More info about direction, more fear

Anonymous
Anonymous Member Posts: 1,376
edited June 2014 in ILC (Invasive Lobular Carcinoma)
More info about direction, more fear
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2011

    Hi all,

    I met with the first oncologist Friday--not sure when I'll get a second opinion; I feel like I should just go with her and worry about interviewing breast specialty surgeons later. She came highly recommended.

    She said I tested hormone receptor positive (PR/ER?) which she said was really good--it seemed to really please her. I liked her a lot.  She also said I didn't necessarily need to get a mx first and then follow with chemo--I could do it the opposite order.  Also she agreed to let me go dose-dense and said I could handle it fine.  She said I was incredibly healthy and strong (I knew that--which is why this whole dx is a complete shock). I was confirmed pre-menopausal -- I'm 53. Does that change outcome of anything? Should I not care about that either, just get tx started asap? 

    She freaked me out because she kept feeling a place on my collarbone/neck and finally told me because I was so thin it was a blood vessel--she could feel the pulsing blood leaping through it (no surprise since I was crying with fear before the exam).

    Anyway, here's my concern today: she ordered a PET scan -- I'm scared about the outcome because it was in 6/11 sentinel nodes; I'm panicked it's everywhere and too late for me.  I'm stage II, grade I.  She said if the PET showed something I'd go right on hormone therapy immediately. Does that sound like standard op procedure--that, then followed by chemo (I think that's what she said would happen?)   Please help me not to be fearful of what the PET scan might show.  I'm just having a memory from when my late husband's oncologist told him his cancer was "everywhere", and basically there was no hope.He died 16 years ago, last dx wasOct so the leaves and sky and everything remind me of that awful hopeless time.

    Thanks all--I"m shaking--

    C

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  • kira1234
    kira1234 Member Posts: 3,091
    edited October 2011

    claire, I know how scared you are right now. Having the PET scan done is normal procedure when lymph nodes are involved.

    As far as going right on hormone therapy if the cancer is elsewhere, I can't answer that. For now just take it a day at a time while the Onc. does what is needed to make any recommendations. Just to add one more thing, you can always have a second opinion. In my case I spoke to 2 different Onc's before I chose the one I was most comfortable with.

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  • YaYa5
    YaYa5 Member Posts: 667
    edited October 2011

    claire, many people will tell you this and it's the absolute truth:  waiting is the hardest part of this whole journey.  kira is right ... a PET scan is normal as a baseline before starting treatment.  it doesn't have to mean that there's a problem.  you'll feel so much better when you get the results from the PET scan.

    i'm sorry about how this time of year reminds you of so much sadness. i understand.  please come here often and get your questions answered and the support you need.  you don't have to go through this alone.  {{{{{hugs}}}}}

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited October 2011

    Claire

    big hugs....

    I think the poster above is right-if there are positive nodes, they do a pet scan.... it really makes sense to gather all of your info now at the beginning, although waiting for test results is very stressful.  This is the best time of all to employ xanax or ativan. Honestly, the only time I ever used those drugs was waiting for test results.  Your doc sounds thorough and that is what you want

    There are many people here who did treatment first then guess what?  No sign of the original tumor because the treatement worked!!  So, you may be able to do that and it may be that you have a different surgery.  

    It is good you like your doc--that is a great start.  Remember, they have come a million miles in breast cancer and they do use the word curative..... there is no reason that cannot be you.  Just keep one foot in front of the other, do the tests, take the meds if you need them, and we can all promise you, things will get better.  This part, the gathering of info, the testing, the thinking about more tests, the trying to read into how they say things (we all do it!) can be exhausting and so very stressful.  

    You are on your way...just a little more info gathering from the scans and you will have the whole picture and can make a plan that works for you.

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  • elmcity69
    elmcity69 Member Posts: 998
    edited October 2011

    ((((((((sharon)))))))))

    i'm so sorry you're going through this - i know how much it SUCKS. (i hate that word and phrase, but nothing else seems to fit, really).

    as jenny notes, you aren't having any other sx, so likely it will be all clear.

    i wish there was something to say to help the anxiety. holding you close in thought and prayer, girlfriend! let us know.

    xo

    j

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2011

    Hi all, thank you for your support...I guess I'm just scared--a lot. I am taking xanax at times but even with such a low dose and only taking .50 a day (sometimes .75 depending) it stops me up if you know what I mean, so trying  not to use it except one .25 at night to sleep and stay asleep.

    I don't want to die.Not right now. 30 years from now, maybe... I know that sounds stupid and obvious but there's the root of our fear, right?  I want to keep teaching which I love at the university that I love, I want to see my first grandchild, I want so much more time with my husband--I feel we wasted 7 years because he worked in DC while I lived in AZ...he couldn't find work to match his skills here but still...I know--regrets aren't helpful but they are very real.  

    I'm afraid my doc will call and tell me that it's everywhere.  I haven't walked into a medical center in the last 3 weeks where the news was good for once.  I see everyone else's dx and status and no one has posted 6/11 nodes, 2 c. tumor. I am stage II I know that now, and grade I but that doesn't seem to make much difference. 

    I still can't believe this is happening to me and how differently my life is going to change and soon.  I feel so, so scared and alone right now...

    C

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  • PeggyDixon
    PeggyDixon Member Posts: 125
    edited October 2011

    Dear Claireinaz......I understand how you feel, having been there myself. What helped me then was to hear positive stories so I hope mine gives you some comfort. Of course we are all different, but I had 12 positive nodes and next month it will be 6 years since my diagnosis. I had a large ILC tumor too, and so far so good. I had surgery and rads and am on Aromasin now after 2 years on tamox. Life is pretty good!

     To take your mind off things, can you tell me what you teach and where you are? I was in Az (Flagstaff) at a conference once and loved it so much - we drove down through Oak Creek Canyon and Sedona, and took the steam train to the Grand Canyon. I didn't get to spend much time in Phoenix, just a change of plane. Take care and I look forward to hearing from you!

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  • nanadeb
    nanadeb Member Posts: 169
    edited October 2011

    Claire I am so sorry you have to join us here and go thru this. It is a very scary time . And you have every right to be afraid (((hugs))))

    I too am 53 and just had a BMX Aug 11th. I wish now they had done chemo first.

    I am so sorry about your husband....No woder you are so afriad.

    But its the not knowing that really is the worst. Make sure that you get a copy of your PET results so you get the truth up front. Not little by little like I did (see the post I just posted here before yours)

    Xanax works wonders for me before procedures and to help shut my mind off at night.

    THATS when I just think about everything WAY yo much...(((hugs)))

    DebbiMy blog ~http://atoosassygal.blogspot.com/

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2011

    Dear Debbie, We will both be more beautiful because of this.  I know we'll have our down days, but I'm grateful I found my tumor (what an ugly word, I hate that word!) in the weird way I did.  I did think I was doing everything right: bikram yoga, strength training, organic/nearly vegetarian diet, 10 miles walk/hike every week, etc etc yadda yadda yadda...but this partycrasher of mine isn't staying regardless.  I keep thinking that my case might have been worse had I not kept myself in shape, so I'm patting myself on the back for that one.  I have lots of xanax and an unfilled prescrip from my onc.  I try not to take it too much because it stops me up.  But I do take a half to sleep at night along with advil. 

    Can I ask why you wish you had started with chemo instead?  My gut tells me that is the right direction to go and my onc says it doesn't make any difference in my overall recovery, so I'm finishing with BMX and recon at the same time, I hope.

     Thanks for reminding me to get a copy of my PET; I need one anyway for my files.

    Hang in there.   I don't think I'll mind being bald either, just hate to lose my eyebrows, for some weird reason.

    XXOO

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