I'VE BEEN STRONG UNTIL YESTERDAY AND NOW I'M JUST PLAIN SCARED!!

lovelylola
lovelylola Member Posts: 279
edited March 2014 in Breast Cancer #1
Yesterday I finally got my Oncotype score and it was 33. I've been pretty confident up until that point that I may not need to have the chemo. I had the bilateral, my tumor was 2.2 with no nodes, I'm ER+ and will take the Arimidex. Was really praying that it would be enough. I meet with the onco doc today, had the nurse read me the results yesterday and then picked up a copy on my way to the Look Good/Feel Better workshop.
It's finally hit me big time. Thank god it's furlough Friday and I don't have to go into work. My appt w/the onco doc isn't until this afternoon and I'm going to call a friend to go with me. I don't want to keep my daughter from work, she is self-employed and has taken a lot of time off.
I'm sitting here at the computer crying because I know this site is where I need to be right now. I don't want the chemo, I just want this to be over. I think I've known that these feelings would be surfacing soon but didn't expect them to be so scary and hard. Maybe it's because for the first time I'm giving in to them instead of hiding this from my family. My children have already lost their brother and grandmother to cancer and I guess I've been trying to protect them.
I need HELP! The nurse said in reading the report it indicates that with Arimidex alone I'm at a 78% survival rate but didn't say anything about how chemo would change that - Going to be the first question I ask the doc today. Have any of you had a score in that range and chosen not to have the chemo? I'm trying to go into my "gathering info mode" to keep my sanity until the appt. I know I can do the chemo if I need to but sure as H..L don't want to if it isn't going to improve my score much.
PLEASE - I need some reassurance and support right now. Lola
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Comments

  • cindycflynn
    cindycflynn Member Posts: 1,132 Member
    Lola
    I'm so sorry for your disappointment and the fear that must come with it. I'm still awaiting my Oncotype test and am trying to be cautiously optomistic that I will be able to avoid chemo, so I can definitely understand the level of your feelings.

    I know you'll feel better once you talk to your doctor. I know that I've been inspired by the strength of the women on here that HAVE gone through chemo and although it hasn't been a cakewalk have come through the other side to live wonderful lives.

    Try to keep breathing and know that we're all here for you to share your burden and make it lighter for you to bear.

    Take care,
    Cindy
  • jennN
    jennN Member Posts: 40
    strong til now
    Lola,

    I hope you are feeling stronger today. I was told I shouldn't even have an onco type because it would be a waste of time due to my type of cancer and Her/2neu + gene. I was stage 2 and didn't have cancer in my lymph nodes. I'm ER/PR+ and will take something similar to Arimidex when I'm done with chemo. I was hoping not to do chemo and also toyed with the idea of just doing the additional therapy. Long story short...I'm doing chemo...and just had my 2nd round a week ago. I was told it would lessen my reoccurrance to 5-10% by doing everything out there...including the mastectomy.

    Lola, I'm not going to lie to you...it's not fun. You can get through it though. Let people help you. I have a wonderful support network here...family and friends who are helping with meals, cleaning, etc.

    I know I felt an out of body sensation when I finally agreed to do chemo. My first treatment I cried. I was so glad they put me in a privite corner. It didn't hurt...it was jut really emotional.


    I'm here whenever you need to talk.

    Jen
  • pitt
    pitt Member Posts: 387
    I know this is hard as I
    I know this is hard as I have just lived what you're going through right now. I actually had a "panic attack" in my oncologist's office as she was telling me that because of my age she strongly recommended chemo. No one wants to do it. But remember that your goal is to beat this beast and survive. Try not to spend your energy worrying about the second bullet...focus on today and just getting through your appointment. You know you will do whatever you need to in order to get past this thing...just stay strong and go to your appointment with a list of questions. Knowledge is power and the goal is to win! Good luck today. Pitt

    PS I'm in chemo now. I've had a bad week but I'm having a terrific day and I'm halfway through. There is light at the end of the tunnel and you just have to try, although it is hard sometimes, to stay pointed forward. Look ahead and move with strength.
  • mimivac
    mimivac Member Posts: 2,143
    Lola, you can do this
    OK, I know the oncotype is a disappointment because we all want low scores. But your chances of survival are still excellent. This score indicates that chemo might really work for you in upping that survival rate even more. For people with low scores, chemo doesn't do much to lower it further. The oncotype really tells us who would benefit from further treatment. It's a more sensitive tool than we used to have when we decided treatment on pathology of the tumor alone. You can get through this. Your stats are still very, very good. Don't worry. Chemo is very doable and your children are not going to lose you. Ask your doc. all the questions you have right now. I know you're mad. It's understandable. Be mad. It sucks. Cancer sucks. But it won't get you in the long run. Hugs.

    Mimi
  • fauxma
    fauxma Member Posts: 3,577 Member
    I am so sorry that your
    I am so sorry that your score wasn't lower, way lower. I don't know what to advise you. Your oncologist will be able to give you those answers about how much chemo would improve your chances of recurrence. I think, like you, I would want to know if the improvement is worth the chemo, but I think that it does raise that number significantly. Chemo is a very scary thing, but in reading these posts I see that it is doable. Not fun, not easy, but doable. Whatever decision you make, my prayers and positive thoughts are coming your way.
    And crying is a good release for us. It is so easy to bottle up all the emotions and be strong for our family, but then it can just explode in us. Keep us informed and use us for support as much as you need to. It's alot to absorb right now. And waiting really does suck.
    Stef
  • MyTurnNow
    MyTurnNow Member Posts: 2,686 Member
    Lola, we're here for you.
    Lola, we're here for you. If chemo will greatly improve your recurrence percentage, then do it. It's not as bad as it once was and in fact is very doable. It's strictly your decision and no on can make it for you. Let us know what your onc suggests and know we're here for you. Good luck.
  • marilyndbk
    marilyndbk Member Posts: 238 Member
    I am so sorry for what you
    I am so sorry for what you are feeling. Learn all you can and make the best decision for yourself. We are stronger than we think. My thoughts and prayers are with you. Marilyn
  • tasha_111
    tasha_111 Member Posts: 2,072

    I am so sorry for what you
    I am so sorry for what you are feeling. Learn all you can and make the best decision for yourself. We are stronger than we think. My thoughts and prayers are with you. Marilyn

    Lola
    I went through it too, My surgeon bombarded me with statistics... You'll have a 5% better chance of survival after 5 years if you do this... an 8% if you also do this.........HELL it was too much to take in........He never mentioned if I had any chance after 6 Years!........

    We do what we have to......... I hope it all turns out OK for you.

    Hugs jxxxxxxxxxxx
  • MAJW
    MAJW Member Posts: 2,510 Member
    Hang on Lola...
    You're feelings are quite normal and very understandable....they are validated. I know chemo is scary........I was scared out of my mind! To make matters worse, I wasn't expecting chemo at all.....I was under the impression that after my lumpectomy, radiation was all that would be needed.....I had a 2.2 cm tumor, clean, clear margins and no lymph node involvement.....BUT when we went to the Medical oncologist and he laid out the odds of a reccurence with and without chemo, it was a no brainer for me....BUT........I actully thought I would lose my mind on the way home because I wasn't expecting chemo...I finally let it all out......my husband took my hand and said....(God love him)"Are you alright?" I screamed " H--L NO I"M NOT ALRIGHT, if I were alright I wouldn't have cancer and need chemo!" But once I was able to digest all the information, it made sense to me that I would do anything and everything I could possibly do to prevent a reccurence. NO matter if it was only by 1/2% ! I did the chemo....as everyone has said, it's not a day at the beach, but it didn't prove to be horrible for me either....not like stories we've heard from years past. They have come such a long way with all the antinausea medications....I never had the first wave of nausea, not once....that's not to say there aren't other side effects, because there are, but they are all manageable, with medications,diet etc.

    You have to do what you feel in your heart is best for you....along with the advice of your oncologist.....and don't be afraid to get a second opinion either, if that would help.

    Again, your feelings are well understood......and normal considering what you're going through. Let them out....I have found it's best to be honest with my family in expressing how I really felt......not at first but as time went by..

    I wish you the best
  • lanie940
    lanie940 Member Posts: 490
    I'm so sorry, I was hoping
    I'm so sorry, I was hoping for a lower scor than 21, but I opted not to do the chemo. It wouldn't change it much for me but 2-3%. If it would help you by 10%, I think you may want to go for it. Mine was 13% chance of recurrance if I did RADS and Arimidex. We are all here for you.
  • always
    always Member Posts: 256
    lanie940 said:

    I'm so sorry, I was hoping
    I'm so sorry, I was hoping for a lower scor than 21, but I opted not to do the chemo. It wouldn't change it much for me but 2-3%. If it would help you by 10%, I think you may want to go for it. Mine was 13% chance of recurrance if I did RADS and Arimidex. We are all here for you.

    Oh Lola
    Lola I have no words to ease the fear for you. I will be praying you find some answers and peace with your decisions. I am only 2 days after my first chemo. No fun, but so far doable. I did not want any poison put in my body. I am really weird about dyes and preservatives because of allergies. So allowing a toxin in freaks me out even now. But I want to beat this. I don't want it coming back. I know how strong you have been. I have read many posts and you encourage me constantly. I know this is a tough decision. But I know you have the stamina, strength, guts and support here to make it through. Hang in there and remember please that sometimes strength is sharing the fears and feelings not keeping them in.

    Always-becky
  • roseann4
    roseann4 Member Posts: 992 Member
    That stinks!
    Lola,

    The test is great as long as it gives us a low score. Otherwise, it's scary as hell. When I read the info, they clearly said that a high score in no way means you will have a re-occurence. It only means that chemo will have more benefit for your cancer than it would for someone with a low score. My surgeon was hoping my test would give us a clear answer about whether or not I should opt for chemo. Unfortunately, my score was 18 which is the low end of intermediate. I had to weigh all the fact and decide on my own! I decided against chemo because it would only improve my odds of a 10 year re-occurence by 3%. I wish the choice was clearer one way or the other but I can't waste today worrying about what may happen down the road. I worried about Arimidex for weeks and after 2 months I have no obvious side effects.

    Please keep us posted. I know you'll do fine but it's good to let all your emotions out. We'll be here to listen.

    Roseann
  • lovelylola
    lovelylola Member Posts: 279
    roseann4 said:

    That stinks!
    Lola,

    The test is great as long as it gives us a low score. Otherwise, it's scary as hell. When I read the info, they clearly said that a high score in no way means you will have a re-occurence. It only means that chemo will have more benefit for your cancer than it would for someone with a low score. My surgeon was hoping my test would give us a clear answer about whether or not I should opt for chemo. Unfortunately, my score was 18 which is the low end of intermediate. I had to weigh all the fact and decide on my own! I decided against chemo because it would only improve my odds of a 10 year re-occurence by 3%. I wish the choice was clearer one way or the other but I can't waste today worrying about what may happen down the road. I worried about Arimidex for weeks and after 2 months I have no obvious side effects.

    Please keep us posted. I know you'll do fine but it's good to let all your emotions out. We'll be here to listen.

    Roseann

    I'm on my way to the onco dr
    in a few minutes but wanted to thank everyone for their encouragement and prayers. I had a good cry this morning, went out and bought material for a Halloween costume (I'm going to be a RED HOT CHILI GRANDMA)and now "off to see the wizard (oops I mean dr)" I'll post later tonight what transpires in the "Land of Chemo" - if I can click my heels and just do Arimidex or if I have to face the wicked witch and do the chemo. Thanks to all you wonderful sisters for helping me today. Lola in the ruby slippers.
  • Sunrae
    Sunrae Member Posts: 808

    I'm on my way to the onco dr
    in a few minutes but wanted to thank everyone for their encouragement and prayers. I had a good cry this morning, went out and bought material for a Halloween costume (I'm going to be a RED HOT CHILI GRANDMA)and now "off to see the wizard (oops I mean dr)" I'll post later tonight what transpires in the "Land of Chemo" - if I can click my heels and just do Arimidex or if I have to face the wicked witch and do the chemo. Thanks to all you wonderful sisters for helping me today. Lola in the ruby slippers.

    Waiting to Hear
    Lola, I know how you feel about chemo. I was my mother's caregiver when she had bc and I almost threw up everytime she did. Everyone says its better now but it still creeps me out that I may need it too. My score is 18 on the oc but that just puts me into "should I" or "should I not". Let us know how it goes today for you. Sunrae
  • Eil4186
    Eil4186 Member Posts: 949
    After my surgery I had a 75%
    After my surgery I had a 75% chance of my cancer not returning. Tamoxifen cut my relapse rate to almost half. Chemo only reduced my chance of relapse by 2 percent.
  • mizcaldwell
    mizcaldwell Member Posts: 143
    This is my first post to
    This is my first post to this site. Lola - I am in the same place. I had a small lump, found early, ER+ - and they felt radiation would be needed - not chemo. That is until the Oncotype DX score came back: 74. Yep - it's the highest score my oncologist has ever seen. I emailed the Genomic Health people - and they say the higher the number, the more aggressive the cancer. . . so while just a week ago I was debating radiation - now I'm staring chemo in the face! I am having a hard time getting my brain around it. The posts from all the other women on the site are helpful - scary and helpful. It makes it real - yet gives me hope that it is doable. I sent an email to genomic health today to find out if they have data on the survival rates of the women in their validation group - although the chemo had a positive effect on recurrence for high score women - did it change the survival rate over the group that just did the tamoxifen. If I get an answer, I'll let you all know!

    Be strong - I guess we have no other choice!

    Lori
  • mlmjt1
    mlmjt1 Member Posts: 537
    Hi Lola
    I was afraid of chemo too but I managed to get thru adriamycin/cytoxan every 2 wks x 4 sessions then taxol herceptin every 2 wks x 4 sessions which I guess is about as aggressive as they get with chemo. I actually worked about 25 hours per week thru the adriamycin/cytoxan and was able to work 36to 40 hours per week on the taxol/herceptin. CHemo for me was not as bad as I thought it would be.

    YOu can do it and if it increases your chance that you wont have recurrence, chemo seems like a no brainer to me.

    Trust me, it is do able

    hugs
    Linda T
  • xskeetshooter
    xskeetshooter Member Posts: 169
    what gets me thru this
    i ask god for strength...it works....the unknown is the worst.once you get thru the first 1 it will be ok.
  • xskeetshooter
    xskeetshooter Member Posts: 169
    Sunrae said:

    Waiting to Hear
    Lola, I know how you feel about chemo. I was my mother's caregiver when she had bc and I almost threw up everytime she did. Everyone says its better now but it still creeps me out that I may need it too. My score is 18 on the oc but that just puts me into "should I" or "should I not". Let us know how it goes today for you. Sunrae

    i never thru up once, the drugs they give you are the greatest
  • xskeetshooter
    xskeetshooter Member Posts: 169
    Eil4186 said:

    After my surgery I had a 75%
    After my surgery I had a 75% chance of my cancer not returning. Tamoxifen cut my relapse rate to almost half. Chemo only reduced my chance of relapse by 2 percent.

    2% is 2%
    any % is better then no %