anyone with mircomets not or didn't do chemo?

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DebraJ
DebraJ Member Posts: 10
edited June 2014 in IDC (Invasive Ductal Carcinoma)

I've been trying to do alot of research. I want percentages. I'm 97% sure I don't want chemo. Oop and aromatase inhibitors only. Had a rad mast. 9-21-09, 2 mircomets no vascular invasion. No insurance do not qualifty for gov asst. Had meeting with onco that surgeon referred me to when the doc found out I had no insurance dropped me and said she would referr me to the hospitals onco. Have not heard anything from them. I have read alot of posts and tht's great for the ladies that have and are doing chemo. What I have learned so far is having breast cancer is like playing russian roulette, no matter what treatment plan you choose. Risks vs. benifit I want to know percentages not the standard of care. I want to choose for myself and not just do what a trillion$ industry tells me to do to gain a small %. sorry so neg. just trying to get through this. D

















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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited October 2009

    Not quite sure what you're asking, but I didn't do chemo with my micro mets. It is a very controlversial subject!

    You aren't triple negative.....

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  • DebraJ
    DebraJ Member Posts: 10
    edited October 2009

    I guess I need to know that I'm not so far in left field (out of the ballpark) to decide not to do chemo givin my DX. Thank- you for replying.

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  • She
    She Member Posts: 503
    edited October 2009

    Shoot, I just lost my post ... so on to the Reader's Digest condensed version ... lol

    Barbe is correct, this is controversial and is also a very personal decision.

    13 1/2 years ago I did AC with my first Dx ... Stage 2b, Grade 3, micromets to nodes, triple neg, lymphovascular invasion.  I've had 2 new primaries since then, both Stage 1 Grade 1 ER/PR+ Her2-.  I can't imagine what would have happened to me by now if I had chosen not to do chemo back then.  Tomorrow I'll find out if my Onc is recommending chemo now for a close margin at chest wall.  They'll have to drag me kicking and screaming but I will do it because my personal attitude is I'll do whatever I have to, to live a long long time.

    My opinion on stats - percentages are just an average of a bunch of people.  You or I or anyone else will either 100% not have a recurrance or new primary or 100% will.  There's no in between with BC.

    The 'standard of care' is slowly changing to individual tx plan but not fast enough to satisfy any of us.

    Start calling that Onc and talk to him before you decide anything.  Get all the information you can.  If you had 2/9 nodes positive, chemo will probably be recommended.  You may qualify for the TailorX program that provides a free OncotypeDx test.  If not, contact the manufacturer as they do have patient assistance.  It isn't a perfect test, but every little bit of individualized info helps.

    Financial assistance - there are threads here that provide a variety of resources for financial assistance.

    Again, just my own personal opinion ... if I was currently Stage 2 Grade 2  I'd be doing the chemo and the ooph and then the AI.

    Whatever you decide is right for you, I wish you all the best, and respect your personal decisions.

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  • DebraJ
    DebraJ Member Posts: 10
    edited October 2009

    thanks she. If i had been thriple neg, I think I would bite the bullet and do chemo. I have reading alot of clinical studies(sometimes getting brain overload) . I feel a 100 times better mentally now that I have decided on a plan of action,at least for todayLOL. I would bet the onco is gonna say A/C and then T. I will have to fight the onco an my mother for my decision, get through the 3% of doubt and not look back. D

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  • lexislove
    lexislove Member Posts: 2,645
    edited October 2009

    http://www.breastcancer.org/symptoms/new_research/20090812.jsp

    DebraJ..

     This study came out recently please read.

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  • HelenaJ
    HelenaJ Member Posts: 1,133
    edited October 2009

    DebraJ - I had isolated tumour cells and didn't do chemo - as I was officially "lymph node negative" I also did the Oncotype DX test and had a score of 6 and had a bilateral mastectomy.  But I will state again that this is such a contraversial topic.  I'm on tamoxifen for 5 years (minus 7 months - yay).

    good luck and big hugs

    Helena

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  • idaho
    idaho Member Posts: 1,187
    edited October 2009

     I had clear nodes - but I declined chemo.  THe onc told me that it would only help prevent recurrence by 4%-- it just wasn't worth it to me.  Your onc can pull up the same program and show you how much chemo will help you.   Onc said he would recommend it and then when he found out I don't have insurance he showed me the stats.....  hmmmmmm      Tami

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  • DebraJ
    DebraJ Member Posts: 10
    edited October 2009

    I want to thank everyone for replying to my posts.I have been reading posts for weeks now and yesterday finally decided to join. This is hard. I've been trying to develope a postive attitude. Whatever happens is gonna happen. I once gve this advice to my 18yr.old son:" Everything in life changes.How you measure success in life is how well you adapt to that change". It's not easy to have to eat your own words of advice.

    wishing inner peace  to everyone   D.

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  • HelenaJ
    HelenaJ Member Posts: 1,133
    edited October 2009

    And to you Debra.  Big hugs honey.

    Helena

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  • lexislove
    lexislove Member Posts: 2,645
    edited October 2009

    Debra..Please let us know what you have decided.

    This is your personal choice...do what feels right for you.

    Be well.

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  • Klawless9
    Klawless9 Member Posts: 95
    edited November 2009

    what about radiation? can that get rid of micro mets?

    i had a bi-lat mast. on 11/4 and was just told 2 of 3 nodes had micro mets. I'm brca negative and my tumor was 3cm.

    i meet with an onc on dec 1 to see what they say. everyone says the person will definitely recommend chemo. i definitely don't want it. I'm 34, no kids and want kids, small as hell (currently 78lbs)...just don't want to go through that.

    that's why i was wondering if radiation cold be an option? of course i'll ask the onc but thought i'd see what you ladies think.

    Kendall 

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  • Blondie1964
    Blondie1964 Member Posts: 116
    edited November 2009

    I also had micromets and opted to not do chemo though my onco said if it was her she would.  My age, 44, is a factor, she wants to throw everything in the book at me and the decision was a hard one. At one point I actually had signed up for the chemo because of all of the pressure that others outside of my medical team were putting on me - I felt absolutely horrible, dreading life, having nightmares and I now know it was because I was going along with what "everybody else" thought I needed to do and not what I truly believed in my heart was the right answer.  Once I made the decision not to do chemo the cloud lifted for me.  I totally agree it is a very personal decision and no one should make it for you though those that care will offer advice and that is always welcome for what it is.  My onco did not feel uncomfortable with my decision - she felt from the beginning that my best strategy was hormonal given the nature of my tumor - I also did do the Onco test and mine came back a 12, my insurance covered it too, just FYI. 

    I was glad to see this topic, I really struggled with my decision and wasn't on these discussion boards back then and didn't know anyone in my situation that had made the same decision, so it is nice to hear from others in a similar situation....

    Julie

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  • makingway
    makingway Member Posts: 799
    edited November 2009

    I had 2 micrometastises in one lymphnode. I am not doing chemo nor radiation, nor Tamoxifen. It's a personal decision. I refuse to let others fear scare me into doing something I truly don't feel good about. If you have netflix, get the movie 'The Beautiful Truth.' It's an eyeopener.

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited November 2009

    The oncotype people are very good with financial assistance!!!!! If you are low income you can get the test for free. If you have a low score there is not much point to chemo, even with micromets. I posted a study from Montefiore hospital on my thread  one pos node oncotype.

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  • DebraJ
    DebraJ Member Posts: 10
    edited November 2009

    Thanks to everyone!! I needed that support. I am not going to do chemo. On the fence about what Horm.thphy. to do.Seen hospital onco all she did was attack me, she couldn't get pass the fact that I don't want the chemo. Adjuvant online predicts only a 13% benefit from ddA/C @4 and T @4 for recurrance over 10 yrs. Some people would jump at that. Didn't impress me. When I pointed out the fact that the 8.0 version did not take into consideration the Her2 status the onco was mad as a hornet.I knew too much about bc and she couldn't bully me or scare me into doing what SHE wanted me to do. Seeing another onco next week this one is suppose to be good, my surgeon said he had been involved with bc clinical trials in the past. Hope he can understand and respect my decision so I can get into treatment, every month that has passed and I have my peroid all I can think about are those damn hormones I am 48 .   D.

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