newly diagnosed, need insight on treatment

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js37
js37 Member Posts: 77
edited June 2014 in Stage I Breast Cancer

hi everyone, i'm new here, just diagnosed with breast cancer in november & i've just turned 37. i'm struggling with what type of treatment i should do, given my circumstance, and am looking for some insight from others who may have gone through this themselves. 

 i had a lumpectomy with sentinel node biopsy.  my tumor was a strange one, it had a cyst that was growing from it at a very fast rate.  the tumor itself scored a 9 out of 9 on the scale for aggressiveness and is estrogen postive, hert2 neg.  the tumor size was 2.4cm, with clear margins, with the exception of 1 side where there was only 1mm of clear margins.  the surgeon is going back in to take a bit more tissue from that spot so she feels more comfortable.  she also took out 4 sentinel lymph nodes, and 1 auxiliary for good measure - they all showed clear of with the exception of 1sentinal node that showed a few individual cancer cells dotted throughout when they did some sort of microscopic dye test - but they are calling it "no lymph node involvement".

my question is this - i'm really struggling with the idea of chemo.  i have a lot of concerns about what it does to your body, your overall health both short & long term, and i view it as a last resort sort of measure.  all of my doctors however, are giving me the hard push to do it.  my first inclination, since i technically have "clean margins" and no detectable lymph node involvement, is to do tamoxifen for 5 years with the radiation therapy.  but the oncologist keeps telling me things like this will mean that i could die in 5 years and that without chemo i have a 25 to 50% chance of it coming back either in the breast or somewhere else in my body...and then i get all emotional and i can't think rationally in the moment and i start to feel like if i don't do chemo, that i'm going to die in 10 years.  

 is there anyone who has dealt with the same sort of situation as me?  has radiation & tam worked for people?  how do i go about getting a second opinion from a different doctor?  should i go to an entirely different hospital to get that 2nd opinion or just another doctor in my current hospital?  i've read many things that say with my sort of cancer, the standard treatment is radiation & tam, but then the oncologist says because it's aggressive that i should do chemo or i'm taking a huge risk with my life. i'm confused and overwhelmed.  i obviously don't want to die, not now or 5 years from now, but neither do i want to pump my body full of unnecessary poison as a "preventative" measure.  :( 

Comments

  • writer
    writer Member Posts: 208
    edited December 2009

    I'm newly diagnosed, too. with the same "9" rating, also Her2+ -- so stage 1, but the most aggressive kind of stage 1. My BC doc says I absolutely have to have chemo and Herceptin and then radiation and then Tamoxifen. Holy @&)@. A couple of friends are pushing me to get second opinions, but so far my medical team has been fabulous, and my BC surgeon seems to be one of the best in L.A., and the pathology report is pretty darn clear. 

    js37, you're 14 years younger than me. I totally get why you don't want chemo. I don't either-- I'm 500 times more scared of it than I was of my surgery two weeks ago. But you're young and don't want this back. It seems like you have to give it very serious consideration. I have several friends who went through it just fine for various kinds of cancer and are doing great. 

    I'm going to do it, not happily, but I just don't see a choice... 

  • somanywomen
    somanywomen Member Posts: 872
    edited December 2009

    Find out if your insurance will pay for a test called Oncotype DX.....gives you a score of recurrence with and without chemo.....I have 86% chance of Non recurrence and doing chemo would just add another 2 or 3% to that....So I chose no chemo.......There are some factors in your diagnosis to be able to do this test...But you can go to website for Oncotype Dx to see if you would be a good candidate for it....good luck.....

  • js37
    js37 Member Posts: 77
    edited December 2009

    thank you everyone -it's still so new to me that i'm not sure how to navigate everything.  sometimes it hasn't really sank in yet, and other times, it's overwhelming. 

    we are having the oncotype test being done, but the results aren't back yet.  i'm really fortunate that my insurance pays 100% of everything, no matter what test it is.  i told my oncologist that i needed to wait until that came back to make a decision, apparently he can take that info and put it into some statistical program and it will give me #'s on my possible re-occurence rate.  chemo to me just seems so harsh.  i told myself that i would do it, if there was lymph node involvment, but since there isn't, i'm really struggling with it.  and i'm not one of those girls that just does something because a doctor tells me to...and all doctors are going to tell you to do chemo, it's the standard care.  but in my mind, i need to know that it's *necessary* for me to live, not because it's the "standard" thing to do.  i just can't wrap my head around it because it was caught early and hasn't progressed past the breast. 

    i am currently working with the swedish hospital breast cancer center in seattle, but i think i'm going to try to get a second opinion either from the UW breast center or seattle cancer care alliance.  

  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2009
    JS, take your time making the decision.  The Oncotype dx will be a good indicator.  Mine came in low at 13 so the med onc said no chemo.  And since you are unsure, getting the second opinion is a good idea.  You have to be comfortable with your decision.
  • flash
    flash Member Posts: 1,685
    edited January 2010

    Having done chemo- it's not the picture in your head.  It's like the big bad wolf: it huffs, it puffs but it doesn't blow down the house.  Things are changing rapidly all the time in the cancer world. (although not fast enough, I want a cure.) Just in the time since I was treated,  it has already changed. 

    The micromets in your nodes are part of the concern and reason for suggesting chemo.  None of the tests can see where individual cancer cells have gone.  Micromets warns you that some MAY, not certainly, have gone elsewhere.  Definitely get all the information possible before making the decision and do what is best for you but be sure to ask yourself, if it came back, would you blame yourself for any earlier decision.  My suggestion: Once you've made your decision, don't look back. You've done the best with the information at that time for you.

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