scared and frustrated

Saltylibrarian
Saltylibrarian Member Posts: 12
edited March 2014 in Breast Cancer #1
I put off egg harvesting because I was told by my oncologist that I should not put off chemo for three weeks. I was in agreement in opting for cancer treatment over fertility treatment.

I was told I was HER+ and my treatment was supposed to be Herceptin, Carboplatin, and taxotere. My insurance said my HER+ was borderline. They did another test (FISH?) and said that I am NOT HER+. My oncologis is on vacation. I am heading into my third week of waiting for this to start. No egg harvesting and no treatment. This blows!

I work with the public and feel like punching the next library patron in the face. I know that is terrible but I am so stressed out right now.

Ok, now I just want to cry.

I'm sure I'm not the only one who has dealt with this. :(

Comments

  • padee6339
    padee6339 Member Posts: 763
    #2
    I haven't
    I haven't had to deal with this, but I feel bad that you are going through this. I will keep you in my prayers.
    Peace - Pat
  • MAJW
    MAJW Member Posts: 2,510 Member
    #3
    Hang on.......
    Salty, it's okay to want to punch someone! Been there......but haven't done it yet......there are a few I'd like to punch!

    Is there another oncologist in with your's that can explain the latest testing? That is odd, ones says you are HER+ and one that says otherwise......because being HER+ and not being that, determines your chemo "cocktails." If you are NOT HER+ that means Herceptin and Carboplatin isn't for you...

    I hate that you are having to do all this waiting.....that is just tortue piled on top of everything else.......
    Keep us posted and I wish you the best
  • rrogers34
    rrogers34 Member Posts: 135
    #4
    Her+ Borderline
    My oncologist said that 2.5 was borderline. Mine was 4. he called it over-expresseive. I hate hearing that those of us who are TRYING to battle this disease, get such conflicting information. I also, know what it is like to want to get this journey on the road. The faster you begin, the sooner it is overwith. stay strong, will be thinking about you.

    Hugs and Prayers
  • MyTurnNow
    MyTurnNow Member Posts: 2,686 Member
    #5
    I feel for you. I remember
    I feel for you. I remember back to getting my diagnosis and just wanting to get the treatments over with. I didn't think they would ever start. Well, they did and I finished treatments on Christmas Eve. You'll get started soon and they will be over so you can continue to live your life. Just make sure you're getting the treatments for your type of bc. Good luck and keep us posted.
  • mimivac
    mimivac Member Posts: 2,143 Member
    #6
    I understand
    I, too, was borderline at first. IHC testing put my HER2 expression at "2+", FISH testing made it negative. Am I understanding correctly that this is your second FISH test? Did they send it to 2 different labs for these results? I'm sorry you're going through this.

    As for egg harvesting, I, too, opted out. I didn't want to go through the stress of yet more procedures. Well, my period returned 7 months after chemo ended. So, don't give up hope. Many young women re-gain their fertility. There's a site for younger women with bc with many discussions about fertility and other issues affecting young survivors: www.youngsurvival.org. Go to the Bulletin Board and the General discussion group to introduce yourself. I know you're upset and frustrated right now. Things will get better.

    Mimi
  • jbug
    jbug Member Posts: 285
    #7
    HANG IN THERE!!!!
    It's so frustrating to wait when you just want to start the battle! Your right, it does blow!

    By the way...you can just cry, it's ok! Lots of luv and cyber hugs. Praying that you get some solid clarification AND can start the battle asap!

    God Bless...
    Julie
  • Saltylibrarian
    Saltylibrarian Member Posts: 12
    #8
    mimivac said:

    I understand
    I, too, was borderline at first. IHC testing put my HER2 expression at "2+", FISH testing made it negative. Am I understanding correctly that this is your second FISH test? Did they send it to 2 different labs for these results? I'm sorry you're going through this.

    As for egg harvesting, I, too, opted out. I didn't want to go through the stress of yet more procedures. Well, my period returned 7 months after chemo ended. So, don't give up hope. Many young women re-gain their fertility. There's a site for younger women with bc with many discussions about fertility and other issues affecting young survivors: www.youngsurvival.org. Go to the Bulletin Board and the General discussion group to introduce yourself. I know you're upset and frustrated right now. Things will get better.

    Mimi

    thank you
    thank you all for you support. It is greatly appreciated.

    Yes, the second one was a FISH test. I was also thinking along the same lines as you in terms of the stress of harvesting. So perhaps either way I still made the right choice.

    I just heard from my Oncologist and will be meeting with her on Monday.
  • aysemari
    aysemari Member Posts: 1,596 Member
    #9
    So you reaally are a librarian?
    Those bloody insurance companies can be so cut throat... I have same chemo as you
    and Herceptin. Starting today. I am very sorry that you had to put off your fertility treatment.
    And have to deal with this instead... cancer is so disruptive. That's why it needs to be stopped
    in it's tracks. Did your oncologist recommend to you that you have some eggs harvested
    prior to chemo?

    Don't feel bad about you anger issues. I felt the same, everyone's issues seem nothing
    compared to what you have on your mind, who cares if you are missin 0.2 cents in dividends..
    I just want to scream but instead I brace myself and remember the little luxurious worries I
    used to have prior to cancer.

    It will take time to process this major change in your life.. I feel like someone is yanking
    me off the path I had chosen towards a less inviting and dark path.

    Not to be naughty but picturing someone getting punched by a librarian, really made me
    laugh... Excuse me where can I find.... POW - so unexpected.

    Ayse
  • e_hope
    e_hope Member Posts: 370
    #10
    Sorry to hear what your
    Sorry to hear what your going through. I haven't dealt with that exact issue, and luckly for me I had decided I was done making my family the year before my 36 year old diagnosis. that being said, I do understand your stress! And the feeling you just want to scream, You want all answers now and the oncologist just never feel anything is a hurry! I too work with the public and that can be a very stressful and challenging thing,,, now and after you have finished treatment.

    I wish you well, I found a journal is very helpful (never wrote in one before) I used it alot to write my fears, fustrations in.... Maybe that will help.. :-)
  • Megan M
    Megan M Member Posts: 3,000
    #11
    padee6339 said:

    I haven't
    I haven't had to deal with this, but I feel bad that you are going through this. I will keep you in my prayers.
    Peace - Pat

    I didn't have to go thru
    I didn't have to go thru what you are. I am sending you prayers!

    Megan
  • Saltylibrarian
    Saltylibrarian Member Posts: 12
    #12
    e_hope said:

    Sorry to hear what your
    Sorry to hear what your going through. I haven't dealt with that exact issue, and luckly for me I had decided I was done making my family the year before my 36 year old diagnosis. that being said, I do understand your stress! And the feeling you just want to scream, You want all answers now and the oncologist just never feel anything is a hurry! I too work with the public and that can be a very stressful and challenging thing,,, now and after you have finished treatment.

    I wish you well, I found a journal is very helpful (never wrote in one before) I used it alot to write my fears, fustrations in.... Maybe that will help.. :-)

    lol
    Yes, I truly am a librarian. In the land of stereotypes I don't present that way. In fact, I'm the head librarian and manager. Often people come to me and ask "where is the librarian". lol Funny

    Thanks again for the feedback! What I have learned is that the IHC test was borderline positive and the FISH was negative. I just want the correct treatment.

    I set up a case manager with my insurance company. She is a nurse and very awesome. It's a free service. She is the person who recommended me to this site.

    It has been very helpful!

    xoxo to you all and all your cures.
  • jnl
    jnl Member Posts: 3,869 Member
    #13
    Saltylibrarian said:

    lol
    Yes, I truly am a librarian. In the land of stereotypes I don't present that way. In fact, I'm the head librarian and manager. Often people come to me and ask "where is the librarian". lol Funny

    Thanks again for the feedback! What I have learned is that the IHC test was borderline positive and the FISH was negative. I just want the correct treatment.

    I set up a case manager with my insurance company. She is a nurse and very awesome. It's a free service. She is the person who recommended me to this site.

    It has been very helpful!

    xoxo to you all and all your cures.

    Wishing you the best in your
    Wishing you the best in your treatment! Sending you prayers and lots of hugs!

    Leeza
  • LadyParvati
    LadyParvati Member Posts: 328
    #14
    Saltylibrarian said:

    lol
    Yes, I truly am a librarian. In the land of stereotypes I don't present that way. In fact, I'm the head librarian and manager. Often people come to me and ask "where is the librarian". lol Funny

    Thanks again for the feedback! What I have learned is that the IHC test was borderline positive and the FISH was negative. I just want the correct treatment.

    I set up a case manager with my insurance company. She is a nurse and very awesome. It's a free service. She is the person who recommended me to this site.

    It has been very helpful!

    xoxo to you all and all your cures.

    FISH is the better test
    It's really good that they are running more tests. There are "quickie" tests and there are not-so-fast tests. The ones they run first are the quickie ones (e.g., IHC), but there's a higher error rate associated with some of them, particularly in regards to hormone-sensitivity and HER expression. When the results are not absolutely unequivocal, they run the longer tests such as the FISH & Oncotype DX to ensure accuracy in your diagnosis and treatment. I had the same thing happen because the doctors wanted to be absolutely sure that I'm really triple negative.

    It's really frustrating though, isn't it?! You just want them to give you definitive information so you can make decisions and get on with things!

    Hang in there!

    Sandy
  • Saltylibrarian
    Saltylibrarian Member Posts: 12
    #15
    LadyParvati said:

    FISH is the better test
    It's really good that they are running more tests. There are "quickie" tests and there are not-so-fast tests. The ones they run first are the quickie ones (e.g., IHC), but there's a higher error rate associated with some of them, particularly in regards to hormone-sensitivity and HER expression. When the results are not absolutely unequivocal, they run the longer tests such as the FISH & Oncotype DX to ensure accuracy in your diagnosis and treatment. I had the same thing happen because the doctors wanted to be absolutely sure that I'm really triple negative.

    It's really frustrating though, isn't it?! You just want them to give you definitive information so you can make decisions and get on with things!

    Hang in there!

    Sandy

    thanks for the support and
    thanks for the support and info.

    I am definitely HER- so my new treatment plan is FEC which starts on Friday. I'm not too nervous more like anxious.

    Ayse how are you feeling?

    xo to you all
  • aysemari
    aysemari Member Posts: 1,596 Member
    #16
    Saltylibrarian said:

    thanks for the support and
    thanks for the support and info.

    I am definitely HER- so my new treatment plan is FEC which starts on Friday. I'm not too nervous more like anxious.

    Ayse how are you feeling?

    xo to you all

    Hi Salty..
    Thanks for asking.
    Friday I had my first chemo Saturday I was ok but sunday monday
    not so. Terrible head ache and nausea.. but I am getting good at
    popping pills =)


    Ayse

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