help me ask the right questions

1Cathi
1Cathi Member Posts: 1,957
edited June 2014 in ILC (Invasive Lobular Carcinoma)

Hi Ladies, new to this thread but have other posts, so you may already know some of my story, anyway I was diagnosed w/ILC last June (left breast), lumpectomy, 33 rad treatments, 3-5mo of Tamoxifen off & on, totally off it now(side effect were crippling) my onco gave me no other choices, except to say I had to choose life or quality of life and that was that, anyway I have now had in past year 4 other biopsy (2 past tuesday -right breast) waiting for results, as I have mentioned before I have never been totally happy w/anyy docs, treatment nor my own handeling of all this, but yesturday finally after a year of trying I have been able to get into a highly recommended onco/breast surgeon here at powell cancer center, I have been forwarned he is not really warm&fuzzy but tereffic, from reading all of your posts and stuff I think I know, it seems like ILC is a tricky thing, w/high recurrance rate, I have already been told I am very high risk, LCIS, ALH, adenosis, fibrodema, you name it one or both breasts have it. I am so thinking about bilat, mentioned it to current docs they say no lets wait7watch, we can treat what ever comes along. My question is what should I arm myself with, what do I need to know about ILC, I am 47 w/no family history of BC, however my mom died of liver cancer unknown primary??? Any advise what to ask new doc, I am now in the process of gathering all my past reports I have very few of them. Wahat is the real dif between ILC & ductual, I need 7 appreciate all the help I can get. Thanks & xoxoxox to you all

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  • CaliforniaKate
    CaliforniaKate Member Posts: 258
    edited August 2007

    Cathi, I think one question I would ask is if I could be put into chemical memapause, and then put on an A-I. See what kind of reaction you would have from that. And if you had to go off it, you could always stop the chemical menapause, since it isn't permanent. If the A-I works for you, you could than have your overies out if you chose. Kate

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  • 1Cathi
    1Cathi Member Posts: 1,957
    edited August 2007

    As I have been reading the many posts I have heard many ladies talking about having their ovaries out, I have wondered what that is about, I know it will stop / slow the estrogen production, would that be a suggestion in addition to bilat or alternative for. I really so just want to minimize my future risk as much as possible, my "past' onco gave no other suggestions or choices other than the Tamoxifen, he said thats it for premenapause woman, I wish I could see the new one before the 28th, but I do feel so fortunate that after finally a year he is accepting new patients again, I am making a list of questions /suggestions this time and I hope to be educated & armed when I see him, and still waiting on the biopsy results from my surgeon from last Tuesday, I made a post in another spot, that on friday I could not stand it anymore, I could get no answer at surgeons office, so I called the hosp wher mammatone was done, the tech told me both spots were benigne and surgeon had the results on Wednesday, I can't understand why she would not call if that is the true case, she knows my level of fear & anxiety, so while I think I should be happy, I am not yet, and if I do not here from her and I see her on Thursday and she says Benigne, I just may loose it, HOW CAN YOU NOT CALL!!! Anyway I really feel good inside about seeing new onco/breast surgeon, thanks for your help!!! xoxoxoxox

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  • marshakb
    marshakb Member Posts: 1,664
    edited August 2007

    Cathi, I can so relate to you and your frustration. I am having the same exact issues. I am one step away from telling my surgeon how much I resent him playing God with my life. Glad you have someone else. I'm working on trying to find someone to listen to me also. Hugs, Marsha

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2007
    I feel bad that you girls are going through this! As if you need more cra* to deal with! I guess I was lucky...none of my Dr's hesitated when I questioned them about a prophyl mast. They all agreed that because I had ILC AND LCIS in the "bab boob" - that I was at higher risk of getting it in the "good boob".

    Cathi -
    It's great you have an appt with a new "set of ears" - and hopefully he'll actually listen to you! LOL Keep us posted.

    Marsha -
    What the heck! Keep "interviewing" Dr's, until one of them listens to you. Don't let them push you around...hang in there.
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  • 1Cathi
    1Cathi Member Posts: 1,957
    edited August 2007

    Before I started coming here I thought I was over reacting, being stuipd thinking my doc's were just pushing me aside, I am so sorry to know this is common place, but I guess releived to know I am not over reacting. I am so mad at my current surgeon right now, but I think it is good because it has truly motivated me to attain knowledge and be proactive, I am on my way to the hospital later today where I had previous surgerys to get every single report they have from this past year, lots of good reading tonite I suspect. So I am sure i'll have many more questions. I wish we all could have doctors we trusted with our lives.

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  • marshakb
    marshakb Member Posts: 1,664
    edited August 2007

    Hey Cathi, you know what I just realized? You and I are having problems with the surgeons and we are both in the state of Florida. No other gals seem to be having our problem. What is up with that you think? Marsha

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  • 1Cathi
    1Cathi Member Posts: 1,957
    edited August 2007

    Marsha, I guess I didn't even realize you were also in Fla. not sure what that means but makes you wonder, I so hope that the new guy I see on the 28th is all I hear he is, I have been forwarned he is not "warm & fuzzy" not a hand holder, but he will, listen, talk & explain, thats really what I am after, I am sick of feeling like all I am worth is the $30 co-pay, and no more than the 15 minute time slot I was given.

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  • 1Cathi
    1Cathi Member Posts: 1,957
    edited August 2007

    Well it was off to the surgeon this AM for the biopsy results, just as I thought she has had the results, and no call to me before hand, waited over a week to here both areas benigne, well I thought that would be good news of coarse I was furious I had to wait so long, we asked for the pathology report and went on our way, on the drive home I begin to read the reports, I was sent to have 2 solid masses biopsied 11 & 3pm (that one of greates suspicion) well they did 11 & 10 went no where near the 3-oclock, thats the one we have been watching since January, I am so upset, my husband is trying to get surgeon on phone now, of coarse he gets she is with patient will have her call back, I can't believe this, what the h$#@#

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  • 1Cathi
    1Cathi Member Posts: 1,957
    edited August 2007

    AFTER ALMOST A WEEK OF MY HUSBAND TRYING TO T/T THE SURGEON, we gat a call this AM from the hospital that did the mammatome, they want me in @ 3PM today, doctor thinks the 3-oclock position should be re-evaaluated, and get this, the ultra sound is of NO CHARGE TO ME??? I don't want to go, my GP has me scheduled on friday for US @ same place That gave the Birads4 2 weeks ago, my husband says we should go, as back up, and just incase they did do something wrong they can't say we refused to do follow-up as doc recommended. I see the new onco/breast surgeon on the 28th can't wait.

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