Oncotype DX Roll Call!

1…78101213…15

Comments

  • ChrisBern
    ChrisBern Member Posts: 33
    edited February 2009

    Moodyk, I also think it's important that people knows it can happens to men also.

    In my case, it's related to the BRCA2 gene.My mother died of BC at age 33.

    Have a nice day everyone!

    Christian

    · Share on FacebookShare on Twitter
  • hollyann
    hollyann Member Posts: 2,992
    edited February 2009
    6%-11 Score ( hollyann...Bilat Mast w/Immediate TRAM recons, Tamox, Radical Hyster., Feamara, then Arimidex....No chemo or rads)
    · Share on FacebookShare on Twitter
  • jude14
    jude14 Member Posts: 293
    edited February 2009

    My onco dx score was an 18 and I chose , with the onco's blessing just to do a lumpectomy with 33 rads and then on to the AI's.  There are times I wonder if I did the right thing but there is no going back.  Having a horrible time with the AI's!!!!!!!! Does anyone know what percent of coverage you get with these pills?  jude

    · Share on FacebookShare on Twitter
  • jude14
    jude14 Member Posts: 293
    edited February 2009

    Mary 5454....my onco told me with my onco dx test I have an 11% chance of a recurrence with the tamoxifen and by being on an AI it makes it about a 8 or 9% chance.  Where he got his info from I have no idea.......then again I have only seen him once and I did not like him either.....lol  jude

    · Share on FacebookShare on Twitter
  • kamico3
    kamico3 Member Posts: 90
    edited February 2009

    Hi Jude,

    my oncotype was 19 and I also had a lumpectomy, am almost done with my 32 rads, and am about to go on to arimidex. I also hope I have done the right thing. I saw three oncologists and they all said no chemo.  

    · Share on FacebookShare on Twitter
  • mary5454
    mary5454 Member Posts: 89
    edited February 2009

    Thanks Jude. My oncotype was 18 also. The onc said it was up to me but he was fine with me skipping chemo. I decided to do chemo on others' advice- did half but had a reaction - onc recommneded I stop (which I did) and move on to radiation and Femara. I have done 4 rads so far and started taking femara on Friday.

    · Share on FacebookShare on Twitter
  • mary5454
    mary5454 Member Posts: 89
    edited February 2009

    oh.. the "other" were family. I think most oncs feel that with a  score of 18 it's fine not to do chemo.

    · Share on FacebookShare on Twitter
  • whippetmom
    whippetmom Member Posts: 6,920
    edited February 2009

    Here is another article [tagging onto what JustSaying mentioned] which seems to suggest that clinical trials have shown that Zometa might be an alternative to chemotherapy in early ER+ breast cancer for SOME patients.  Perhaps those who are on the cusp of low-risk/intermediate risk in Oncotype testing....especially for those who are taking an aromatase inhibitor....[to help with bones as well as reduce the risk of recurrence.]

    http://www.abcsg.at/english/pdf/clippings/ASCO%20Zometa%20Wires-abcNews.pdf

    Referable to benefits of an aromatase inhibitor vs. tamoxifen, I have had two oncologists now AGREE that it does not matter, in terms of relative risk percentages, if I stay on Tamoxifen for 2-3 years [my preference] and then go on an aromatase inhibitor, as opposed to going on an AI now, instead of Tamoxifen.  I have two to three years for them to find something better or find an antedote for the troublesome side effects of the AI's.  [Troublesome for me primarily b/c of my osteoporosis.]

    Deborah

    · Share on FacebookShare on Twitter
  • moodyk13
    moodyk13 Member Posts: 1,180
    edited February 2009

    Nancyb7912, hollyann, & jude14, I got you all added to the roll call.  Please check to see that I got it correct.  Thanks so much for joining in and sharing your informantion w/everyone.  It is very interesting to see scores / %'s and tx's isn't it.  Sorry it took so long to get you added, my little girl is STILL in the hospital so I was a bit occupied.

    Chris I am so sorry about your mother!  She was soooo young!!!!  It breaks my heart to hear stories like yours and now you yourself are having to deal with such a terrible disease.  I pray that the advances which have been made since your mother's illness will give you a much more positive outcome.  If there is anything any of us can ever do for you in addition to prayers, please let me/us know! 

    · Share on FacebookShare on Twitter
  • MiniMe
    MiniMe Member Posts: 1
    edited February 2009

    Moody, prayers for you and yours during this difficult time and I hope all is going well for your daughter.

    I've been lurking the boards since my diagnosis in Nov. '08 and this is my first post.  I joined the TaylorX trial and recieved my results Jan. 29. Here is my info:

    5% = 5 score (MiniMe- LM, SNB, TMXF)

    A special thanks to everyone who has posted on these boards, I couldn't have made it with out you all!  Smile

    · Share on FacebookShare on Twitter
  • sarabhealed
    sarabhealed Member Posts: 179
    edited February 2009

    Thanks for this thread...

    My score was 14 which translated into a 9% chance with Tamoxifen--lower than that with AI's--from what I can gather it would be a 14% risk without either...I tried and hated the drug route because of side effects. I am hoping to achieve the same kind of reduction through vigorous exercise, reduction of body fat, eating smart and appropriate supplements like calcium d-glucarate. So far so good and I am in better shape than I ever have been. Good luck to all with these tough decisions!

    · Share on FacebookShare on Twitter
  • moodyk13
    moodyk13 Member Posts: 1,180
    edited February 2009

    MiniMe & sarabhealed I got you added to the roll call, plz check to make sure it is accurate.  Welcome to the thread, although I wish there were no reason for any of us to be here!

    Thanks for all the love and prayers for my little girl!  Here is the update I just posted on her prayer thread:

    WE ARE HOME!!!!!  Praise God, we got home around 1:00 today.  She had a pretty good day yesterday.  She ate cocoa puffs cereal, a ham & cheese sandwich, and about 8oz frozen yogurt.  May not sound like much, but considering what she has been through, we'll take every bite with gratitude and praise.

    It was probably a little bit much as about 10:30 last night she began to get nauseaous again.  She held it off till about 12:30am then we went ahead and called the nurse in.  She woke up about 5:30am sick again, we got more meds, and she has been good every since.  I am not 100% convinced they have diagnosed her correctly, but she is still so, so much better than last week.

    I am not gonna lie, I was terrified I was going to lose her last week.  Her G.I. doctor told us Friday, after he had put in her feeding tube, that he couldn't believe she had made it that long with out food.  She had deteriorated to the point of being in critical condition.  She was a whopping 77 lbs this morning!  I am so thankful God is allowing me more time with her.  I am humbled beyond measure that God wasn't ready to call her home!

    Thanks again for all the love, prayers, calls, emails, and PM's.    Maybe all these surprise illnesses are behind us now...................I say this because I didn't even celebrate my one year anniversary as a BC survivor on 2/1/09!  I am going to white out February on the calendar........

    · Share on FacebookShare on Twitter
  • danigirl
    danigirl Member Posts: 9
    edited February 2009

    danigirl--LMP, SNB, Er+. HER-,stage l, no lymph nodes, grade 2 : oncotype :29 6 A/C, Rad., Tamoxifen

    · Share on FacebookShare on Twitter
  • moodyk13
    moodyk13 Member Posts: 1,180
    edited February 2009

    danigirl,  I got you added.  Thanks for participating!

    · Share on FacebookShare on Twitter
  • ann-idiot
    ann-idiot Member Posts: 128
    edited February 2009

    New to this site, my "lingo" might be a bit off but here's my info: Multifocal ILC, ER+ PR+ HER2- Stage 2A (depending on who you ask) Grade 1, Tumor Size????(they just say multifocal) Only the Sentinnel Node was Positive, other 13 nodes removed Negative. Oncotype Score 11 HOWEVER I'm just on the cusp of being menopausal (age 45) and my Dr wants me to take Chemo (TC 4 cycles every 3 weeks) Still not sure the benefits of chemo outweigh the negative effects in my case.

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2009

    Moody

    My stats are: IDC, 2.4 cm, er+(95%) pr+(55%), snb (no nodes involved), lumpectomy, clear margins, 37 rad treatments, no chemo, onco score of 12, recurrence risk 8%.

    This has turned into a wonderful thread and very informative...thank you for starting it.

    Best wishes

    Jule

    · Share on FacebookShare on Twitter
  • moodyk13
    moodyk13 Member Posts: 1,180
    edited February 2009

    ann I added you as "SNB, T/C x 4)  if you had or will have any other tx let me know so I can add it too.  Thnx for adding your info!

    jpann, hope you are well today.  I got your infor updated, thanks for coming back to include it!

    · Share on FacebookShare on Twitter
  • marymoir
    marymoir Member Posts: 245
    edited February 2009

    Here's my data for the mix:

    Oncotype Dx score = 32

    Recurrence Risk = 22%

    Treatment = LMP; SNB; 4 rounds T/C (in progress); radiation & tamoxifen to come

    Thanks for compiling all this!

    · Share on FacebookShare on Twitter
  • Jasminn
    Jasminn Member Posts: 51
    edited February 2009

    I can now be added too, since I decided on my treatment today:

    Oncotype DX score = 6 (5% recurrence risk)

    Surgery - Bilat mast (left prophylactic) with SNB on both sides. 

    Treatment - Tamoxifen and Lupron

    Really considered chemo because of the micromet in 1 node, but got 3 opinions and all said it's overkill with such a low Oncotpe score.  Risks far outweigh the benefits.  Hope they're right!

    · Share on FacebookShare on Twitter
  • moodyk13
    moodyk13 Member Posts: 1,180
    edited February 2009
    mary and jasminn welcome to the roll call, I got your info added.  We appreciate you sharing your info with everyone, I am sure it is helpful to all reading.  Please check to make sure I got everything correct.
    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2009

    Dear Moodyk13, hope you are well.  Happy Valentine's Day! 

    Thanks so much for starting this thread.  I was diagnosed in 2007 and I could not get anyone on this website to discuss the Oncotype except one or two people.  Please add my info to the thread.

    6%=11 SNB (NEG), BLM w/o R, RADS x 35, AMDX, HSTY, 2.2 cm IDC, Grade1, ER++++, PR+++, HER Neg, DX 2007

    Melissa  

    · Share on FacebookShare on Twitter
  • webwriter
    webwriter Member Posts: 535
    edited February 2009

    Thinking of you and your little one, MoodyK. BTDT and can confirm there is no terror like that of your baby dehydrating before your eyes. My Monkey is just fine a year later. Yours will be too. keep the Faith.

    · Share on FacebookShare on Twitter
  • klp
    klp Member Posts: 1,770
    edited February 2009

    Moodyk13

    I started Tamoxifen 4 days ago so can you add that information to what I've given you already?

    Wonderful news that your little girl is on the road to recovery..God Bless

    · Share on FacebookShare on Twitter
  • Seabee
    Seabee Member Posts: 557
    edited February 2009

    ann-idiot--If you don't mind my asking, what does your onc think being on the cusp of menopause has to do with the price of tea in china? If I were you, with an oncotype score of 11 and a grade 1 tumor, I'd at least get a second opinion before I considered doing chemo.  Could be that one node is bothering him, since in the pre-oncotype world one positive node meant chemo.

    · Share on FacebookShare on Twitter
  • moodyk13
    moodyk13 Member Posts: 1,180
    edited February 2009

    Aug & klp, I got you both added/updated--THANKS!!!

    webwriter thanks for your sweet note, my daughter is doing really good!  She is still having a "twinge" of nausea every day, but nothing compared to the last 3 weeks and very tolerable.  I figure as her little tummy continues to digest food, these twinges will go away.

    · Share on FacebookShare on Twitter
  • Jasminn
    Jasminn Member Posts: 51
    edited February 2009

    moody - I forgot to add reconstruction to my stats....sorry...bilat with recon.

    ann-idiot - we have almost the same diagnosis - miltifocal ILC, stage IIa, one node +, but I was Grade II, and mu Oncotype was 6.  I'm 43 and probably perimenopausal, as I've had irregular periods for a few years now.  I got 3 onc opinions, and all 3 said I'm nuts for considering chemo.  Nobody mentioned anything regarding possibly being on the cusp of menopause and any effects from it - all just sad tamox, and main onc said Lupron too as a slightly more aggressive treatment.  I am very interested in your oncs reasoning behind things as I am in the same boat.

    · Share on FacebookShare on Twitter
  • moodyk13
    moodyk13 Member Posts: 1,180
    edited February 2009
    Thanks Jas I fixed it. Laughing
    · Share on FacebookShare on Twitter
  • Seabee
    Seabee Member Posts: 557
    edited February 2009

    Jasminn--I agree with your oncos. With a recurrence score of 6, or 11 for that matter, you'd need a really compelling reason to undergo a course of chemotherapy, and I don't know what that reason would be.

    · Share on FacebookShare on Twitter
  • Hood1980
    Hood1980 Member Posts: 537
    edited February 2009

    Again 2 out of the 3 oncs I went to (& even the 3rd said chemo wasn't the wrong answer, especially since the oncotype was developed for IDC and they are finding out differences between IDC & ILC) said to do chemo.  I had ILC over 4.5 cms.  Also the younger you are, the more they want to treat you aggressively.  I don't regret doing chemo with an oncotype of 8.

    · Share on FacebookShare on Twitter
  • JustSaying
    JustSaying Member Posts: 73
    edited February 2009

    I had a score of 18 (12% recurrence) and no positive nodes, stage 1, largest tumor 1.2cm and grade 1. The way my onc explained it, she likes to look at the whole picture, meaning the oncotype score as well as the clinical norms that had always been used before oncotype was available.

    Therefore I can see where someone with a low oncotype yet a large tumor might find that the oncs are recommending chemo - in that case, probably due to the tumor size. In the past, they would have likely automatically given chemo to anyone with a tumor that size. So if you come in as a "no brainer" for chemo on either the clinical OR the oncotype side of the equation, I bet most oncs will recommend chemo. However if you come in on the fence on one and under the fence on the other, they may say no to chemo. That's my current take on this situation, anyhow.

    · Share on FacebookShare on Twitter

Categories