having done a lot of research. I was concerned about scar tissue and/or possible necrosis confounding future screenings, but nearly 5 years later this has not been problematic.

    My BS, whom I see twice a year, has me on the following schedule:

    Fall: mammo, spring: ultrasound. Then, following year:

    Fall: mammo, spring: MRI . And so on...

    At my last visit, I asked her how longwe would continue this and she said that perhaps we might consider going to once a year screenings at some point soon if everything continues to be ok. As much as it would be a huge relief not to have to go through this every six months, I think I'm more comfortable with the 6 month drill since risk actually goes up over time. I also take Evista.

    Ddw, are you only getting mammos? How often? I'd feel better adding US and MRI to the screening routine-- they see different things. What is your doctor's explanation?


  • tinkerbell49
    tinkerbell49 Member Posts: 176
    edited March 2016

    we'll my appt is now on the 15th next Tuesday. I found out yesterday I will be getting a diagnostic mammogram and ultra sound in the morning and an mri in the afternoon. I guess I'm getting all three. This is my first follow up. I don't know if the Dr's are not communicating or if this is how they do it. My onc referred the mri and surgeon the mammogram and ultrasound. It's going to be an all day affair. Praying for good results..

  • tinkerbell49
    tinkerbell49 Member Posts: 176
    edited March 2016

    I heard that ultrasounds are very good if the technician is good and takes their time. Sometimes even better than mri"s. I think I feel comfortable having all three, maybe next 6 month will only be ultrasound and mammogram. I had adh hopefully it won't come back or anything worse.

    Good luck to all of us!!!!!

  • tinkerbell49
    tinkerbell49 Member Posts: 176
    edited March 2016

    Good luck to all of us!!!!!

  • awb
    awb Member Posts: 213
    edited March 2016

    Ddw-----I just get alternating MRIs and mammos, my facility only does US if something suspicious shows up on the other tests. (won't do them routinely). glad to hear you are tolerating the evista well.

    Anne

  • trish01254
    trish01254 Member Posts: 30
    edited March 2016

    has anyone had 3d mammo yet

  • Ddw79
    Ddw79 Member Posts: 217
    edited March 2016

    Thanks for the info . My doc are mixed about this follow up. I really don't know what to do going forward . I had one follow up mammogram for ADH last October and that's it.

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