To Chemo or Not (ki 67 = 43)

Ever45
Ever45 Member Posts: 8

Hi ladies,

I am very grateful to have a supportive place to
visit. Thanks!  :)

Briefly, I am 45 with 3 kids (4,9,12). I have ILC stage 1,
grade 3, no nodes. My Onc said my
case was very”interesting” as I have pleomorphic ILC which can be
aggressive.She ran a Ki-67 test = 43
(which is high). She said Chemo TC - 1
IV in 3weeks and 4 cycles. She said I have a 30% recurrence rate. So Chemo will
only give me a reduction of 5% to 10%. My question is does anyone know how they come up with this recurrence rate?
It seems to me there is not much data on ILC. And any comments on Chemo? I haven’t decided.How did you come to a decision? My 1st
gut impression is to pass on Chemo but my logical side says I must.I hate to do things out of fear.Thanks for any support. xoxo

Comments

  • lintrollerderby
    lintrollerderby Member Posts: 483
    edited July 2014

    Hi Ever45. I'm sorry you are here. While I can't comment on the specifics of ILC because I had IDC, I wanted to acknowledge your post. It's a holiday in the U.S. and the boards can be pretty quiet. 

    I did want to say that I had 4 cycles of TC. I had Triple Negative (so chemo was a must for me). My Ki-67 score was 76%. Perhaps a second opinion to help you decide?

    Best of luck.

  • lintrollerderby
    lintrollerderby Member Posts: 483
    edited July 2014

    Oh, I forgot to add that over the years on this board, I've heard many ladies with ILC discuss how "sneaky" it's known for being. I don't say that to scare you but to perhaps offer a reason behind the suggestion for chemo. 

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited July 2014

    hi ever45 - What are your hormone receptors ex: ER, PR, Her2. If ER PR pos, Her2 neg  typically your doctor would have ordered the oncotype dx test.  I am not very well versed on the other types but there is a triple neg thread and her2 positive thread and I know the ladies can be of assistance.

  • melmcbee
    melmcbee Member Posts: 1,119
    edited July 2014

    Hi Ever45. Im sorry that you had to be here. I feel that chemo is a personal choice. I would want the extra 10 percent chance. I didn't see what your tumor size was or whether you are doing a lumpectomy or mastectomy. All of those things would come into the decision process. I had a bilat mastectomy, chemo and radiation. Chemo is very doable now. They can give you meds to help the effects of it. I was 42 at diagnosis and my age played a role in the doctors saying to do all this stuff. You have many more years to live and anything to increase your chances is a good thing. Oh and in my opinion I would do chemo because of you being grade 3. I think you are very intelligent to ask around and research this. ILC doesn't show up well or all of the time on tests such as mammo's and that is why its sneaky. It grows flat like lace instead of a round mass. By the time you feel it then it has probably been there a while. When I had my mastectomy they did the sentinel node frozen section test while I was in the operating room and the initial tests showed it was negative for ILC however a week later I received a call that said the final pathology was positive so I had to go back to the o.r. to get the ALND. I endd up with 8 positive nodes out of 15. That is another way its sneaky, I hope that my opinions help and good luck. Please let us know how you are. Healing hugs

  • toomuch
    toomuch Member Posts: 901
    edited July 2014

    Ever46- I'm sorry you find yourself in this position. My ILC was also pleomorphic. There was no ki-67 noted on my pathology report but I did have an oncotype test. Even though that score came back low risk for recurrence 3 medical oncologists (MO), 2 at NCI designated BC centers, recommended chemo for me. Their decision was based on the pleomorphic subtype, my 2 large positive nodes and age, 48 at that time. There are many variables that make the right choice different for different woman. If you can get a second opinion it might help with your decision. An oncoitype test would add additional information. In general tumors with high Ki-67 and grade 3 respond better to chemo then lower grades or Ki-67. You may want to plug the stats of your tumor into cancermath,com under BC treatment. Its most important that you're at peace with your decision.

  • Ever45
    Ever45 Member Posts: 8
    edited July 2014

    Hi, happy Independence Day!

    lintrollerderby -  It really helps to have support, information without judgement. Thanks! I'll look into a 2nd opinion.

    farmerlucy - I am ER/PR very positive and Her2-. I actually did ask my Onc about the oncotype dx test but she said that that test would be inappropriate for ILC.  Instead she did the Ki 67 test which is less common.  There seems to be some controversy about it's usefulness.

    toomuch - I see we are both interesting cases (pleomorphic) - which = less than @2% of the population and ILC = @10%

    I know that my onc is a professional who has a lot of expertise. I would like her to
    say she doesn't really know and 30% recurrence is just a professional guess. Unlike
    the oncotype dx test which provides a breakdown of stats based on
    thousands of people in the database. To me personally the numbers make a difference. (Well... in a theoretical kind of way).

    I really dislike the notion that all patients are dumb and we need to listen without question.  I am sure we all recognize that chemo can and is effective.  But, I'd like her to admit that it doesn't come without some serious side effects. It is our life to live. 

    Again Thanks for the replies.  It is so heartwarming to know that others (we) make decisions and we do move forward.  My mind is running in circles and I want it to stop.  Part of me just wants to get back to normal and leave cancer in the past. Do we get to normal again?

    xoxo

  • debiann
    debiann Member Posts: 1,200
    edited July 2014

    I have IDC, and I am Her2+. Like you, I really questioned how necessary chemo was and almost didn't do it. I've now completed 3 out of 6 rounds of TCH and its not all that bad. I think I would have more regrets and worry about recurrance if I didn't do it. 

    There is a decision making process you go through and acknowledging that it is YOUR choice is an important part of the process.  I have one bad week every round. (Bad not horrible) I spend most of that week saying "I'M NOT DOING THIS AGAIN!" Yet I chose to keep going back, because I want to reduce the risk of recurrance. After each round you'll meet with your MO to discuss the severity of your side effects and the possible need for reducing the amount of chemo.Before that appointment I tell myself I should convince him my se's were so bad I need the chemo reduced, yet when I get to the appoinment I find myself saying "It was ok, lets do the full dose again." I don't know that the dosage is my decision, but its nice that he lets me think I have a choice. For me, self preservation keeps winning out over the fear & discomfort of chemo, but knowing I could stop if I wanted to makes it easier for me to keep going.

    Good luck with your decision


  • lena-lou
    lena-lou Member Posts: 10
    edited July 2014

    Ever45, I was just diagnosed with ILC at age 47, and am a mom of 3 young kids myself.  Mine is kind of the opposite of yours:  low Ki-67 and low oncotype Dx, but already quite advanced -- in 3 out of 4 quadrants of my left breast and close to the chest wall, and there is also a tumor in at least one lymph node big enough to feel, which is how I finally found it, since it never showed up on mammograms or u/s.  So that is why I am doing chemo, before surgery.  

    For your case, I would think the oncotype might be helpful. It is validated for node-negative, ER positive patients and also for node-positive, hormone-receptive post-menopausal patients.   I don't fit either of those but they ordered it for me anyway and my insurance paid for it.

    My understanding is that ki-67 is just one part of the oncotype, but the oncotype takes many other genetic factors into account as well.  So it might give a better picture overall.  But I am no expert.  Best of luck to you.

    (Oops, editing because I see you already said you are ER positive).

  • Evgeniya
    Evgeniya Member Posts: 26
    edited July 2014

    Hey darling! sorry for your diagnoses i was diagnosed resently as well. just got hold of this beautifull community wich i believe will be of grate healp for years to come. look at my signature and my age 36 all was screaming for chemo and lots of it exept the doctors thay sayed NO i had a choice i went with tnem. scary i feel i might not have done enough. we just dont know. people do have reoccurance who had and did not have chemo. wno had and did not have nodes involved. good luck and luck you need!

  • hlya
    hlya Member Posts: 484
    edited August 2014

    Oncotype test is inappropriate for ILC???  Never heard of that.........

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited August 2014

    From their site:

     The Oncotype DX gene expression assay is intended to be used by women with early-stage (stage I or II), node-negative, estrogen receptor-positive (ER+) invasive breast cancer who will be treated with therapy. Learn more about the Oncotype DX breast cancer test.

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