Roll Call! Oncotypedx lower range but still intermediate

24

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  • Alikat123
    Alikat123 Member Posts: 51
    edited June 2013

    Ingrid.

    Ha, yep me too I was thinking menopause at around 50ish too, but then life happened, And my body had other plans...I am encouraged for you that the chemo's side effects may be kept at a minimum for you Laughing Hopefully your appitite will stay good so you can keep your energy up, by being able to eat well to keep your strength up!!

    As another side note, met with the rads onco this morning, starting rads in about 10 days, he was also waiting on the Oncotype score to come back and he said "great news on the oncoscore" He was being geniune not sarcastic, and he also said with that score, and again my history he would have absolutely (his words) recommended, no chemo, so as the days go on for me,as more Drs.  (now the 3rd one) ALL seem to be fully confident in the final outcome and he is veery postitive that the ovarian supression (along with his rads treatment) will do the trick, as he put it.

    I hope that you are able to enjoy your weekend, Try and do something fun if you can! you are not alone on this journey, even though we are cyber BC sisters, I get where you are coming from.

    Alicia

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  • Belinda977
    Belinda977 Member Posts: 381
    edited June 2013

    My score was 19 and Onc said No Chemo.  In fact, he said I could not even talk him into it.  I am also 99% ER/PR positive.

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  • Alikat123
    Alikat123 Member Posts: 51
    edited June 2013

    Belinda977,

    It seems so ironic to me that, say for instance, you can have a room full of Drs.  Even within the same field of study, and a person can get such differing opinions! I am very glad for you that your Onco, was that informed, My actual Onco, ALMOST wanted to the chemo for me, with my 21, then the longer we talked, about my medical history, he backed off, AND as I mentioned above my Radio-Onco, told me today that he would have never even considered giving me chemo! And the strongly driven hormonal factors in my case too, make the hormonal therapy, have a decent outcome.

    Thanks for your story I appreciate it and continued health to you!

    Alicia

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  • Robin3
    Robin3 Member Posts: 145
    edited June 2013

    I have Stage 2 Grade 3 BC. My ER 100+ PR 40+  My oncotype was a 19. But it had spread to one lymph node. Cause of the lymph node involvement he wanted to do some chemo. We decided on the CMF chemo. It's a less toxic type of chemo. And I didn't lose my hair. (2 very important points). I did 8 rounds every  other week for 16 weeks. Just finished, got my port out and start radiation on Monday. 28 treatments plus 8 boosts. I cannot wait to be done!

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  • csprof
    csprof Member Posts: 6
    edited June 2013

    My onco score is 24. I am meeting with my MO tomorrow to decide about chemo. Before even doing the onco test, my MO recommended chemo because of my grade 3 BC.

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  • stjs11
    stjs11 Member Posts: 4
    edited June 2013

    I am 54 years old with no family history of BC. I was diagnosed with bi-lat IDC in February 2013. Had bi-lat lump on 3/5/13. Oncotype RS 17 for the right breast and 23 for the left. Pathology report showed extended DCIS and LCIS through out both breasts. BS recommended bi-lat mast. I met my MO in April prior to mast. MO said that Oncotype RS 23 shows a distant recurrence rate of 15%. With chemo, it goes down by 2-3%. I opted out of Chemo. 2-3% reduction is not enough for me to go through Chemo. My MO was comfortable with my decision. Had bi-lat mast on 4/29/13 with immediate breast reconstruction.

    My BS ordered mammaprint in May 2013. Mammaprint shows low risk for the right breast and high risk for the left. I am facing with decision making all over again. My husband and I both are against taking chemo for preventive reason. Has anyone had similar experience? Will meet MO on 7/1/13. MO said that the ultimate decision is mine.

    Thank you and I am sorry for the long explanation.

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  • NisaVilla
    NisaVilla Member Posts: 574
    edited June 2013

    Sorry I pressed the wrong key. Instead of "reply" I pressed "report." Apologies.



    I loved reading about your certainty and conviction. I wish I could have done that. But I went for the 2-3% reduction (started chemo 4 days ago) because of my family history of all sort of cancers, had multiple large tumors removed during double mastectomy, and still having kids at home. If it returns, I will be able to tell the kids that I did everything within my power. Will you be going on endocrine treatment next or no treatment after the surgery? Best wishes!

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  • stjs11
    stjs11 Member Posts: 4
    edited June 2013

    My plan is to go on endocrine treatment. I am ER+ PR+ and still pre-menopausal. I think by keeping estrogen in control should help. It is ironic that I had a tough time getting pregnant but now at my age, I am still pre-menopausal. I will consult a gynecologist about oophorectomy. My BS said that after the child bearing age, the only thing ovaries can give a woman is cancer.

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  • stjs11
    stjs11 Member Posts: 4
    edited June 2013

    NisaVilla,

    I want to say that you and all the women who opt for chemo are so very brave. Most of you if not all made that decision because you want to give it your all and be around for your children. I have 2 daughters and also want to be around for them. Chemo vs. no chemo is never an easy decision. How are you feeling after the first chemo? I hope you are managing it well.

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  • IngridJ
    IngridJ Member Posts: 121
    edited June 2013

    Hi

    I posted here earlier (a month ago), re decision to have chemo with a borderline intermediate oncotype score. Just finished round two of four T&C. Hasn't been too bad so far. Think you have to factor your own personality into the decision. How much of a worrier are you? How easily will you be able to move on w the no chemo choice? It really comes down to peace of mind (hoping to get that back at some stage)..

    For me, so far, the chemo is manageable- the hair loss the worst se..It is a process I would rather have not had to undergo, but no regrets at the moment for doing so..

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  • sweke
    sweke Member Posts: 7
    edited June 2013

    Hi All

    I was diagnosed 5'22 and had a bilateral mastectomy on 5/30.  Grad 1, stage 1, no nodes, 100% ER+/PR1/HER2-.  Onco score 26.  Because so many people told me how "luck" I was that my cancer was caught so early, the Onco score devastated me.  I just finished my first round of chemo then 10 years of hormone therapy.  From the Adjuvant and Onco graphs my onco said that the risk of relapse in 10 years with just 5 on hormone therapy would be 17%.  Doing the chemo and another 5years on hormone therapy would reduce it to under 10%.  With two young children and being 43 years old I wanted to be aggressive now instead of maybe later.  But for those of you not doing chemo-be happy.  My first round thus far has knocked me for a loop!

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  • Alikat123
    Alikat123 Member Posts: 51
    edited July 2013

    IngridJ,

    I am happy to hear your report of managing on the chemo, so sorry that you lost your hair....

    As for me, I am still not doing chemo, with my score of 21... Have I second guessed myself in my quiet times? Yes, but then I think about what my radio-onc said in my particular case of having a prexsisting neurological condition, that he would have NOT recommended chemo.  And as a side note I am switching my med- onc soon.  I am doing my rads and I am on #13 with 20 more to go.

    Take care,

    Alicia

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  • BayouBabe
    BayouBabe Member Posts: 2,221
    edited July 2013

    Oncotype 19 - multifocal, two tumors both 2cm, LVI, BRCA1+, strong er/pr+



    Oncologist did not recommend chemo. However, had BMX and bilateral salpingo - oopherectomy along with Femara. Hope it was the right choice not to do chemo - this is the only part of my journey that I second guess.

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  • antbigler
    antbigler Member Posts: 17
    edited July 2013

    My score was and 11 and extremely hormone receptive.  Immeditaly started on Tamoxifen.  Initally was scheduled for chemotherapy, but when Onco scores came back, my Doctor said there was only a 1% diffference in reocurrence, therefore I did not have to do chemo.  It is a difficult decision when your on the cusp.  If my scores were close to yours I would have definitly done chemo.  Best Wishes for recovery.

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  • megonzal
    megonzal Member Posts: 11
    edited July 2013

    My score was the same as yours, Alikat123, 21. I am meeting with the MO next week. From my previous conversations with him, I don't think he will recommend chemo, as my tumor was small, only 4mm. But I will be on tamoxifen for the 10 years. I am fine with that!

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  • IngridJ
    IngridJ Member Posts: 121
    edited July 2013

    Hi Alikat,

    Just saw this now.. Glad you are on the tami .. Why change onc? Not happy???

    Bayoubabe; I don't think it matters which way we jump, it's all going to be a tough call.....are you pre or post menopausal?

    Yes, Sweke.. hear you- chemo is not fun, but one round done means one less to go..

    Antbigler- congrats on low score!!! Great news..:))

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  • BayouBabe
    BayouBabe Member Posts: 2,221
    edited July 2013

    I am now post menopausal. My BRCA+ status made me decide to have an oopherectomy, same day as BMX. At diagnosis I was only 44 with no peri menopausal symptoms. Hoping any stray cancer cells are now starving to death! Take that cancer!

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  • IngridJ
    IngridJ Member Posts: 121
    edited July 2013

    Sorry Bayoubabe,

    Didn't see BRCA status.. Am still to be tested, but thinking is that it is unlikely, as my mother was 68 at diagnosis, no other fam history..(that we know of anyway)

    Yay to no cancer cells!!!!!

    I think I am going into rapid chemopause, nothing this month, only time I've ever skipped before was due to pregnancy, and that is not the case now!!!!

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  • BayouBabe
    BayouBabe Member Posts: 2,221
    edited July 2013

    No need for sorry! Glad you are still doing genetic testing. Don't miss my period at all, just the hormones that went with it!:). Hope chemo is otherwise treating you well.

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  • IngridJ
    IngridJ Member Posts: 121
    edited July 2013

    Well, its been ok ish, two down and two to go, next on Monday. Can't say it's been fun....

    Hormones something else- am really not sure what to expect. How do you feel?? Less like you, or same??? Not sure what I'm asking, but the docs have all talked about the tamoxifen since diag with er pos, and now the time to actually take it is approaching..... Think I've been on oestrogen overload for years so.....Never had masses of energy despite four kids so bit worried about that...

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited July 2013

    22 with a node...very hard decision , back in 09 it was an unusual decision not to do it...

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  • BayouBabe
    BayouBabe Member Posts: 2,221
    edited July 2013

    IngridJ - not really sure how to explain the no hormones. I was exhausted for quite a while, but that was probably from my extensive surgery and rads. Same thing with mood swings. That's just it, we go through so much with cancer, it is hard to sort out what is what. I will say this, I am now just over three months with being done with treatment, and am just now starting to feel like my old self. It is such a relief ( I thought that old gal was gone forever; good to see her in my head and heart again!). Hope she stays there after my surgery next month, or at least returns more quickly! Glad we all have each other here to help see us through. Best of luck with the tamoxifen!

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  • IngridJ
    IngridJ Member Posts: 121
    edited July 2013

    Awww yes, Bb, we get used to being 'us' hey, our own selves, the daily equilibrium, and the mixture of traits that gets us through...Especially as we age...Know what you mean. I am fairly easy going, but with awareness for the irony of life. That's how I like to be; basically cheerful following the protocols..but inwardly amused by a lot of it all. And that's been gone since bc.

    Glad you are feeling the real you coming back.. :))

    And yes, how to separate the effects of treatments from the mental adjustments...???? Time I guess...

    Good luck w your surgery..x



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  • BoatinGirl
    BoatinGirl Member Posts: 99
    edited July 2013

    I have been reading the posts on this topic for the past week, anticipating that I would get a gray area test score - and of course I did!  22, with 1 of 19 nodes positive.

    I have a meeting with my MO on the 29th.  I anticipate he will again talk about the Responder clinical trial, as well as advise me to do chemo.  I was wondering if anyone had any advice for what parts of the test results you paid particular attention to, when you were making your decision. 

    I have been reading about what was presented back in Sept at a major breast cancer symposium - and it appears the reoccurrence score is key.

    Ah...decisions, decisions.  There are so many stressful ones with this crappy disease....

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  • IngridJ
    IngridJ Member Posts: 121
    edited July 2013

    Hi Boatin Girl

    The oncotype report when you get it is fairly simplistic, just a number with no break down in gene profiling results or insights. I have read on these boards, a lot of women say that it can be considered along with your pathology report, and that concerning features there could tip the balance of decision into a yes for chemo. So, you could look at it that way, as a piece of the puzzle as it were..

    Other factors are the tumour grade and the breakdown of tumour grade, the mototic score, the KI 67, these are proliferation indicators which could have a bearing on your desicion.

    Good luck, hope for a low score for you!!!! It's so hard and a mind warp really......

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  • IngridJ
    IngridJ Member Posts: 121
    edited July 2013

    Looking now see you did get score, duhhhh me...hope your discussion with onc went well and you have a way forward...

    Yes, it all sucks hey....

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  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited July 2013

    I decided to do chemo with a score of 24 ...middle of the middle. I am 63 , not young, but doing chemo reduced my distant recurrence rate from 16 percent to 11 percent and that was worth it to me. I just finished 6 cycles of TC and I am doing fine. Wasn't fun. There are no easy decisions with breast cancer. Lumpectomy or mastectomy? Chemo, no chemo? It sucks. At the end of the day we have to be comfortable with our decisions.



    There are people who have questioned my decision...small tumor, grade 1 k167 of 17 , mitotic index was 1 ...strongly er positive... I believe in science and I think that there was something about my tumor that was nasty so I wanted to kick its a$$ .



    Best to you all

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  • barcelonagirl
    barcelonagirl Member Posts: 52
    edited August 2013

    Way to go MsPharoah!  You're the one that will deal with the consequences of your decision, and a score of 24 could really lean either way.  I had a Mammaprint after my 21 score, and it came back high risk!  But there have been others with a score of 30, whose Mammaprint came back low risk...so you can't make assumptions.  You're done with your chemo, and don't have to look back and say "should I have?"!!

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  • movinonmom
    movinonmom Member Posts: 7
    edited September 2013

    I was diagnosed in July 2012, Stage 1,grade2, 0of 3 nodes and an oncutype score of 18, I opted to do chemo and have to say I would not change my decision .

    For me I knew that I would always have in the back of my mind, should I have gone for it. Having done the chemo, I at least have peace for myself that i threw everything I had at it, IF there should be a recurrance, new cancer etc, I know that I did what I could.

    Treatment is very personal, I believe that only you know what is best for you. I was worried about doing Chemo due to the other Cancers that could be caused by the Chemo, on these boards a year ago when I was struggleing with my decision, I read a statement by a DR that resonated with me, "Fight the Cancer you have today, not the one you may never get" After reading that my decision was a no brainer.

    I was allergic to Taxotere so my treatment plan went from 4 rounds of chemo over 3 months to 8 rounds over 7 months, I worked everyday, and I would do it all again.

    I hope you find peace in whatever decision you make. Dawn

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  • BoatinGirl
    BoatinGirl Member Posts: 99
    edited September 2013

    IngridJ - realized I never followed up after I received my score.  My score was 22.  Figures.  The grey area.  I really went back and forth on what to do, then made my decision.  I decided to forgo chemo.  My recurrence chance was 14%, and the onc said doing the chemo would perhaps knock that down by 2ppts. 

    I also felt there was alot I could do from a lifestyle perspective, to live healthier. 

    Fingers crossed Tamoxifen and I agree with each other.  I have been on it a month so far.

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