First Onc Appt

SmokyMountain
SmokyMountain Member Posts: 7
edited June 2014 in ILC (Invasive Lobular Carcinoma)

I just had a bilateral surgery on 6/13 and have my first Onc appt on Monday.  I am a stage 2a, 2.5 cm, no lymph nodes involved, ER positive, PR negative, and HER2 negative.  I do not know my grade.  Where do I get that information?  Is that another report/test?  Any tips for my first visit?  I am a BRAC2 positive and will need to get my ovaries,ect removed sometime soon. 

A lttle confused... 

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited July 2010

    Smoky

    I would suggest that you make a full list of questions for the onc?  your grade should be in the path report, but you can ask the onc.  You should ask about the oncotype test..... will help you for chemo decisions.  

    I also used a digital voice recorder for all of my visits--- it really helped me pay attention in the meeting without the distraction of taking notes (or barking at h because he wasn't taking notes fast enough!).  I still use it now, almost 2 years out....

    Make sure that you know how the onc works--if you have a problem, do you call them or an assistant?  If you are going to have treatment, will you see them regularly?  If they have a regular assistant, ask to meet them so you can see how you get on.   also, if you find that for some reason you don't like the onc, find another.  You will have to see this person pretty regularly for a while.....

    A good onc will also help you with the ovaries-recommend surgeons, etc.  A good onc will also be up on the latest research...but mostly a good onc will care about you and your treatment.

    good luck 

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  • michelle1014
    michelle1014 Member Posts: 36
    edited July 2010

    I had one lymph node involvement so I ended up with chemo so I am different but I just wanted to let you know I was told to do AC every other week for 4 weeks and T every other week for 4 weeks by my first oncologist (8 treatments) and then I had a second opinion and she said she would do C/T every three weeks for 4 treatments.  She sent everything over to my first oncologist and and my first oncologis concurred that C/T 4 times would be fine.  I'm still doing the treatments with my first oncologist because I like the staff and facility, but I am very glad I got a second opinion. 

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  • SmokyMountain
    SmokyMountain Member Posts: 7
    edited July 2010

    Thanks for the pointers.  I did find out that my grade is a 3.  Is the oncotype test something I need to ask for or is it ordered automactically.  It sounds like I need to order it.  The digital voice recorder is a good idea.  We did meet with one onco when I was first diagnosed but was not impressed that she gave us an "opinion" with out any pathology information.  Because of the size, my age - 45, and grade 3 she said she would always recommend chemo.  it was more than I could hear at the moment especially since she had no info.  So we are scheduled to meet with two oncs this week now that we have the path report but I guess we will need to irder the oncotype test.

    thanks again to both of you for your advice/tips! 

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited July 2010

    smoky

    your onc should bring up oncotype-but if she doesn't, ask for it....for a long time it was for those with no lymph node activity, because with a lymph node involved, chemo was automatic.  But, from what I have read, they have started to offer the test to those with 1-3 lymph nodes-so do bring it up.

     With grade 3 and your age, it is not unreasonable for an onc to suggest chemo.... but it is your decision, no matter what.  second opinions are good... and if you go with another onc, you may want them to have the pathology re-read at their facility, just to be sure of the dx..... it is usually confirmed, but it is a good thing to have done. 

    for what it is worth, I did 4 rounds of chemo over 8 weeks--- worked through the whole thing and have young children--I did not feel "great" but I was able to do it... everyone is different, but I just mention this so as to say that chemo is not as awful as we imagine it to be...... it is doable so if you end up going that way, come back and we can all help you through it......

    good luck

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  • sgreenarch
    sgreenarch Member Posts: 528
    edited August 2010

    Hi, everyone. Thanks for being there. This is my first post, and I, too, have my first onc appt on Sept 7 and have lots of questions, but I feel a bit disorganized. I had mastectomy on the left breast on July 29 after a mammogram, MRI and biopsies confirmed two lobular tumors, one 2cm and one 9cm distant from each other. The margins after the surgery were clear. The results of the Oncotype Dx test were 17. I'm 49. Some areas are low grade, some foci are higher, whatever that means. I imagine I'm in the grey area of chemo vs. not chemo. I must admit that that's making me nervous. Will the onc help me make the decision if it's not so clear? I'd like to try to be as aggressive as possible, but also don't want to do chemo with questionable benefit. I'm also already getting paranoid about my right breast which so far seems clear, but these things are so hard to read, even on MRI's, that I don't know if I don't want to do a prophylactic mastectomy on the right side and then just do bilateral reconstruction. Any other important questions anyone feels I should ask at this first meeting? Thank you so much!

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  • sflow
    sflow Member Posts: 297
    edited August 2010

    Yes, your onc should help you.  They have access to a program called ajuvant on line( not sure I spelled it right) that does give you the benefit of chemo based on your numbers.  Best of luck.

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  • mymountain
    mymountain Member Posts: 184
    edited August 2010

    sgreen,

    If I can add my 2 cents,  I would get a second opinion (and maybe third) about further treatment.  17 is in the low range and chemo is not a given.  It's a whirlwind of emotions and information overload in the beginning, and you might be inclined to take the first recommendation from the first onc.  Take someone with you to take notes, and don't commit to anything until you have all your questions answered.

    Good luck,MM  

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited September 2010

    sgreenarch -

    I also agree that now is the perfect time for a second opinion.  I didn't have many choices with stage III but I've seen so many women with early stage cancer really struggle because they are given more options on which way to go.  I think the second opinion may help you understand where your cancer is at and may get a good confirmation on the first onc's tx plan.  Also helps you know if you're going to be able to "click" with your onc.

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  • Seabee
    Seabee Member Posts: 557
    edited September 2010

    I recommend taking someone with you to this appointment, or taking a small digital recorder, because it's hard to absorb and remember all that is said at this stage.  If you are still in doubt after this meeting, a second opinion might help, though it was not helpful in my case.

     Your tumor doesn't appear to be very aggressive, either by grade or Onco score, so I rather doubt that your onc will push chemo. Keep us posted.

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